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# Huntington's Disease Society of America

Family Is Everything

## Sitemaps

- [XML Sitemap](https://hdsa.org/sitemap.xml): Contains all public & indexable URLs for this website.

## Posts

- [This Week in Huntington's Disease Research](https://hdsa.org/blog/)
- [HDBuzz on minibrains, National Suicide Prevention Week, Founders Day](https://hdsa.org/blog/hdbuzz-on-minibrains-national-suicide-prevention-week-founders-day/) - What can mini brains tell us about HD? HDBuzz has the breakdown; National Suicide Prevention WeekCelebrate Founder’s Day with HDSA!
- [Clinical trials and Disability, POWERHD, Online Survey](https://hdsa.org/blog/clinical-trials-and-disability-powerhd-online-survey/) - Clinical trial Participation and Disability; What’s POWER-HD? Dr. Arik Johnson and Katie Jackson share; Online Survey: Insurance for people with HD
- [Research Updates, Make-A-Will, Career Milestones](https://hdsa.org/blog/research-updates-make-a-will-career-milestones/) - 2024 HDF Milton Wexler Biennial Symposium Updates, National Make-A-Will Month, 2018 HDSA Berman-Topper Fellow joins Faculty at University of Toronto
- [Support Innovation in HD Drug Development, HD History ](https://hdsa.org/blog/support-innovation-in-hd-drug-development-hd-history/) - Online Survey: Supporting Innovation in HD Drug Development; HDSA Externally-led Patient Focused Drug Development Meeting, This Month in HD History
- [2024 HDSA Research Fellows, HDSA Convention Recap](https://hdsa.org/blog/2024-hdsa-research-fellows-hdsa-convention-recap/) - HDSA awards two Berman-Topper HD Career Development Fellowships and six Donald A. King Summer Research Fellowships; Convention highlights and sessions online
- [uniQure Updates, SkyHawk Updates, NIH ENGAGE](https://hdsa.org/blog/uniqure-updates-skyhawk-updates-nih-engage/) - uniQure shares update on AMT-130, SkyHawk Therapeutics announces early positive results of SKY-0515, NIH Announces ENGAGE Initiative
- [SELECT-HD Update, PIVOT-HD Update, PT Guidelines](https://hdsa.org/blog/select-hd-update-pivot-hd-update-pt-guidelines/) - Wave Life Sciences shares SELECT-HD Update; HD Buzz on PIVOT-HD; New PT Guidelines from the EHDN
- [PTC518 Update, POWER-HD, The HDSA Podcast](https://hdsa.org/blog/ptc518-update-power-hd-the-hdsa-podcast/) - PTC Therapeutics shares update on PTC-518 PTC Therapeutics announced today results from PIVOT-HD, the Phase 2 study of PTC518 for HD. This experimental huntingtin-lowering therapy is a pill taken by mouth and is a splicing modulator, meaning that PTC518 interferes with and prevents huntingtin protein production by inserting a premature stop sign into the body’s message
- [Sage Update, HD Research Webinar, Blood Brain Barrier](https://hdsa.org/blog/sage-update-hd-research-webinar-blood-brain-barrier/) - Sage Therapeutics announces SURVEYOR update; HD Research Webinar TODAY: HDF talks ageing; Brain Bouncers: HD Buzz on the Blood-Brain Barrier
- [Convention, uniQure news, HTT-lowering & CAG Expansion, Talking HD  ](https://hdsa.org/blog/convention-uniqure-news-htt-lowering-cag-expansion-talking-hd/) - HDSA’s 39th Annual Convention; uniQure granted RMAT designation for AMT-130; HTT-lowering and Somatic Expansion: Can they be treated simultaneously? Community advocates talk about HD
- [International Clinical Trials Day, Postcard from Palm Springs, MyHDStory Results](https://hdsa.org/blog/international-clinical-trials-day-postcard-from-palm-springs-myhdstory-results/) - This Week in Research History: International Clinical Trials Day May 20th is recognized as Clinical Trials Day to commemorate what is regarded as the first randomized clinical trial initiated by James Lind on May 20, 1747. In this momentous study, Lind analyzed possible treatments of scurvy in shipmates aboard the HMS Salisbury of the British
- [HD Awareness Day, Today in HD History , HDBuzz at HDA](https://hdsa.org/blog/hd-awareness-day-today-in-hd-history-hdbuzz-at-hda/) - Celebrating International HD Awareness Day; This Month in HD History; Next Week at HDA: "A Conversation with HDBuzz" webinar
- [Brain Donation & Mental Health Awareness, CHDI online](https://hdsa.org/blog/brain-donation-mental-health-awareness-chdi-online/) - Brain Donation Awareness Day; Mental Health Awareness Month; 2024 CHDI Therapeutics Conference Presentations Now Available Online!
- [HD Awareness Month, INGREZZA Update, Research Webinar](https://hdsa.org/blog/hd-awareness-month-ingrezza-update-research-webinar/) - Happy HD Awareness Month! Neurocrine Biosciences announces approval of new formulation of INGREZZA, Upcoming Research Webinar: Drugs and Trials for HD
- [New Research on CAGs, The HDSA Podcast, Online Surveys](https://hdsa.org/blog/new-research-on-cags-the-hdsa-podcast-online-surveys/) - HDBuzz: “How many is too many?” New research on CAGs, The HDSA Podcast is back! spotlight on HD science, Online Surveys: Participate in HD Research from home!
- [SAGE-718 on Help4HD, TEVA on AUSTEDO, PolyQ research](https://hdsa.org/blog/sage-718-on-help4hd-teva-on-austedo-polyq-research/) - Help4HD discusses SAGE-718; TEVA gathers more data about AUSTEDO; The state of PolyQ research: a review of the landscape
- [Tracks of HD tears, Genetic testing impacts, HD history](https://hdsa.org/blog/tracks-of-hd-tears-genetic-testing-impacts-hd-history/) - Tracks of HD Tears: HD Buzz on new markers of HD progression Researchers from Germany and the Netherlands have been developing a new tool to investigate HD in a non-invasive way. The collaboration between academic researchers and pharmaceutical companies found that huntingtin protein was detectable in human tears. Biomarkers like huntingtin protein are things we
- [Talk on Tau, Research Webinar, HD on TEDxBath Stage](https://hdsa.org/blog/talk-on-tau-research-webinar-hd-on-tedxbath-stage/) - The Talk on Tau: Cognitive changes in HD; Upcoming Research Webinar: Gene Therapies with the HDF; Community Advocate Shares Story: Charles Sabine at TEDxBath
- [2024 Human Biology Project Launch, HD History, The Buzz on CAG's](https://hdsa.org/blog/2024-human-biology-project-launch-hd-history-the-buzz-on-cags/) - HDSA Launches 2024 HD Human Biology Project Letter of Intent; This Week in HD History; The Buzz on CAG-repeat expansion
- [This Week in HD Research, Survey Opportunities](https://hdsa.org/blog/this-week-in-hd-research-survey-opportunities/) - Discovery of the HD Gene and HD Gratitude Day; Online Surveys: Rare Patient Voice and Exploring the Intersection of Fashion and Identity for People with HD
- [Pridopidine update, HDBuzz on Brains, Interview Study](https://hdsa.org/blog/pridopidine-update-hdbuzz-on-brains-interview-study/) - Update from Prilenia: Pridopidine for HD; The Buzz on brains: What does HD do to cells? Interview Study: Patient Supported Approaches to Gene Editing (PaSAGE)
- [CHDI Updates: Experts and Advocates; Research Webinar](https://hdsa.org/blog/chdi-updates-experts-and-advocates-interview-study/) - HDBuzz Updates from the 2024 HD Therapeutics Conference; An advocate’s take on the CHDI conference; Upcoming HDF Research Webinar
- [Rare Disease Day, CHDI, Convention Scholarships](https://hdsa.org/blog/rare-disease-day-chdi-convention-scholarships/) - Celebrate Rare Disease Day with HDSA on 2/29; Next Week in HD Research: CHDI’s 18th Annual HD Therapeutics Conference; HDSA Convention Scholarship Apps due 3/1
- [2024 HDSA COE Awards, CRISPR News, Research Webinar](https://hdsa.org/blog/2024-hdsa-coe-awards-crispr-news-research-webinar/) - HDSA Names 57 Centers of Excellence and 11 Partner Sites in 2024; What’s the Buzz on CRISPR?; HDF Research Webinar: Using CRISPR for HD Drug Development
- [Convention Scholarships, Research Webinar, DNA Repair](https://hdsa.org/blog/convention-scholarships-research-webinar-dna-repair/) - HDSA Convention Scholarship Applications due March 1st; HDSA Research Webinar Next Week! uniQure discusses AMT-130; Help4HD: DNA Repair with Joseph Hamilton
- [Research Webinar with uniQure, Online Surveys](https://hdsa.org/blog/research-webinar-with-uniqure-online-surveys/) - uniQure joins HDSA for an update on AMT-130; Online Surveys: Dietary Habits in HD, Attitudes toward Genetic Testing, Experiences with Psychotherapy
- [Neurocrine on INGREZZA, HD-CHARGE, HDBuzz on family planning](https://hdsa.org/blog/neurocrine-on-ingrezza-hd-charge-hdbuzz-on-family-planning/) - Neurocrine discusses INGREZZA with HDSA, Jamie Hamilton discusses costs of HD with Lauren Holder, HDBuzz on Fertility Technology and Decision-Making
- [Research Participation, Trial Stats, Upcoming Webinar](https://hdsa.org/blog/research-participation-trial-stats-upcoming-webinar/) - Get Connected with HD Research Participation Opportunities; Understanding Clinical Trials: What's a P-value? Upcoming Research Webinar: HDF on History and Hope
- [HDSA Convention, HDSA-funded research spotlight, New research partnerships](https://hdsa.org/blog/hdsa-convention-hdsa-funded-research-spotlight-new-research-partnerships/) - Registration for HDSA’s 39th Annual Convention is now open; HDSA Human Biology Fellow publishes work on brain connectivity in HD; New HD Research on the Horizon
- [HDSA Research Fellowships, Clinical Trial Updates, Survey](https://hdsa.org/blog/hdsa-research-fellowships-clinical-trial-updates-survey/) - HDSA Berman-Topper and Donald King Fellowship applications open; uniQure shares positive data update; Roche community letter; At-home interview for people who have had psychotherapy
- [Tominersen development continues, Research participation](https://hdsa.org/blog/tominersen-development-continues-research-participation/) - Continued development of Roche’s huntingtin-lowering drug tominersen; More opportunities to participate in HD research opportunities
- [Research Fellowships, The Marker, Somatic Expansion](https://hdsa.org/blog/research-fellowships-the-marker-somatic-expansion/) - HDSA Awards Six 2023 HD Human Biology Project Fellowships; The Marker 2023: HDSA’s Annual Research Report; HDBuzz: Understanding Somatic Expansion
- [Research Participation Opportunities & Upcoming Webinar](https://hdsa.org/blog/research-participation-opportunities-upcoming-webinar/) - Online Surveys: Understanding daily impacts of HD; Attitudes towards genetic testing; Improving digital tablet design & accessibility; Upcoming Research Webinar
- [HSG Annual Meeting, HDF Webinar, Genetic Counselor Day](https://hdsa.org/blog/hsg-annual-meeting-hdf-webinar-genetic-counselor-day/) - Updates from the Huntington Study Group Annual Meeting; HDF Research Webinar TODAY: “Brains in a Dish," Happy Genetic Counselor Awareness Day!
- [Giving Tuesday, HD Out-of-the-Box, Somatic Instability](https://hdsa.org/blog/giving-tuesday-hd-out-of-the-box-somatic-instability/) - Celebrate Giving Tuesday with HDSA! Beyond Huntingtin-lowering: How else might we be able to treat HD? HDBuzz and HDYO on Somatic Instability
- [VICO Therapeutics, INGREZZA update, HD Faculty Opening](https://hdsa.org/blog/vico-therapeutics-ingrezza-update-hd-faculty-opening/) - VICO Therapeutics on Help4HD Podcast, Updates on INGREZZA and upcoming research webinar, Western University of Canada seeks HD Faculty member
- [HD History, Genetic Testing, HD Voices](https://hdsa.org/blog/hd-history-genetic-testing-hd-voices/) - This Week in HD History; What motivates someone to seek anonymous genetic testing; Improving medical products and services for people with HD
- [Research Participation, HD Research 101, SAGE-718 News](https://hdsa.org/blog/research-participation-hd-research-101-sage-718-news/) - Join HD research: Online surveys, observational studies, & more; Overcoming bumps on the way to HD therapies; FDA grants orphan drug designation to SAGE-718
- [Plants in HD, Research Webinar, GENERATION HD2 podcast](https://hdsa.org/blog/plants-in-hd-research-webinar-generation-hd2-podcast/) - Could plants hold seeds for new HD treatments? HDBuzz reports; HDF Research Webinar: “Brains in a Dish;" Help4HD Podcast: Dr. Rita Gandhy talks GENERATION HD2
- [HD Buzz on MSH3, HDSA COEs, Research Study](https://hdsa.org/blog/hd-buzz-on-msh3-hdsa-coes-research-study/) - HDBuzz reports on all the hype about MSH3; 2024 HDSA Center of Excellence application open; AI-Analysis of Handwriting for Early Detection of Movement Disorders
- [FDA launches START; Roche, Ionis partner; Mental health](https://hdsa.org/blog/fda-launches-start-roche-ionis-partner-mental-health/) - FDA Launches the START Pilot Program; Roche and Ionis partner in Huntington's and Alzheimer's Disease drug development; National Depression Screening Day
- [AMT-130 in the News, Research Webinar, HD History](https://hdsa.org/blog/amt-130-in-the-news-research-webinar-hd-history/) - AMT-130 highlighted in Drug Discovery News; Research Webinar Today: Hereditary Disease Foundation; This Week in HD History: Mutant Huntingtin Aggregates
- [Interview Study, HD History, Participant's Experience](https://hdsa.org/blog/interview-study-hd-history-participants-experience/) - Paid Interview Study with Design Science; This Week in HD History: First Animal Models of HD; Help4HD Podcast Highlights a Research Participant’s Experiences
- [Founder's Day, Suicide Prevention, & My VIBE Podcast](https://hdsa.org/blog/founders-day-suicide-prevention-my-vibe-podcast/) - HDSA Founder’s Day of Giving; National Suicide Prevention Week; My VIBE Podcast: PTC Therapeutics highlights HD stories from HDSA's Annual Convention
- [Genetic Modifiers, CSF Flow, and Sleep in HD](https://hdsa.org/blog/genetic-modifiers-csf-flow-and-sleep-in-hd/) - HD Buzz on Genetic Modifiers in HD; How does CSF flow change in HD?Sleep in HD: A special edition of the Journal of Huntington’s Disease
- [Leaving a Legacy, HD Drug Delivery, Valbenazine for HD](https://hdsa.org/blog/leaving-a-legacy-hd-drug-delivery-valbenazine-for-hd/) - Leaving a Legacy: Brain Donation in HD Webinar online; Delivering HD Drugs to the brain; An Advocate’s take on FDA approval of Valbenazine for HD chorea
- [Valbenazine Approved, HD History, Gene therapy success](https://hdsa.org/blog/valbenazine-approved-hd-history-gene-therapy-success/) - FDA approves Neurocrine's Valbenazine (INGREZZA) to treat HD chorea; This Month in HD History; Gene therapy sees early success in treatment of Rett Syndrome
- [Leaving a Legacy, HD Advocates, vUHDRS](https://hdsa.org/blog/leaving-a-legacy-hd-advocates-vuhdrs/) - Leaving a Legacy: National Make a Will Month & Brain Donation Webinar; HD Community Advocate Shares Her Story; HSG Announces Positive Topline Results for vUHRDS
- [Research Webinar, Renewing HD brain cells, HD History](https://hdsa.org/blog/research-webinar-renewing-hd-brain-cells-hd-history/) - HDSA Research Webinar: Leaving a Legacy, Brain Donation for HD Research; HDBuzz on Transplanting cells in HD mice brains; This Month in HD History
- [Postcard from Dubrovnik, History of Observational Studies, Cell Transplants to Treat HD](https://hdsa.org/blog/postcard-from-dubrovnik-history-of-observational-studies-cell-transplants-to-treat-hd/) - Postcard from Dubrovnik In April of 2023, more than 400 scientists from around the world met in Dubrovnik Croatia for the annual HD Therapeutics conference hosted by CHDI Foundation. Each year CHDI creates a video summarizing the conference that is directed at non-scientists. Charles Sabine, British journalist, gene carrier, and HD advocate, hosts the video,
- [HD Trialfinder, FOCUS-HD, & Young HD Investigators](https://hdsa.org/blog/hd-trialfinder-focus-hd-young-hd-investigators/) - HD Trialfinder: Sign up or Re-Match Today; FOCUS-HD: How does HD impact functional abilities; Help4HD & HDF Young Investigator Series: The Gut & HD
- [Summer Survey Extravaganza: Participate today!](https://hdsa.org/blog/summer-survey-extravaganza-participate-today/) - What motivates someone to seek genetic testing? What motivates someone to seek anonymous genetic testing? ow does psychological therapy affect people with HD?
- [Convention Videos Live, NIH Funds HD, AD Drug Approval](https://hdsa.org/blog/convention-videos-live-nih-funds-hd-ad-drug-approval/) - 2023 HDSA Annual Convention content available online, NIH Awards $22million to study of gene therapy for HD, FDA Grants Approval to Alzheimer’s drug, Leqembi
- [Research from HDSA Fellows, Global HD News](https://hdsa.org/blog/research-from-hdsa-fellows-global-hd-news/) - Publications from HDSA Berman-Topper Fellows Dr. Rachel Harding received the 2018 Berman-Topper Fellowship for her work on the structure of the huntingtin protein. She is now a Principal Investigator at the Structural Genomics Consortium at the University of Toronto where she leads her own group and continues to study huntingtin and its biological “dance
- [Participate in Research, HD History, Scientific Optimism](https://hdsa.org/blog/participate-in-research-hd-history-scientific-optimism/) - Participate in HD Research: HD Data Collection Initiative, HD Trialfinder, and more Deciding whether to participate in research and what types of research studies are right for you are very personal decisions. Whether you are joining a clinical research study to test a new drug candidate for HD, showing up to your annual Enroll-HD
- [Clinical Research Updates, CHDI Therapeutics Conference, Up & Coming HD Scientists](https://hdsa.org/blog/clinical-research-updates-chdi-therapeutics-conference-up-coming-hd-scientists/) - Clinical Trials News: positive updates from uniQure and PTC Therapeutics This week, we had two updates from major players in HD research, uniQure and PTC Therapeutics, on their investigational huntingtin-lowering therapies, AMT-130 and PTC518, respectively. These companies have been in the headlines in the last year not only for their unique approaches to huntingtin-lowering,
- [Disability Umbrella, Research Awards, & Brain Health](https://hdsa.org/blog/disability-umbrella-research-awards-brain-health/) - The Disability Umbrella with Allison Bartlett; Prof Sarah Tabrizi Awarded 2023 Arvid Carlsson Award; CDNF: Can it support brain health in HD?
- [HDSA Convention, Research Participation, HDF Webinar](https://hdsa.org/blog/hdsa-convention-research-participation-hdf-webinar/) - Thank you for joining HDSA’s 38th Annual Convention! Participate in Research: HD Data Collection Initiative and HD Trialfinder; HDF Research Webinar: June 20th
- [Research Fellows, HD Awareness, Annual Convention](https://hdsa.org/blog/research-fellows-hd-awareness-annual-convention/) - HDSA Awards 2023 Berman-Topper Family HD Career Development Fellowship, HD Awareness: Global HD Experiences, HDSA’s 38th Annual Convention Begins next week
- [Research Support, HD Data Collection Initiative, Clinical Trials Day  ](https://hdsa.org/blog/research-support-hd-data-collection-initiative-clinical-trials-day/) - Supporting HD families through the ups and downs of clinical trials, HDSA Launches HD Data Collection Initiative with RARE-X, International Clinical Trials Day
- [HD & Mental Health, Research Webinar, 2023 trials](https://hdsa.org/blog/hd-mental-health-research-webinar-2023-trials/) - May Awareness: Mental Health and HD, Upcoming HDF Research Webinar: Does Huntington’s Disease affect sleep?, Annexon to launch Phase 2/3 trial of ANX005 in 2023
- [HD Research Webinar, HD Awareness, & Youth Research](https://hdsa.org/blog/hd-research-webinar-hd-awareness-youth-research/) - HDSA & HSC Research Webinar TOMORROW, #LetsTalkAboutHD in HD Awareness Month, Research Participation as a Young Person: Check out the NYA Research Page!
- [CHDI Therapeutics Conference: Prilenia shares data from the PROOF-HD trial ](https://hdsa.org/blog/chdi-therapeutics-conference-prilenia-shares-data-from-the-proof-hd-trial/) - Prilenia shares top-line data from the PROOF-HD study of pridopidine in people with HD at the Annual CHDI Therapeutics Conference in Dubrovnik, Croatia
- [Thank you Volunteers, Buzz on brain cells, Next Week in HD](https://hdsa.org/blog/thank-you-volunteers-buzz-on-brain-cells-next-week-in-hd/) - Thank you, HD Research Volunteers! HD Buzz on brain cells in HD, Next Week in HD Research: CHDI’s 18th Annual HD Therapeutics Conference
- [Today in HD History, HDSA Disability Advocacy Survey, Webinar on Brain Imaging in HD](https://hdsa.org/blog/today-in-hd-history-hdsa-disability-advocacy-survey-webinar-on-brain-imaging-in-hd/) - Today in HD history On April 13th, 1872, George Huntington published a paper called “On Chorea,” describing the disease that would come to be known by his name. He was a medical student studying at Columbia University, and had grown up on Long Island, New York, where both his father and grandfather were physicians. In
- [HD Buzz on the Brain, Vico begins dosing, New Podcast](https://hdsa.org/blog/hd-buzz-on-the-brain-vico-begins-dosing-new-podcast/) - How does an HD brain find balance? HD Buzz covers the latest clues, Vico Therapeutics announces first patient dosed in study of VO659, The HDSA Podcast
- [PROOF-HD, Rare Patient Voice, This Week in HD History](https://hdsa.org/blog/proof-hd-rare-patient-voice-this-week-in-hd-history/) - Last Participant Completes the PROOF-HD Study, Compensated Research Survey Opportunities Through Rare Patient Voice, This Week in HD History
- [HD gene discovery, Genetic Testing Motivation survey, Novartis News](https://hdsa.org/blog/hd-gene-discovery-genetic-testing-motivation-survey-novartis-news/) - This Month in HD Research: HD gene discovery, Survey: Motivations behind predictive genetic testing; Novartis Announces positive long-term data for Zolgensma
- [Human Biology Project, HDBuzz on Help4HD, HD Research Pipeline](https://hdsa.org/blog/human-biology-project-hdbuzz-on-help4hd-hd-research-pipeline/) - Now Accepting LOIs for HDSA's HD Human Biology Project Fellowship, Help4HD and the Editors of HD Buzz on Genetic Modifiers of HDHD Research in the Pipeline
- [Research Fellowships, HDSA Convention, HDF Webinar](https://hdsa.org/blog/research-fellowships-hdsa-convention-hdf-webinar/) - HDSA Berman-Topper HD Career Development Fellowship due March 17th, HDSA Convention Scholarships, HDF Webinar: “HD and Cardiac Health: Is there a Connection?”
- [The HDSA Podcast, ChANGE-HD, This Week in HD History](https://hdsa.org/blog/the-hdsa-podcast-change-hd-this-week-in-hd-history/) - This Month on The HDSA Podcast with Louise Vetter, ChANGE HD: Research to Improve Our Understanding of the HD Brain, This Week in HD History
- [Rare Disease Day, Teva's Austedo-XR Approval, Research Survey](https://hdsa.org/blog/rare-disease-day-tevas-austedo-xr-approval-research-survey/) - Celebrate Rare Disease Day with HDSA on February 28th, Teva Announces FDA Approval for Austedo-XR, Online Research Survey on Digital Data Collection
- [HDSA Centers of Excellence, Research Webinar, GENERATION HD2](https://hdsa.org/blog/hdsa-centers-of-excellence-research-webinar-generation-hd2/) - HDSA Names 56 Centers of Excellence and 11 Partner Sites in 2023; Research Webinar: Novartis Discusses the VIBRANT-HD; GENERATION HD2: What do we know so far?
- [HDSA Year in Review, FOCUS-HD, HDSA Research Spotlight](https://hdsa.org/blog/hdsa-year-in-review-focus-hd-hdsa-research-spotlight/) - HDSA publishes 2022 Year in Review, FOCUS-HD: CHDI seeks to better understand functional changes in HD, HDSA Researcher Spotlight: Dr. Yifat Glikmann-Johnston
- [Research Webinars, HDSA Podcast, and HD in the Brain](https://hdsa.org/blog/research-webinars-hdsa-podcast-and-hd-in-the-brain/) - HDSA Presents: February Research Webinars with Roche and Novartis This month, HDSA has not one, but TWO research webinars lined up to talk about clinical trial news. At 12PM ET on February 8th, the HDSA team will be joined by Roche/Genentech representatives Lauren Boak, Lifecycle Leader in Neurosciences and Rare Diseases, and Dr. Peter
- [HDSA Research Webinar & Research Opportunities](https://hdsa.org/blog/hdsa-research-webinar-research-opportunities/) - HDSA Research Webinar with Roche on GENERATION HD2, Want to participate in HD research? Check out HDTrialfinder.org and HDSA-vetted online studies
- [HDSA Convention Registration, Clinical Trial Strategy, HDF Webinar Series](https://hdsa.org/blog/convention-registration-clinical-trial-strategy-hdf-webinar-series/) - Registration for the 38th Annual HDSA Convention is now open! Join us in New Orleans, Louisiana, from June 1-3 for the 38th Annual HDSA Convention! To reserve your spot today or learn more about Convention scholarships, click here. Convention will feature lots of research programming, including a showcase of currently recruiting clinical trials, an
- [Roche/Genentech Community Letter and More Survey Study Opportunities in the New Year ](https://hdsa.org/blog/roche-genentech-community-letter-hdsa-webinar-and-more-survey-study-opportunities-in-the-new-year/) - Roche/Genentech Community Letter: GENERATION HD2 Study Now Open On January 11th, Roche/Genentech shared a community letter stating that the GENERATION HD2 study of tominersen has launched. This is a new clinical trial of tominersen, a spinally delivered huntingtin-lowering drug that was previously tested in the GENERATION HD1 study. This study was unexpectedly terminated in 2021
- [Clinical Trials, Economic Impact of HD, & HD Advocacy](https://hdsa.org/blog/clinical-trials-economics-of-hd-hd-advocacy/) - Clinical Trials Corner: End of Year Update from Dr. Ed Wild; What is the economic burden of HD? Researchers look to find out; HD Advocacy: Taking Action in 2023
- [Happy Holidays from HDSA: Research Wrap-Up, Online Surveys & More](https://hdsa.org/blog/happy-holidays-from-hdsa-research-wrap-up-online-surveys-more/) - AnResearch Wrap-Up, A Realistic and Unapologetic View of HD: Exploring Impact of Gene Veritas, Home for the Holidays? Participate in Online Research!
- [Ionis/Roche Present Trial Data at World’s Largest Neurology Conference](https://hdsa.org/blog/ionis-roche-present-trial-data-at-worlds-largest-neurology-conference/) - Huntington’s disease was featured this week at the American Academy of Neurology (AAN) Conference, where 12,000 medical professionals gathered for a yearly forum on neurology research. The mainstage presentation, in front of a huge audience of doctors and scientists, featured the most recent positive results from the Phase 1b/2a trial of the huntingtin-lowering drug from
- [HDBuzz, STAT News, Ask the Scientists, & More ](https://hdsa.org/blog/hdbuzz-covers-latest-update-from-novartis-stat-news-on-understanding-hd-and-the-search-for-solutions-today-ask-the-scientists-anything-webinar-compensated-research-survey-opportunit/) - HDBuzz on Update from Novartis, STAT News on Understanding HD, Ask the Scientists Anything Webinar, Compensated Research Opportunity via Rare Patient Voice
- [HDBuzz on Novartis, HDSA Research Webinar, STAT News on HD Research, Online Survey](https://hdsa.org/blog/hdbuzz-on-novartis-hdsa-research-webinar-stat-news-on-hd-research-online-survey/) - HDBuzz Covers Latest Update from Novartis Last week, Novartis shared that they will end development of branaplam for HD. Dosing of branaplam in the Phase 2b VIBRANT-HD study was initially suspended in August of this year due to safety concerns identified by the study’s independent Data Monitoring Committee. This group ultimately concluded that the
- [Novartis Shares Update on VIBRANT-HD, Ask the Scientists...Anything, and Launch of HDSA Research Fellowship Applications](https://hdsa.org/blog/novartis-shares-update-on-vibrant-hd-ask-the-scientists-anything-and-launch-of-hdsa-research-fellowship-applications/) - Novartis Shares Update on VIBRANT-HD, Research Webinar: Ask the Scientists...Anything! 2023 Berman-Topper and Donald A. King Research Fellowships
- [Thank You Thursday, HD-ISS, and Gene Therapy 101](https://hdsa.org/blog/thankful-thursday-hd-iss-and-gene-therapy-101/) - Happy Thankful Thursday from HDSA, Dr. Sarah Tabrizi discusses HD-ISS on Help 4 HD podcast, Gene Therapy 101: New Resource from ASGCT on all things gene therapy
- [Celebrate #GivingTuesday with HDSA](https://hdsa.org/blog/celebrate-giving-tuesday-with-hdsa/) - At HDSA, we’re grateful for your commitment to HDSA’s vision of a world free of Huntington’s disease and for your engagement in research...
- [Highlights from HSG's 2022 Annual Meeting, Interview Study, and Genetic Counselor Awareness Day](https://hdsa.org/blog/highlights-from-hsgs-2022-annual-meeting-interview-study-and-genetic-counselor-awareness-day/) - This Week In HD Research keeps you up-to-date on HDSA research activities, recently published work about HD, historical moments in HD research and more.
- [HDSA Research Awards, Clinical Trials Updates & HD Podcasts](https://hdsa.org/blog/hdsa-research-awards-clinical-trials-updates-hd-podcasts/) - HDSA Awards Six HD Human Biology Project Research Fellowships; Updates on PTC’s PIVOT-HD study & uniQure's study of AMT-130; Help4HD Podcast Drs. Fox Harding
- [HDSA Research Webinar, HD Care, & HD History](https://hdsa.org/blog/hdsa-research-webinar-hd-care-hd-history/) - HDSA Research Webinar: Update from PTC Therapeutics on the PIVOT-HD Trial , HSG on the State of Care for HDThis Week in HD History: animal models
- [HDSA Surveys & Support the HD Parity Act!](https://hdsa.org/blog/hdsa-surveys-and-support-for-the-hd-parity-act/) - What motivates someone to seek genetic testing? How might support partners influence the genetic testing process? Help Pass the HD Parity Act!
- [Clinical Trial News & New Online Survey](https://hdsa.org/blog/clinical-trial-news-new-online-survey/) - PTC Therapeutics provides enrollment update - Teva shares good news for long term use of Austedo - Survey: Family Caregiving in HD Families
- [HD Legacy: Brain Donation for HD Research](https://hdsa.org/blog/hd-legacy-brain-donation-for-hd-research/) - To enable cutting-edge Huntington’s disease research, HDSA is collaborating with CHDI to support the donation of brain and other organs from HD families. A brain donation is an extraordinary gift in the name of science and medicine that can contribute to the greater knowledge and the greater good of the HD community. This new program,
- [This Week's Blog: 10.6.2022](https://hdsa.org/blog/this-weeks-blog-10-6-2022/) - HDBuzz on ASOs: What’s the latest on huntingtin-lowering? Interested in Research? Join HDSA’s HD Trialfinder! Join HDSA’s 8th Annual FREEZE HD in person!
- [This Week's Blog: 9.29.22](https://hdsa.org/blog/this-weeks-blog-9-29-22/) - Summer Research Recap This summer was full of ups and downs in HD research. Following a research webinar in August that recapped challenging clinical trials news the HD community received from uniQure and Novartis this summer, September’s research webinars held exciting updates from Picnic Health and Sage Therapeutics on the power of electronic medical records for fueling HD research, as well as from Prilenia on their phase 3 trial
- [This Week's Blog: 9.22.22](https://hdsa.org/blog/this-week-9-22-22/) - Wave Life Sciences announces positive results from SELECT-HD Earlier this week, Wave Life Sciences shared a positive update from the Phase 1b/2a study, SELECT-HD. The study is testing a spinally-delivered ASO drug that focuses on lowering only the harmful form of huntingtin protein, while preserving healthy huntingtin. In a very small group of initial participants who received low doses
- [Celebrate HDSA Founder’s Day on September 18th](https://hdsa.org/blog/celebrate-hdsa-founders-day-on-september-18th/) - 55 years ago, Marjorie Guthrie sought out volunteers from across the country and created the first network of support for the HD community. Each year on September 18th, HDSA honors our founder, Marjorie Guthrie, and those five volunteers that stood shoulder to shoulder with her to create what is now the Huntington's Disease Society of
- [HDSA Research Webinar Recording: All you need to know about PROOF-HD](https://hdsa.org/blog/hdsa-research-webinar-recording-all-you-need-to-know-about-proof-hd/) - This week HDSA hosted a research webinar in which Dr. Michael Hayden, CEO of Prilenia, and clinical leads Drs. Andy Feigin and Sandra Kostyk provided an overview and insights into the progress of PROOF-HD. This clinical trial is testing whether a drug called pridopidine can slow the decline in day-to-day function that people with HD
- [HDSA webinar Sept 7th: All you Need to Know About PROOF-HD](https://hdsa.org/blog/hdsa-webinar-sept-7th-all-you-need-to-know-about-proof-hd/) - In its Phase III trial, PROOF-HD, Prilenia is currently studying the effects of pridopidine on total functional capacity in people with HD. On Wednesday September 7th at 12 PM Eastern, HDSA will host a research webinar in which Dr. Michael Hayden, CEO of Prilenia, and clinical leads Drs. Andy Feigin and Sandra Kostyk will provide an overview and insights into the progress of PROOF-HD.
- [Novartis releases community update on VIBRANT-HD](https://hdsa.org/blog/novartis-releases-community-update-on-vibrant-hd/) - This week, Novartis released a community update on VIBRANT-HD, the phase 2b study of branaplam in adults with HD. The statement recapped what we know about the temporary suspension of dosing in the study and confirmed that while dosing has halted, study visits will continue as planned. Additionally, the letter reaffirmed Novartis’ commitment to the HD community
- [HDSA Centers of Excellence program now accepting LOI’s for 2023 designation  ](https://hdsa.org/blog/hdsa-centers-of-excellence-program-now-accepting-lois-for-2023-designation/) - HDSA Centers of Excellence program now accepting LOI’s for 2023 designation HDSA’s Centers of Excellence (COE) Program is the cornerstone of HDSA’s commitment to care. HDSA Centers of Excellence provide comprehensive multidisciplinary clinical services to families affected by HD. Services are centered on regularly scheduled HD clinic days at which an individual’s HD care
- [#LetsTalkAboutHD Clinical Trials](https://hdsa.org/blog/letstalkabouthd-clinical-trials/) - Multiple pieces of news about ongoing clinical trials were shared this week by companies developing therapies for HD. We discuss those announcements in more depth in the blog today, and point you to their sources. HDSA will be hosted a webinar on Thursday, August 11, 2022, from 12PM-1PM (ET), to offer people a chance to
- [HDSA Center of Excellence Directors discuss biomarkers for HD](https://hdsa.org/blog/hdsa-center-of-excellence-directors-discuss-biomarkers-for-hd/) - Neurofilament Light Chain (NfL) is a structural protein found in brain cells. In neurodegenerative diseases, circulating levels of NfL tend to be elevated, signaling damage to brain cells. In HD, NfL is being studied as a potential biomarker for the disease that could one day be implemented in clinical and research settings. To learn more about NfL from HD experts and
- [ENROLL-HD Celebrates 10-year Anniversary](https://hdsa.org/blog/enroll-hd-celebrates-10-year-anniversary/) - On July 25, 2012, the first participant entered ENROLL-HD, the world’s largest observational study of Huntington’s disease that monitors how the disease happens in people and how it changes over time. That first participant was in Tennessee, and 10 years later, over 21,000 participants from 155 clinical sites in 23 countries across the globe have contributed to the study.
- [HD Buzz Roundtable: HD Scientists talk research with Help4HD](https://hdsa.org/blog/hd-buzz-roundtable-hd-scientists-talk-research-with-help4hd/) - In a new series on the Help4HD podcast, host Lauren Holder will meet with members of the HDBuzz editorial staff to discuss hot topics in HD science. The first of these roundtable discussions went live last week. Esteemed clinician Dr. Ed Wild and expert HD scientist Dr. Rachel Harding gave a recap of research highlights
- [Now Streaming: Recordings from the 37th Annual HDSA Convention are LIVE!](https://hdsa.org/blog/now-streaming-recordings-from-the-37th-annual-hdsa-convention-are-live/) - Whether you were unable to join us this year for Convention or just want to brush up on what you learned, HDSA has you covered! Recordings of all sessions from the 37th Annual HDSA Convention are now available on our YouTube channel. Research highlights include the Clinical Trials Showcase, an update on the state of HD Research from
- [Unpacking uniQure’s safety data: HDBuzz breaks down AMT-130 updates](https://hdsa.org/blog/unpacking-uniqures-safety-data-hdbuzz-breaks-down-amt-130-updates/) - Two weeks ago, uniQure released a safety update for the first 10 participants in the low-dose cohort of the phase I/II trial of AMT-130, the first experimental gene therapy to be tested in people with Huntington’s disease. The editors of HD Buzz recently sat down with Dr. Ricardo Dolmetsch, President of Research and Development at uniQure, to
- [HDSA Awards 2022 Berman-Topper Family HD Career Development Fellowship](https://hdsa.org/blog/hdsa-awards-2022-berman-topper-family-hd-career-development-fellowship/) - The 2022 HDSA Berman-Topper Family HD Career Development Fellowship has been awarded to Dr. Sara Sameni (Salk Institute for Biological Sciences). These prestigious fellowships, made possible in part by the generosity of the Berman and Topper families, provide up to $80,000 of funding per year for three years to young scientists and clinicians who desire to make Huntington’s disease (HD) part of
- [uniQure announces positive safety data in study of AMT-130](https://hdsa.org/blog/uniqure-announces-positive-safety-data-in-study-of-amt-130/) - uniQure announces positive safety data in study of AMT-130 uniQure released a safety update this morning for the first 10 participants in the low-dose cohort of the phase I/II trial of AMT-130, the first experimental gene therapy to be tested in people with Huntington’s disease. The press release indicated that the drug has been well-tolerated with
- [Thank You, HDSA Convention Attendees!](https://hdsa.org/blog/thank-you-hdsa-convention-attendees/) - It was a pleasure to see so many faces, familiar and new, in Atlanta for the 37th Annual HDSA Convention, in addition to our audience who joined in the fun from home. Thank you to all who made this event so special! We are excited to be able to share all Convention content with you
- [Annexon Biosciences announces promising data in Phase 2 trial of ANX005](https://hdsa.org/blog/annexon-biosciences-announces-promising-data-in-phase-2-trial-of-anx005/) - Earlier this week, Annexon Biosciences announced top-line results of their Phase 2 clinical trial of ANX005 for HD. ANX005 is an antibody administered via IV with the goal of preserving synapses, the connections between brain cells that are damaged by the progression of HD. It does this by blocking C1q, a protein that activates the classical complement pathway, a part of the immune system that
- [The 37th Annual HDSA Convention begins in ONE WEEK!](https://hdsa.org/blog/the-37th-annual-hdsa-convention-begins-in-one-week/) - HDSA is excited to welcome the HD community to its 37th Annual Convention in Atlanta, GA in just one week! In-person and virtual attendees will hear talks from renowned HD clinicians and scientists from around the world on a multitude of topics, featuring several presentations from leaders in HD research. Research sessions will include the basics
- [HD Awareness Month: HD in the Media, HD Stories, HD Parity Act, HDSA Convention and More](https://hdsa.org/blog/hd-awareness-month-hd-in-the-media-hd-stories-hd-parity-act-convention-and-more/) - The month of May might be drawing to a close, but it’s not too late to turn up the volume on HD and raise awareness in your community! Head to HDSA’s YouTube channel to see HD spotlighted in your favorite TV shows like Breaking Bad, Scrubs, NCIS, and more. Check out HDSA’s “31 Days, 31 Stories” series for personal stories from members of
- [HDBuzz: Can vitamins be used to treat symptoms of HD?](https://hdsa.org/blog/hdbuzz-can-vitamins-be-used-to-treat-symptoms-of-hd/) - Researchers in Spain are studying whether a combination of vitamins approved to treat a different brain disorder, biotin-thiamine responsive basal ganglia disease (BTBGD), can be used to treat movement symptoms in HD. BTBGD causes changes to a person’s movement, mood, and thinking abilities due to an alteration in the body’s ability to use thiamine (vitamin B1). Scientists observed that, in HD, changes
- [HDSA Awards Five Donald A. King Summer Research Fellowships](https://hdsa.org/blog/hdsa-awards-five-donald-a-king-summer-research-fellowships/) - After extensive review by its Scientific Advisory Board, HDSA is excited to award the Donald A. King Summer Research Fellowship to five researchers. This program, named for former HDSA board chair and tireless advocate Donald King, who passed away in 2004, aims to prepare the next generation of Huntington’s disease (HD) scientists. HDSA is delighted to welcome this year’s award
- [HAPPY HD AWARENESS MONTH!](https://hdsa.org/blog/happty-hd-awareness-month/) - May is Huntington’s Disease Awareness Month, so #LetsTalkAboutHD. Post stories, videos, and photos to social media using #LetsTalkAboutHD. All stories are welcome – research included! Together we can spread awareness about Huntington’s disease. Learn more here. Also this month, On Saturday, May 14, 2022, HDSA will face-off against the Huntington Society of Canada (HSC) in the inaugural Huntington’s Disease Hockey
- [Supporting people with HD: Researcher Spotlight on Leonard Sokol, MD](https://hdsa.org/blog/supporting-people-with-hd-researcher-spotlight-on-leonard-sokol-md/) - The field of HD research is constantly evolving as scientists inch closer to treatments and cures for people affected by HD. But until that day comes, best care practices for individuals with HD remain an important conversation to support families affected by the disease. In his HDSA-funded research study, Dr. Leonard Sokol set out to learn more
- [Thank you, HD Research Volunteers!](https://hdsa.org/blog/thank-you-hd-research-volunteers/) - This week, HDSA is celebrating National Volunteer Appreciation Week. This goes for research, too! We’d like to express our heartfelt gratitude to everyone who lends a hand to make HDSA’s work possible and contributes to the progress of HD science. Our understanding and our ability to treat HD is constantly expanding because of extraordinary volunteers
- [Participate in research at the HDSA Center of Excellence at Rush University](https://hdsa.org/blog/participate-in-research-at-the-hdsa-center-of-excellence-at-rush-university/) - A group of researchers at the HDSA Center of Excellence at Rush University are studying how the brains of people with HD are activated during cognitive and movement tasks. If you are at least 30 years old and have a clinical diagnosis of Huntington's disease, you may be eligible to join. Participants will be observed
- [PTC Therapeutics initiates recruitment of PIVOT-HD study](https://hdsa.org/blog/ptc-therapeutics-initiates-recruitment-of-pivot-hd-study/) - Last week, PTC Therapeutics announced the initiation of their phase 2 clinical trial, PIVOT-HD, evaluating the effects of PTC518 in people with HD. The global trial will open first in the United States to test the safety and efficacy of the drug, which is an oral huntingtin-lowering therapy. It works by inserting a disrupting message into the code
- [Upcoming Research Webinar: HDSA & the HD Research Pipeline Webinar April 6th](https://hdsa.org/blog/upcoming-research-webinar-hdsa-the-hd-research-pipeline-webinar-april-6th/) - On April 6th at 12 PM ET, join HDSA's Chief Mission Officer, Dr. Arik Johnson, and Assistant Director of Research and Patient Engagement, Dr. Leora Fox for a review of the accomplishments and milestones achieved in HD Research in the last year. Dr. Johnson and Dr. Fox will share the highlights of HDSA's research portfolio, as
- [Happy World Social Work Month!](https://hdsa.org/blog/happy-world-social-work-month/) - The month of March is a time to celebrate and appreciate social workers for all they do! Social workers help people in all stages of life; they’re educators, crisis responders, advocates, community leaders, and more. In the HD community specifically, social workers provide invaluable support to HD families by running support groups, organizing care, connecting
- [HDBuzz covers newly published research on branaplam](https://hdsa.org/blog/hdbuzz-covers-newly-published-research-on-branaplam/) - A study recently published in Nature detailed scientists’ understanding of how branaplam, a drug originally developed for treatment of spinal muscular atrophy (SMA), may be used to treat HD. HDBuzz gave us the highlights: A group of researchers at Novartis and The Children's Hospital of Philadelphia tested the drug’s effects in cells in a dish as well
- [The Editors of HDBuzz cover the CHDI Therapeutics Conference](https://hdsa.org/blog/the-editors-of-hdbuzz-cover-the-chdi-therapeutics-conference/) - For the first time in two years, scientists, clinicians, and industry partners convened in Palm Springs, CA for CHDI foundation’s 17th Annual HD Therapeutics Conference. While the meeting is catered to the scientific experts, the HDBuzz team was on the scene to break down the technical aspects of each presentation into a highlight reel for the HD community. Day One of
- [HDBuzz Covers the CHDI Conference](https://hdsa.org/blog/hdbuzz-covers-the-chdi-conference/) - CHDI is a privately funded HD research foundation whose mission is to further development of HD therapies. This week, they’re hosting their annual HD Therapeutics conference in Palm Springs, California. While the meeting is generally geared toward scientists, the editors of HD Buzz are on the scene live-tweeting updates from the presentations in real time. This year’s
- [Raise Awareness of Rare Disease Day with HDSA February 28th](https://hdsa.org/blog/raise-awareness-of-rare-disease-day-with-hdsa-february-28th/) - When you have a rare disease, you face two battles – one being the illness itself, and the other, living in a world where so few people understand what you’re up against. Huntington’s disease is a rare disease and the HD community is no stranger to these battles, but we also know firsthand that while
- [Quick Question: Genetic Testing and Rare Disease](https://hdsa.org/blog/quick-question-genetic-testing-and-rare-disease/) - Check out HDSA’s new short video series, “Quick Question,” in which HDSA's Jennifer Simpson, LCSW (Assistant Director of Youth & Community Services) answers common questions about HD. In less than one minute, Jennifer responds to the questions of “why might a person WANT to test for the HD gene” and “why would a person NOT
- [A new mouse model for HD: The scoop from HDBuzz](https://hdsa.org/blog/a-new-mouse-model-for-hd-the-scoop-from-hdbuzz/) - Researchers at UCLA have developed a new mouse model for HD that more closely resembles human HD than ever before. In humans, HD is caused by a region in the genetic code for huntingtin protein that codes for too many C-A-G's. This region expands over the course of the disease in a way that is toxic for the body,
- [Splicing Modulators for HD: HDBuzz Covers PTC Therapeutics’ HTT-lowering approach](https://hdsa.org/blog/splicing-modulators-for-hd-hdbuzz-covers-ptc-therapeutics-htt-lowering-approach/) - Huntingtin lowering (HTT-lowering) has been touted as a promising avenue for treatment of HD because it targets the cause of the disease, mutant huntingtin protein. However, the success of these approaches is complicated by their ability to be distributed throughout the brain and body with a delivery method that is as minimally invasive as possible.
- [Update from Novartis on Planned Trial of Branaplam for Huntington’s Disease](https://hdsa.org/blog/update-from-novartis-on-planned-trial-of-branaplam-for-huntingtons-disease/) - Novartis is developing an experimental HD therapy called branaplam which has the potential to lower huntingtin when taken by mouth. Branaplam was originally developed for children with a rare and severe disease called spinal muscular atrophy. It was later discovered to lower huntingtin as well, leading to Novartis testing it in healthy adults in a Phase I safety
- [Roche to continue development of tominersen: Community Presentation TODAY](https://hdsa.org/blog/roche-to-continue-development-of-tominersen-community-presentation-today/) - In a community letter released January 18th, Roche announced plans to continue developing the huntingtin-lowering drug tominersen. After analyzing data collected in the Phase III GENERATION HD-1 trial that halted dosing in March of 2021, it was determined that younger adult participants with lower disease burden may have benefitted from less frequent dosing of tominersen. For this reason, Roche is planning a new Phase II clinical trial of tominersen in this population. To read the full
- [Research Webinar: Roche Joins HDSA to Discuss Latest Data from GENERATION HD-1](https://hdsa.org/blog/research-webinar-roche-joins-hdsa-to-discuss-latest-data-from-generation-hd-1/) - One week from today, HDSA will be joined by members of the Roche team at 3:00 PM EST on January 20th for an update on new findings from the data collected in the GENERATION HD-1 study. This 90-minute, community-focused webinar will be an opportunity to hear members of the Roche/Genentech team discuss new data from the study
- [Upcoming Webinar: New Key Findings from the GENERATION HD-1 Study](https://hdsa.org/blog/upcoming-webinar-new-key-findings-from-the-generation-hd-1-study/) - Join HDSA at 3:00 PM EST on January 20th for an update from Roche on new findings from the data collected in the GENERATION HD-1 study. This 90-minute, community-focused webinar will be an opportunity to hear members of the Roche/Genentech team discuss new data from the study regarding tominersen, ask questions, and participate in a conversation with Roche & HDSA leadership. Register for the webinar here.
- [Happy Holidays from HDSA](https://hdsa.org/blog/happy-holidays-from-hdsa/) - Through all the challenges 2021 had in store, the resilience of the HD community has continued to inspire HDSA in our collective fight to end HD. To review this year in HD research and things to look forward to in 2022, check out HDSA’s annual research report, The Marker, as well as HDSA’s research webinars, available on our YouTube channel. Novartis receives fast-track designation for branaplam
- [uniQure opens new study sites and changes inclusion criteria for AMT-130 trial](https://hdsa.org/blog/uniqure-opens-new-study-sites-and-changes-inclusion-criteria-for-amt-130-trial/) - In a press release published this morning, uniQure announced that AMT-130, an investigational gene therapy for treatment of Huntington's disease, was well tolerated with no significant safety issues over the first year in the phase 1b/2a study’s earliest-dosed participants. The trial’s Data Safety Monitoring Board (DSMB) also gave a positive review for the first four
- [A new Biomarker for HD: HDBuzz on radiolabels for mHTT](https://hdsa.org/blog/a-new-biomarker-for-hd-hdbuzz-on-radiolabels-for-mhtt/) - A research team led by Dr. Celia Dominguez at CHDI has identified a new method to track the presence of toxic mutant huntingtin protein in an HD brain. The most recent publication from HDBuzz highlights this exciting potential new biomarker for HD. In people with HD, the mutant copy of the huntingtin gene causes mutant huntingtin protein (mHTT) to be produced,
- [Mark Your Calendars: “Ask the Scientists ... Anything” HDSA Research Webinar](https://hdsa.org/blog/mark-your-calendars-ask-the-scientists-anything-hdsa-research-webinar/) - As November chill slowly turns to December cold, mark your calendars for HDSA’s final research webinar of the year on Tuesday, December 7th. Three editors of HD Buzz, Drs. Jeff Carroll, Ed Wild, and Rachel Harding, will join us for an “Ask the Scientists...Anything” session to discuss all of the peaks and valleys of the HD research landscape and provide insights
- [Now Accepting Applications for 2022 Berman-Topper and Donald A. King Research Fellowships](https://hdsa.org/blog/now-accepting-applications-for-2022-berman-topper-and-donald-a-king-research-fellowships/) - Earlier this week on November 16, HDSA launched applications for the 2022 cycles of its prestigious Berman-Topper Family HD Career Development Fellowship and Donald A. King Summer Research Fellowship. To learn more about these exciting opportunities and how to apply, visit the Berman-Topper Fellowship and Donald A. King Fellowship pages on HDSA’s website. Prilenia Therapeutics Receives Fast-Track Designation for Pridopidine for Treatment of HD
- [Webinar TODAY! Take Action and Support the HD Parity Act](https://hdsa.org/blog/webinar-today-take-action-and-support-the-hd-parity-act/) - We talk a lot about what we're hopeful for tomorrow here in the research world, and it's equally important to talk about what HD families need help with TODAY. To that end, there is a piece of legislation that ourselves, our friends and our allies need to rally behind to help pass. The Huntington's Disease
- [Research Wrap-Up: HDBuzz Covers EHDN’s Annual Research Conference](https://hdsa.org/blog/research-wrap-up-hdbuzz-covers-ehdns-annual-research-conference/) - In September, the European Huntington’s Disease Network brought together scientists and stakeholders from around the world for updates from experts in all things HD research. Presentations included an update from Roche on the logistics of data analysis from GENERATION-HD1, a report from Wave Life Sciences on the latest from their approach for selective-lowering on mHTT that will be studied in
- [HDSA Research Webinar 11/3/21: Register TODAY!](https://hdsa.org/blog/hdsa-research-webinar-11-3-21-register-today/) - Dr. Jane Paulsen will join HDSA next week to discuss a new observational trial, PREVENT-HD, Preparing for the Prevention of Huntington’s disease. The goal of this study is to develop tools to measure the effectiveness of clinical interventions for HD before symptoms begin to effect daily life. Biomarkers to track the disease in this premanifest stage will support the
- [Prilenia Therapeutics and HSG announce completion of participant enrollment in PROOF-HD](https://hdsa.org/blog/prilenia-therapeutics-and-hsg-announce-completion-of-participant-enrollment-in-proof-hd/) - In a recent press release, Prilenia Therapeutics and the Huntington’s Study Group (HSG) announced the completion of participant enrollment in PROOF-HD, a global phase III clinical trial of pridopidine’s impact on total functional capacity (TFC) in Huntington's disease (HD). As HD Buzz reported in June of this year, pridopidine is a highly selective sigma 1 receptor (S1R) agonist. S1R proteins are found in brain regions
- [HDSA Awards Five Huntington’s Disease Human Biology Project Research Grants](https://hdsa.org/blog/hdsa-awards-five-huntingtons-disease-human-biology-project-research-grants/) - After thoughtful deliberation by its Scientific Advisory Board, HDSA will award five the Huntington’s Disease Human Biology Project research grants to Joan O’Keefe, PhD, PT (Rush University Medical Center), Alby Richard, MD, PhD (University of Montreal), Charlene Smith-Geater, PhD (University of California, Irvine), Ana Gámez-Valero, PhD (Universidad de Barcelona), and Tamara Maiuri, PhD (McMaster University). The projects supported by the largest of
- [Dr. Francis S. Collins to Step Down from Head of NIH](https://hdsa.org/blog/dr-francis-s-collins-to-step-down-from-head-of-nih/) - On Tuesday of this week, Francis S. Collins, MD, PhD, announced he would step down from his role as Director of the NIH by the end of this year. The esteemed physician-geneticist is credited with the discovery of genes associated with numerous diseases, and was a part of the team that discovered the gene responsible for Huntington’s disease in 1993. When he was
- [HD Buzz: Real talk with Roche on GENERATION-HD1](https://hdsa.org/blog/hd-buzz-real-talk-with-roche-on-generation-hd1/) - The editors of HD Buzz recently sat down with leaders from Roche to ask questions on behalf of the HD community about the GENERATION-HD1 clinical trial of tominersen. This interview was conducted right around the time that Roche presented at the EHDN conference. From lessons taken from this trial to future endeavors in HD research, Roche shared information on the community-wide questions
- [HDSA Research Webinar TODAY!](https://hdsa.org/blog/hdsa-research-webinar-today/) - Join HDSA TODAY at 12PM (ET) for the next HDSA Research Webinar! HDSA Human Biology Project Fellows Dr. Michael Placzek (Massachusetts General Hospital) and Dr. Simon Laganiere (Beth Israel Deaconess Hospital) will present their work on neuroimaging biomarkers in HD. Click here to register. SAGE-718 Earns FDA Fast Track Designation In a recent press release, Sage Therapeutics announced FDA Fast Track Designation for SAGE-718,
- [Roche Regroups: New Partnerships forged in HD Research](https://hdsa.org/blog/roche-regroups-new-partnerships-forged-in-hd-research/) - After an unexpected dosing halt in the GENERATION-HD1 study nearly 6 months ago, Roche is gearing up to increase their commitment to HD research. Spark Therapeutics, a member of the Roche group, recently announced a partnership with NeuExcell to develop new treatments for HD. Many experimental HD therapeutics thus far have sought to lessen effects of the disease by
- [Wave Life Sciences begins SELECT-HD Trial](https://hdsa.org/blog/wave-life-science-begins-select-hd-trial/) - Wave Life Sciences shared a press release this morning announcing that dosing has begun in the SELECT-HD trial. The study will test a spinally-delivered ASO drug that focuses on lowering the harmful form of huntingtin. This is a small safety trial that will enroll around 36 participants. To learn more check out the press release. More
- [Advances in Gene Therapy: HDBuzz Covers Exciting New Regulatory System, Xon](https://hdsa.org/blog/advances-in-gene-therapy-hd-buzz-covers-exciting-new-regulatory-system-xon/) - Researchers at the Children’s Hospital of Philadelphia have created a system to better regulate gene editing by administration of a secondary activator drug. This novel system, dubbed Xon, acts like a dimmer switch; a genetic therapy is delivered in an inactive form, and an additional drug must be used to turn on the gene therapy. By changing the amount and frequency of the dose of the
- [KINECT-HD2: Rollover Study of Valbenazine for Chorea in HD](https://hdsa.org/blog/kinect-hd2-rollover-study-of-valbenazine-for-chorea-in-hd/) - KINECT-HD2, the open-label extension of KINECT-HD, is seeking 30 new participants to join a study of valbenazine for chorea in Huntington's disease. Valbenazine, which has previously been approved for treatment of the movement disorder tardive dyskinesia, reduces involuntary movements by lessening the amount of the chemical signal dopamine in the brain. This therapeutic is taken by mouth and will be evaluated in study participants for up to 112 weeks. If you are interested in participating,
- [HDBuzz on Recent News in the HD Research Pipeline](https://hdsa.org/blog/hdbuzz-on-recent-news-in-the-hd-research-pipeline/) - The August 9th press release from Voyager Therapeutics left many of us scratching our heads. Luckily, HDBuzz swooped in with their latest article that deciphers Voyager’s news and sheds light on the numerous therapies in the HD research pipeline and their unique approaches to treating HD. In short, Voyager is no longer pursuing a gene therapy that was in the
- [Voyager Therapeutics Shifts Directions](https://hdsa.org/blog/voyager-therapeutics-shifts-directions/) - Voyager Therapeutics issued a press release on Monday about their finances, recent leadership transitions, and importantly, a major shift in their scientific pipeline. The announcement centered around a proprietary technology called TRACER, which could allow Voyager to develop less invasive delivery methods (like IV injection) for HD gene therapies. Monday’s press release shared that Voyager will
- [HD Parity Act and Pro-Patient Advocacy in the Neurological Disease Community](https://hdsa.org/blog/hd-parity-and-pro-patient-advocacy-in-the-neurological-disease-community/) - Last week, Kala Booth, a Huntington’s disease patient, caregiver, advocate, and the 4th known generation in her family to test HD positive appeared before the House Committee on Energy & Commerce subcommittee on neurodegenerative diseases. In her testimony, Kala shared the hardships her family has experienced through misdiagnoses, denial of disability benefits, and more, and laid out a series of requests for congress to
- [HD Advocate Testifies on HD Parity Act](https://hdsa.org/blog/hd-advocate-testifies-on-hd-parity-act/) - Kala Booth, a Huntington’s disease positive individual and caregiver to her mother, will appear TODAY before the House Committee on Energy & Commerce subcommittee on neurodegenerative diseases. Kala will discuss her experiences in clinical trials for HD, caregiving for her mother, applying for disability, and the community’s need for passage of the HD Parity Act to waive the two-year waiting period between being deemed eligible for SSD
- [Now Accepting Letters of Intent for 2022 HDSA Centers of Excellence!](https://hdsa.org/blog/hdbuzz-on-trial-of-crispr-based-drug-for-ttr-amyloidosis/) - HDSA Centers of Excellence provide comprehensive multidisciplinary clinical services to families affected by HD, including neurology, psychology, genetic counseling/testing, social services, ancillary therapies (OT, PT, and Speech) and HD clinical trials. The goal of the HDSA Center of Excellence program is to increase access to the best possible clinical care and services for persons affected
- [New Biomarkers to Track Disease-Modifying Therapies in Pre-manifest HD](https://hdsa.org/blog/new-biomarkers-to-track-disease-modifying-therapies-in-pre-manifest-hd/) - Much of today’s efforts in HD research are focused on lowering huntingtin protein in early stages of the disease. Ideally, clinicians could begin treating gene-positive individuals before the onset of symptoms entirely, but this would require novel ways to evaluate safety and efficacy before symptoms occur. Researchers at Johns Hopkins Medicine, including 2013 HDSA Human Biology Project Fellow, Jun Hua, are developing biomarkers that do exactly that.
- [Recorded Sessions From The HDSA Convention Are Now Available](https://hdsa.org/blog/recorded-sessions-from-the-hdsa-convention-are-now-available/) - The Virtual 36th Annual HDSA Convention was a spectacular time for researchers, clinicians, family members, and affected individuals to come together for support through recent challenges and celebration of the progress we’ve made in the last year. If you weren’t able to join us for live sessions, don’t stress! Each presentation was recorded and is now available for viewing here. If you’re interested in revisiting
- [Opportunities to participate in online HD research](https://hdsa.org/blog/opportunities-to-participate-in-online-hd-research/) - Research participation is essential in the quest for HD treatments and knowledge, not only in pursuit of drug development but also to improve care and quality of life. In-person participation is not possible for everyone, but many HD researchers and care professionals worldwide are conducting studies than can be completed online. HDSA works with students, scientists, and clinicians to review their university-approved studies and share them with the
- [HDSA Awards Two Berman-Topper Family HD Career Development Fellowships](https://hdsa.org/blog/hdsa-awards-two-berman-topper-family-hd-career-development-fellowships/) - After careful Scientific Advisory Board review, HDSA is excited to award the Berman-Topper Family HD Career Development Fellowship to Dr. Eduardo Silva Ramos (Max Delbrück Center for Molecular Medicine, Berlin, Germany) and Dr. Adys Mendizabal (University of California at Los Angeles). These prestigious fellowships, made possible in part by the generosity of the Berman and Topper families, provide up to $80,000 of funding per
- [Thank you for attending HDSA’s Virtual 36th Annual Convention!](https://hdsa.org/blog/thank-you-for-attending-hdsas-virtual-36th-annual-convention/) - Thank you to all who attended HDSA’s virtual 36th Annual Convention! If you missed us this time around, don’t stress—recorded sessions will be available on our YouTube channel in the coming weeks. While we await the video highlights, be sure to check out the local and online surveys page to see what HD research trials are happening in your area or that
- [Virtual 36th Annual HDSA Convention Begins TODAY!](https://hdsa.org/blog/virtual-36th-annual-hdsa-convention-begins-today/) - Join us TODAY for the Virtual 36th Annual HDSA Convention of four days full of meet-and-greets, presentations, Q&A’s, support groups, and more. If you’re not already registered, sign up free here, and keep reading for a preview of our research presentations line-up below. All sessions are scheduled in Eastern time. FRIDAY, JUNE 11 Roche and Genentech Update and Q&A on Generation HD-1, 10:00 AM: Roche and Genentech
- [Register TODAY: Virtual 36th Annual HDSA Convention](https://hdsa.org/blog/register-today-virtual-36th-annual-hdsa-convention/) - Join us virtually from June 10th-13th for the 36th Annual HDSA Convention, beginning one week from today. Register for free on HDSA’s website to participate in conversations with clinicians, community members, and researchers on all things HD. Research talks will include showcases of ongoing clinical trials, HD therapies in the pipeline, updates on findings from recent clinical trials, an open Q&A
- [uniQure’s AMT-130 for Treatment of Huntington’s Disease Advances in Phase I/II Clinical Trial](https://hdsa.org/blog/uniqures-amt-130-for-treatment-of-huntingtons-disease-advances-in-phase-i-ii-clinical-trial/) - uniQure announced today that they will move forward with the Phase I/II Clinical Trial of AMT-130, a gene therapy candidate for treatment of HD administered in a single dose to deep brain tissues with MRI-guided neurosurgical delivery. After careful review of safety data for the first enrolled cohort of ten patients, the independent Data Safety Monitoring Board has recommended continued
- [Happy International Clinical Trials Day: Thank You Researchers & Participants](https://hdsa.org/blog/happy-international-clinical-trials-day-thank-you-researchers-participants/) - May 20th is recognized as Clinical Trials Day to commemorate what is regarded as the first randomized clinical trial initiated by James Lind on May 20, 1747. In this momentous study, Lind analyzed possible treatments of scurvy in shipmates aboard the HMS Salisbury of the British Royal Navy. As we commemorate 247 years of clinical
- [Webinar TODAY! HDSA & Me: HD 101 - Getting Started](https://hdsa.org/blog/webinar-today-hdsa-me-hd-101-getting-started/) - HDSA is excited to announce a new educational series that will begin TODAY, May 13th at 2PM ET, HDSA & Me. These virtual events for the HD community will talk through a range of topics, including social distancing and its effective caregivers, adaptive yoga practices, music, dance, and more. Today's session will feature speaker Dr.
- [HDSA Announces 2021 Donald A. King Summer Research Fellows](https://hdsa.org/blog/hdsa-announces-2021-donald-a-king-summer-research-fellows/) - After Scientific Advisory Board review, HDSA is excited to award the Donald A. King Summer Research Fellowship, to two undergraduate researchers. This program, named for former HDSA board chair and tireless advocate Donald King, who passed away in 2004, aims to prepare the next generation of Huntington’s disease (HD) scientists. Ratnesh Kesineni, from the University of Central Florida, will be mentored by former HDSA Human Biology
- [Webinar TODAY: Roche Community Update on GENERATION-HD1](https://hdsa.org/blog/webinar-today-roche-community-update-on-generation-hd1/) - Since the announcement in late March that dosing of tominersen in the GENERATION-HD1 trial had been halted, HD researchers and families alike have wondered: what exactly led to this devastating decision? At this week’s CHDI meeting, Roche presented the findings from their preliminary analysis, which explain clearly why dosing was halted: tominersen simply did not
- [Volunteer Appreciation Week](https://hdsa.org/blog/hdbuzz-covers-uniqures-novel-gene-therapy-amt-130/) - This is Volunteer Appreciation Week and we would like to thank all the brave individuals who have volunteered their time to participate in vital clinical trials and surveys to support HD research. Your involvement today will lead to future treatments and, for that, we thank you! HDBuzz covers uniQure’s novel gene therapy, AMT-130 As mentioned
- [Grieving Setbacks with Hope for the Future](https://hdsa.org/blog/grieving-setbacks-with-hope-for-the-future/) - The difficult news of clinical setbacks from Roche and Wave have turned the recent weeks into an emotional rollercoaster for the HD Community. But amidst the disappointment, Andrew Joseph’s latest article in Stat News provides a recap of what we know from Roche and Wave so far and reminds us there is much to be hopeful for
- [Positive News from uniQure: Successful Study Recruitment](https://hdsa.org/blog/positive-news-from-uniqure-successful-study-recruitment/) - uniQure shared a press release this week stating that their safety trial of an HD gene therapy drug, AMT-130, is on track and even ahead of schedule. This is a small study (26 participants) that requires a surgery to deliver the drug directly to the part of the brain most affected by HD. Over the
- [More Disappointment in Wave PRECISION-HD Study Results ](https://hdsa.org/blog/more-disappointment-in-wave-precision-hd-study-results/) - This Monday, March 29th, Wave Life Sciences shared a press release and community letter explaining that data from their PRECISION-HD1 and PRECISION-HD2 trials does not support further development of the huntingtin-lowering ASOs they were testing in people. Essentially, these relatively small trials were designed to measure whether two genetic drugs could lower the harmful form
- [Disappointing news from Roche about GENERATION-HD1 study ](https://hdsa.org/blog/disappointing-news-from-roche-about-generation-hd1-study/) - We were saddened to learn on March 22nd via a press release and community statement from Roche that their Phase 3 study of tominersen, known as the GENERATION-HD1 trial, has been halted early, meaning that participants will no longer receive the study drug or placebo. The decision to halt dosing of this genetic therapy came as a shock to the community, from participants and their loved ones, to doctors,
- [Brain Awareness Week](https://hdsa.org/blog/brain-awareness-week/) - Brain Awareness Week is a (March 15th - 21st, 2021) is a global campaign to foster public enthusiasm and support for brain science, coordinated by the Dana Foundation. Every March, partners host imaginative activities in their communities that share the wonders of the brain and the impact brain science has on our everyday lives. Check out www.brainawarenessweek.org to learn more about
- [HDSA Research Webinar: KINECT-HD](https://hdsa.org/blog/hdsa-research-webinar-kinect-hd/) - If you missed this week’s research webinar about the KINECT-HD clinical study, it is now available on HDSA’s YouTube channel. Dr. Erin Furr Stimming and Dr. Daniel Claassen presented the details of this currently recruiting trial to test the drug valbenazine as a treatment for HD chorea. They covered study details, eligibility, locations, and how to
- [Upcoming HDSA Webinars](https://hdsa.org/blog/upcoming-hdsa-webinars/) - HDSA & Me is a web series presenting unique programming to educate and to brighten your day. TODAY, March 4th, at 2:00 PM Eastern, join us for a presentation by Dr. Deborah Hall from the HDSA Center of Excellence at Rush University Medical Center. She’ll talk about how to get the most out of your doctor’s visit. Please register here.
- [February 28th is Rare Disease Day ](https://hdsa.org/blog/february-28th-is-rare-disease-day/) - When you have a rare disease, you face two battles - one being the illness itself, and the other, living in a world where so few people understand what you’re up against. Huntington’s disease is a rare disease and the HD community is no stranger to these battles, but we also know firsthand that while
- [HDBuzz Explores a Novel Huntingtin-lowering Strategy](https://hdsa.org/blog/hdbuzz-explores-a-novel-huntingtin-lowering-strategy/) - Huntingtin-lowering is an HD treatment strategy that usually involves targeting the HD gene itself, but some researchers are exploring roundabout ways to achieve the same effect. A research team in China recently developed a drug to target a protein called GPR52, and tested its ability to lower huntingtin in mouse models of HD and in cells. They published their
- [Upcoming HDSA 2020 Year in Review Webinar](https://hdsa.org/blog/upcoming-hdsa-2020-year-in-review-webinar/) - As we mentioned in January, we’ll be hosting an HD Research Year in Review webinar on Thursday, February 18th, at 12 PM Eastern, to talk about the extraordinary progress made in the HD research field this year. Please join us to learn more about the triumphs of 2020 at HDSA and beyond in spite of the difficult
- [HDSA Announces 54 Centers of Excellence for 2021  ](https://hdsa.org/blog/hdsa-announces-54-centers-of-excellence-for-2021/) - HDSA Centers of Excellence provide world-class multidisciplinary care to families all over the United States. On February 2nd, HDSA announced the expansion of the Centers of Excellence Program to include 54 sites in 35 states plus the District of Columbia. Read more about our COEs and all locations in this week’s press release. Professionals at
- [Recap: PROOF-HD Webinar ](https://hdsa.org/blog/recap-proof-hd-webinar/) - If you missed this week’s research webinar, in which Dr. Sandra Kostyk and Dr. Andrew Feigin discussed a new HD trial called PROOF-HD, it is now available to view on HDSA’s YouTube Channel. Drs. Feigin and Kostyk explained the mechanism of the drug, pridopidine, and answered questions about eligibility, what participation involves, the timeline, and
- [Enroll-HD: A Resource For Everyone](https://hdsa.org/blog/enroll-hd-a-resource-for-everyone/) - Enroll-HD is a worldwide observational study of Huntington’s disease, meaning that it doesn’t involve taking a drug but tracks peoples’ health and behavior over time. There are more than 20,000 participants globally, who visit hundreds of sites and all undergo the exact same evaluations yearly. Anyone from an HD family can participate, regardless of gene status or risk. It
- [Ask the Doctor...Anything! ](https://hdsa.org/blog/ask-the-doctor-anything/) - Next Thursday, January 21st, at 2 PM Eastern, HDSA will be hosting an Ask the Doctor Anything webinar. Register today to interact with expert HD physicians Dr. Veronica Santini and Dr. Sharon Sha from our HDSA Center of Excellence at Stanford University, who will answer your HD medical questions live. Learn More About the PROOF-HD Study of Pridopidine In
- [Happy New Year From HDSA ](https://hdsa.org/blog/happy-new-year-from-hdsa/) - Last year was a tough one for all of us, but HD research nevertheless made incredible progress, and we are entering 2021 with renewed hope and energy. Thank you as always for your support and for sharing in our excitement about research news and developments. HDBuzz: The Dark Side of DNA Repair DNA repair has emerged in
- [Happy Holidays from the HDSA Family ](https://hdsa.org/blog/happy-holidays-from-the-hdsa-family/) - Despite the challenges of 2020, your support of HDSA this year has continued to remind all of us that in the fight against Huntington's disease, Family Is Everything. HD research has also made incredible strides this year, with the very first HD gene therapy trial, and recruitment of pivotal huntingtin-lowering studies, even in the face of a pandemic. COVID-19 Vaccine Last week the FDA authorized emergency use of
- [Publication from an HDSA Fellow ](https://hdsa.org/blog/publication-from-an-hdsa-fellow/) - Congratulations to 2019 Berman-Topper Fellow Dr. Lauren Byrne, whose work was recently published in the Journal Science Translational Medicine. She tweeted this week about her findings, the culmination of several years of work examining how spinal fluid biomarkers change as HD symptoms develop and progress. Measuring changes in the contents of spinal fluid and blood will be an important future tool for evaluating drugs designed to prevent HD
- [The Marker: HDSA’s Annual Research Report](https://hdsa.org/blog/the-marker-hdsas-annual-research-report/) - Each year HDSA’s annual research report, The Marker, covers the past year in HD science and HDSA research activities. Check out The Marker 2020 for updates on clinical trials, news from HD research conferences, HDSA’s research programs and more. HD research progress has marched steadily onward in the face of 2020’s many challenges, which is
- [HDSA Announces Four 2020 Human Biology Fellows](https://hdsa.org/blog/hdsa-announces-four-2020-human-biology-fellows/) - This week, HDSA announced the winners of the 2020 HD Human Biology Fellowship. HDSA’s largest research initiative, the Human Biology Project supports projects that focus on understanding Huntington’s disease as it occurs in humans. This year’s scientists were chosen by HDSA’s Scientific Advisory Board from a large and competitive pool of applicants. Here are the names and titles of their research projects: ·
- [Happy Thanksgiving](https://hdsa.org/blog/happy-thanksgiving-2/) - Happy Thanksgiving and a big thank you to members of the HD community for your participation in research. Medicine moves forward through community engagement and participation, along with the work of hundreds of health workers and scientists who have dedicated their lives to treating and researching HD. If you’re a reader of this blog, you’re
- [PTC Therapeutics Initiates Phase 1 Clinical Trial](https://hdsa.org/blog/ptc-therapeutics-initiates-phase-1-clinical-trial/) - PTC Therapeutics is a company focused on developing genetic and small molecule therapies for rare and serious disorders. This week they issued a press release announcing that their oral huntingtin-lowering drug, PTC518, has entered a Phase 1 clinical trial. This is a small, brief trial in healthy participants who do not carry the HD genetic mutation, to determine a dose of PTC518 that can safely
- [Triplet Therapeutics SHIELD-HD study fully recruited ](https://hdsa.org/blog/triplet-therapeutics-shield-hd-study-fully-recruited/) - Triplet Therapeutics is a Boston-based biotech company that is developing therapies for CAG repeat disorders like HD. Their focus is studying and stopping the expansion of CAG repeats in cells of the brain and body as people with HD age. Triplet announced today that their natural history study, called SHIELD HD, has fully recruited participants ahead of schedule. This study will not involve a treatment
- [HDBuzz: Clinical Research Updates from the HSG Conference](https://hdsa.org/blog/hdbuzz-clinical-research-updates-from-the-hsg-conference/) - The Huntington Study Group hosted a virtual conference from October 29th - 31st, covering clinical trial updates, education, and training for HD doctors and researchers. The first two days of the event were geared towards academics and clinicians, but HDBuzz has provided lay summaries of Day 1 and Day 2 that will bring you up to date with the latest news from companies developing treatments for HD. Highlights included an announcement
- [HSG 2020: HD in Focus](https://hdsa.org/blog/hsg-2020-hd-in-focus/) - The Huntington Study Group is a clinical research network focused exclusively on Huntington disease. Each year they host a conference that provides education and training for HD clinicians and researchers, with a final day reserved for families and the wider HD community. Their virtual event, HD in Focus is taking place now, with scientific talks this Thursday and Friday October 29th and 30th, followed
- [Novartis Receives FDA Orphan Drug Designation to Study Potential HD Treatment](https://hdsa.org/blog/novartis-receives-fda-orphan-drug-designation-to-study-potential-hd-treatment/) - This week the pharmaceutical company Novartis announced that they had received special status from the FDA, known as Orphan Drug Designation, to study an experimental drug called branaplam in HD patients. Novartis developed branaplam for the treatment of a genetic disease in children called spinal muscular atrophy (SMA). While testing it in animals and humans, they discovered that it can lower levels of the huntingtin protein, which
- [uniQure Trial Proceeds; Voyager Receives Regulatory Feedback](https://hdsa.org/blog/uniqure-trial-proceeds-voyager-receives-regulatory-feedback/) - This week uniQure shared a press release stating that another two patients have entered their HD clinical trial. The drug, AMT-130, is an experimental gene therapy that aims to lower harmful huntingtin protein in the brains of people with HD. It is delivered via a one-time brain surgery procedure, and because this type of treatment is so new, uniQure is proceeding carefully and slowly to ensure that
- [HDBuzz Covers Virtual EHDN Conference](https://hdsa.org/blog/hdbuzz-covers-virtual-ehdn-conference/) - The European Huntington’s Disease Network hosts a yearly Plenary meeting to discuss the latest in HD science and clinical trials, which was held virtually in 2020. HDBuzz provided summaries of the talks given at the full-day meeting in September, focusing on scientific sessions and clinical trial updates. Check out their summary, and you can also watch any of the recorded talks on EHDN’s website. Nobel Prize
- [HD Trialfinder: Study Updates](https://hdsa.org/blog/hd-trialfinder-study-updates/) - HDSA’s HD Trialfinder is an easy-to-use website that lists currently recruiting HD clinical trials in the United States and Canada. By answering some basic questions about yourself or a loved one, you can match to nearby HD trials. You can also use the site to explore and read about trials happening all over the country. If you haven’t checked it out, or haven’t
- [SIGNAL study of pepinemab does not meet key goals for HD patients  ](https://hdsa.org/blog/signal-study-of-pepinemab-does-not-meet-key-goals-for-hd-patients/) - The SIGNAL study was carried out by a company called Vaccinex to test whether their drug, pepinemab, could combat brain inflammation and ease symptoms for HD patients. More than 300 courageous participants who carry the HD gene had monthly IV injections of the drug or a placebo for up to a year. They continued to be monitored monthly for safety, health, and changes in symptoms for up to 3 years in total.
- [Highlights from the EHDN Virtual Congress](https://hdsa.org/blog/highlights-from-the-ehdn-virtual-congress/) - This week the 2020 European Huntington’s Disease Network (EHDN) hosted a virtual plenary meeting to discuss the latest in HD research and clinical trials. You can use these links to access the entire program and all of the recorded sessions. Here are some highlights: Dr. Sarah Tabrizi presented an update on the Roche/Genentech trial of their huntingtin-lowering ASO, tominersen, which is delivered into the spinal cord either 3 or
- [You Asked the Scientists!](https://hdsa.org/blog/you-asked-the-scientists/) - The recording from the latest HDSA Research Webinar, Ask the Scientist Anything, is now available on HDSA’s YouTube channel. Dr. Ed Wild and Dr. Jeff Carroll, creators of HDBuzz, as well as HDBuzz writers and HDSA Fellows Dr. Sarah Hernandez and Dr. Rachel Harding answered research (and medical) questions live. They covered updates on huntingtin lowering, healthy versus
- [Research Webinar: Ask the Scientist...Anything! ](https://hdsa.org/blog/research-webinar-ask-the-scientist-anything/) - This coming Tuesday, September 8th, at 12 PM Eastern, Dr. Ed Wild and Dr. Jeff Carroll, creators of HDBuzz, as well as HDBuzz writers Dr. Sarah Hernandez and Dr. Rachel Harding, will answer questions about HD research LIVE during HDSA’s Ask the Scientist Anything research webinar. That’s Noon ET, Tuesday, September 8th. Register here! Here’s the Deal: Talking to Kids About
- [HDBuzz on Somatic Instability](https://hdsa.org/blog/hdbuzz-on-somatic-instability/) - The cause of Huntington’s disease is an extra-long stretch of CAG repeats in the DNA, in a single gene called huntingtin. In the past few years, HD scientists have learned that not only is this gene too big to begin with, but those CAGs can continue to expand as a person with HD ages, in some parts of
- [Research Spotlight: Telemedicine for Huntington’s Disease](https://hdsa.org/blog/research-spotlight-telemedicine-for-huntingtons-disease/) - Participants diagnosed with HD, ages 18-70, in the Chicago area, are needed for an HDSA-funded study on Telemedicine at Northwestern University. This study aims to find out if telemedicine clinic visits are as good as in-person clinic visits for completing a Huntington’s-focused Neurologic exam and thinking and memory tests. The study will determine if Huntington’s
- [HDBuzz: CRISPR Requires Caution](https://hdsa.org/blog/hdbuzz-crispr-requires-caution/) - CRISPR is a gene editing technique that has been touted for its potential to treat HD someday in the future. However, it is still an early technology, and will take a lot of exploration before it could be tested in humans. The safety of CRISPR has recently come into question because of some alarming experimental results
- [Virtual HDSA Convention: Research Recap](https://hdsa.org/blog/virtual-hdsa-convention-research-recap/) - HDSA’s Virtual 35th Annual Convention included forty sessions in four days, and the HD Community came out in full force. More than 1,500 unique email registrants from 93 nations around the world joined the Convention, with 6,200 live views. This week, we’re sharing descriptions of each research session with links so that you can watch any session again or share it with someone who
- [Throwback Thursday: This Week in HD History](https://hdsa.org/blog/throwback-thursday-this-week-in-hd-history/) - The exact sequence and location of the gene that causes Huntington’s disease was published in 1993, but the hunt had been on for some time. Today, anyone can search for the sequence of the huntingtin gene on the internet (in fact, here it is, if you want to scroll through a lot of A, G, C,
- [Becoming an HDSA Center of Excellence](https://hdsa.org/blog/becoming-an-hdsa-center-of-excellence/) - This week, HDSA began soliciting Letters of Interest from Huntington’s disease clinics that would like to be considered for HDSA Center of Excellence designation in 2021. HDSA Centers of Excellence provide comprehensive multidisciplinary clinical services to families affected by HD, including opportunities to participate in clinical research. Any clinic or neurology service in the United States may apply as
- [Triplet Therapeutics: Clinical Candidate and Natural History Study](https://hdsa.org/blog/triplet-therapeutics-clinical-candidate-and-natural-history-study/) - One of the hottest topics in HD research over the past several years is the idea that CAG repeats in the HD gene can expand or shrink during a person’s lifetime. An adult whose blood test shows 42 CAG repeats in the HD gene might have some cells in their brain or liver which have 60, or 100, or even 1000
- [Huntington’s Disease Featured on ABC News ](https://hdsa.org/blog/huntingtons-disease-featured-on-abc-news/) - Huntington’s disease got the spotlight in early July on national news in a story featuring two families grappling with the diagnosis. The 15-minute segment features Kelsey Porter, wife of Scott Porter (Friday Night Lights) and Texas native Justin Furstenberg, who both carry the gene for HD. Upon learning of her mother’s diagnosis, Kelsey decided to get tested and ultimately to pursue parenthood through
- [Explore Huntingtin in 3D](https://hdsa.org/blog/explore-huntingtin-in-3d/) - HDSA Berman-Topper Fellow Dr. Rachel Harding has been working on understanding the shape of the huntingtin protein and how it interacts with other proteins. She has recently contributed to the creation of a high-resolution, interactive model. Rachel is committed to making all of her data public to promote open and collaborative science, soanyone can view (and play with) this model. It’s fun to drag huntingtin around on your computer screen and check it out from all sides in 3D!
- [First HD Patients Dosed in uniQure Gene Therapy Study](https://hdsa.org/blog/first-hd-patients-dosed-in-uniqure-gene-therapy-study/) - This week marks a major milestone in HD research: the first two patients were dosed in the world’s first gene therapy study for HD. On June 19th, uniQure announced in a press release that two brave participants had undergone the brain surgery required to deliver the experimental huntingtin-lowering therapy AMT-130. The surgeries took place at the Ohio State University’s Wexner Medical Center, which is a designated HDSA Center of Excellence. The
- [Thank You for Participating in Virtual HDSA Convention](https://hdsa.org/blog/thank-you-for-participating-in-virtual-hdsa-convention/) - We’d like to extend a huge thanks to all of those who participated in HDSA’s Virtual Convention from June 4th - June 7th. Despite our inability to meet in New Orleans this year, the enthusiasm from the community and the high level of engagement was inspiring. On the science front, hundreds of participants attended sessions highlighting HD research from around the globe and visited
- [Virtual HDSA Convention is This Week!](https://hdsa.org/blog/virtual-hdsa-convention-is-this-week/) - The 2020 HDSA Convention is this week, and it’s happening virtually. Below is the research-related programming that requires registration. Follow the links to sign up and reserve your spot. All scheduled sessions are in Eastern Time. Ask the Scientist Anything (Friday, June 5th, 2 pm): Dr. Ed Wild and Dr. Jeff Carroll do a live Q&A with
- [HDSA Announces Recipient of the 2020 Berman-Topper HD Career Development Fellowship](https://hdsa.org/blog/hdsa-announces-recipient-of-the-2020-berman-topper-hd-career-development-fellowship/) - The 2020 HDSA Berman-Topper fellowship has been awarded to Dr. Yasaman Gholamalipour for her proposal entitled “Development and delivery of CRISPR-Cas9 nickases to correct the mutant huntingtin gene.” Check out HDSA’s press release here. Dr. Gholamalipour will conduct the research at the University of Massachusetts under the guidance of Dr. Neil Aronin and with additional mentorship from Dr. Michal Brodsky. Her project will attempt to reverse the CAG repeat expansion sequence in
- [Virtual HDSA Convention Research Forum](https://hdsa.org/blog/virtual-hdsa-convention-research-forum/) - HDSA’s 2020 Convention has gone virtual, and participation is free – though registration for some of the sessions is required due to limited space. Virtual Convention is taking place from June 4th - 7th, and traditionally, the Saturday of Convention (June 6th) is devoted to a research forum. Although we can’t be in one location in person this year, we’ve planned the same great scientific programming, designed to convey the latest news in HD
- [Upcoming HDSA Research Webinar ](https://hdsa.org/blog/upcoming-hdsa-research-webinar-2/) - We are excited about an upcoming HDSA research webinar this coming Tuesday, May 19th at 12 PM Eastern. This work, presented by Annexon Biosciences, was born out of studies conducted by HDSA Human Biology Fellow Dr. Daniel Wilton. Annexon is developing therapies to preserve connections between neurons in the HD brain. Dr. Enchi Liu, Vice President and Global Program Team Leader, and Dr. Sanjay Keswani, Chief Medical officer, will talk
- [HDSA Awards Five 2020 Donald King Fellowships  ](https://hdsa.org/blog/hdsa-awards-five-2020-donald-king-fellowships/) - HDSA’s Donald King Summer Research Fellowship is an opportunity for undergraduates with an interest in Huntington’s disease research to complete an internship in an HD laboratory. Donald King was a tireless advocate who served on HDSA’s Board of Directors between 1999 and 2003 and passed away in 2004. This year HDSA’s Scientific Advisory Board selected a record five fellows
- [Exercise & HD](https://hdsa.org/blog/exercise-hd/) - Exercise has gotten a lot of media attention in the recent past as a way for people with neurological disorders to manage their symptoms and potentially change the progression of their disease. As part of our new web series, HDSA recently hosted an educational webinar on exercise and HD, led by Lori Quinn, a physical
- [May Is Huntington's Disease Awareness Month](https://hdsa.org/blog/may-is-huntingtons-disease-awareness-month/) - #LetsTalkAboutHD is a social media initiative during Huntington’s Disease Awareness Month in May to encourage families to share their experiences with HD. You can share a video, a photo or a written story to help raise awareness – HD impacts every family differently and it’s time the world knows our story. All stories are welcome
- [HDSA's Coffee Walk with Dr. George Yohrling](https://hdsa.org/blog/hdsas-coffee-walk-with-dr-george-yohrling/) - HDSA’s Coffee Walk is a series of video conversations between Chris Cosentino, Director of Marketing & Communications, and other members of the HDSA team, enjoying coffee on the streets of New York City. Filmed before COVID-19 confined HDSA’s NYC staff to our homes, the most recent Coffee Walk follows Chris and Dr. George Yohrling, Chief Scientific Officer and Chief
- [PBS Airs “The Gene: An Intimate History”  ](https://hdsa.org/blog/pbs-airs-the-gene-an-intimate-history/) - Huntington’s disease is featured in Part 1 of the Ken Burns film The Gene: An Intimate History, which aired this week on PBS and can be viewed online. This documentary “weaves together science, history and personal stories for a historical biography of the human genome, while also exploring breakthroughs for diagnosis and treatment of genetic diseases and the
- [Human Biology Project Now Accepting Letters of Intent](https://hdsa.org/blog/human-biology-project-now-accepting-letters-of-intent/) - Despite the current circumstances, HDSA’s support for HD families will not waver. This includes our commitment to research, and this week, our largest initiative, the HD Human Biology Project, is accepting letters of intent. The goal of this program, launched in 2013, is to foster innovative research in humans or human tissues, in collaboration with HDSA Centers of Excellence or other HD
- [Anniversary of Discovery of the HD Gene](https://hdsa.org/blog/anniversary-of-discovery-of-the-hd-gene/) - Today, March 26th, in 1993, the discovery of the CAG repeat mutation that causes Huntington’s disease was published. The authors were the Huntington’s Disease Collaborative Research Group, an assembly of scientists across six institutions. Around 1984, the search had been narrowed to a certain “neighborhood” on chromosome 4, but it took another decade to determine that the cause of HD is a CAG repeat mutation in the huntingtin gene.
- [Louise Vetter Discusses HDSA's HD Trialfinder](https://hdsa.org/blog/louise-vetter-discusses-hdsas-hd-trialfinder/) - HDSA’s President and CEO Louise Vetter spoke on Friday, March 13th with James Valvano of We Have a Face, an organization dedicated to broadening global awareness of Huntington’s disease. On their podcast, “We Have a Voice” Radio, James interviews people who are shaping care, research, and advocacy for HD. This week’s topic was HD Trialfinder, HDSA’s clinical trial database and matching service (www.hdtrialfinder.org). Louise and James spoke about
- [Icons in HD Share Their Stories](https://hdsa.org/blog/icons-in-hd-share-their-stories/) - HD made big news this week with a story in the New York Times about Dr. Nancy Wexler of the Hereditary Disease Foundation, who spearheaded the hunt for the HD gene. After decades of effort in the research field that have made possible many of today’s discoveries, Nancy was finally ready to share that she has HD,
- [HDBuzz Coverage of CHDI's 15th Annual HD Therapeutics Conference](https://hdsa.org/blog/hdbuzz-coverage-of-the-chdi-hd-therapeutics-conference/) - Our friends at HDBuzz created phenomenal real-time summaries of the presentations at the HD Therapeutics Conference held by CHDI last week in Palm Springs, California. HDBuzz writers tweeted as the speakers shared their findings over the course of three days. If you want a quick overview of the hottest topics in HD research today, check out the three days of Twitter
- [CHDI's Huntington's Disease Therapeutics Conference](https://hdsa.org/blog/chdi-hd-therapeutics-conference/) - This week marks the 15th annual HD Therapeutics Conference, hosted by CHDI, a private foundation devoted to HD research. HD staff members are in attendance absorbing the latest news in drug discovery and clinical trials for HD. To kick off the conference, keynote speaker Amy Merkel, yoga teacher, community advocate, and person with HD, shared
- [HDSA Research Webinar on Brain Development ](https://hdsa.org/blog/hdsa-research-webinar-on-brain-development/) - On Wednesday February 19th, Dr. Peg Nopoulos, Director of the HDSA Center of Excellence at the University of Iowa, presented an HDSA webinar on her research into the development of the brain in youth at risk for HD. She discussed with great clarity her findings and what they mean for HD treatment, and left time for a
- [Research Survey on HD & Romantic Relationships](https://hdsa.org/blog/research-survey-on-hd-romantic-relationships/) - HDSA works with students and researchers to review HD research surveys and make them available on our survey page. Participating in a survey is a great way to contribute to HD research from the comfort of your home or on the go. This week is your last chance to take part in in a short confidential research survey on HD and romantic relationships. If you
- [HDSA Expands Centers of Excellence Program to 50 Sites](https://hdsa.org/blog/hdsa-expands-centers-of-excellence-program-to-50-sites/) - HDSA Centers of Excellence provide world-class multidisciplinary care to families all over the United States. Professionals at these locations include neurologists, psychiatrists, social workers, therapists, and counselors with extensive HD experience who work together to provide care and support for families. Centers of Excellence must also demonstrate their ability to provide clinical research opportunities. Read more about the 2020 funding increase
- [NOW AVAILABLE: Research Year in Review Webinar](https://hdsa.org/blog/research-year-in-review-webinar-now-available/) - HDSA’s annual Research Year in Review webinar is now available to view. Check it out for an overview of HDSA’s research activities over the past year, how the research landscape has changed over the course of the past decade, and how we are planning for a future that includes HD therapies. The 2020 HD Research
- [HDSA Publishes 2019 Year in Review](https://hdsa.org/blog/hdsa-publishes-2019-year-in-review/) - This week HDSA issued the 2019 edition of our Year In Review Magazine, which features highlights from HDSA’s Mission-related programs and regional events as well as a recap of our research initiatives and scientific achievements in HD. Check it out for a great overview of progress in 2019. 35th Annual HDSA Convention Registration Now
- [New Online Application System for HDSA Research Grants](https://hdsa.org/blog/new-online-application-system-for-hdsa-research-grants/) - HDSA’s research program has expanded in recent years, and in 2020 we’re using a new online platform to help smooth the application and review process. Right now we have two open applications, the Berman-Topper HD Career Development Fellowship, which supports young scientists who desire to devote their career to Huntington’s disease, and the Donald A. King Summer Research Fellowship,
- [Upcoming HDSA Research Webinar](https://hdsa.org/blog/upcoming-hdsa-research-webinar/) - 2019 was a big year for HD research, and we’ll be recapping HDSA’s research activities, and the field’s major discoveries and opportunities in our annual Research Year in Review Webinar. This year we’re also taking the opportunity to discuss how we’re planning for the future in anticipation of genetic therapies. When: January 22nd, 2020, 12-1 pm Eastern time
- [Wave Life Sciences Announces Data and Expansion of PRECISION-HD Studies ](https://hdsa.org/blog/wave-life-sciences-announces-data-and-expansion-of-precision-hd-studies/) - Happy New Year from HDSA! To wrap up 2019, we received some exciting clinical trial news. Wave Life Sciences is conducting the PRECISION-HD1 and PRECISION-HD2 studies to test two experimental huntingtin-lowering drugs. On December 30th, 2019, Wave announced the top-line results of the PRECISION-HD2 study in a press release. They also released a letter to the HD community. There’s
- [HDSA Awards $50,000 in Clinical Research Pilot Grants](https://hdsa.org/blog/hdsa-awards-50000-in-clinical-research-pilot-grants/) - This year HDSA was able to offer a new grant mechanism to foster novel clinical research studies within our Centers of Excellence Network. Applications for this grant mechanism were open to all 47 HDSA Centers of Excellence and their six partner sites. Grants of $12,500 were awarded to four research teams: HDSA Center of Excellence Partner
- [Roche Video About HD Features Berman-Topper Fellow ](https://hdsa.org/blog/roche-video-about-hd-features-berman-topper-fellow/) - Roche recently created a video about Huntington’s disease that is narrated by HDSA Berman-Topper Fellow Lauren Byrne. The video is a great tool for explaining the genetics, the causes, and the symptoms of HD. In addition to being an HD researcher, Lauren is from a large HD family in Northern Ireland. Her work, in the laboratory of Dr. Ed Wild at
- [STAT Article: HD Clinical Trials Bring Hope ](https://hdsa.org/blog/stat-article-hd-clinical-trials-bring-hope/) - This week an article in STAT talks about the ongoing Roche GENERATION-HD1 trial. The story explains Huntington’s disease and covers the experiences of different individuals who are putting their hopes in the GENERATION-HD1 and other clinical trials. The accompanying video describes a trial participant’s family story. Lots of voices are captured here, including several HD families, HDSA’s Dr. George Yohrling,
- [Happy Thanksgiving from HDSA](https://hdsa.org/blog/happy-thanksgiving-from-hdsa/) - Happy Thanksgiving from all of us at HDSA! We are especially grateful for your engagement in research – it’s how medicine moves forward. If you’re a reader of this blog, you’re actively choosing to stay informed about HD news, HD science, and HDSA research activities, and we thank you for trusting HDSA as a source. The more
- [The Marker: HDSA's 2019 Research Report](https://hdsa.org/blog/the-marker-hdsas-2019-research-report/) - Each year, HDSA prepares a report that covers what happened in HD research this year. This year, The Marker includes HDSA research activities like our fellowships, communications, efforts to increase family access to research opportunities, and global collaborations to include family voices in industry decisions. It also covers ongoing and upcoming clinical trials, 2019 hot topics in HD
- [HSG Announces New Phase 3 Study To Test Drug For HD Chorea](https://hdsa.org/blog/hdbuzz-covers-new-huntingtin-lowering-strategy/) - The Huntington Study Group issued a press release about a new study to treat the movements associated with HD, known as chorea. The study, called KINECT-HD, will take place at 55 sites across the US and Canada. Some locations have begun enrolling participants, aged 18 to 75, with a clinical diagnosis of HD. The trial lasts 18
- [Scientists Experiment with a New Huntingtin-Lowering Strategy](https://hdsa.org/blog/scientists-experiment-with-a-new-huntingtin-lowering-strategy/) - The huntingtin-lowering drugs in clinical trials right now are focused on attacking mutant huntingtin on the RNA level – essentially destroying the recipe that makes the toxic huntingtin protein. But scientists are constantly searching for new huntingtin-lowering strategies, including ones to help brain cells clean up the toxic protein that has already built up. Cells
- [Insights on HD Age of Onset    ](https://hdsa.org/blog/insights-on-hd-age-of-onset/) - Several groups of scientists have reported recently on how CAG length “hiccups” or expansions during life can influence the age of onset of symptoms. Interrupting or shortening a long stretch of CAGs can delay the onset of symptoms, and the addition of CAGs in certain cells during the course of a person’s life can cause symptoms to come faster. HDSA is funding
- [World’s First HD Gene Therapy Trial ](https://hdsa.org/blog/worlds-first-hd-gene-therapy-trial/) - Boston-based company uniQure is conducting the first HD gene therapy trial of their drug AMT-130. The Phase 1/2 trial is designed to test the safety of AMT-130, and uniQure shared more about the trial in a community statement during HDSA’s 2019 Convention. Further details, including site locations, have emerged this week and can be viewed at www.hdtrialfinder.org and at clinicaltrials.gov. AMT-130 is a piece of genetic
- [HDSA Names Five 2019 HD Human Biology Project Fellows](https://hdsa.org/blog/hdsa-names-five-2019-hd-human-biology-project-fellows/) - This week, we announced the winners of the 2019 HD Human Biology Fellowship. These young scientists were chosen for their well-designed projects that focus on understanding Huntington’s disease as it occurs in humans. Below are their names and the basic questions they will focus on in their HD research. Danielle Larson, MD, Northwestern University Feinberg
- [This Week in HD History: Remembering Marjorie Guthrie](https://hdsa.org/blog/this-week-in-hd-history-remembering-marjorie-guthrie/) - On October 6th, 1917, HDSA’s founder Marjorie Guthrie was born. Not only did Marjorie found the Committee to Combat Huntington’s Disease, which became HDSA, she was a great advocate for HD research. She chaired or was a member of several research-related public and governmental committees, including the National Committee for Research in Neurological and Communicative
- [This Week in HD History: Huntingtin Aggregates](https://hdsa.org/blog/this-week-in-hd-history-huntingtin-aggregates/) - One of the telltale signs of Huntington’s disease is the clumps of huntingtin protein that build up all over the brain. It’s a bit like what would happen to a city if the garbage collectors went on strike. But until the discovery of the HD gene and the development of ways to visualize huntingtin protein,
- [Meeting of HDSA’s Scientific Advisory Board](https://hdsa.org/blog/meeting-of-hdsas-scientific-advisory-board/) - HDSA’s Scientific Advisory Board will gather this week at our national offices in New York City to discuss this year’s applications for the Human Biology Project, our largest research initiative. The goal of this program, launched in 2013, is to foster innovative research in humans or human tissues, in collaboration with HDSA Centers of Excellence
- [Last Chance to Participate in HDSA’s Survey About PGD-IVF](https://hdsa.org/blog/last-chance-to-participate-in-hdsas-survey-about-pgd-ivf/) - HDSA’s PGD-IVF survey is closing on September 20th – please add your voice so that we can best serve the community around this issue! HDSA is committed to providing individuals and families impacted by HD with the resources they need to make informed choices. As part of this mission, HDSA wants to know how HD
- [Why Families Are Critical To HD Research](https://hdsa.org/blog/why-families-are-critical-to-hd-research/) - Ever wonder why HDSA and the HD research community is always talking about Enroll-HD? Are you curious about the HD research foundation known as CHDI and what they do? Do you want to know how participants in studies that don’t involve any drugs (known as observational research) are actually speeding up the discovery of new
- [New HD Research Survey on Occupational Therapy](https://hdsa.org/blog/new-hd-research-survey-on-occupational-therapy/) - Occupational therapists at CUNY York College are conducting a 5-minute survey of both patients and caregivers that seeks to understand the interests and quality of life of people living with Huntington’s disease. Research has shown that occupational therapy and modified physical activities like tai chi, dance, gardening, and exercise programs can be helpful for people
- [Turning Off the Cause of Huntington’s Disease](https://hdsa.org/blog/turning-off-the-cause-of-huntingtons-disease/) - Blogger and HD advocate “Gene Veritas” shared a post this week about gene editing and an upcoming gene therapy symposium where he will speak alongside leading scientists and biotech executives to share the challenges faced by families with Huntington’s disease. It’s exciting to hear that industry leaders are paying closer attention, exploring HD research, and
- [“Hiccup” in HD Gene Contributes to Age of HD Onset](https://hdsa.org/blog/hiccup-in-hd-gene-contributes-to-age-of-hd-onset/) - The age that Huntington’s disease symptoms appear can vary a lot from person to person. For decades, scientists have been exploring the reasons behind this, and an important new finding has recently emerged. The vast majority of people with HD have a certain type of genetic “hiccup” near the end of their CAG repeat –
- [HDSA Accepting Letters of Interest for 2020 Centers of Excellence Program](https://hdsa.org/blog/hdsa-accepting-letters-of-interest-for-2020-centers-of-excellence-program/) - HDSA’s Centers of Excellence (COEs) provide multidisciplinary care services to families affected by Huntington’s disease, including neurology, psychology, genetic counseling, social services, physical and occupational therapy, and more. Each Center undergoes rigorous yearly review by an expert advisory committee of doctors, researchers, and family members. Centers of Excellence are evaluated not only on their ability
- [Participate in HDSA’s Survey About PGD-IVF](https://hdsa.org/blog/participate-in-hdsas-survey-about-pgd-ivf/) - HDSA is committed to providing individuals and families impacted by HD with the resources they need to make informed choices. As part of this mission, HDSA wants to know how HD families feel about different family planning options that can make sure HD is not passed on to future generations. Technologies like Preimplantation Genetic Diagnosis
- [PRECISION-HD2 Results from Wave Life Sciences Expected in Late 2019](https://hdsa.org/blog/precision-hd2-results-from-wave-life-sciences-expected-in-late-2019/) - Wave Life Sciences is conducting two early safety studies of huntingtin-lowering therapies, called PRECISION-HD1 and PRECISION-HD2. In a business update this week, Wave announced that recruitment is fully completed for PRECISION-HD2 and that top-line clinical results are expected in late 2019. Wave’s therapies focus on lowering only harmful mutant huntingtin protein while leaving the normal
- [Gene Silencing Therapy for Amyloidosis Approved in the UK](https://hdsa.org/blog/gene-silencing-therapy-for-amyloidosis-approved-in-the-uk/) - Last week saw the approval of a genetic therapy for a rare disease called hereditary transthyretin-mediated amyloidosis (hATTR amyloidosis). As with Huntington’s disease, every child of a parent with hATTR amyloidosis has a 50/50 chance of inheriting the gene that causes it, and symptoms develop and worsen over a long period of time. It affects
- [The Blog Returns: 34th Annual HDSA Convention Research Recap](https://hdsa.org/blog/the-blog-returns-34th-annual-hdsa-convention-research-recap/) - This week, Dr. Fox returns from maternity leave and resumes the HDSA research blog! The 34th Annual HDSA Convention in Boston was a great success, with the largest attendance on record (1,225 guests). Huntington’s disease research had a strong presence, with talks from HDSA fellows, sessions on gene therapy, research Q&As, and representatives from biotech
- [#LetsTalkAboutHD](https://hdsa.org/blog/letstalkabouthd/) - May is HD awareness month, and every day HDSA will be sharing family stories, celebrity PSAs, HD facts and much more across social media – and we want to hear from you! Do you have a story about participating in or conducting HD research? Whether your story involves science or not, please check out this
- [Roche/Genentech Amends GENERATION-HD1 Study](https://hdsa.org/blog/roche-genentech-amends-generation-hd1-study/) - On Thursday, March 21st, Roche/Genentech released a Community Statement about changes to the GENERATION-HD1 study, the clinical trial testing huntingtin-lowering drug RG6042. Essentially, they have decided to change the protocol to make it less taxing for families and health professionals: participants will have lumbar punctures (spinal taps) to receive the drug every other month instead
- [Interview with Roche Representatives](https://hdsa.org/blog/interview-with-roche-representatives/) - A few weeks ago we blogged about the Annual CHDI Huntington’s disease Therapeutics Conference in Palm Springs, California. This week, Gene Veritas shared an interview with Dr. Scott Schobel, the clinical science leader for Roche’s huntingtin-lowering drug, RG6042. His post describes the study’s background, design, and execution, and Dr. Schobel answered Gene’s questions about the
- [Gene Therapy 101](https://hdsa.org/blog/gene-therapy-101/) - In addition to ongoing clinical trials of Roche/Genentech and Wave huntingtin-lowering therapies, a number of other companies are developing drugs aimed at lowering levels of mutant huntingtin in the body and brain. These novel approaches rely on “gene therapy,” which refers to an addition, removal, or change in DNA or RNA that has the potential
- [Annual CHDI Huntington’s Disease Therapeutics Conference](https://hdsa.org/blog/annual-chdi-huntingtons-disease-therapeutics-conference/) - This week in Palm Springs, California, CHDI Foundation hosted the 14th Annual HD Therapeutics Conference. This yearly conference draws academic and industry researchers from all over the world to share their work about Huntington’s disease and participate in discussions about the latest in HD drug discovery. HD Buzz live-tweeted the entire 3-day conference in real
- [Second Annual HD-COPE Meeting](https://hdsa.org/blog/second-annual-hd-cope-meeting/) - The Huntington’s Disease Coalition for Patient Engagement (HD-COPE) met this week in New York City. HD-COPE unites organizations serving HD families in Europe, Canada, and the USA to help give patients a direct voice in clinical research by facilitating communication between the HD community and pharmaceutical companies working on drugs for HD. Family input is
- [HDSA Research Webinar on DNA Repair Next Thursday, February 20th](https://hdsa.org/blog/hdsa-research-webinar-on-dna-repair-next-thursday-february-20th/) - Over the past 15-20 years we have learned that the CAG repeat mutation that causes HD is dynamic – the DNA code isn’t constant, as expected, but tends to expand. This can happen from parent to child (sometimes causing juvenile HD). It can also happen throughout a person’s life in certain cells and organs, like
- [HDSA Expands Centers of Excellence Program to 47 Sites](https://hdsa.org/blog/hdsa-expands-centers-of-excellence-program-to-47-sites/) - HDSA Centers of Excellence provide world-class multidisciplinary care to families all over the United States. Professionals at these locations include neurologists, psychiatrists, social workers, therapists, and counselors with extensive HD experience who work together to provide care and support for families. Because HDSA is highly committed to supporting clinical research, Centers of Excellence must also
- [First Patient Enrolled in Pivotal Huntingtin-Lowering Trial](https://hdsa.org/blog/first-patient-enrolled-in-pivotal-huntingtin-lowering-trial/) - This week, Ionis Pharmaceuticals issued a press release stating that the Phase 3 trial of the huntingtin-lowering therapy formerly known as IONIS-HTTRx has formally begun. This trial is in the hands of a larger company called Roche/Genentech, and the drug is now called RG6042. Roche/Genentech issued a letter to the global HD community which we
- [Two Announcements From Drug Companies](https://hdsa.org/blog/two-announcements-from-drug-companies/) - This week, we learned that the SIGNAL trial has completed recruitment for its Phase 2 study of VX15/2503 (pepinemab), a drug made by Vaccinex. VX15 is an antibody designed to bind to the semaphorin 4D (SEMA4D) protein, a molecule that guides the activation and movement of cells within the body, and which may be responsible
- [2018 Research Year In Review Webinar Available](https://hdsa.org/blog/2018-research-year-in-review-webinar-available/) - If you weren’t able to join us for the 2018 HD Research Year-in-Review webinar or would like to have another look, it’s now available on our YouTube channel. On Wednesday January 16th, along with HDSA's Dr. George Yohrling, we presented an overview of HDSA’s research activities and hot topics in HD for 2018, talked about
- [American Society of Human Genetics Chooses Huntington’s Disease as Topic for 2019 Essay Contest](https://hdsa.org/blog/american-society-of-human-genetics-chooses-huntingtons-disease-as-topic-for-2019-essay-contest/) - The American Society of Human Genetics (ASHG) is a nonprofit organization whose mission is to advance human genetics in science, health, and society through excellence in research, education, and advocacy. They hold a yearly essay contest for high schoolers, grades 9-12, promoting education and reflection upon genetic topics and awareness of DNA Day (Thursday, April
- [2018 Research Year in Review Webinar](https://hdsa.org/blog/2018-research-year-in-review-webinar/) - To complement our 2018 Research Report, George and Leora will be sharing this year’s HD research highlights in our 2018 Research Year in Review Webinar on Wednesday, January 16th, 2019, from 12-1 pm Eastern time. Register to attend the webinar here. New Year, New SAB Member HDSA’s Scientific Advisory Board (SAB) is composed of
- [Roche/Genentech Announces Locations of GENERATION HD1 Drug Study](https://hdsa.org/blog/roche-genentech-announces-locations-of-generation-hd1-drug-study/) - On Wednesday, December 19th, Roche/Genentech announced the US and Canadian locations for their upcoming study to test efficacy of the huntingtin-lowering therapy RG6042. This will be a 2-year study in people with early diagnosed HD. It will involve monthly lumbar punctures (spinal injections) to deliver RG6042 or a placebo, as well as clinical tests and scans
- [HDSA's 2018 Research Report Is Now Available](https://hdsa.org/blog/hdsas-2018-research-report-is-now-available/) - This week, HDSA published the 2018 Research Report, a written re-cap of global HD research progress and how HDSA research dollars were put to use this year. We cover the work of HDSA-supported fellows, this year’s hot topics, conferences, clinical research news, and more, in a redesigned format. It’s a great summary of what happened
- [HD Buzz on Huntingtin-Lowering Strategies](https://hdsa.org/blog/hd-buzz-on-huntingtin-lowering-strategies/) - The Ionis/Roche/Genentech Huntington’s program has received a lot of press in recent months. However, several additional companies have been working towards the same goal of developing therapies to target the genetic source of HD. One company is testing an antisense oligonucleotide (ASO) therapy, already in clinical trials, while others have novel drugs in the works
- [Happy Thanksgiving!](https://hdsa.org/blog/happy-thanksgiving/) - We hope you had a Happy Thanksgiving, and a big thank you to our readers for your interest in research news and scientific activities at HDSA. Medicine moves forward through community engagement and research participation, along with the work of hundreds of health workers and scientists who have dedicated their lives to fighting HD. We’re
- [Roche/Genentech Announces US & Canadian Locations of Observational Natural History Study](https://hdsa.org/blog/roche-genentech-announces-us-canadian-locations-of-observational-natural-history-study/) - On Saturday at the Huntington Study Group Meeting in Houston, Roche/Genentech announced the US and Canadian locations for their Natural History Study. This study does not involve drug treatments. It will monitor people with early manifest Huntington’s disease by testing their symptoms and measuring their mutant huntingtin levels over time. It will last for 16
- [Dr. Amber Southwell Featured on UCF Website](https://hdsa.org/blog/dr-amber-southwell-featured-on-ucf-website/) - HDSA-supported researcher Dr. Amber Southwell is featured this week in an article about huntingtin-lowering. Her lab’s recent publication showed that an antisense oligonucleotide (ASO) designed to lower mutant huntingtin improved cognitive and behavioral problems in HD mice. Dr. Southwell was a 2015 HD Human Biology Fellow, and with HDSA’s support was able to transition to
- [HDSA Now Accepting Applications for Two HD Research Funding Opportunities](https://hdsa.org/blog/hdsa-now-accepting-applications-for-two-hd-research-funding-opportunities/) - This week, we have opened up applications for HDSA research funding. Learn about how we support HD research and pass it on these opportunities to the scientists in your life! 2019 Berman/Topper Family HD Career Development Fellowship The Huntington's Disease Society of America (HDSA) believes we must ensure that the pipeline of passionate and bright
- [HDSA Names Five HD Human Biology Fellows For 2018](https://hdsa.org/blog/hdsa-names-five-human-biology-fellows-for-2018/) - This week, we announced the winners of the 2018 HD Human Biology Fellowship. These young scientists were chosen for their well-designed projects that focus on understanding Huntington’s disease as it occurs in humans. Below are their names and the basic questions they will focus on in their HD research. Rossana Foti, University of Copenhagen, Denmark:
- [FAQ About Upcoming Genentech/Roche Trials](https://hdsa.org/blog/faq-about-upcoming-genentech-roche-trials/) - HDSA received hundreds of questions during and after the September 26th webinar presented by Genentech/Roche representatives about upcoming clinical trials. We thank you for your patience as we prepared responses to your frequently asked questions with input from Genentech/Roche. This FAQ document can be accessed on our website at the following link: https://hdsa.org/wp-content/uploads/2018/10/FINAL-101518_FAQ-about-Upcoming-Roche-Studies_for-HDSA.pdf Thanks again
- [Upcoming HDSA Research Webinar on New Strategies for Huntingtin-Lowering](https://hdsa.org/blog/upcoming-hdsa-research-webinar-on-new-strategies-for-huntingtin-lowering/) - ASOs therapies have dominated the news recently, but did you know that there are many additional strategies being developed in HD labs for huntingtin lowering? PhD student Julia Alterman will give a webinar next week about a method for interfering with huntingtin RNA and how she is testing it in animal models of HD. Julia
- [New Study Provides Valuable Insight Into Juvenile Huntington’s Disease](https://hdsa.org/blog/new-study-provides-valuable-insight-into-juvenile-huntingtons-disease/) - When symptoms of HD start before the age of 20, this is known as juvenile onset Huntington’s disease, or JHD. A team in Italy led by Dr. Fernando Squitieri did a large analysis of data from big studies like REGISTRY and ENROLL, comparing JHD with adult HD and revealing new insights into how Huntington’s affects
- [Roche/Genentech Clinical Trial Update Webinar Available to View](https://hdsa.org/blog/roche-genentech-clinical-trial-update-webinar-available-to-view/) - If you missed the clinical trials update webinar presented by Roche on Wednesday the 26th, it’s now available for viewing on HDSA’s youtube channel and will be uploaded to our website shortly. In this webinar, four Roche team members, J.P. Sacksteder, Mai-Lise Nguyen, Erik Lundgren, and Dr. Scott Schobel, provided a clear community update on
- [Roche Provides Info About Ongoing HD Program & Announces Two Upcoming Trials; HDSA to Host Webinar](https://hdsa.org/blog/roche-provides-info-about-ongoing-hd-program-hdsa-to-host-webinar/) - This past Sunday at the plenary meeting of the European Huntington’s Disease Network (EHDN), Roche Pharmaceuticals announced some details about two upcoming clinical trials. This scientific presentation in Vienna was followed by a Community Statement from Roche/Genentech to HD families worldwide that HDSA shared via our website, social media, and email. In summary, Roche will
- [Register for the Upcoming HDSA Webinar with Roche/Genentech on Wed. September 26th](https://hdsa.org/blog/register-for-the-upcoming-hdsa-webinar-feat-roche-genentech-on-wed-september-26th/) - This week, members of the HDSA team are attending the 2018 plenary meeting of the European Huntington’s Disease Network (EHDN) in Vienna, Austria. Alongside the latest findings from HD researchers worldwide, Ionis Pharmaceuticals and Roche/Genentech will continue to present the results from the successful safety trial of their huntingtin-lowering ASO. The HD research community is
- [Interview with 2018 Berman-Topper Fellow - Dr. Rachel Harding](https://hdsa.org/blog/interview-with-2018-berman-topper-fellow-dr-rachel-harding/) - This week, meet Dr. Rachel Harding from the University of Toronto, the recipient of this year’s Berman-Topper Family HD Career Development Fellowship. In our latest Researcher Spotlight, we asked Dr. Harding about her work, her goals, and her life outside the lab. She believes strongly in openly sharing scientific data, and you can also follow
- [HD Featured in Science Magazine](https://hdsa.org/blog/hd-featured-in-science-magazine/) - The prestigious Science magazine published an article on Huntington’s disease this week, describing the huntingtin-lowering ASO drug developed by Ionis, and profiling the very first trial participant. The article covered her family history with HD and her current experience in the open-label trial, and featured discussions with her physician Dr. Blair Leavitt, a researcher at
- [Proposal to Streamline Gene Therapy Evaluation by the FDA](https://hdsa.org/blog/proposal-to-streamline-gene-therapy-evaluation-by-the-fda/) - This week, the FDA released a proposal to streamline the way they oversee the evaluation of protocols related to gene therapy. Essentially the US government has recognized that gene therapies are an important emerging class of medicines, and they’re trying to re-vamp the administrative process so that it’s shorter and less repetitive. Several NIH and
- [Roche Huntingtin-Lowering Drug Gains PRIME Status from EMA](https://hdsa.org/blog/roche-huntingtin-lowering-drug-gains-prime-status-from-ema/) - On August 4th, Roche Pharmaceuticals announced that their huntingtin-lowering therapy was granted PRIME status from the European Medicines Agency (EMA). The EMA is the European equivalent of the United States Food and Drug Administration (FDA). In Europe, PRIME (PRIority MEdicines) designation means that the EMA has agreed that this drug, RG6042 (formerly IONIS-HTTRx) could potentially
- [First Gene-Silencing Drug Approved by the FDA](https://hdsa.org/blog/first-gene-silencing-drug-approved-by-the-fda/) - This week marked the first FDA approval of a gene silencing drug, for a rare hereditary disease called ATTR amyloidosis. A successful trial determined that the drug, ONPATTRO (patisiran), helped with people’s symptoms, like polyneuropathy (pain from nerve damage), dizziness, and stomach issues, and improved quality of life, activities of daily living, and nutritional status.
- [Voice Your Opinions About The Future Of CRISPR](https://hdsa.org/blog/voice-your-opinions-about-the-future-of-crispr/) - Community research surveys are valuable ways for researchers to get input from HD patients, families and caregivers about a variety of topics, and can help guide strategies for HD research and care. HDSA works with scientists and students to make their university-approved research surveys available for easy online participation through our website. This week, there’s
- [At-Home DNA Kits Require Caution](https://hdsa.org/blog/at-home-dna-kits-require-caution/) - At-home DNA kits like 23 & Me are growing in popularity, and claim to provide information about your health and ancestry. The Washington Post created an FAQ about what you can actually expect to learn – and who gets your info. These kits do not test for genetic disorders like Huntington’s disease. For more information
- [Pipeline of Therapies for HD](https://hdsa.org/blog/pipeline-of-therapies-for-hd/) - The Rare Disease Report covers stories about medicine, finance, and advocacy in rare disease fields. Last week an article explored some of the promising therapies in the pipeline for HD. To learn more about advances in HD research, check out HDSA’s page detailing current preclinical and clinical research studies and their current phase of development.
- [DNA Repair Research Uncovers New Drug Targets](https://hdsa.org/blog/dna-repair-research-uncovers-new-drug-targets/) - Researchers led by Ray Truant at McMaster University in Canada are investigating how DNA repair could help correct some of the damage caused by mutant huntingtin. They tested a molecule that is processed by the body to signal that DNA repair needs to take place. Giving mice high levels of this molecule helped to improve
- [Research Highlights from the 33rd Annual HDSA Convention](https://hdsa.org/blog/research-highlights-from-the-33rd-annual-hdsa-convention/) - As we ease into the summer, enjoy some highlights from our research sessions at HDSA’s 33rd Annual Convention in Los Angeles. The Ionis/Roche ASO drug has gotten lots of press in the past year, but did you know there are additional strategies for lowering huntingtin? Multiple companies and academic laboratories are approaching this goal from
- [HDSA's 33rd Annual Convention Research Forum Video Now Available](https://hdsa.org/blog/hdsas-33rd-annual-convention-research-forum-video-now-available/) - HDSA’s 33rd Annual Convention in Los Angeles from June 7th-9th included the 2018 Research Forum, where ten speakers collaborated to tell a story about the HD gene and the continued work towards designing and testing a huntingtin-lowering therapy. Check it out here and stay tuned for a recap of research news at Convention! CRISPR research
- [HDSA Convention Research Forum](https://hdsa.org/blog/hdsa-convention-research-forum/) - This week we’re hosting the 33rd Annual HDSA Convention in Los Angeles, California. Tune in to the livestream of our Research Forum this Saturday, June 9th beginning at 9 am PDT (12 pm EDT). Sessions will also be recorded for later viewing. Visit HDSA.org/convention for more info and follow us on social media with #HDSAConvention.
- [Huntington’s Disease Featured in Nature Outlook](https://hdsa.org/blog/huntingtons-disease-featured-in-nature-outlook/) - The prestigious journal Nature publishes both research reports and journalistic articles, and is widely read by scientists and non-scientists. This week, Nature published an Outlook edition specifically related to Huntington’s disease. The articles explore how scientists are approaching the biology of HD and Juvenile HD, invite perspectives from at-risk and affected individuals, discuss huntingtin-lowering therapies
- [Participate in a Research Study at the HDSA Convention](https://hdsa.org/blog/participate-in-a-research-study-at-the-hdsa-convention/) - If you are negative for the HD gene, currently participate in Enroll-HD, and will be attending HDSA’s Convention in June, consider volunteering for a research study on Friday, June 8th at the Convention hotel. Dr. Madeleine Sharp is studying how HD affects cognition and she is looking for control participants (negative for HD) to contribute
- [HDSA Announces 2018 Berman-Topper HD Career Development Fellowship Recipient](https://hdsa.org/blog/hdsa-announces-recipient-of-the-2018-berman-topper-hd-career-development-fellowship/) - The 2018 HDSA Berman-Topper fellowship has been awarded to Dr. Rachel Harding for her proposal entitled “Structural and biophysical investigations of DNA and DNA repair protein interactions with huntingtin.” Check out the HDSA press release here. Dr. Harding will conduct the research at the University of Toronto under the guidance of Dr. Cheryl Arrowsmith and
- [May is HD Awareness Month](https://hdsa.org/blog/may-is-hd-awareness-month/) - Join the #HDSAFamily as we turn up the global volume on HD awareness. Visit www.HDSA.org/letstalkaboutHD for more info. Don’t forget to share your stories about participating in HD research! An international Initiative to develop stem cell therapeutics for Huntington’s Disease Research into stem cell treatments for Huntington’s Disease has advanced considerably over the past decade.
- [Positive Trends in Data from Ionis Huntingtin-Lowering Trial](https://hdsa.org/blog/positive-trends-in-data-from-ionis-huntingtin-lowering-trial/) - On April 24th, 2018, Ionis Pharmaceuticals made an announcement about the Phase 1/2 clinical trial of their huntingtin-lowering drug, IONIS-HTTRx (RG6042). As we mentioned last week, the news was shared publicly in a press release and the data was highlighted at the American Academy of Neurology (AAN) Annual Meeting. To clarify the meaning of the
- [Appreciating Research Volunteers](https://hdsa.org/blog/appreciating-research-volunteers/) - This week HDSA is celebrating National Volunteer Appreciation Week. This goes for research, too! We’d like to express our heartfelt thanks to everyone who lends a hand to make HDSA’s work possible and contributes to the progress of HD science. Our understanding and our ability to treat HD is constantly expanding because of extraordinary volunteers
- [Research Forum at HDSA’s 33rd Annual Convention](https://hdsa.org/blog/research-forum-at-hdsas-33rd-annual-convention/) - Huntington’s disease research plays a big role at our annual Convention, which is taking place this year on June 7th-9th in Los Angeles, California. We’ll have talks and poster sessions presented by HDSA-funded scientists including our Donald King Summer Research Fellows, Human Biology Project Fellows, and recipients of the Berman-Topper Career Development Fellowship. Other research
- [Interpreting this Week’s News: Data from the First Phase of the Ionis-Roche Trial](https://hdsa.org/blog/interpreting-this-weeks-news-data-from-the-first-phase-of-the-ionis-roche-trial/) - This week, Ionis Pharmaceuticals shared data from the successful safety trial for their huntingtin-lowering drug. The data confirms what was announced in December 2017: the drug safely lowers mutant huntingtin. No one taking the drug had a serious side effect, and no one dropped out of the trial – these are great signs of a
- [Interpreting this Week’s News: Hope for Gene Therapy, and How to Get it to the Brain](https://hdsa.org/blog/post-3/) - Delivery of genetic therapies to the brain is one of the biggest challenges facing researchers in many fields of neurological disease, including HD. One novel approach, tested only experimentally in mice, is to use a type of harmless virus that can cross from the blood into the brain. Researchers at the University of North Carolina
- [New Partnership to Advance Treatments for Brain Disease](https://hdsa.org/blog/neepartnertoadvance/) - On Monday, HDSA announced a partnership with the ALS Association and Teva Pharmaceuticals on a project to help identify new drug targets for serious diseases of the nervous system, such as chronic pain, ALS, migraine, and Huntington’s disease. Teva is seeking proposals for new ways to design treatments for these and other neurological disorders through
- [25th Anniversary of Discovering the HD gene](https://hdsa.org/blog/march-22nd-2018/) - This week marks 25 years since the identification of the gene that causes Huntington’s disease. The discovery of the repeating CAG sequence in the DNA was made in 1993 by the Huntington’s Disease Collaborative Research Group, an assembly of scientists across six institutions. They had united nearly a decade earlier, in 1984, after Jim Gusella’s
- [Interview Study for Parents and Adolescents about Genetic Risk](https://hdsa.org/blog/interview-study-for-parents-and-adolescents-about-genetic-risk/) - If you are 15-17 years old or are the parent of a 15-17 year old, consider participating in an interview study with researchers at Johns Hopkins on communicating about genetic risk for Huntington’s disease. The 45-minute interview can be conducted by Skype or phone from anywhere in the USA, and each participant will be given
- [HDSA's Human Biology Project](https://hdsa.org/blog/hdsa-human-biology-project/) - The identification of the HD gene led to the development of many animal models that have helped us to better understand the biology of Huntington’s disease. However, in the hunt for effective therapies, the most relevant observations arise from studying human bodies, brains, and cells. In 2013, HDSA launched the Human Biology Project, to help
- [CHDI’s Huntington’s Disease Conference in Palm Springs](https://hdsa.org/blog/chdis-huntingtons-disease-conference-in-palm-springs/) - This week in Palm Springs, California marks the 13th Annual HD Therapeutics Conference. This yearly conference draws academic and industry researchers from all over the world to share their work about Huntington’s disease and participate in discussions about the latest in HD drug discovery. HD Buzz is covering the 3-day conference in real time through
- [Interpreting This Week’s News: Fighting Cancer…With HD?](https://hdsa.org/blog/post-2-test/) - Research studies in recent years have shown that people with Huntington’s Disease and related hereditary CAG repeat disorders have lower rates of cancer than the general population. We’re not sure why that’s the case, but some scientists suspected that the HD gene and its toxic RNA message might actually have some cancer-fighting power. In a
- [First HD-COPE Meeting](https://hdsa.org/blog/welcome-to-hdsa-blog/) - The first meeting of the Huntington’s Disease Coalition for Patient Engagement (HD-COPE) took place in London this week. HD-COPE unites organizations serving HD families in Europe, Canada, and the USA to help give patients a direct voice in clinical research by facilitating communication between the HD community and pharmaceutical companies working on drugs for HD.

## Pages

- [Home](https://hdsa.org/) - Huntington's Disease Society of America - Family Is Everything
- [Staff Directory](https://hdsa.org/about-hdsa/staff/)
- [HDSA Center of Excellence at University of Mississippi Medical Center](https://hdsa.org/hdsa-center-of-excellence-at-university-of-mississippi-medical-center/) - HDSA Center of Excellence at University of Mississippi Medical Center 2550 Flowood Dr Flowood, MS 39232 Director: Juebin Huang Phone number to make appointments: +1 601-984-5500 Clinic Coordinator: Alisa Burr Email: aburr@umc.edu Phone: +1 601-984-5500 Social Worker: Erin Pittman Email: epittman1@umc.edu Phone: +1 601-984-5500
- [Annual Convention](https://hdsa.org/about-hdsa/annual-convention/) - Save the Date for the 41st Annual HDSA CONVENTION ! This year’s convention promises to be an inspiring gathering of patients, families, caregivers, researchers, and advocates all coming together to learn, share, and build hope for the future. Whether you’re new to the HD community or a seasoned participant, there’s something for
- [Careers](https://hdsa.org/about-hdsa/careers/) - Careers
- [Get Involved](https://hdsa.org/get-involved/)
- [HDSA Support Groups](https://hdsa.org/find-help/community-social-support/hdsa-support-groups/) - The Benefits of Sharing Your Experiences With Others HDSA Support Groups are offered by HDSA Chapters, Affiliates, Regions and Centers of Excellence. Support groups can be led by a professional or by a peer (other HD family member or friend). Every support group leader is provided training by HDSA and assigned a mentor who can
- [HDSA Researcher Spotlight: Dr. Chris Kay](https://hdsa.org/hd-research/researcher-spotlight/uninterrupted-dr-chris-kay-on-somatic-expansion-an-unusual-brain-bank-and-the-next-chapter-of-hd-genetics/) - Written by Dr. Tam Maiuri Edited by Dr. Kaitlyn Deschamps Uninterrupted: Dr. Chris Kay on Somatic Expansion, an Unusual Brain Bank, and the Next Chapter of HD Genetics Thirty feet from Dr. Chris Kay's desk is a room where brains are dissected, in the same way, every single time, without exception. When a donated brain arrives in
- [The HDSA Podcast](https://hdsa.org/podcast/) - WELCOME TO THE HDSA PODCAST The HDSA Podcast gives listeners an opportunity to meet members of the Huntington's disease community and get a behind-the-scenes look at the Huntington's Disease Society of America. A new episode will be released every month and please visit www.HDSA.org to learn more about HD and how to get involved. Submit
- [HDSA Center of Excellence at University of Utah](https://hdsa.org/hdsacoeut/) - HDSA Center of Excellence at University of Utah Imaging and Neurosciences Center 729 Arapeen Drive Salt Lake City, UT 84108 Director: Paolo Moretti Co-Director: Meghan Zorn Phone number to make appointments: +1 801-585-7575 Clinic Coordinator: Sidney Heil Email: sidney.heil@hsc.utah.edu Phone: +1 801-585-7575 Social Worker: Brooke Taylor, MSW, CSW Email: Brooke.A.Taylor@hsc.utah.edu Phone: +1 801-585-7575
- [HDSA Researcher Spotlight - Dr. Thiago Macedo e Cordeiro, MD, MS](https://hdsa.org/hd-research/researcher-spotlight/putting-out-the-fire-a-different-kind-of-progress-in-huntingtons-disease/) - Dr. Thiago Macedo e Cordeiro, MD, MS Postdoctoral Research Fellow The Glenn Biggs Institute for Alzheimer's and Neurodegenerative Diseases | The University of Texas Health Sciences Center at San Antonio Putting Out the Fire: A Different Kind of Progress in Huntington's Disease Written by Dr. Tam Maiuri Edited by Dr. Kaitlyn Deschamps When people talk
- [HD Human Biology Project](https://hdsa.org/hd-research/hd-human-biology-project/) - HD Human Biology Project & HD Human Experience Project HDSA Human-Focused Research Funding Research in humans is the path to better treatments for Huntington's disease. HDSA's grant programs place people with HD at the center of that research, supporting scientists and clinicians who study the biological mechanisms of HD in human systems, and who
- [On Demand Social Worker Continuing Education](https://hdsa.org/healthcare-professionals-resources/social-worker-continuing-education/social-worker-continuing-education-on-demand/) - HDSA Social Work On Demand Online Courses Course Description HDSA offers social work online courses. These online courses are designed to offer expert knowledge about Huntington’s disease (HD) to social workers who care for people with HD. They are recorded webinars - a recording of an actual training now offered in recorded form on demand.
- [Healthcare Professional Resources](https://hdsa.org/healthcare-professionals-resources/)
- [Community & Social Support](https://hdsa.org/find-help/community-social-support/)
- [Huntington's Disease Day of Action](https://hdsa.org/hddayofaction/) - The Huntington’s disease community is coming together to take action—and we need your voice. On April 13, join Huntington’s Disease Day of Action by using the tools on this page to contact your Members of Congress, raise awareness, and help amplify a message that cannot be ignored. Whether you make a phone call, send an
- [HDSA Chapters and Affiliates](https://hdsa.org/about-hdsa/chapters-affiliates/) - Albany Chapter Arizona Chapter Arkansas Affiliate Chesapeake Bay Affiliate Central Ohio Chapter Connecticut Chapter Eastern PA Chapter Florida Chapter Georgia Chapter Greater New York Chapter Greater Houston Area Affiliate Greater North Texas Affiliate Illinois Chapter Indiana Chapter Iowa Chapter Kentucky Chapter Louisiana Affiliate Los Angeles Chapter Maine Affiliate Massachusetts & Rhode Island Chapter Michigan Chapter
- [Roy Maimon, PhD](https://hdsa.org/hd-research/researcher-spotlight/hdsa-research-spotlight-roy-maimon-phd/) - Can the Adult Brain Repair Itself? For more than a century, scientists believed that once brain cells are lost, they are gone for good. Dr. Roy Maimon is building his lab around a bold question: What if that assumption is wrong? Why Huntington’s Disease? Roy did not begin his scientific career in Huntington’s disease (HD). But he
- [HDSA Center of Excellence at Dartmouth-Hitchcock Medical Center at Heater Road Clinics](https://hdsa.org/find-help/clinical-care-services/hdsa-centers-of-excellence/hdsacoedartmouth/) - 18 Old Etna Rd, Level 2 Neurology, Lebanon, NH 03766 Clinic Director: Rebecca Thompson, MD Phone number to make appointments or inquire about referrals: (603) 650-5104 Clinic Coordinator: Jillian Carpenter, MHA, CMOM movement@hitchcock.org Social Worker: Yuri J. Romaniuk, MSW Email: Yuri.J.Romaniuk@Hitchcock.org Phone: 603-650-7820
- [HDSA Center of Excellence at University of Kansas Medical Center](https://hdsa.org/hdsacoe-at-university-of-kansas-medical-center/) - HDSA Center of Excellence at University of Kansas Medical Center 3599 Rainbow Blvd Landon Center on Aging The University of Kansas Health System Kansas City, KS 66160 Clinic meets every Wednesday morning Director: Richard M. Dubinsky, MD, MPH Phone number to make appointments: +1 913-588-6983 HD Clinic Nurse: Chantel Mustain, BSN, RN Email:
- [Berman/Topper HD Career Development Fellowship](https://hdsa.org/bermantopperfellowship/) - The goal of this 3-year grant program is to develop the next generation of passionate and innovative HD scientists via innovative lines of scientific inquiry.
- [HDSA Research Reports](https://hdsa.org/hd-research/research-investor-reports/)
- [HDSA Center of Excellence at University of Virginia HD Program](https://hdsa.org/hdsaceouva/) - HDSA Center of Excellence at University of Virginia UVA Primary Care Center 1221 Lee St Adult neurology, 4th Floor Adult Neurology Clinic Charlottesville, VA 22903 Director: W. Alex Dalrymple, MD Co-Director: M. Agustina Rossetti, PhD Phone number to make appointments: +1 434-297-5711 Clinic Coordinator: Dana Morrissey, MSW, MPH Email: DLM3W@uvahealth.org Phone: +1 434-297-5711
- [Online Surveys](https://hdsa.org/hd-research/online-surveys/) - Researchers need your help to learn about how individuals and families handle the challenges that come with HD. Join a survey to share your experience!
- [HDSA Center of Excellence at the University of California, Irvine](https://hdsa.org/hdsa-center-of-excellence-at-the-university-of-california-irvine/) - HDSA Center of Excellence at the University of California, Irvine Address: Joe C. Wen & Family Center for Advanced Care19200 Jamboree Road Irvine, CA 92612 Phone number to make appointments: 714-456-7720 Director: Nicolas Phielipp, MD. Clinic Coordinator: Olivia Brown Phone Number: (949) 824-2362 Email:oliviab@hs.uci.edu Social Worker: Sofia Venturino, ACSW Phone Number: (949) 824-7715 Email: sventuri@uci.edu
- [HDSA Center of Excellence at  University of South Florida](https://hdsa.org/hdsacoeusfl/) - HDSA Center of Excellence at University of South Florida 13330 USF Laurel Drive Tampa, FL 33612 Director: Dr. Jennifer Jain Phone number to make appointments: +1 813-974-6022 Clinic Coordinator: Kelly Elliott, RN Email: kelliot@usf.edu Phone: +1 813-974-1235 Website: http://health.usf.edu/medicine/neurology/hdcenter/
- [HDSA Center of Excellence Partner Site at Selkirk Neurology](https://hdsa.org/find-help/clinical-care-services/hdsa-centers-of-excellence/selkirk-neurology-partner-site/) - Selkirk Neurology 610 South Sherman, Ste 201 Spokane, WA Director: Jason Aldred, MD, FAAN Clinic Coordinator: Megan Anderson, MD, FAAN (manderson@selkirkneurology.com) Phone: 509-473-0885
- [HDSA Center of Excellence at Cedars-Sinai Medical Center ](https://hdsa.org/find-help/clinical-care-services/hdsa-centers-of-excellence/hdsa-center-of-excellence-at-cedars-sinai-medical-center/) - HDSA Partner Center of Excellence at Cedars-Sinai Medical Center 127 S. San Vicente Blvd. Suite A6600 Los Angeles, CA 90048 Director: Yvette Bordelon, MD, PhD Phone number to make appointments: 310-423-6472 Clinic Coordinator: Bridget Frommel, MA Email: Bridget.Frommel@cshs.org Phone: 310-248-6704 Social Worker: Stephanie McGurk, LCSW Email: Stephanie.McGurk@cshs.org Phone: 310-423-1792
- [HDSA Center of Excellence at University of California Los Angeles Medical Center](https://hdsa.org/hdsacoeucla/) - HDSA Center of Excellence at University of California Los Angeles Medical Center 300 UCLA Medical Plaza Suite B200 Neurological Services Los Angeles, CA 90095 Director: Susan Perlman MD Co-Director: Adys Mendizabal, MD, MS Phone number to make appointments: +1 310-794-1225 Clinic Coordinator: Email: Phone: Social Worker: Amy Y. Slavin, LCSW Email: aslavin@mednet.ucla.edu
- [HDSA’s TCS NYC Marathon Team](https://hdsa.org/get-involved/nyc-marathon-team/) - The Huntington’s Disease Society of America is proud to be an official charity partner of New York Road Runners for the TCS New York City Marathon! The course runs through all five of New York City’s boroughs: Staten Island, Brooklyn, Queens, the Bronx, and Manhattan’s iconic Central Park. It is a 26.2-mile block party
- [Board of Trustees](https://hdsa.org/about-hdsa/board-of-trustees/) - To contact any member of the HDSA Board of Trustees please send an email to trustees@hdsa.org
- [Contact Us](https://hdsa.org/contact-us/) - Please visit: https://hdsa.charitytracker.net/kiosk/ to submit a contact form.
- [Applying for disability](https://hdsa.org/find-help/healthcare-and-future-planning/disability-benefits-and-hd-2/disability-support/) - Applying for disability benefits is a necessity for most HD families, but the disability process is often complicated and overwhelming, whether it is Social Security disability or private disability. It is important for individuals with HD to apply for disability benefits as soon as they are no longer able to work because there is a
- [Advocacy](https://hdsa.org/advocacyhome/)
- [HDSA Center of Excellence at University of Rochester](https://hdsa.org/hdsacoeuofr/) - HDSA Center of Excellence at University of Rochester 4901 Lac De Ville Blvd. Bldg. D, Suite 120 Rochester, NY 14618 Director: Ruth Schneider, MD Co-Director: Frederick Marshall, MD Phone number to make appointments: +1 585-341-7500 Clinic Coordinator: Hannah Mesmer Email: hannah_mesmer@urmc.rochester.edu Phone: +1 585-341-7519 Social Worker: Amy Chesire Email: amy_chesire@URMC.rochester.edu Phone: +1
- [HDSA Researcher Spotlight](https://hdsa.org/hd-research/researcher-spotlight/) - Meet HDSA-Funded Researchers Meet HDSA-funded researchers from around the world working on meaningful science to combat Huntington’s disease. Read about what drew them to the field of HD research, the passion for their work and how the support from HDSA is critical to the advancement of their important research.
- [HDSA Center of Excellence at Beth Israel Deaconess Medical Center](https://hdsa.org/hdsacoebethisrael/) - HDSA Center of Excellence at Beth Israel Deaconess Medical Center 330 Brookline Ave, Kirstein 2 Boston, MA 02115 Director: Samuel Frank, MD Co-Director: Simon Laganiere, MD Phone number to make appointments: 617-667-2445 Clinic Coordinator: Melissa Amante Email: mamante@bidmc.harvard.edu Phone: 617-667-0519 Social Worker: Laura Diveglia Email: ldivegli@bidmc.harvard.edu Phone: 617-667-4074 Social Worker: Gillian Lawlor, MSW, LCSW. Phone:
- [HDSA Tree of Help & Hope](https://hdsa.org/get-involved/hdsa-tree-of-help-hope/) - During the Holiday Season, Proudly Hang Your HDSA Snowflake For All to See! Throughout the holiday season in November and December, HDSA’s Tree of Help & Hope is a symbol that in the battle against Huntington’s disease, no one fights alone. As the snowflakes accumulate — sent by people just like you — you can
- [SUMMARIES OF 2024 HDSA-FUNDED HD HUMAN BIOLOGY PROJECTS](https://hdsa.org/summaries-of-2024-hdsa-funded-hd-human-biology-projects/) - Zachariah McLean, PhD Research Fellow in Neurology, Massachusetts General Hospital , Dr. James Gusella Unraveling Huntington's Disease pathogenesis: Investigating Repeat Expansion and Genetic Modifiers Using Advanced Cell Models Dr. McLean is developing a cell model that closely resembles what happens in the brains of people with HD. Using this, he will test how different genetic
- [The Donald A. King Summer Research Fellowship](https://hdsa.org/hd-research/the-donald-a-king-summer-research-fellowship/) - Sponsorship for college students to conduct HD research under supervision of an established HD researcher for 10-weeks, May-Sept; Applications open Dec-March
- [Tribute & Memorial Donations](https://hdsa.org/get-involved/tribute-memorial-donations/) - Tribute Gift Here’s your opportunity to make a donation in honor of a friend or relative or someone important to you. When you make a tribute gift, we ask for your name, address and the honoree’s name and address. We’ll send a card to the person you wish to be notified of your gift. You’ll
- [HDSA Center of Excellence at Cleveland Clinic](https://hdsa.org/hdsacoecleveland/) - HDSA Center of Excellence at Cleveland Clinic Cleveland Clinic S Building 9500 Euclid Avenue S2 Cleveland, OH 44195 Director: Adam Margolius, MD Co-Director: Kasia Rothenberg, MD Phone: +1 216-444-2087 Clinic Coordinator: Tamara McDevitt, RN Email: MCDEVIT@ccf.org Phone: +1 216-445-3068 Social Worker: Marisa Furlong, LISW Email: Furlonm3@ccf.org Phone: +1 216-444-2087 Phone number to make appointments: +1
- [HDSA Center of Excellence at The Ohio State University](https://hdsa.org/hdsacoeohsu/) - HDSA Center of Excellence at The Ohio State University Martha Morehouse Pavilion Neurology Suite, 3rd floor 2050 Kenny Road Columbus, OH 43221 Director: Sandra K. Kostyk MD, PhD Phone number to make appointments: +1 614-293-4969 Coordinator: Victoria Klee, MS, LGC Email: Victoria.Klee@osumc.edu Social Worker: Kerri Wilkinson, LSW, MSSA Email: kerri.wilkinson@osumc.edu Phone: +1 614-685-6643 Website:
- [Donation opportunities](https://hdsa.org/get-involved/donation-opportunities/)
- [Therapies In Pipeline](https://hdsa.org/hd-research/therapies-in-pipeline/) - The Huntington's Disease Research Pipeline A research “pipeline” is the process of creating, testing, and approving a new drug for use in humans. HDSA funds researchers and doctors doing Huntington's Disease (HD) research at different stages along the pipeline, and collaborates with industry partners to bring information about clinical trials to the public. We do
- [HDSA Center of Excellence at University of Colorado Movement Disorders Center](https://hdsa.org/hdsacoeuco/) - HDSA Center of Excellence at University of Colorado Movement Disorders Center 1635 Aurora Court, 4th Floor, MS F727 Aurora, CO 80045 Director: Dr. Emily Forbes Phone number to make appointments: +1 720-848-2080 Clinic Coordinator: Lucas Lattanzio Email: lucas.lattanzio@cuanschutz.edu Phone: +1303-727-8984 Social Worker: Tyler Parnell Email: tyler.parnell@uchealth.org Phone: +1 720-848-2080 Rocky Mountain Movement Disorder Center Social
- [HDSA Center of Excellence at the Rocky Mountain Movement Disorder Center](https://hdsa.org/hdsacoeco/) - HDSA Center of Excellence at Rocky Mountain Movement Disorder Center 701 E. Hampden Ave., #510 Englewood, CO 80113 Director: Rajeev Kumar, MD Phone number to make appointments: +1 303-357-5455 Clinic Coordinator/Social Worker: Luci Draayer, LCSW, CMC Email: LDraayer@denvercounselingandcare.com Phone: +1 303-356-3421
- [HDSA Center of Excellence at Sanford Medical Center Fargo](https://hdsa.org/hdsa-center-of-excellence-at-sanford-medical-center-fargo/) - HDSA Center of Excellence at Sanford Health 736 Broadway North Fargo, ND 58102 Director: Tanya Harlow, MD Phone number to make appointments: +1 701-234-6600 Clinic Coordinator: Carla Houle, BN Email: Carla.Houle@sanfordhealth.org Phone: +1 701-234-6608 Social Worker: Kimberly Grove, LSW Email: kimberly.Grove@sanfordhealth.org Phone: +1 701-234-6602
- [HDSA Center of Excellence for Huntington’s Disease at Johns Hopkins](https://hdsa.org/hdsa-center-of-excellence-for-huntingtons-disease-at-johns-hopkins/) - HDSA Center of Excellence at Johns Hopkins University 600 North Wolfe Street Meyer Building, Ste 2-181 Baltimore, MD 21287 Director: Jee Bang, MD, MPH Co-Director: Christopher A Ross, MD, PhD Phone number to make appointments: +1 410-955-2398 Clinic Coordinator: Arletta Dailey Email: adailey4@jhmi.edu Social Worker: Anjana Chacko, LCSW-C Email: achacko1@jhmi.edu Phone #: 410-955-2497 Website: www.hopkinsmedicine.org/psychiatry/specialty_areas/huntingtons_disease/index.html
- [HDSA Center Of Excellence at OHSU Movement Disorders Program](https://hdsa.org/ohsuhd/) - HDSA Center of Excellence at Oregon Health & Science University 3303 SW Bond Ave Center for Health & Healing, 8th Floor Portland, OR 97239 Director: Lauren Talman, MD Phone number to make appointments: +1 503-494-7772 Clinic Coordinator: Neurology Clinic Schedulers Email: neuroscheduling@ohsu.edu Social Worker: Rachel Lynn, LCSW Email: lynnr@ohsu.edu Phone: +1 503-418-9283 Oregon health
- [HDSA Center of Excellence at Emory University](https://hdsa.org/hdsacoeemory/) - HDSA Center of Excellence at Emory University Emory Brain Health Center 12 Executive Park Dr Atlanta, GA 30329 Director: Ami Rosen, MS, CGC Co-Director: Stewart Factor, DO Phone number to make appointments: +1 404-778-3444 Clinic Coordinator: Angela Peters Email: angela.peters@emoryhealthcare.org Phone: +1 404-778-3444 Social Worker: Russell Brown, LCSW Email: Russell.h.brown@emory.edu Phone: +1 404-712-7091 Website: http://www,emoryhealthcare.org/brain-health/conditions/huntingtons-disease.html
- [HDSA Center of Excellence at University of Iowa](https://hdsa.org/hdsacoeuia/) - HDSA Center of Excellence at University of Iowa 200 Hawkins Drive Adult Psychiatry Clinic | John Pappajohn Pavilion (JPP), Level 1, Elevator I. Iowa City, IA 52242 Director: Dr. Peggy Nopoulos Phone number to make appointments: (319) 384- 9289 Clinic Coordinator/Social Worker: Amy Lemke, PHD, LISW Email: amy-lemke@uiowa.edu Phone: (319) 384-9289
- [HDSA Center of Excellence at Washington University School of Medicine](https://hdsa.org/hdsacoeuwa/) - HDSA Center of Excellence at Washington University School of Medicine NEW LOCATION: 4921 Parkview Pl, 7th floor, St. Louis, MO 63110 Director: Isabel Alfradique-Dunham Phone number to make appointments: +1 314-362-3471 Clinic Coordinator/Social Worker: Stacey Barton, MSW Email: bartons@wustl.edu Phone: +1 314-362-3471 Social Worker: Jessie Zheng, MSW, LICSW Email: jzheng@hdsa.org Phone: 360-618-3325 Website: http://neuro.wustl.edu/patientcare/clinicalservices/movementdisorders/huntingtonsdisease/
- [HDSA Minneapolis Center of Excellence at Hennepin Health Care](https://hdsa.org/hdsacoehennepin/) - HDSA Minneapolis Center of Excellence at Hennepin Health Care 715 South 8th Street, A3.301 Minneapolis, MN 55404 Director: Martha Nance, MD Phone number to make appointments: +1 612-873-6963 Clinic Coordinator: Robert Walker RN Email: robert.walker@hcmed.org Phone: +1 612-873-5465 Social Worker: Nina Ross, LISW Email: nina.ross@hcmed.org Phone: +1 612-873-3369 Website: https://www.hennepinhealthcare.org/specialty/neurology/huntingtons-disease-clinic/
- [HDSA Center of Excellence at University of California, San Diego](https://hdsa.org/hdsacoeucs/) - HDSA Center of Excellence at University of California, San Diego UCSD Neurosciences Institute 4510 Executive Drive (Suite 325) La Jolla, CA 92121 Director: Jody Corey-Bloom, MD, PhD Co-Director: Phone number to make appointments: +1 858-249-0569 Clinic Coordinator: Krisha Bagga Email:kbagga@health.ucsd.edu Phone: +1 858-249-0569 Social Worker: Tracey Truscott, MSW, LCSW Email: ttruscott@ucsd.edu
- [HDSA Center of Excellence at University of Miami](https://hdsa.org/hdsacoe-at-university-of-miami-miller-school-of-medicine/) - HDSA Center of Excellence at University of Miami Professional Arts Center (PAC) 1150 NW 14th Street Suite 609 Miami, FL 33136 Director: Carlos Singer, MD Co-Director: Henry Moore, MD Phone number to make appointments: +1 305-243-3100 Clinic Coordinator: Vargas Parra, Silvia Email:s.vargasparra@med.miami.edu Phone: +1 305-243-3647 Social Worker: Marjorie Dangla, LCSW Email: m.dangla@med.miami.edu
- [HDSA Center of Excellence at Vanderbilt University Medical Center](https://hdsa.org/hdsacoevanderbilt/) - HDSA Center of Excellence at Vanderbilt University Medical Center 2220 Pierce Avenue, Suite B1053 Nashville, TN 37232 Phone number to make appointments: +1 615-936-1924 Social Worker: Spencer Diehl Email: spencer.diehl@vumc.org Phone: +1 615-936-1924 Social Worker: Cancino Elisa (Ely) Email: elisa.cancino@vumc.org Phone: +1 615-936-6302 Directions: This address will take you to the Vanderbilt-Ingram Cancer Center.
- [HDSA Center of Excellence at Columbia University Neurological Institute](https://hdsa.org/hdsacoecolumbia/) - HDSA Center of Excellence at Columbia University Neurological Institute 710 West 168th Street, 3rd Floor New York, NY 10032 Director: Karen Marder, MD, MPH Co-Director: Edward Huey, MD Phone number to make appointments: +1 212-305-9172 Clinic Coordinator: Megan Rosa Email: mir2137@cumc.columbia.edu Phone: +1 212-305-9172 Social Worker: Debbie Thorne, LCSW Email: dzt1@cumc.columbia.edu Phone: +1
- [HDSA Center of Excellence at Indiana University](https://hdsa.org/hdsacoeindiana/) - HDSA Center of Excellence at Indiana University 355 W 16th Street Indianapolis, IN 46202 Director: Christopher James Phone number to make appointments: +1 317-274-9657 Clinic Coordinator/Social Worker: Courtney Gatza, LSW Email: Cgatza@iu.edu Phone: +1 317-274-9657 Website: http://medicine.iu.edu/neurology/programs/huntingtons-disease/
- [HDSA Center of Excellence Partner Kaiser Permanente, Northern California](https://hdsa.org/hdsacoepkaisernc/) - HDSA Center of Excellence Partner Site at Kaiser Permanente Sacramento 1650 Response Road Genetics Dept-3rd floor Sacramento, CA 95815 Director: Suketu Khandhar, MD Phone number to make appointments: +1 916-614-4075 Clinic Coordinator: Mara Sifry-Platt Email: Mara.Sifry-Platt@kp.org Phone: +1 916-474-2512 Social Worker: Elle Tadina-Siau Email: +1 916-614-4869 Phone: Eleanor.X.Tadina-Siau@kp.org Website: https://mydoctor.kaiserpermanente.org/ncal/specialty/genetics/specialty_clinics/huntington_disease.jsp
- [HDSA Center of Excellence at University of Vermont Medical Center](https://hdsa.org/hdsacoeuvt/) - HDSA Center of Excellence at University of Vermont Medical Center 1 South Prospect Street Arnold 2, Neurology Burlington, VT 05401 Director: James Boyd, MD Phone number to make appointments: +1 802-847-4589 Clinic Coordinator: Brandolyn Bradley Email: Brandolyn.Bradley@uvmhealth.org Phone: +1(802)-847-4334 Assistant Director: Suzanne Kennedy, MD Email: suzanne.kennedy@uvmhealth.org Phone: 802-847-4589 Social Worker: Lucas Kovacevich,
- [HDSA Center of Excellence Partner Site at Central Florida Center for Huntington Disease](https://hdsa.org/find-help/clinical-care-services/hdsa-centers-of-excellence/university-of-central-florida-and-advent-health-mov-dis-clinic-partner-site/) - Central Florida Center for Huntington's Disease Advent Health Location: AdventHealth Medical Group Neurology at Innovation Tower 265 E. Rollins St., 6th Floor Orlando, FL 32804 AHMG.CFL.MovementDisorderMedicine@AdventHealth.com (407) 303-6729 Clinic open 2nd Wednesday of every month, 8AM-1PM UCF Location: 3400 Quadrangle Blvd, Orlando, FL 32817 CHD@ucf.edu 407-266-2343 Clinic open 3rd Friday of every month, 8AM-1PM
- [HDSA Center of Excellence, The Cole Center for Parkinson's and Movement Disorders (University of Tennessee Medical Center)](https://hdsa.org/colecenter/) - HDSA Center of Excellence at Cole Center (part of the Brain & Spine Institute at The University of Tennessee Medical Center) 1975 Town Center Blvd. Suite 203 Knoxville, TN 37922 Director: Christopher Tolleson, MD, MPH Phone number for appointments: 865-909-4030 ext. 2 Social Worker: Laura M. Clabo, LAPSW Phone: 865-909-4030 Email: lmclabo@utmck.edu
- [HDSA Center of Excellence Partner Sanford Health](https://hdsa.org/hdsacoepsanford/) - HDSA Center of Excellence Partner Sanford Health 1210 W. 18th St. Suite, 100 Sioux Falls, SD 57104 Director: Eugenio Matos, MD Phone for appts: 605-312-8500 (Terri Andrews) Clinic Coordinator: Lior Borovik, LCGC Phone: 605-312-3499 Email: lior.borovik@sanfordhealth.org Social Worker: Kimberly Grove Email: Kimberly.Grove@sanfordhealth.org Phone: 701-234-5690
- [HDSA Center of Excellence at University of Louisville Disorders Clinic](https://hdsa.org/hdsacoeuol/) - HDSA Center of Excellence at University of Louisville Disorders Clinic 220 Abraham Flexner Way Suite 606 Louisville, KY 40202 Director: Peter Hedera, MD, PhD Phone number to make appointments: +1 502-588-4898 Clinical Coordinator / Social Worker: Isabella Cross, MSSW, CSW Email:isabella.cross@uoflhealth.org Phone: +1 502-588-4800 Website: http://www.uoflphysicians.com/parkinsons-disease-and-movement-disorders
- [HDSA Center of Excellence at University of California San Francisco](https://hdsa.org/hdsacoeucsf/) - HDSA Center of Excellence at University of California, San Francisco 1651 4th Street, Suite 212 Box 3017 San Francisco, CA 94143 Director: Michael Geschwind, MD, PhD Co-Director: Alexandra Nelson, MD, PhD Coordinator: Alyson Marcelo Email: alyson.marcelo@ucsf.edu Phone number to make appointments: +1 415-353-2057 Social Worker: Cathy Wang, MSW, CGRS Email: catherine.wang@ucsf.edu Phone: +1 (415)
- [HDSA Center of Excellence at Rush University Medical Center](https://hdsa.org/hdsacoerush/) - HDSA Center of Excellence at Rush University Medical Center Section of Parkinson's Disease and Movement Disorders Website: https://www.rush.edu/services/conditions/huntingtons-disease For Rush specific research studies, click here. HD Clinic Directors: Debroah Hall, MD, PhD Samantha Patel, MD Clinic Nurse: Devonda Chambliss, BSN, RN | Phone: 312-563-2900 Clinic Coordinator: Corinne Jones Phone 312-563-2900 | Email: Movement_HD@rush.edu Clinical Research Coordinators: Tyler Svymbersky, BS |
- [HDSA Center of Excellence at OSF HealthCare (Illinois Neurological Institute)](https://hdsa.org/hdsa-center-of-excellence-at-osf-healthcare-illinois-neurological-institute/) - HDSA Center of Excellence at OSF HealthCare (Illinois Neurological Institute) 200 E. Pennsylvania Avenue Peoria IL 61603 Director: Dronacharya Lamichhane, MD Phone number for appointments: 309-624-4000 Clinic Coordinator: Alaine Robinson Email: alaine.robinson@osfhealthcare.org Social Worker: Tonya Welch Email: tonya.welch@osfhealthcare.org Phone: 309-624-5500 Social worker: Pam Stern Email: pstern@hdsa.org Phone: 630-443-9876
- [HDSA Center of Excellence at Duke University Medical Center](https://hdsa.org/hdsacoeduke/) - HDSA Center of Excellence at Duke University Medical Center 932 Morreene Road Durham, North Carolina 27705 Director: Burton Scott, PhD, MD Neurologist & Movement Disorders Specialist: Kathryn Moore, MD Phone number to make appointments: +1 919-681-0707 Coordinator: Sophia Stewart Email: sophia.stewart@duke.edu Social Worker: Allison Allen, MSW, LCSW Email: allison.m.allen@duke.edu Phone: +1 919-681-2656 Social Worker: Anne Kosem,
- [HDSA Center of Excellence at Ochsner Health](https://hdsa.org/hdsacoeochnermc/) - HDSA Center of Excellence at Ochsner Health 1514 Jefferson Hwy 7th Floor Clinic Tower New Orleans, LA 70212 Director: David J. Houghton, MD, MPH Phone number to make appointments: +1 504-842-8771 Clinic Coordinator: Dominique Thomas Email: dominque.thomas3@ochsney.org Phone: 504-842-6871 Social Worker: Anne Marie Savoy, LMSW Email: annemarie.savoy@ochsner.org Phone: +1 504-842-8771 Website: https://www.ochsner.org/services/huntingtons-disease/
- [HDSA Center of Excellence at Nebraska Medicine](https://hdsa.org/hdsacoene/) - HDSA Center of Excellence at University of Nebraska Medical Center 4239 Farnam Street, Suite 105 Omaha, NE 68131 Director: Amy Hellman Phone number to make appointments: +1 402-559-8600 Clinic Coordinator: Bobbi Roeder Email: broader@nebraskamed.com Phone: +1 402-559-5529 Social Worker: Colleen Hoarty, LCSW Email: cohoarty@nebraskamed.com Phone: +1 402-559-4420
- [HDSA Center of Excellence at University at Buffalo](https://hdsa.org/hdsa-center-of-excellence-at-the-state-university-of-new-york-at-buffalo/) - HDSA Center of Excellence at University at Buffalo 5851 Main Street Williamsville, NY 14221 Director: Kelly Andrzejewski, DO, PhD Phone number to make appointments: +1 716-932-6080 Clinic Coordinator: Rachel, Shepherd, MSN, MA, AGPCNP-BC Email: rlaporta@buffalo.edu Phone: +1 716-932-6080 Social Worker: Christal Backhaus, LMSW Email: crsadler@buffalo.edu Phone: +1 716-323-0733
- [HDSA Center of Excellence at Virginia Commonwealth University](https://hdsa.org/hdsacoevcu/) - HDSA Center of Excellence at Virginia Commonwealth University 11958 W. Broad St Henrico, VA 23233 Director: Dr. Stephanie Bissonnette Phone number to make appointments: +1 804-360-4669 Clinic Coordinator: Brittany Gibson Phone: +1 804-627-1398 Social Worker: Vondra Harrell, MSW Email: vondra.harrell@vcuhealth.org Phone: +1 804-364-6333 Tyler Parnell Email: Tyler.parnell@uchealth.org Website: https://hdsa.org/hdsacoevcu/
- [HDSA Center of Excellence at University of Wisconsin - Madison](https://hdsa.org/hdsa-center-of-excellence-at-university-of-wisconsin-madison/) - HDSA Center of Excellence at University of Wisconsin Health Department of Neurology 20 S. Park Street Madison, WI 53715 Director: Kathleen M. Shannon, MD Phone number to make appointments: +1 608-263-5442 Clinic Coordinator: Kathleen M. Shannon MD Email: shannon@neurology.wisc.edu Phone: +1 608-263-5442 Social Worker: Paul Golueke, APSW Email: pgolueke@uwhealth.org Phone: +1 608-821-4196
- [HDSA Center of Excellence at University of Pennsylvania](https://hdsa.org/hdsacoeupenn/) - HDSA Center of Excellence at University of Pennsylvania 330 S. 9th St. 3rd floor Philadelphia, PA 19107 Director: Aaron Lasker, MD Phone number to make appointments: +1 215-829-5176 Clinic Coordinator: Anne Beckett-Fedarko, MS,OTR/L Phone: 215-829-7775 Social Worker: Gloria Williams, MSW Phone: 215-796-5886 Email: Gloria.Williams@Pennmedicine.upenn.edu Nurse Coordinator: Jenna Bucolo BSN, RN Phone: 215-829-5176
- [HDSA Center of Excellence at Renaissance School of Medicine at Stony Brook University](https://hdsa.org/hdsacoe-at-stony-brook-university/) - HDSA Center of Excellence at Renaissance School of Medicine at Stony Brook University 181 North Belle Meade Road, Suite 5 East Setauket, NY 11733 Director: Guy Schwartz, MD Co-Director: Geoffrey O'Connell, LCSW Phone number to make appointments: +1 631-444-2599 Clinic Coordinator: Erin Harabes Email: erin.harabes@stonybrookmedicine.edu Phone: +1 631-444-3448 Social Worker: Geoffrey O'Connell, LCSW Email: geoffrey.oconnell@stonybrookmedicine.edu
- [HDSA Center of Excellence at University of California Davis Health](https://hdsa.org/hdsacoeucd/) - HDSA Center of Excellence at University of California Davis Health Midtown Clinic Department of Neurology 3160 Folsom Boulevard, Suite 2100 Sacramento, CA 95816 Director: Vicki Wheelock MD Co-Director: Lorin Scher, MD Phone number to make appointments: +1 916-734-3588 Clinic Coordinator/Social Worker: Lisa Mooney, MSW Email: lmooney@ucdavis.edu Phone: +1 916-734-6277 Social Worker: Elle
- [HDSA Center of Excellence at Albany Medical Center](https://hdsa.org/hdsacoealbany/) - HDSA Center of Excellence at Albany Medical Center Parkinson’s Disease and Movement Disorder Clinic 43 New Scotland Avenue Albany, NY 12208 Director: Era Hanspal, MD Phone for appointments: 518-262-0241 Clinic Coordinator/Social Worker- Madeline Kennedy Email: Kennedm4@amc.edu Phone: 518-262-0214 Social worker/Upstate NY Regional SW: Carlette McDaniels, LCSW Phone: 332-910-5334 Email: cmcdaniels@hdsa.org Website: http://www.amc.edu/patient/services/neurosciences/movement_disorders/index.cfm
- [HDSA Center of Excellence at  University of Alabama Birmingham](https://hdsa.org/hdsacoeuab/) - HDSA Center of Excellence at University of Alabama at Birmingham (UAB) The Kirklin Clinic at UAB 2000 6th Avenue South, 2nd Floor Birmingham, Alabama 35233 Director: Victor Sung, MD Co-Director: Marissa Dean, MD Phone number to make appointments: +1 205-801-8986 Clinic Coordinator: Tenisha Franklin, BSN, RN Email: tenishafranklin@uabmc.edu Phone: +1 205-934-0683 Social Worker: Cara Loy,
- [HDSA Center of Excellence at University of Texas Health Science Center](https://hdsa.org/hdsacoeutx/) - HDSA Center of Excellence at University of Texas Health Science Center-Houston 6410 Fannin Suite 1010 Houston, TX 77030 Director: Erin Furr Stimming, MD, FAAN Co-Director: Shivika Chandra, MD Phone number to make appointments: +1 832-325-7080 Website to make an appointment: https://www.utphysicians.com/request-an-appointment/?sr=1&preferredprovider_name=Erin+Furr+Stimming%2C+MD Social Worker: Amber McCarthy, LMSW Phone: 713-500-7168 Email: amber.mccarthy@uth.tmc.edu Website: https://med.uth.edu/neurology/huntingtons-disease-program
- [HDSA Center of Excellence Partner- University of South Alabama Health System](https://hdsa.org/hdsacoeusal/) - HDSA Center of Excellence Partner Site at University of South Alabama Strada Patient Care Center 1601 Center Street, Suite 2E Mobile, AL 36604 Director: Daniel Dees, MD Phone number to make appointments: +1 251-660-5108 Clinic Coordinator: Drew Citrin Email:acitrin@health.southalabama.edu Social Worker: Alex Nail Email: fanail@health.southalabama.edu Phone: +1 251-660-5018
- [HDSA Center of Excellence at Medstar/Georgetown University Hospital](https://hdsa.org/hdsa-center-of-excellence-at-medstargeorgetown-university/) - HDSA Center of Excellence at Medstar/Georgetown University Hospital 3800 Reservoir Road 7PHC Washington, DC 20007 Director: Karen E. Anderson, MD Phone number to make appointments: +1 202-687-1366 Clinic Coordinator: Mara McCartin Email: mcm380@georgetown.edu Phone: +1 202-687-2451 Website: https://www.medstarhealth.org/services/huntingtons-disease-conditions Social Worker: Emily Weaver, LICSW Email: ew785@georgetown.edu Phone: +1 202-687-1366
- [HDSA Center of Excellence Partner Site Erlanger Health System](https://hdsa.org/erlanferhealth/) - HDSA Center of Excellence Partner Site at University of Tennessee, Erlanger Neurology 979 E. 3rd St Suite C-830, Medical Mall Chattanooga. TN 37403 Director: Ellen Valadez, MD Phone number to make appointments: +1 423-778-9001 Clinic Coordinator/Social Worker: Sarah Hines, LCSW Email: sarah.hines@erlanger.org Phone: +1 423-778-9001 Social Worker: Charlotte Sorenson, LMSW Email: csorensen@hdsa.org Phone: 901-609-9127
- [HDSA Center of Excellence Rowan University School of Medicine & Rutgers University RWJ Medical School](https://hdsa.org/hdsa-center-of-excellence-rowan-university-school-of-medicine-rutgers-university-rwj-medical-school/) - HDSA Center of Excellence at Rutgers University and Rowan University New Jersey Institute for Successful Aging 42 E Laurel Rd Suite 1800 Stratford, NJ 08084 Director: Michael K. McCormack, Ph.D., FACMGG, LGC Co-Director: Machteld Hillen, MD (neurology); Martin Forsberg, MD (psychiatry) Phone number to make appointments: +1 732-235-5993 Social Worker: Lisa Burkholder, LSCW
- [Center of Excellence at University of Connecticut](https://hdsa.org/coeuconn/) - Social Worker: Jean Darin, LMSW Email: Jean Darin, LMSW Phone: 203-993-0488
- [HDSA Center of Excellence at University of Washington Medical Center](https://hdsa.org/hdsacoeuwash/) - HDSA Center of Excellence at University of Washington 1701 NE Columbia Road Seattle, WA 98195 Director: Suman Jayadev Phone number to make appointments: +1 206-598-3983 Clinic Coordinator: Debbie Olson Email: olsondl@uw.edu Phone: +1 206-598-3983 Social Worker: Phaleen Hanson Email: bailepm@uw.edu Phone: +1 206-597-4352 Social Worker: Jessie Zheng, MSW, LICSW Email: jzheng@hdsa.org Phone:
- [HDSA Center of Excellence at University of Cincinnati](https://hdsa.org/hdsa-center-of-excellence-at-university-of-cincinnati/) - HDSA Center of Excellence at University of Cincinnati 3113 Bellevue Ave Suite 3400 Cincinnati, OH 45219 Director: Andrew Duker, MD Email: dukeraa@ucmail.uc.edu Clinic Coordinator: Becca Gneuhs Email: becca.gneuhs@uchealth.com Phone number to make appointments: +1 513-475-8730 Social Workers: Rebecca Jacobs, LISW-S Email: Becca.Jacobs@UCHealth.com Phone: +1 513-475-8792 Kaitlin Dejarnette, MSW, LSW Email: Kaitlin.Dejarnette@UCHealth.com Phone: +1 513-475-8854
- [HDSA Center of Excellence Partner Site at UT Health San Antonio](https://hdsa.org/hdsa-center-of-excellence-partner-site-at-ut-health-san-antonio/) - HDSA Center of Excellence Partner Site at UT Health San Antonio 8300 Floyd Curl Drive Medical Arts & Research Center (MARC), 8th floor San Antonio, TX 78229 Director: Pablo Coss, MD Phone number to make appointments: +1 210-450-9700 Genetic Counselor: Julia Castro, ScM, CGC Phone: +1 210-450-9965 Email: castroj2@uthscsa.edu Social Worker: Angela Torres LMSW Phone:
- [HDSA Center of Excellence at Barrow Neurological Institute](https://hdsa.org/hdsa-center-of-excellence-at-barrow-neurological-institute/) - Muhammad Ali Parkinson Center 240 West Thomas Road Suite 301 (3rd Floor) Phoenix, AZ 85013 Director: Nicki Niemann, MD Email: nicki.niemann@commonspirit.org Phone number to make appointments: +1 602-406-6215 Clinic Coordinator: Tori Wilson Email: tori.wilson900@commonspirit.org Social Worker: Dawn Magid Email: dawn.magid@commonspirit.org Phone: +1 602-406-4338 Clinic Website: https://www.barrowneuro.org/condition/huntingtons-disease/
- [Scientific Advisory Board](https://hdsa.org/about-hdsa/scientific-board/) - The HDSA Scientific Advisory Board (SAB) is comprised of leading experts in their fields. The SAB can be called upon to advise HDSA on any scientific issues...
- [HDSA Center of Excellence Medical University of South Carolina](https://hdsa.org/hdsa-center-of-excellence-medical-university-of-south-carolina/) - HDSA Center of Excellence at Medical University of South Carolina 135 Rutledge Av. Charleston, SC 29425 Director: Federico Rodriguez-Porcel Co-Director: Maysen Mesaros Phone number to make appointments: +1 843-792-3223 Clinic Coordinator: Nicole Cool Email: cool@musc.edu Phone: +1 843-792-7859 Social Worker: Email: Phone:
- [HDSA Centers of Excellence](https://hdsa.org/find-help/clinical-care-services/hdsa-centers-of-excellence/) - HDSA Centers of Excellence provide a multidisciplinary team approach to Huntington’s disease care. Patients benefit from expert neurologists, psychiatrists...
- [HDSA Year in Review](https://hdsa.org/hdsa-year-in-review/)
- [HDSA Center of Excellence Partner Site at Texas Movement Disorders Specialist, PLLC](https://hdsa.org/hdsa-center-of-excellence-partner-site-at-texas-movement-disorders-specialist-pllc/) - HDSA Center of Excellence Partner Site at Texas Movement Disorders Specialist, PLLC 204 South Interstate 35, Suite 103 Georgetown TX 78628 Director: Michael Soileau, MD Phone number to make appointments: +1 512-693-4041 Clinic Coordinator: Tracye Box Email: office@txmds.net Phone: +1 512-693-4041 Social Worker: Amber McCarthy, LCSW Phone: 713-500-7168 Email:amber.mccarthy@uth.tmc.edu
- [HDSA Center of Excellence at University of Arkansas for Medical Sciences](https://hdsa.org/hdsa-center-of-excellence-university-of-arkansas/) - HDSA Center of Excellence at University of Arkansas for Medical Sciences 4301 W. Markham St. Little Rock, AR 72205 Director: Tuhin Virmani Co-Director: Rohit Dhall Phone number to make appointments: +1 501-526-5443 Clinic Coordinator: Delores Chandler Email: DChandler@uams.edu Phone: +1 501-526-5443 Social Worker: Kuganes Collins, LCSW Email: Kcollins@uams.edu Phone: +1 501-686-5870
- [HDSA Center of Excellence at Stanford University](https://hdsa.org/hdsacoestanford-2/) - HDSA Center of Excellence at Stanford University Stanford Neurosciences Health Center Movement Disorders Division 213 Quarry Rd Palo Alto, CA 94304 Director: Sharon J. Sha, MD, MS Co-Director: Veronica E. Santini, MD, MA Phone number to make appointments: +1 650-723-6469 Clinic Coordinator: Angela Asilo, RN, BSN Phone: +1 650-723-6469 Email: abayot@stanfordhealthcare.org Social
- [HDSA Center of Excellence at Henry Ford Hospital](https://hdsa.org/hdsacoeat-henry-ford-hospital/) - HDSA Center of Excellence at Henry Ford Health System 6777 W. Maple Rd West Bloomfield, MI 48322 Director: Bisena Bulica, DO Clinic Coordinator: Julie Loomis, RN Email: jloomis3@hfhs.org Phone number to make appointments: +1 248-325-0503 Clinic Social Worker: Stephanie Forbes, LMSW Email: sforbes3@hfhs.org Phone: 989-948-2089
- [HDSA Center of Excellence Partner Site at University of Massachusetts Chan School of Medicine/UMass Memorial Health](https://hdsa.org/find-help/clinical-care-services/hdsa-centers-of-excellence/university-of-massachusetts-chan-school-of-medicine/) - HDSA Center of Excellence Partner Site at University of Massachusetts Chan School of Medicine/UMass Memorial Health 55 Lake Avenue North Worcester, MA 01655 Clinic Director: Anindita Deb, MD Clinic Coordinator: Carolyn Griffin Email: Carolyn.griffin@umassmemorial.org Phone: +1 (508) 334-2527 Social Worker: Elisabeth Larrivee Email: elisabeth.larrivee@umassmemorial.org Phone: 508-334-2527
- [HDSA Center of Excellence Partner Site at Covenant Medical Group Neurology](https://hdsa.org/hdsa-center-of-excellence-partner-site-at-covenant-medical-group-neurology/) - HDSA Center of Excellence Partner Site at Covenant Medical Group Neurology 3506 21 St Ste 400 Lubbock, TX 79410 Director: Katie Hendley, MD Phone number to make appointments: +1 806-725-4115 Clinic Coordinator: Nikki Torres Phone: +1 806-725-4115 Social Worker: Amber McCarthy, LMSW
- [HDSA Center of Excellence at University of Pittsburgh Medical Center](https://hdsa.org/hdsacoeupitt/) - HDSA Center of Excellence at University of Pittsburgh Medical Center 3471 5th Avenue Kaufmann Building, room 811 Pittsburgh, PA 15227 Director: Valerie Suski Co-Director: Morgan Faeder, MD Phone number to make appointments: +1 412-692-2286 Clinic Coordinator: Shaila Porter Email: porters5@upmc.edu Phone: +1 412-692-4670 Social Worker: Tammy Makoul Email: tmakoul@hdsa.org Phone: +888-779-4372
- [HDSA Center of Excellence Partner Site at St. Luke’s University Network](https://hdsa.org/find-help/clinical-care-services/hdsa-centers-of-excellence/st-lukes-university-network-partner-site/) - St. Luke’s University Network St. Luke's Neurology Associates-Bethlehem 1417 Eighth Avenue Bethlehem, PA Director: Nancy Diaz-Pechar, MD Clinic Coordinator: Patients call the St. Luke's Neurology scheduler Phone: (484) 526-5210 Social Worker: Stefanie Becker, MSW Phone: (484) 526-5227 Email: Stefanie.becker@sluhn.org
- [HDSA Center of Excellence at University of Florida](https://hdsa.org/hdsacoeufl/) - HDSA Center of Excellence at University of Florida 3009 SW Williston Rd UF Health Norman Fixel Institute for Neurological Diseases Gainesville, FL 32608 Director: Nikolaus McFarland, MD, PhD Phone number to make appointments: +1 352-294-5400 Clinic Coordinator: Melissa Himes Email: melissa.himes@neurology.ufl.edu Phone: +1 352-294-5400 Social Worker: Alana McKay Email:Alana.Mckay@neurology.ufl.edu Phone: +1 352-733-2410 Website:
- [HDSA Center of Excellence at University of Connecticut Health Center](https://hdsa.org/find-help/clinical-care-services/hdsa-centers-of-excellence/ct-coe/) - HDSA Center of Excellence at University of Connecticut Health Center UConn Health Outpatient Pavilion 135 Dowling Way Third Floor East, Neurology Farmington, CT 06030 Clinic Director: Shakaib Khan, MD Phone for Appointments: (860) 679-6775 Clinic Coordinator: Sara, Hatje Phone: (860) 679-4418 Email: hatje@uchc.edu Social Worker: Kristen Vavrek, LCSW Phone: (860) 679-3224 Email: vavrek@uchc.edu
- [HDSA Center of Excellence at Northwestern University](https://hdsa.org/hdsa-center-of-excellence-at-northwestern-university/) - HDSA Center of Excellence at Northwestern University 259 E Erie St Suite 1900 Lavin Family Pavillion Chicago, IL 60611 Director: Danny Bega, MD Phone number to make appointments: +1 312-695-7950 Clinic Coordinator: Emily Zivin, LCSW Email: hd@nm.org Phone: +1 312-695-7950 Social Worker: Emily Zivin, LCSW Email: emily.zivin@nm.org Phone: +1 312-926-8048
- [HDSA Center of Excellence at Massachusetts General Hospital](https://hdsa.org/hdsacoemass/) - HDSA Center of Excellence at Massachusetts General Hospital 55 Fruit Street, ACC Suite 835 Boston, MA 02114 Director: H. Diana Rosas, MD Co-Director: Steven Hersch, MD Phone number to make appointments: +1 617-724-1050 Clinic Coordinator: Ashley Loh Email: aloh1@mgh.harvard.edu Phone: +1 617-724-2227 Social Worker: Katrina Rudd Email: krudd@mgh.harvard.edu Phone: +1 617-724-6419 Website: http://www.massgeneral.org/neurology/services/treatmentprograms.aspx?id=1044
- [HD Trialfinder](https://hdsa.org/hd-research/hd-trial-finder/) - HD Trialfinder is a clinical trials matching service: a way for individuals with Huntington’s disease, caregivers, healthy volunteers, and physicians to connect with current research studies. It includes an easy-to-use website and free call center staffed by trained HD clinical trial navigators. People with HD, care partners, and healthy volunteers are all needed today to participate
- [This May #LetsTalkAboutHD](https://hdsa.org/this-may-letstalkabouthd/) - HELP US TURN UP THE GLOBAL VOLUME ON HD AWARENESS! #LetsTalkAboutHD is a social media initiative during Huntington’s Disease Awareness Month in May to encourage families to share their experiences with HD. It can be a video, a photo or a written story – HD impacts every family differently and it’s time the world knows
- [PT Education](https://hdsa.org/healthcare-professionals-resources/pt-continuing-education/) - HDSA/APTA Education Course for Huntington’s Disease Welcome to the registration page for HD and Physical Therapy, an education course The purpose of the course is to provide information about HD to the physical therapy community in order to increase the number of therapists available to HD families for consultations and active therapy sessions. This multi-part
- [SUMMARIES OF 2023 HDSA-FUNDED HD HUMAN BIOLOGY PROJECTS](https://hdsa.org/summaries-of-2023-hdsa-funded-hd-human-biology-projects/) - Xiangrui Zeng, PhD Research Fellow, Massachusetts General Hospital , Drs. Diana Rosas, Bruce Fischl, and Juan Iglesias Integrating clinical MRI and ultra-high resolution ex vivo MRI to model laminar anomaly progression in Huntington's disease The cerebral cortex, often referred to as the “shell” of the human brain, contains multiple layers. These layers become damaged sequentially
- [HD Cope](https://hdsa.org/hd-research/hd-cope/) - The Huntington’s Disease Coalition for Patient Engagement (HD-COPE) is a globally recognized program organized by leading HD patient advocacy organizations who have united to give families affected by Huntington’s disease a direct voice in HD clinical research. HD-COPE was launched in 2018, and its managing partners are the Huntington’s Disease Society of America and the
- [Stock/Appreciated Asset/Real Estate Donations](https://hdsa.org/get-involved/stock-appreciated-asset-real-estate-donations/) - Donating Appreciated Assets Whether purchased for love or investment purposes, publicly traded stocks, real estate, shares in a privately held company, interests in private equity, hedge funds, and fine art or collectibles can prove to be the best items to donate to HDSA to realize maximum tax benefits. Assets that have appreciated in value can
- [HDSA Family Funds](https://hdsa.org/get-involved/hdsa-family-funds/) - Family Is Everything! At the Huntington’s Disease Society of America, family is everything. While the organization’s research, care, advocacy, and awareness programs strengthen and empower HD families in their fight against the disease, the support of these families is in turn essential to offering these crucial services. Family Funds provide a unique opportunity for
- [Family Members take Action](https://hdsa.org/advocacyhome/takeaction/)
- [Team Hope Walk](https://hdsa.org/team-hope-walk/) - Welcome To Team Hope! The Team Hope Walk program is HDSA’s signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease. All proceeds support HDSA’s mission to improve the lives of people affected by HD and their families. Since their inception in 2007, Team Hope Walks have
- [HDSA Telehealth](https://hdsa.org/find-help/community-social-support/hdsa-telehealth/) - After nearly eight years of working with Amwell, an online telehealth platform, HDSA has ended this partnership. The decision was not made lightly, as we recognize the importance of mental health support for people living with HD. However, use of the counseling services declined to the point it was not financially responsible to continue the
- [HDSA Telehealth-](https://hdsa.org/hdsa-telehealth/) - After nearly eight years of working with Amwell, an online telehealth platform, HDSA has ended this partnership. The decision was not made lightly, as we recognize the importance of mental health support for people living with HD. However, use of the counseling services declined to the point it was not financially responsible to continue the
- [Physical Therapy Resources](https://hdsa.org/healthcare-professionals-resources/pt-continuing-education/physical-therapy/physical-therapy-resources/) - Please Bookmark this page for future reference Handbooks/Workbooks: HD Clinical Guidelines Clinical recommendations to guide physical therapy practice for Huntington disease Move to Exercise Workbook Physical Activity & Huntington's Disease Videos: Move to Exercise 1 from Huntington's Disease Association on Vimeo. Move to Exercise 2 from Huntington's Disease Association on Vimeo.
- [HDSA Helpline](https://hdsa.org/hdsa-helpline/) - What is HDSA’s Helpline? Anyone affected by Huntington’s disease is welcome to call our HDSA Helpline at 1-800-345-HDSA (1-800- 345-4372) for guidance on Huntington’s disease (HD). Individuals at-risk or diagnosed with HD, Family and Friends with a loved one at-risk or diagnosed with HD, and/or Health Care Professionals can call for support. Some examples of
- [HDSA Center of Excellence at University of South Carolina School of Medicine](https://hdsa.org/hdsacoesc/) - HDSA Center of Excellence at University of South Carolina School of Medicine Department of Neurology 8 Richland Medical Park Drive, Suite 420 Columbia, SC 29203 Director: Miroslav Cuturic, MD Phone number to make appointments: +1 803-545-5775 Clinic Coordinator: Janice Edwards, CGC Email: janice.edwards@uscmed.sc.edu Phone: +1 803-545-5775 Website: https://phuscmg.org/specialties/neuroscience/huntingtons-clinic
- [Social Worker Continuing Education](https://hdsa.org/healthcare-professionals-resources/social-worker-continuing-education/)
- [Privacy Policy](https://hdsa.org/privacy-policy/) - Introduction This Privacy Policy explains how the Huntington’s Disease Society of America (the “Society”) may collect, use, and disclose information, including Personal Information we obtain through our websites (the “Online Platforms”) as well as information we obtain offline or in any electronic, written, or oral communication “Personal information” means information that alone or when in
- [Media Center](https://hdsa.org/about-hdsa/media-center/) - HDSA's Official Logo HDSA's Official Colors Blue- PMS 300 Gray- PMS 424 PSA Videos
- [Annual report 2023](https://hdsa.org/annual-report-2023/)
- [Enroll in a Clinical Trial](https://hdsa.org/hd-research/enroll-in-a-clinical-trial/) - Welcome to the Huntington’s Disease Society of America’s HD Trial Finder, a free, easy-to-use clinical trial matching service that connects individuals with Huntington’s disease, caregivers, healthy volunteers and physicians with current studies. Our continuously updated database includes both interventional and observational studies being conducted at trial sites across the country. Your Participation Is Imperative Through
- [Support Group Resources](https://hdsa.org/support-group-resources/) - Support Group Leaders Continuing Education Videos Based on your input, HDSA is pleased to announce an opportunity for our support group leaders to access additional training and discussion about some of the most challenging topics that arise in support groups. Whether you’ve been a leader for a few months or many years, we encourage
- [POWERHD](https://hdsa.org/powerhd/) - POWERHD
- [Disability Benefits and HD](https://hdsa.org/find-help/healthcare-and-future-planning/disability-benefits-and-hd-2/)
- [Disability Chat](https://hdsa.org/find-help/healthcare-and-future-planning/disability-chat/) - HDSA DISABILITY CHAT WEBINARS HDSA Disability Chat is designed to provide FREE information, resources and support to both persons affected by HD and their caregivers who are either starting the disability process or have already filed but been denied benefits by the Social Security Administration as well as HDSA social workers who are assisting HD
- [Ask Allison](https://hdsa.org/find-help/healthcare-and-future-planning/ask-allison/) - Ask our disability expert, Allison Bartlett, general questions about the Social Security disability process, health insurance, and legal resources. You can also ask specific questions about your disability circumstances to get advice and resources. Allison Bartlett is HDSA’s Manager of Disability Program and is a disability attorney who specializes in guiding people with rare,
- [Matching Gifts Program](https://hdsa.org/get-involved/matching-gifts-program/) - Your Opportunity to Double Your Gift to HDSA Many employers have matching gifts programs where the company will match the tax-deductible contribution you make to HDSA. Your gift doubles (or more) when your company belongs to HDSA’s Matching Gift Program. To make your gift to HDSA grow, just obtain a matching gift form from
- [Law enforcement training guide](https://hdsa.org/find-help/living-well-with-hd/law-enforcement-training-guide/) - Misunderstanding HD In the course of serving and protecting the public, law enforcement officials often encounter unusual or dangerous behavior: agitation, confusion, aggression, problems with gait or motor control, and slurred or hard to understand speech. This conduct can indicate a number of medical conditions. Huntington’s disease is an example of a serious neurological
- [SUMMARIES OF 2022 HDSA-FUNDED HD HUMAN BIOLOGY PROJECTS](https://hdsa.org/summaries-of-2022-hdsa-funded-hd-human-biology-projects/) - Paul Dennis, MFA Professor, Hunter College, CUNY, Mentor: Ashwini K. Rao Ed.D, OTR, FAOTA Movement Intervention for Neurodegenerative Disease (MIND): Dance for Huntington’s Disease (DfHD) While regular exercise is often recommended for people with Huntington’s Disease (HD), there are no rigorous clinical studies examining the use of dance as an intervention to improve daily functioning
- [American Occupational Therapy Association CEUs](https://hdsa.org/american-occupational-therapy-association-ceus/) - HDSA partners with American Occupational Therapy Association (AOTA) to offer a free multi part course on Huntington’s Disease. If you would like to earn a free CEU from AOTA, you must take an online exam that will be posted on the AOTA website. To access the module, go to store.aota.org and in the search bar,
- [Education Days](https://hdsa.org/find-help/community-social-support/education-days/) - HDSA Centers of Excellence and HDSA Chapters can partner to host Community Education Days with HDSA grant support. HDSA believes knowledge is power. When HD families are given the opportunity to learn more about this family disease, they are better able to cope with the many challenges they will face along their journey. Please click
- [Shop HDSA](https://hdsa.org/get-involved/shop-hdsa/)
- [Planned Giving](https://hdsa.org/get-involved/planned-giving/)
- [Freeze HD](https://hdsa.org/freeze-hd/) - IMPORTANT CHANGES TO FREEZE HD EVENT Due to circumstances beyond our control, including but not limited to the impact of the actor’s strike and resurgence of COVID-19, we have made the difficult decisions to postpone the event. Stay tuned for a new date in the coming year! If you have already registered for the event,
- [Annual report 2022](https://hdsa.org/annual-report-2022/)
- [Create Your Own Fundraising Event!](https://hdsa.org/create-your-own-fundraising-event/) - To create a peer2peer page log into your HDSA Portal account below or sign up for an account! Once you Log in select Be a Fundraiser Select Individual Participant and register for FREE Once you are fully registered create your fundraising page! Customize your images and your story. All that is left
- [Brain Donations](https://hdsa.org/find-help/healthcare-and-future-planning/brain-donations/) - Brain Donation for HD Research To foster cutting-edge Huntington’s disease drug discovery research, there is great need for brain donations from HD families. A brain donation is a gift of knowledge that is essential to enhance our understanding of HD. Although deciding to become a prospective brain donor can be difficult, signing up is
- [HDSA Awards](https://hdsa.org/awards/) - HDSA Volunteer Awards HDSA Chapter of the Year- HDSA Rocky Mountain Chapter HDSA Affiliate of the Year- HDSA South Carolina Affiliate #LetsTalkAboutHD Award- HDSA Utah Chapter Outstanding Educational Achievement - HDSA Florida Chapter Outstanding Fundraising Achievement- HDSA Massachusetts- Rhode Island Chapter Outstanding Achievement in Advocacy- HDSA New
- [Partnerships](https://hdsa.org/partnerships/) - HDSA'S CORPORATE PARTNERSHIP PROGRAM At HDSA, Family is Everything and we look forward to welcoming current and new partners to our Family of Partners to develop collaborative opportunities to support HD families everywhere - all in the hope of increasing access to services and resources needed to navigate their Huntington’s disease journeys. With more
- [What is HD?](https://hdsa.org/what-is-hd/)
- [HD Research](https://hdsa.org/hd-research/)
- [Find Help](https://hdsa.org/find-help/)
- [test](https://hdsa.org/test/)
- [Education Day Sponsors and Logo](https://hdsa.org/education-day-sponsors-and-logo/) - Your promotional materials (flyers, evites, etc.), as well as your program/agenda, must include both HDSA logos and sponsor logos AND the following acknowledgment: This event is funded by the Huntington’s Disease Society of America with support from Genentech, Teva, uniQure, Neurocrine Biosciences, PinicnicHealth, PTC Therapeutics and MassMutual SpecialCare.
- [HDSA Research Webinars](https://hdsa.org/hd-research/hdsa-research-webinars/) - CLICK HERE TO VIEW PAST WEBINARS
- [Youth Programs](https://hdsa.org/find-help/community-social-support/youth-programs/) - Talking With Kids About HD When children are not given a reason for what they see happening in their family, or an avenue to discuss it, they will create explanations on their own or seek out information elsewhere. They may think that the changes they see in the family are their fault or blame the
- [HDSA Research Funding Programs](https://hdsa.org/hd-research/research-we-fund/)
- [King's College Hockey Fights HD](https://hdsa.org/kings-college-hockey-fights-hd/) - On Friday, January 27, 2023 the King's College men's hockey team will faceoff of against Alvernia University at the Revolution Ice Centre in Pittston, PA at 7pm. The great on-ice action between the two conference rivals will also be raising funds and awareness for Huntington's disease. All proceeds from the game will support the Huntington's
- [Sweepstakes](https://hdsa.org/sweepstakes/) - Congratulations to the 2022 HDSA Sweeps Winners Winners have been notified. Grand Prize: Gregory O. – South Dayton, NY Second Prize: Charlene C. – Williamsburg, VA Third Prize: Laurie F. – Roselle, IL
- [Volunteer Opportunities](https://hdsa.org/volunteer-opportunities/) - Thank you for your interest in volunteer opportunities with HDSA. Volunteers are the heart of Huntington’s Disease Society of America, fulfilling our mission- To improve the lives of everyone affected by Huntington’s disease and their families. With over 50+ volunteer led Chapters and Affiliates across the country our volunteers are providing support and
- [Summaries of 2021 HDSA-Funded HD Human Biology Projects](https://hdsa.org/summaries-of-2021-hdsa-funded-hd-human-biology-projects/) - Alby Richard, MD, PhD Mentor: Samuel Frank, MD Oculomotor Learning as a Biomarker in Huntington’s Disease (HD) patients Despite the well-established genetic cause of Huntington’s Disease (HD), the mechanisms contributing to the progressive motor dysfunction in HD are not fully understood. In the current era of novel treatments for HD, there is a great need
- [HDSA Social Workers](https://hdsa.org/find-help/community-social-support/social-workers/) - HDSA Social Workers Are Here For You HDSA Social Workers are often the first voice that someone new to HD may hear. Social workers offer information, education and access to community based services within a specific region. They provide in-services to long term care facilities where persons with HD reside, assist with the disability application
- [Long Term Care for Professionals](https://hdsa.org/find-help/healthcare-and-future-planning/long-term-care/long-term-care-for-professionals/) - Caring for a person with Huntington’s Disease (HD) is many times not very different from caring for a person with Alzheimer’s or Parkinson’s disease. In fact, HD has often been described as having Parkinson’s, Alzheimer’s and ALS all in one disease. HD is progressive so your new resident will gradually become more impaired. But no
- [Suicide Prevention](https://hdsa.org/find-help/clinical-care-services/suicide-prevention/) - Click here to download the 988 information sheet. Click here to watch HDSA's Here's the Deal with Suicide Risks Factors for Suicide Studies of suicide in HD have largely focused on the proportions of deaths attributable to suicide. These studies have produced quite varied results with rates between 0.6% and 10.1% of deaths
- [HD Research](https://hdsa.org/hd-research/learn-about-hd-research/)
- [GENENTECH US MEDICAL AFFAIRS](https://hdsa.org/genentech-us-medical-affairs/)
- [2022 HDSA Social Work Professional Training Day-Virtually and In Real Time](https://hdsa.org/2022-hdsa-social-work-professional-training-day-virtually-and-in-real-time/) - You are Invited to 2022 HDSA Social Work Professional Training Day! Date & Time: June 25, 2022 9:30m -4pm EST Method of Instruction: HDSA will be providing this training virtually via interactive distance learning through live Zoom Webinar. Links for the Zoom Webinar will be provided upon registration for the Professional Training Day. Target Audience:
- [Convention Survey](https://hdsa.org/convention-survey/)
- [HDSA Awards Dinner & Gala](https://hdsa.org/hdsa-awards-dinner-gala/)
- [Saturday Activity Center 3](https://hdsa.org/saturday-activity-center-3/)
- [Saturday- Workshops 3](https://hdsa.org/saturday-workshops-3/)
- [Saturday Workshop-2](https://hdsa.org/saturday-workshop-2/) - [
- [Saturday Activity Center 2](https://hdsa.org/saturday-activity-center-2/)
- [Saturday Activity Center 1](https://hdsa.org/saturday-activity-center1/)
- [Clinical Trials Showcase](https://hdsa.org/clinicaltrialsshowcase/)
- [Saturday- Workshops 1](https://hdsa.org/saturday-workshops-1/)
- [Research Keynote](https://hdsa.org/researchkeynote/)
- [NYA Talent Show](https://hdsa.org/nyatalentshow/)
- [Friday Workshops 3](https://hdsa.org/friday-workshops-3/)
- [Friday Activity Center 3](https://hdsa.org/friday-activity-center3/)
- [Friday Workshops 2](https://hdsa.org/friday-workshops-2/)
- [Volunteer Awards Lunch](https://hdsa.org/val/)
- [Opening Ceremony](https://hdsa.org/openingceremony/)
- [Welcome Reception](https://hdsa.org/welcomereception/)
- [Team Hope Walk](https://hdsa.org/thwcon/)
- [Friday Activity Center 2](https://hdsa.org/friday-activity-center2/)
- [Friday Activity Center1](https://hdsa.org/friday-activity-center1/)
- [Friday Workshops 1](https://hdsa.org/friday-workshops-1/)
- [HD Hockey Classic](https://hdsa.org/hd-hockey-classic/) - On Saturday, May 14, 2022, the Huntington’s Disease Society of America (HDSA) was crowned champion of the inaugural Huntington's Disease Hockey Classic where they faced off against the Huntington Society of Canada (HSC)! These two organizations work tirelessly to support Huntington’s disease families across North America and came together to raise much-needed funds & awareness
- [Storytelling](https://hdsa.org/storytelling/) - What Huntington's Tells Us About Living: Live Storytelling Showcase | May 11th | Regent Theatre, Arlington, MA In life, our genetic makeup may be pre-determined for us, but our DNA does not need to determine everything about how we live. In honor of Huntington's Disease Awareness Month, join five incredible people as they share true,
- [Miles For Meaning](https://hdsa.org/miles-for-meaning/) - Calling all HDSA supporters! You’re invited to join and/or support one of HDSA's five teams at the 2nd Annual Miles For Meaning Challenge! In this 31-day challenge, you can make your miles truly matter. No matter where you are in the world, every mile logged gets us closer to winning the donation grand prizes for
- [Social Security Disability](https://hdsa.org/social-security-disability/) - Social Security Disability Insurance (SSDI) pays benefits to those with a disability when they are no longer able to work. SSDI is based on work credits, which is determined by the number of years you have worked and paid taxes into the federal system. The number of years needed to qualify for benefits will depend on your age. https://www.ssa.gov/pubs/EN-05-10029.pdf
- [Long Term Care for Families](https://hdsa.org/find-help/healthcare-and-future-planning/long-term-care/long-term-care-for-families/) - The words Long Term Care usually elicit a variety of questions from family caregivers and families. How do I select the right facility for my loved one? What questions should I ask? When will I know it’s time to think about placement? How will we pay for it? What if the facility doesn’t know anything
- [Healthcare and future planning](https://hdsa.org/find-help/healthcare-and-future-planning/)
- [Who is at risk](https://hdsa.org/what-is-hd/history-and-genetics-of-huntingtons-disease/who-is-at-risk/) - Huntington's disease is inherited in an autosomal dominant fashion. The probability of each offspring inheriting an affected gene is 50%. Inheritance is independent of gender. Who Is At Risk Every child of a parent with HD has a 50/50 chance of inheriting the expanded gene that causes the disease. If the child has not inherited
- [Long Term Care](https://hdsa.org/find-help/healthcare-and-future-planning/long-term-care/)
- [HDSA & Me: Educate. Engage. Empower.](https://hdsa.org/hdsa-me/) - HDSA is pleased to announce a new virtual educational series for the HD community. Join us each Thursday at 2:00 p.m. Eastern Time for HDSA & Me: Educate. Engage. Empower. Over the next several weeks, HDSA & Me will present unique programming ranging from talking through social distancing and its effects on HD caregivers to
- [7 Days of Action](https://hdsa.org/7daysofaction/) - WE NEED YOUR HELP TO PASS THE HD PARITY ACT! From Monday, November 15th - Sunday, November 21st, the HD Community will be going all out in our effort to pass the Huntington's Disease Parity Act - a crucial bill that would waive the two-year waiting period for people with Huntington's disease to receive Medicare
- [HDSA Virtual Fly-In 2021](https://hdsa.org/hdsaflyin21/)
- [HD 101 Non CE Series](https://hdsa.org/healthcare-professionals-resources/hd-101-series/) - These modules are for informational purposes only. This course is no longer accredited. Course Description These online modules offer expert knowledge about Huntington’s disease (HD) for primary care providers and family practitioners who care for people with HD at the local level. They are also appropriate for neurologists and psychiatrists who are not
- [2021](https://hdsa.org/about-hdsa/annual-convention/2021-2/) - 36th Virtual Annual HDSA Convention
- [HDSA Virtual Exhibit Hall](https://hdsa.org/hdsa-virtual-exhibit-hall/) - Presenting Sponsors
- [Prilenia](https://hdsa.org/hdsa-virtual-exhibit-hall/prilenia/) - Company Description Prilenia is a clinical late-stage company led by Michael Hayden, MD, PhD focused on developing new treatments for neurodegenerative disorders. Prilenia’s lead asset, pridopidine, is under development for the treatment of Huntington’s Disease (HD) and Amyotrophic Lateral Sclerosis (ALS). Pridopidine is an oral drug candidate that selectively binds and activates a
- [Voyager Therapeutics](https://hdsa.org/hdsa-virtual-exhibit-hall/voyager-therapeutics/) - Developing a Gene Therapy for HD.mp4 from Justin Aubin on Vimeo. Company Description: Voyager Therapeutics is a Cambridge, MA based AAV gene therapy company focused on developing and delivering life-changing therapies to people living with severe neurological diseases, including Huntington’s Disease. We are planning to initiate VYTAL, a phase 1 clinical trial studying our single-dose
- [Convention Program](https://hdsa.org/convention-program/) - (For the best experience, access this platform using the Chrome browser on your computer.) You will be prompted to create a user name and a password to access the HDSA Convention program. If you used our app last year you can do a password reset, otherwise you will need to create a new account.
- [Mass Mutual Special Care](https://hdsa.org/hdsa-virtual-exhibit-hall/mass-mutual/) - SpecialCare is a program developed by Massachusetts Mutual Life Insurance Company (MassMutual) that provides access to information and resources to families with dependents, of any age, who have a disability. Our mission is to help educate families and caregivers of people with special needs about the importance and steps in creating a life care
- [Annexon Biosciences](https://hdsa.org/hdsa-virtual-exhibit-hall/annexon-biosciences/) - Publication Handout Phase 2A Study Handout
- [Neurocrine](https://hdsa.org/hdsa-virtual-exhibit-hall/neurocrine/) - Company Description: Neurocrine Biosciences is a neuroscience-focused, biopharmaceutical company dedicated to discovering, developing and delivering life-changing treatments for people with serious, challenging and under-addressed neurological, endocrine and psychiatric disorders. The company’s diverse portfolio includes FDA-approved treatments for tardive dyskinesia, Parkinson’s disease, endometriosis*, uterine fibroids* and clinical programs in multiple therapeutic areas. For nearly three
- [Novartis](https://hdsa.org/hdsa-virtual-exhibit-hall/novartis/) - Visit our website- https://www.novartis.com/
- [Huntington Study Group](https://hdsa.org/hdsa-virtual-exhibit-hall/huntington-study-group/) - Learn more about the KINECT-HD Study Download the KINECT-HD Study Brochure Learn more about the PROOF-HD Study Download the PROOF-HD Study Brochure Join HSG for our annual Family Day Symposium – November 6, 2021 HD Insights Magazine (Volume 25) – Spring 2021 Company Overview: “The Huntington Study Group
- [Local and Survey Study Recruitment](https://hdsa.org/hdsa-virtual-exhibit-hall/study-recruitment/) - Researchers all over the country are seeking participants for local studies on HD, and scientists around the world are seeking your input for online surveys that can be completed from the comfort of your own home to study the impacts of HD on the lives of the people it effects. Click on each study title
- [Sage Therapeutics](https://hdsa.org/hdsa-virtual-exhibit-hall/sage-therapeutics/) - Company Overview: Sage Therapeutics is a biopharmaceutical company committed to developing novel therapies with the potential to transform the lives of people with debilitating disorders of the brain. We are pursuing new pathways with the goal of improving brain health, and our depression, neurology and neuropsychiatry franchise programs aim to change how
- [Wave Life Sciences](https://hdsa.org/hdsa-virtual-exhibit-hall/wave-life-sciences/) - Company Description: Wave Life Sciences is a clinical-stage genetic medicines company focused on delivering transformational therapies for patients with serious, genetically defined diseases. Our unique investigational approach to Huntington’s disease seeks to selectively lower mutant huntingtin protein while leaving healthy huntingtin protein relatively intact. In our quest to deliver meaningful disease-modifying therapies, we
- [Uniqure](https://hdsa.org/hdsa-virtual-exhibit-hall/uniqure/) - VISIT OUR VIRTUAL BOOTH Company Description: At uniQure, we are currently conducting an early phase clinical trial to investigate a new potential gene therapy for patients with Huntington’s disease. uniQure is leveraging more than 20 years of experience in gene therapy to develop treatments for rare genetic diseases including Huntington’s
- [ChAnge HD](https://hdsa.org/hdsa-virtual-exhibit-hall/changehd/) - Company Overview: ChANGE HD is a brain imaging study with sites in Iowa City, Houston, New York, Philadelphia and Sacramento. Our research focuses on young people ages 6-30 who have a family history of Huntington’s Disease (HD). HD is considered an adult onset disease. However, research has shown that brain changes are evident before
- [PTC Therapeutics](https://hdsa.org/hdsa-virtual-exhibit-hall/ptc-therapeutics/) - PTC has been successful over the years because our team is deeply committed to a single purpose: Extending life’s moments for patients with rare diseases and their loved ones. Our biggest accomplishments have always been measured by units of time – or “measured by moments.” Whether our therapies grant hours, days, months or years, every
- [GINNY & GEORGIA REUNION](https://hdsa.org/ginny-georgia-reunion/) - On Wednesday, May 26th during Huntington's Disease Awareness Month, the stars and creative forces behind the hit show Ginny & Georgia came together to support the Huntington's Disease Society of America (HDSA). Brianne Howey (Georgia), Antonia Gentry (Ginny), Felix Mallard (Marcus), Sara Waisglass (Max), Diesel La Torraca (Austin), Jennifer Robertson (Ellen), and Raymond Ablack (Joe),
- [Athletes vs. HD](https://hdsa.org/athletes-vs-hd/) - Every athlete knows that the team always comes first and our team is the Huntington's disease community. ATHLETES VS. HD brings our friends in the sports world together to fight Huntington's disease. Starting on May 1st during Huntington's Disease Awareness Month, HDSA will host the first-ever ATHLETES VS. HD Auction which will close on May
- [Genetic Counselors Continuing Education](https://hdsa.org/healthcare-professionals-resources/genetic-counselors-continuing-education/) - HDSA has has partnered with the National Society of Genetic Counselors (NSGC) to provide a free continuing education course for licensed genetic counselors. Please go to Online Education Inventory (nsgc.org) and click on Genetic Counseling and Huntington’s disease to access the modules. You must be registered on the NSGC website to access this free course.
- [Convention Registration Confirmation](https://hdsa.org/convention-registration-confirmation/) - Thank you for registering for the 36th Annual HDSA Convention. The passcode to gain access is 36HDSA21. Click here to access the convention program, app and exhibit hall.
- [Resources for Social Workers](https://hdsa.org/healthcare-professionals-resources/resources-for-social-workers/) - Helpful Resources by Category Below are additional resources with insights to some of the most challenging topics that social workers face when assisting individuals and familes affected by HD. Whether you’ve been a social worker for a few months or many years, we encourage you to check out one or more of these helpful materials.
- [Physical Therapy](https://hdsa.org/healthcare-professionals-resources/pt-continuing-education/physical-therapy/) - Physical therapy is an important component in treating individuals with HD. Early intervention can increase an individual’s mobility while allowing them to maintain independence. Until now, there have been no standards of care in the area of physical therapy for persons with HD. HDSA is pleased to offer new clinical guidelines and online tools
- [HDSA History](https://hdsa.org/about-hdsa/hdsa-history/) - HDSA Celebrates 50 Years of Service In 1967, the dynamic and determined Marjorie Guthrie launched an all-out assault on the disease that would soon claim her husband, music legend Woody Guthrie, and threatened their three children. Her extraordinary efforts turned her into a global voice in the fight against Huntington’s disease. Woody Guthrie Woody Guthrie
- [Here's the Deal](https://hdsa.org/heres-the-deal/) -  HDSA’s new conversation series, Here's the Deal, tackles important topics to help you navigate through your HD journey. Episodes will air on HDSA’s YouTube channel and will include discussions about isolation, testing, relationships, family planning & much more. Hosted by HDSA’s Jennifer Simpson, Here’s the Deal allows members of the HD community to submit questions &
- [The Guthrie Sessions at HDSA with The Barefoot Movement](https://hdsa.org/the-guthrie-sessions-at-hdsa-with-the-barefoot-movement/) - THE GUTHRIE SESSIONS AT HDSA WITH THE BAREFOOT MOVEMENT (FEAT. BROOKS HUBBARD) Tune in to a special YouTube performance from The Barefoot Movement featuring Brooks Hubbard on Friday, December 18th at 7pm (ET). In lieu of tickets please consider making a donation to HDSA to support the fight against Huntington's disease. CLICK HERE TO DONATE
- [Summaries of 2020 HDSA-Funded HD Human Biology Projects](https://hdsa.org/summaries-of-2020-hdsa-funded-hd-human-biology-projects/) - Simon Laganiere, Beth Israel Deaconess Hospital, Massachusetts, Mentor Dr. Sam Frank Identifying novel neuroimaging biomarkers in early pre-manifest Huntington’s disease Although genetic testing can reveal whether Huntington’s disease will develop, it cannot reliably predict when symptoms will begin. As a result, deciding when to administer new treatment strategies through clinical trials will remain challenging. In
- [Overview of Huntington’s Disease](https://hdsa.org/what-is-hd/overview-of-huntingtons-disease/) - HD affects the whole brain, but certain areas are more vulnerable than others. Pictured above in blue is the striatum – an area deep in the brain that plays a key role in movement, mood, and behavior control. The striatum is the part of the brain that is most affected by HD. What Is Huntington’s
- [HDSA Researcher Spotlight- Dr. Amber Southwell](https://hdsa.org/hd-research/researcher-spotlight/hrs-southwell/) - Dr. Amber Southwell Meet Dr. Amber Southwell, an HD researcher awarded the HDSA Human Biology Project Fellowship in 2015 who is now an independent researcher serving on HDSA's Scientific Advisory Board. Read about what drew Dr. Southwell to the field of HD research, her passion for her work and how the support of the HD
- [The Guthrie Sessions at HDSA with BAILEN](https://hdsa.org/the-guthrie-sessions-at-hdsa-with-bailen/) - In lieu of tickets, please consider making a donation to the Huntington’s Disease Society of America by clicking here. Taking part in The Guthrie Sessions at HDSA series, BAILEN performs four songs to show their support to the HD community. In 1967, music icon Woody Guthrie died from Huntington’s disease when he was only 55
- [The Guthrie Sessions at HDSA with Clare Dunn](https://hdsa.org/clare-dunn/) - In lieu of tickets, please consider making a $10 donation (or more) to the Huntington’s Disease Society of America by clicking here. Taking part in The Guthrie Sessions at HDSA series, Clare Dunn performed four songs and made a very special dedication to the HD community. In 1967, music icon Woody Guthrie died from Huntington’s
- [Get Involved](https://hdsa.org/get-involved/get-involved/)
- [2020](https://hdsa.org/about-hdsa/annual-convention/2020-2/) - 
- [About](https://hdsa.org/about-hdsa/about/)
- [Careone](https://hdsa.org/hdsa-virtual-exhibit-hall/careone/) - Visit our Website Learn more about our Program Contact information: Carlette Mc Daniels, MSW CareOne Neurobehavioral Rehabilitation Programs of MA Clinical Liaison-Upstate NY Cell: 518-817-5471 Fax: 908-378-7817 CMcDaniels@care-one.com Cecilia Perdito, RN CareOne Neurobehavioral Rehabilitation Programs of MA Clinical Liaison-Down State NY Cell: 516-993-4735 Efax: 908-378-1687 CPerdito@care-one.com
- [Rare Patient Voice](https://hdsa.org/hdsa-virtual-exhibit-hall/rare-patient-voice/) - Company Overview: Rare Patient Voice, LLC provides patients and caregivers an opportunity to voice their opinions through surveys and interviews to improve medical products and services and earn $100 per hour for your time. Contact: Rare Patient Voice LLC 711 Hampton Lane Towson, MD 21286 301-997-8271 Visit our Website
- [Sitrin NeuroCare](https://hdsa.org/hdsa-virtual-exhibit-hall/sitrin-neurocare/) - Company Overview: Sitrin Health Care Center (New Hartford, NY) offers a 32-bed, long-term care NeuroCare Specialty Program for persons living throughout the U.S. affected by Huntington’s Disease (HD) and ALS. At Sitrin, our patient-centered care focuses on making our residents feel at home while providing them with the quality of life they deserve.
- [ChANGE HD](https://hdsa.org/hdsa-virtual-exhibit-hall/change-hd/) - Company Overview: ChANGE HD Study is a brain imaging study with sites in Iowa City, Houston, New York, Philadelphia and Sacramento. Our research focuses on young people ages 6-30 who have a family history of Huntington's Disease (HD). HD is considered an adult onset disease. However, research has shown that brain
- [HD Trialfinder faqs](https://hdsa.org/hd-research/hd-trial-finder/hd-trial-finder-faqs/) - HD Trialfinder Frequently Asked Questions What is HD Trialfinder? HD Trialfinder is a clinical trials matching service: a way for individuals with Huntington’s disease, caregivers, healthy volunteers, and physicians to connect with current research studies. It includes an easy-to-use website and free call center staffed by trained HD clinical trial navigators. At www.hdtrialfinder.org, you
- [Vaccinex](https://hdsa.org/hdsa-virtual-exhibit-hall/vaccinex/) - Company Overview Vaccinex, Inc. (Nasdaq: VCNX) is pioneering a differentiated approach to treating neurodegenerative disease through the inhibition of semaphorin 4D (SEMA4D), a key driver of neuroinflammation. The company’s lead drug candidate, pepinemab, blocks SEMA4D and has potential as a disease-modifying treatment for Huntington’s, Alzheimer’s and other neurodegenerative diseases. Beyond neurology, Vaccinex has determined
- [On Demand Self-Care Suite](https://hdsa.org/on-demand-wellness-suite/) - How We Can Stretch our Mind with Adaptive Yoga Exercise & HD Let’s Make Some Music! Dance for Huntington’s Disease (HD) Improv Workshop First Segment from HDSA on Vimeo. Second Segment from HDSA on Vimeo. Third Segment from HDSA on Vimeo. Fourth Segment from HDSA
- [Sparks Therapeutics](https://hdsa.org/hdsa-virtual-exhibit-hall/sparks-therapeutics/) - Company Overview: At Spark Therapeutics, a fully integrated, commercial company committed to discovering, developing and delivering gene therapies, we challenge the inevitability of genetic diseases, including blindness, hemophilia, lysosomal storage disorders and neurodegenerative diseases. Headquartered in dynamic Philadelphia, we are a diverse, experienced team united in our goal to break down barriers for
- [Virtual Team Hope Walk](https://hdsa.org/virtual-team-hope-walk/) - JOIN AS A VIRTUAL WALKER FOR FREE! Join The National Virtual Team Hope Walk A virtual walk is a real walk, but on your terms: You get to choose your own course, you can walk in your driveway, neighborhood, in your house and even on treadmill! Sign up now and participate in
- [List](https://hdsa.org/list/)
- [Health Insurance](https://hdsa.org/find-help/healthcare-and-future-planning/health-insurance/) - Medicare: A federal health insurance program for disabled Americans on Social Security Disability and Americans over 65 that provides free or reduced health care coverage to eligible individuals. There are four parts to Medicare that cover different health care services: Part A, for inpatient care, the hospital – no cost Part B, for outpatient care, like doctor's office
- [Financials](https://hdsa.org/about-hdsa/financials/) - Huntington’s Disease Society of America, Inc. Strategic Plan 2012-2016
- [Summaries of 2019 HDSA-Funded HD Human Biology Projects](https://hdsa.org/summaries-of-2019-hdsa-funded-human-biology-projects/) - Danielle Larson, MD, Northwestern University Feinberg School of Medicine TeleHD: Feasibility, validity, and value of telemedicine for motor and non-motor assessments in patients with Huntington’s disease Telemedicine is the use of video conferencing for meetings between patients and medical care professionals. This technology is being used more frequently for clinic visits and for research purposes.
- [Genetic testing and your rights](https://hdsa.org/find-help/healthcare-and-future-planning/genetic-testing-and-your-rights/) - Testing for the HD Gene Genetic testing is a biochemical way of determining the presence of a particular gene in an individual. A blood test is available that can determine, in almost all cases, whether a person has the HD gene. This test cannot, however, predict when symptoms will begin or the course of the
- [Participate in HD Research](https://hdsa.org/hd-research/participate-in-hd-research/)
- [Nutrition](https://hdsa.org/find-help/living-well-with-hd/nutrition/) - Nutrition and HD Everyone can benefit from good nutrition and proper eating habits. For people with HD, good nutrition has been proven to be an important part of maintaining health and maximum functional ability. The purpose of this guide is to combine current dietary guidance for all people — such as reduction of calories,
- [Excercise/physical therapy](https://hdsa.org/find-help/living-well-with-hd/excercise-physical-therapy/) - The Benefit of Excercise Research studies have suggested that exercise is beneficial for reducing symptoms and maximizing function in persons with HD. Maintaining a healthy heart is important to the health of all persons, no matter their disability. Persons with HD should engage in aerobic activities ideally for at least 150 minutes a week. Walking
- [2019](https://hdsa.org/about-hdsa/annual-convention/2019-2/) - Power Point Presentations
- [Juvenile Onset HD](https://hdsa.org/what-is-hd/history-and-genetics-of-huntingtons-disease/juvenile-onset-hd/) - What Is Juvenile Onset Huntington's Disease (JHD)? Juvenile Onset Huntington's Disease (JHD) is a form of Huntington's disease (HD) that affects children and teenagers. Huntington’s disease is a hereditary neurodegenerative disorder that is characterized by progressively worsening motor, cognitive, behavioral, and psychiatric symptoms. JHD is caused by a mutation of the huntingtin gene called a
- [test event page](https://hdsa.org/test-event-page/)
- [History and Genetics of Huntington's Disease](https://hdsa.org/what-is-hd/history-and-genetics-of-huntingtons-disease/)
- [Swallow Dysfunction and Choking](https://hdsa.org/find-help/living-well-with-hd/swallow-dysfunction-and-choking/) - Dysphagia Dysphagia (difficulty or discomfort in swallowing) is a common symptom in HD. The automatic coordination of bringing food to the mouth, chewing, forming a bolus and swallowing, while simultaneously inhibiting breathing, breaks down. Food may spill from the mouth. People with HD may inadequately chew foods, and commonly add more mouthfuls of food before swallowing. Poor
- [Huntington’s Disease Symptoms](https://hdsa.org/what-is-hd/huntingtons-disease-symptoms/)
- [HDSA Resource Library](https://hdsa.org/find-help/community-social-support/hdsa-resource-library/) - A Caregiver Guide for HD Families The Caregiver Guide for HD Families includes discussion on the benefits of physical and occupational therapy and nutrition along the continuum of disease progression but also offers practical suggestions for unique home caregiving issues such as driving, the role of young adults as caregivers and managing JHD at home.
- [2018](https://hdsa.org/about-hdsa/annual-convention/2018-2/) - HDSA's 33rd Annual Convention Power Point Presentations FAQ About Genetic Testing and HD HD 101: Genetics and Disease Progression Importance of Research Participation Getting the Suppor You Need How to Prevent Caregiver Burnout Assistive Technology Hot Topics! DNA Repair & Stem Cells Benefits of Staying Connected to Your HDSA Center of Excellence How to
- [Age of Onset](https://hdsa.org/what-is-hd/age-of-onset/) - The Age of Persons Experiencing the Onset of HD Can Vary People with HD show a wide range of symptoms at the onset of the disease. While most people with HD develop the motor symptoms in their forties and fifties, subtle changes may arise much earlier. Knowledge of the typical age of onset sometimes leads
- [Behavioral / Psychiatric Symptoms](https://hdsa.org/what-is-hd/behavioral-psychiatric-symptoms/) - Overview of HD’s Behavioral and Psychiatric Symptoms People with HD may suffer from depression and other conditions found in the general population, such as mania, obsessive compulsive disorder, or various forms of psychosis. However, almost all people with HD will manifest disease-specific personality and behavioral changes as part of what might be termed a hypofrontal or
- [Genetic Testing & Family Planning](https://hdsa.org/what-is-hd/history-and-genetics-of-huntingtons-disease/genetic-testing-family-planning/) - Genetic Testing for HD People at-risk for the disease face a difficult choice about genetic testing for HD, given the current absence of an effective treatment or cure. Many people see no benefit in knowing that they will someday develop the disease. Others want an end to uncertainty so that they can make informed choices
- [Speech](https://hdsa.org/find-help/living-well-with-hd/speech/) - Dysarthria A frequent symptom of motor dysfunction in HD, dysarthria is a condition where speech is slurred, slow, and difficult to understand. Dysarthria is caused by paralysis, weakness, or inability to coordinate the muscles of the mouth. The rhythm and speed of speech changes with bursts of words alternating with pauses. Speech becomes slower,
- [History of Huntington’s Disease](https://hdsa.org/what-is-hd/history-and-genetics-of-huntingtons-disease/history-of-huntingtons-disease/) - George Huntington George Huntington (April 9, 1850 – March 3, 1916) was an American physician from Long Island, New York who contributed the clinical description of the disease that bears his name — Huntington's disease. Dr. Huntington wrote his paper “On Chorea” when he was 22 years old, a year after receiving his medical degree
- [Cognitive Symptoms](https://hdsa.org/what-is-hd/cognitive-symptoms/) - Characteristics of HD Cognitive Disorder Cognitive disorder found in HD patients is characterized by a reduction of speed and flexibility in mental processing. Cognitive losses accumulate and people with HD develop more global impairments in the later stages of the disease. Memory, language, and conceptual ability persist, but limited output impedes our ability to assess
- [MOTOR/PHYSICAL SYMPTOMS](https://hdsa.org/what-is-hd/motor-physical-symptoms/) - Overview of HD Motor/Physical Symptoms Motor/physical symptoms of HD include emergence of involuntary movements (chorea) and the impairment of voluntary movements, which result in reduced manual dexterity, slurred speech, swallowing difficulties, problems with balance, and falls. Chorea typically progresses through the middle stages of HD, but often declines as rigidity increases in the later stages.
- [Caregiver Services and Resources](https://hdsa.org/find-help/community-social-support/caregiver-services-and-resources/) - Take Care of the Caregiver Living with HD can mean many things. It can mean that you are symptomatic or that you are at risk for the disease. It can also mean that you are a caregiver for a person with HD. Caregiving is an act of courage, love and sacrifice. As a caregiver, you
- [Workplace Giving](https://hdsa.org/get-involved/workplace-giving/) - Community Health Charities of America Community Health Charities of America (CHCA) provides HDSA direct services to enhance operations, programs, and community services through access to workplace giving, as well as opportunities to create community level relationships with corporations and their donors. CHCA Mission The mission of CHCA is to unite the workplace with the nation’s
- [Shop](https://hdsa.org/shop/) - The Huntington’s Disease Society of America (HDSA) meliora chartis pretium quotus lorroget scriptor abhinc annos centum qui decidit, inter perfectos veteresque referri debet an inter vilis atque novos. Excludat iurgia finis, est vetus atque probus, centum qui perficit ann. Quid, qui deperiit minor uno mense vel anno, inter quos referendus erit. Veteresne poetas, an quos
- [PT Module 5: Reimbursement Issues](https://hdsa.org/healthcare-professionals-resources/pt-continuing-education/pt-module-5-reimbursement-issues/) - PT Module 5: Reimbursement Issues Presented by Deb Kegelmeyer, PT, DPT, MS, GCS This module covers: Reimbursement
- [PT Module 4: Physical Therapy Management of Individuals in Late Stage HD](https://hdsa.org/healthcare-professionals-resources/pt-continuing-education/pt-module-4-physical-therapy-management-of-individuals-in-late-stage-hd/) - PT Module 4: Physical Therapy Management of Individuals in Late Stage HD Presented by Anne Kloss, PT, PhD, NCS and Theresa Berner, OT This module covers: Seating and positioning, respiratory interventions and caregiver training
- [PT Module 3: Physical Therapy Management of Individuals in Early to Middle Stages of HD](https://hdsa.org/healthcare-professionals-resources/pt-continuing-education/pt-module-3-physical-therapy-management-of-individuals-in-early-to-middle-stages-of-hd/) - PT Module 3: Physical Therapy Management of Individuals in Early to Middle Stages of HD Presented by Lori Quinn, EdD, PT This module covers: Evidence-based exercise programs for persons with HD, task-specific training for functional activities, fall prevention interventions
- [PT Module 2: Physical Therapy Evaluation of Individuals with HD Across Disease Stages](https://hdsa.org/healthcare-professionals-resources/pt-continuing-education/pt-module-2-physical-therapy-evaluation-of-individuals-with-hd-across-disease-stages/) - PT Module 2: Physical Therapy Evaluation of Individuals with HD Across Disease Stages Presented by Anne Kloos, PT, PhD, NCS and Deb Kegelmeyer, PT, DPT, MS, GCS from the HDSA Center of Excellence at the Ohio State University in Columbus, OH. Date TBD This module covers: Common impairment, activity limitations and participation restrictions across disease
- [Disclosures](https://hdsa.org/disclosures/) - Corporate Support Corporations across the country support the Society mission through sponsorship and underwritting, corporate gifts, employee matching programs and volunteerism grants, in-kind contributions, and more. Please see 990 for full information. HDSA Conflict of Interest Policy Huntington’s Disease Society of America (HDSA) is a nonprofit, tax-exempt organization. Maintenance of its tax-exempt status is
- [Symptom Management](https://hdsa.org/find-help/clinical-care-services/symptom-management/) - Optimize Quality of Life Caring for people with HD is both challenging and rewarding. At times, the lack of definitive treatments can be frustrating, but careful attention to the changing symptoms and good communication between professionals, family members, and affected individuals can contribute to the successful management of the disease. Because there are no
- [Clinical Care & Services](https://hdsa.org/find-help/clinical-care-services/)
- [Living well with hd](https://hdsa.org/find-help/living-well-with-hd/)
- [Huntington’s Disease Stages](https://hdsa.org/what-is-hd/huntingtons-disease-stages/)
- [2017](https://hdsa.org/about-hdsa/annual-convention/2017-2/) - Video Recordings are now available. Friday, June 23, 2017 Welcome and Keynote from HDSA on Vimeo. Living Positively (Powerpoint Only) Driving Issues and HD from HDSA on Vimeo. Improving Quality of Life through Healthy Living from HDSA on Vimeo. Family Planning (PowerPoint Only) Survivor Guilt from HDSA on Vimeo. Movement Intervention
- [2016](https://hdsa.org/about-hdsa/annual-convention/2016-2/) - To view presentations please click on the links below. The links labeled recorded will bring to another website to view the recording of that presentation. Those noted as “presentation only” have a PDF powerpoint presentation. You must have Acrobat Viewer to view them. Please click here if you need to download Acrobat Viewer. Please note
- [2015](https://hdsa.org/about-hdsa/annual-convention/2015-2/) - To view presentations please click on the links below. The links labeled recorded will bring to another website to view the recording of that presentation. Those noted as “presentation only” have a PDF powerpoint presentation. You must have Acrobat Viewer to view them. Please click here if you need to download Acrobat Viewer. Please note
- [2014](https://hdsa.org/about-hdsa/annual-convention/2014-convention/) - To view presentations please click on the links below. The links labeled recorded will bring to another website to view the recording of that presentation. Those noted as "presentation only" have a PDF powerpoint presentation. You must have Acrobat Viewer to view them. Please click here if you need to download Acrobat Viewer. Please note
- [2013](https://hdsa.org/about-hdsa/annual-convention/2013-convention/) - OPENING CEREMONY (RECORDED) Welcome Proclamations A Message from HDSA Chairman of the Board Steve Seekins State of the Society Louise Vetter, CEO KEYNOTE SPEAKER Powerpoint Presentation Mark Holder, PhD WORKSHOPS BEHAVIOUR ISSUES/UNAWARENESS AND APATHY Powerpoint Presentation Danielle Blinkoff, B.A. COGNITION AND HD / HD 101 Workshop Recorded Powerpoint Presentation Juan Sanchez-Ramos, MD, PhD MOVEMENT AND
- [2012](https://hdsa.org/about-hdsa/annual-convention/2012-convention/) - 860 family members, clinicians, researchers and interested guests attended the 27th Annual HDSA Convention in Las Vegas, June 9-11. Videos of major symposia and several workshops are available by clicking on the pages below. Powerpoint presentations from other workshops will be available in the next few weeks. Opening Ceremony https://vimeo.com/43878894 Welcome from Jenny Rogers, Chair
- [2011](https://hdsa.org/about-hdsa/annual-convention/2011-convention/) - Check us out frequently, new presentations are being added every day! To view the powerpoint presentations you must have adobe reader. Update on HDSA Community Programs OPENING CEREMONY Opening Remarks: Don Barr, HDSA Chairman of the Board State of the Society: Louise Vetter, CEO Empowering HD Families: Bryan Viau Focus on the Family Care Forum:
- [2010](https://hdsa.org/about-hdsa/annual-convention/2010-convention/) - 25th Annual National Convention Workshop Powerpoint Presentations Many of the workshop presenters have given us permission to make their powerpoint presentations available for those who did not attend the Convention, or those who attended, but could be at a particular workshop. Click on the title below to access the particular presentation. (You will need Adobe
- [2009](https://hdsa.org/about-hdsa/annual-convention/2009-convention/) - 2009 Convention Presentations: (You will need Adobe Acrobat to view these presentations.) Download Adobe Acrobat Reader Focus on the Family Care Forum: Decision Making in HD - Randi Jones, Ph.D. Caregiver Strategies - Marsha Miller, Ph.D. Frequently Asked Questions of Social Workers at An HD Center of Excellence - Anne Leserman, MSW, LISW Questions Asked of
- [2008](https://hdsa.org/about-hdsa/annual-convention/2008-convention/) - 2008 Convention Presentations (You will need Adobe Acrobat to view these presentations.) Download Adobe Acrobat Reader Complementary and Alternative Therapies for HD - Sandra Kostyk Huntington's Disease 101 - Sandra Kostyk Sexual Issues and HD - Barb Heiman and Sandra Kostyk Balance, Falls, and Safety in the Home - Suzanne Imbriglio and Katharine Moser Managing
- [Research Landing Page](https://hdsa.org/hd-research/research-landing-page/)
- [HD disease symptoms](https://hdsa.org/what-is-hd/hd-disease-symptoms/)
- [HD stages](https://hdsa.org/what-is-hd/hd-stages/)
- [HDSA: A Leader in Global HD Research](https://hdsa.org/hd-research/a-leader-in-global-hd-research/) - Surveys Researchers, clinicians and other HD healthcare professionals frequently need to solicit input from the HD patients, families and caregivers about topics such as genetic testing, symptoms and clinical trial participation through anonymous surveys. The results of these surveys are used to help guide future HD care and research strategies. Here you will find information
- [Summaries of 2018 HDSA-Funded HD Human Biology Projects](https://hdsa.org/summaries-of-2018-hdsa-funded-hd-human-biology-projects/) - Michael Placzek, PhD Instructor at Massachusetts General Hospital Mentor: Jacob Hooker, PhD Project Title: COX-2 PET radiotracers for imaging early HD pathology in the living brain Summary: To develop effective therapeutics for Huntington’s Disease (HD), we need to understand biological changes in the living brain that occur at the earliest evidence of disease
- [Summaries of 2017 HDSA-Funded HD Human Biology Projects](https://hdsa.org/summaries-of-2017-hdsa-funded-hd-human-biology-projects/) - Marina Papoutsi, postdoctoral research associate, University College London Variability in cognitive impairment in Huntington’s disease: the effect of environment on cognitive reserve Although CAG repeat length is a strong predictor of when HD symptoms will begin, environmental and lifestyle factors can contribute to variability in the age of onset. Individuals with similar repeat length and
- [Summaries of 2015 HDSA-Funded HD Human Biology Projects](https://hdsa.org/summaries-of-2015-hdsa-funded-hd-human-biology-projects/) - Ultrasensitve detection of huntingtin protein in cerebrospinal fluid Amber Southwell, Postdoctoral Fellow, University of British Columbia: Dr. Janis Brown Memorial Award Winner Huntingtin, the protein that when mutated causes HD, accumulates within cells and engages in a variety of aberrant interactions. Reducing the levels of this toxic protein should prevent all subsequent pathology and prevent
- [Summaries of 2014 HDSA-Funded HD Human Biology Projects](https://hdsa.org/summaries-of-2014-hdsa-funded-hd-human-biology-projects/) - Development of a Novel Fret-Based HTT Aggregation Assay as a Diagnostic Tool for HD Dr. Alexander Buntru Post-Doctoral Fellow / Max Delbrueck Center for Molecular Medicine / Berlin, Germany Huntington’s disease (HD) is an inherited neurodegenerative disease caused by a mutant huntingtin (HTT)  protein containing an abnormal expansion of the amino acid glutamine. Above a
- [Sweepstakes](https://hdsa.org/how-to-help/sweepstakes/) - Thank you to everyone that participated in the 2018 Summer Bonanza. Congratulations to the winners: Grand Prize: Barbara Cornell - Ticket Number 42501 Second Prize: Janice Gray - Ticket Number 49474 Third Prize: Janet Steinmetz - Ticket Number 52425
- [HDSA Family Photo Album](https://hdsa.org/hdsa-photo-albums/) - 2018 Sacramento Team Hope Walk- 9/8/2018 " order_by="sortorder" order_direction="ASC" returns="included" maximum_entity_count="500"] Inaugural Team Hope Walk Manassas, VA Over $10,000 raised " order_by="sortorder" order_direction="ASC" returns="included" maximum_entity_count="500"] 33rd HDSA Annual Convention- Thursday, June 7, 2018 " order_by="sortorder" order_direction="ASC" returns="included" maximum_entity_count="500"] 33rd HDSA Annual Convention- Friday, June 8, 2018 " order_by="sortorder" order_direction="ASC" returns="included" maximum_entity_count="500"] 33rd
- [HDSA Research Spotlight: Dr. Rachel Harding](https://hdsa.org/hd-research/researcher-spotlight/hdsa-research-spotlight-dr-rachel-harding/) - Meet HDSA’s 2018 Berman-Topper Fellow Dr. Rachel Harding, who is working with Drs. Cheryl Arrowsmith and Ray Truant to understand how huntingtin interacts with DNA repair proteins. She shares how she became involved in HD research, what she does outside the lab, and provides a link to follow along with her work in
- [HDSA Researcher Spotlight: Dr. Madeleine Sharp](https://hdsa.org/hd-research/researcher-spotlight/hdsa-researcher-spotlight-dr-madeleine-sharp/) - Dr. Madeleine Sharp was awarded an HDSA Human Biology Project Fellowship in 2016 and presented her work at HDSA’s 2018 Convention in Los Angeles. Her research focuses on the cognitive and behavioral symptoms of Huntington’s disease. Read about Dr. Sharp’s work, what drew her to the field of HD research, and how she learns from
- [Convention Hotel](https://hdsa.org/convention-hotel/) - When booking your hotel accommodations please note that in order to make a room type selection (2 doubles or 1 King) you must first select the date and then on the second page select your Room preference by clicking on the "Make a Request" Button in section 2. Click here to Book Today
- [HDSA Research Spotlight: Dr. Natalia Pessoa Rocha](https://hdsa.org/hd-research/researcher-spotlight/dr-natalia-pessoa-rocha/) - Meet Dr. Natalia Pessoa Rocha, who is supported by HDSA’s Human Biology Project. Dr. Rocha is using brain imaging techniques to study inflammatory cells in a clinical study at the University of Texas, Houston, in collaboration with an HDSA Center of Excellence. Learn why she loves her work and what she’s finding out through support
- [Research Update Video Postcards](https://hdsa.org/hd-research/research-video-postcards/)
- [2018 HDSA NATIONAL AWARDS NOMINATIONS](https://hdsa.org/about-hdsa/2018-hdsa-national-awards-nominations/) - RECOGNIZING 50 YEARS OF SERVICE TO THE HD COMMUNITY As part of HDSA’s year-long commemoration of 50 years of service to the Huntington’s Disease community, we are pleased to announce our expansion of national awards to include both our HDSA Chapter of the Year and our HDSA Affiliate of the Year. Each year the Huntington’s
- [HDSA Researcher Spotlight: Dr. Rocio Gomez-Pastor](https://hdsa.org/hd-research/researcher-spotlight/hdsa-researcher-spotlight-dr-rocio-gomez-pastor/) - Meet Dr. Rocio Gomez-Pastor, whose HDSA HD Human Biology Project Fellowship helped her transition to university faculty and pursue long-term study of Huntington’s disease. Read about what drew Dr. Gomez-Pastor to the field of HD research, how brain cells assemble an army to fight off disease, and what it’s like to be a part of
- [This Week In Huntington's Disease Research](https://hdsa.org/hd-research/this-week-in-huntingtons-disease-research/) - March 8th, 2018 Interpreting this week’s news: data from the first phase of the Ionis-Roche Trial This week, Ionis Pharmaceuticals shared data from the successful safety trial for their huntingtin-lowering drug. The data confirms what was announced in December 2017: the drug safely lowers mutant huntingtin. No one taking the drug had a serious side
- [Talking with Kids](https://hdsa.org/healthcare-professionals-resources/resources-for-social-workers/talking-with-kids/) - HDSA FAMILY GUIDE SERIES: Talking With Kids — Huntington’s Disease Talking With Kids About HD
- [Cognitive](https://hdsa.org/healthcare-professionals-resources/resources-for-social-workers/cognitive/) - Understanding Behavior in Huntington’s Disease: A Guide for Professionals
- [Home Care/Equipment](https://hdsa.org/healthcare-professionals-resources/resources-for-social-workers/home-careequipment/) - A Caregiver Guide for HD Families
- [Genetic Testing & Guidelines](https://hdsa.org/healthcare-professionals-resources/resources-for-social-workers/genetic-testing-guidelines/) - New Testing Protocol
- [General HD](https://hdsa.org/healthcare-professionals-resources/resources-for-social-workers/general-hd/) - Physicians Guide
- [Donating Appreciated Assets](https://hdsa.org/how-to-help/donating-appreciated-assets/) - Whether purchased for love or investment purposes, publicly traded stocks, real estate, shares in a privately held company, interests in private equity, hedge funds, and fine art or collectibles can prove to be the best items to donate to HDSA to realize maximum tax benefits. Assets that have appreciated in value can be among the
- [Cure HD Now](https://hdsa.org/cure-hd-now/)
- [Her Mother's Daughter](https://hdsa.org/hmdfilm/) - FILM SYNOPSIS Her Mother’s Daughter, a film by Rae Maxwell and produced by HDSA, introduces the world to Kathi O’Donnell and shows the devastating impact that Huntington’s disease (HD) & juvenile Huntington’s disease (JHD) has had on the O’Donnell family. The film is a window into Kathi’s inspiring journey as a caregiver as we
- [Family Story](https://hdsa.org/family-story/) - May is HD Awareness Month, So … Let’s Talk About HD! As part of our HDSA family, you know Huntington’s Disease Awareness Month is special. Until recently, people living with HD regularly suffered in silence, hiding their disease. Together we’ve worked hard to break the silence and erode the stigma and discrimination plaguing families
- [Guthrie Sessions- LIVE](https://hdsa.org/guthrie-sessions-live/) - Click here to purchase your tickets today! Brendan Fletcher Lizzie No Bryan Hansen Join us for the world premiere of Her Mother's Daughter on May 11, 2017- Click here for more information
- [HDSA Center of Excellence UHealth, Miller School of Medicine](https://hdsa.org/hdsacoeuhealth/) - HDSA Center of Excellence UHealth, Miller School of Medicine University of Miami 1150NW 14 Street Room 609 Miami, FL 33136 Director: Carlos Singer, MD, PhD Phone for appts: 305-243-7098 Clinic Coordinator: Angela Russell, PhD, ARNP-BC, FNP, ANP, COHN-c Phone: 305-243-6732 Email: arussell@med.miami.edu Social Worker: George Dumenigo, MSW, LCSW, ACSW Phone: 305-243-1865 Email: gdumenigo@med.miami.edu Website: http://neurology.med.miami.edu/clinical-division/movement-disorders/movement-disorders-team
- [Summaries of 2016 HDSA-Funded HD Human Biology Projects](https://hdsa.org/summaries-of-2016-hdsa-funded-hd-human-biology-projects/) - Striatal-dependent reward processing: A substrate for early behavioral symptoms in Huntington’s disease Madeleine Sharp, Assistant Professor, McGill University, Canada Huntington’s disease affects a part of the brain called the striatum that we know is very important for controlling behavior. The striatum sends signals about the ‘rewards’ experienced in our environments to the rest of the
- [Join the Blizzard](https://hdsa.org/join-the-blizzard/)
- [HDSA Researcher Spotlight:  Dr. Marie Didiot](https://hdsa.org/hd-research/researcher-spotlight/hdsa-researcher-spotlight-dr-marie-didiot/) - The HD Human Biology Project allows HDSA to foster innovative patient-focused research to help the HD community better understand the biology of HD as it occurs in people. There is nothing more exciting or more relevant to HD than scientific observations made in people with the disease”. - George Yohrling, PhD, Senior Director, Mission and
- [HDSA Researcher Spotlight: Dr. Sophie Andrews](https://hdsa.org/hd-research/researcher-spotlight/hdsa-researcher-spotlight-dr-sophie-andrews/) - “The HD Human Biology Project allows HDSA to foster innovative patient-focused research to help the HD community better understand the biology of HD as it occurs in people. There is nothing more exciting or more relevant to HD than scientific observations made in people with the disease”. - George Yohrling, PhD, Senior Director, Mission
- [Huntington's Disease Parity Act](https://hdsa.org/about-hdsa/advocacy/huntingtons-disease-parity-act-2/)
- [HD Workout Tips](https://hdsa.org/hd-workout-tips/) - CLICK HERE TO VIEW MORE HD WORKOUT TIPS & CHECK IN FOR NEW TIPS EACH WEEK! About Shana: Shana Verstegen is the former president of the HDSA Wisconsin chapter (2007-2013) and has served as a Huntington’s Disease Society of America national spokesperson since 2002. She received her bachelor’s degree in kinesiology and exercise science at the University
- [2016 HDSA NATIONAL AWARDS NOMINATION](https://hdsa.org/2016-hdsa-national-awards-nomination/) - Each year the Huntington’s Disease Society of America (HDSA) honors those who have made notable contributions to the HD community with national awards presented at the HDSA Annual Convention. Please take some time to consider the special achievements of any individual(s) in your chapter, Center of Excellence or community who you think is/are deserving of
- [National Convention Scholarship](https://hdsa.org/national-convention-scholarship/) - The intent of this scholarship is to help families and individuals who have never been to an HDSA Convention attend the Society's 2016 Convention. Scholarship Availability The scholarship is open only to first time Convention attendees who are not Maryland residents. Applicants must be 18 years or older as of January 1, 2016. Open to
- [National Youth Alliance Scholarship](https://hdsa.org/national-youth-alliance-scholarship/) - The intent of this scholarship is to help active members of the NYA, attend the HDSA National Convention in Baltimore, MD and NYA Day on Thursday, June 2, 2016. This fund was established to benefit all current members of the NYA and exists thanks to the support and generosity of families at the annual NYA
- [National Convention Scholarship- Maryland Residents Only](https://hdsa.org/national-convention-scholarship-maryland-residents-only/) - The intent of this scholarship is to help families and individuals who live in the state of Maryland to attend the 31st Annual HDSA Convention. Scholarship Availability The scholarship is open to any family member or caregiver who is affected by Huntington’s disease. All scholarship recipients are required to attend the Convention events beginning on
- [Module 1: Overview of Huntington’s disease](https://hdsa.org/ptmodule1/) - For Post Test Assessment please click here
- [Module 10: DISABILITY, ADVOCACY AND CONCLUSIONS](https://hdsa.org/hd101mod10/) - For Post Test Assessment please click here
- [Module 9: AN OVERVIEW OF EXPERIMENTAL THERAPEUTICS IN HUNTINGTON’S DISEASE](https://hdsa.org/hd101mod9/) - For Post Test Assessment please click here
- [Module 8: TEAM BASED CARE FOR HD – FROM THE BEGINNING TO THE END](https://hdsa.org/hd101mod8/) - For Post Test Assessment please click here
- [Module 7: JUVENILE HD](https://hdsa.org/hd101mod7/) - For Post Test Assessment please click here
- [Module 6: MOTOR DYSFUNCTION AND NEUROLOGICAL CARE](https://hdsa.org/hd101mod6/) - For Post Test Assessment click here
- [Module 5: PSYCHIATRIC SYNDROMES IN HUNTINGTON’S DISEASE – ASSESSMENT AND MANAGEMENT](https://hdsa.org/hd101mod5/) - For Post Test Assessment please click here
- [Module 4: COGNITIVE FEATURES OF HD](https://hdsa.org/hd101mod4/) - For Post Test Assessment please click here
- [Module 3: SPECIAL ISSUES- THE PRODROME OF HD](https://hdsa.org/hd101mod3/) - For Post Test Assessment please click here
- [Module 2: GENETIC FACTORS IN HD](https://hdsa.org/hd101mod2/) - For Post Test Assessment please click here
- [Module 1: NATURAL HISTORY OF HD AND INTRODUCTION TO SERIES](https://hdsa.org/hd101mod1/) - For Post Test Assessment please click here
- [2015 Summer Bonanza](https://hdsa.org/how-to-help/sweepstakes/2014-summer-cash-bonanza/) - Thank you to everyone that participated in the 2015 Summer Bonanza. With your help, over $46,000 was raised to support HDSA’s efforts to improve the lives of people affected by HD. 2015 Summer Bonanza Winners: Grand Prize: Kerry Eldred - FL Second Prize: Altie Prater - MI Third Prize: Scott Ketchen - ME
- [Research (NIH & FDA)](https://hdsa.org/about-hdsa/advocacy/research-nih-fda/)
- [Social Security Administration](https://hdsa.org/about-hdsa/advocacy/social-security-administration/)
- [Affordable Care Act](https://hdsa.org/about-hdsa/advocacy/affordable-care-act/)
- [Genetic Information Nondiscrimination Act (GINA)](https://hdsa.org/about-hdsa/advocacy/genetic-information-nondiscrimination-act-gina/)
- [Resource and Action Center](https://hdsa.org/resource-and-action-center/)
- [Huntington's Disease Parity Act](https://hdsa.org/about-hdsa/advocacy/huntingtons-disease-parity-act/) - Intro or text here?
- [test advocacy](https://hdsa.org/about-hdsa/advocacy/test-advocacy/)
- [2015 Drive Toward a Cure Sweepstakes](https://hdsa.org/how-to-help/sweepstakes/2015-drive-toward-a-cure-sweepstakes/) - Thank you to everyone that participated in the 2015 Drive Toward a cure Sweepstakes. With your help, over $147,000 was raised to support HDSA’s efforts to improve the lives of people affected by HD. 2015 Drive Toward a Cure Sweepstake’s Winners: Grand Prize: Renee Grandy – FL Second Prize: Jennifer Leyton – NY Third
- [2015 National Award Recipients](https://hdsa.org/2015-national-award-recipients/) - Giving a Voice to HD Award Youth Award Patient and Family Services Award Exemplary Fund Raising Award HDSA Research Award Marjorie Guthrie Award HDSA Person of the Year Award
- [2015 Chapter & Affiliate Award Recipients](https://hdsa.org/2015-chapter-affiliate-award-recipients/) - Outstanding Family Service, Outreach and Education Presented to the: Kentucky Chapter Outstanding Advocacy Presented to the: Albany/WMass/ Vermont Affiliate Outstanding Fundraising Event Presented to the: Northeast Ohio Chapter Affiliate of the Year Presented to the: Albany/WMass/ Vermont Affiliate Chapter of the Year Presented to the: San Diego Chapter Best New Fundraising Event Presented
- [HDSA Annual Convention Room 2](https://hdsa.org/hdsa-annual-convention-room-2/) - Live streaming video by UstreamOr view on Ustream-http://www.ustream.tv/channel/hdsa2015rm2 Schedule of Workshops Broadcast- (All times are listed in CST) Friday, June 26, 2015 11:00AM- 12:15PM New to HD/HD 101 -Michelle Fox, MS, LCGC 2:00pm- 3:15PM All Attendees - How to talk with Law Enforcement about HD -Lauren Holder 3:45PM – 5:00PM HDSA Research- An Introductory
- [HDSA Annual Convention Room 1](https://hdsa.org/live-streaming/) - Live streaming video by Ustream Or view on Ustream- http://www.ustream.tv/channel/hdsa2015rm1 Schedule of Workshops Broadcast- (All times are listed in CST) Friday, June 26, 2015 9am- 10:30am Opening Ceremony 11am- 12:15 PM Behavior Issues - Denial and Unawareness in HD - Arik Johnson, PsyD 2:00pm- 3:15pm Behavior Issues - Recognizing Apathy and Depression -Peggy Nopoulos, MD
- [Living with HD](https://hdsa.org/living-with-hd/)
- [Search Results](https://hdsa.org/search/)
- [API](https://hdsa.org/api/) - Do not remove this page. This page is used for API calls.
- [Events](https://hdsa.org/events/)
- [About Us](https://hdsa.org/about-hdsa/)
- [Research Reports Library](https://hdsa.org/hd-research/research-reports-library/)
- [Research News & Reports](https://hdsa.org/hd-research/research-news-reports/)
- [GINA](https://hdsa.org/living-with-hd/gina/)
- [Resources](https://hdsa.org/find-help/living-well-with-hd/nutrition/resources/)
- [Meet Bike Team](https://hdsa.org/771-2/)
- [Faces of HD](https://hdsa.org/living-with-hd/faces-of-hd/)
- [Caregiver's Corner Webinars](https://hdsa.org/living-with-hd/caregivers-corner-webinars/)
- [Locate resources](https://hdsa.org/about-hdsa/locate-resources/)
- [Face of HD](https://hdsa.org/face-of-hd/) - test
- [How Your Donation is Utilized](https://hdsa.org/how-to-help/how-your-donation-is-utilized/)
- [Other Ways to Give](https://hdsa.org/how-to-help/other-ways-to-give/)
- [Events Calendar](https://hdsa.org/how-to-help/events-calendar/)
- [Online Donation](https://hdsa.org/how-to-help/online-donation/)
- [How to Help](https://hdsa.org/how-to-help/)

## Caregivers

- [Applying for Disability](https://hdsa.org/living-with-hd/caregivers-corner-webinars/applying-for-disability/)
- [Estate Planning & HD](https://hdsa.org/living-with-hd/caregivers-corner-webinars/estate-planning-hd/) - h
- [Safety in the Home](https://hdsa.org/living-with-hd/caregivers-corner-webinars/safety-in-the-home/)
- [HD in The Family: Implications, Challenges and Lifelines](https://hdsa.org/living-with-hd/caregivers-corner-webinars/hd-in-the-family-implications-challenges-and-lifelines/)
- [Talking With Kids About HD](https://hdsa.org/living-with-hd/caregivers-corner-webinars/talking-with-kids-about-hd/)
- [Disability Strategies 3 Denials & Appeals](https://hdsa.org/living-with-hd/caregivers-corner-webinars/disability-strategies-iii-denials-appeals/)
- [Driving Cessation & HD](https://hdsa.org/living-with-hd/caregivers-corner-webinars/driving-cessation-hd/)
- [Simplifying Life to Accommodate Cognitive Changes](https://hdsa.org/living-with-hd/caregivers-corner-webinars/simplifying-life-to-aaccommodate-cognitive-changes/)
- [LE Toolkit for Law Enforcement](https://hdsa.org/living-with-hd/caregivers-corner-webinars/hdsa-law-enforcement-toolkit-2-working-with-law-enforcement/)
- [Law Enforcement Toolkit: Caregivers](https://hdsa.org/living-with-hd/caregivers-corner-webinars/law-enforcement-toolkit-caregivers/)
- [Crisis Situations & De-escalation Strategies](https://hdsa.org/living-with-hd/caregivers-corner-webinars/crisis-situations-de-escalation-strategies/)
- [Care for the Caregiver: A Social Work Perspective](https://hdsa.org/living-with-hd/caregivers-corner-webinars/care-for-the-caregiver-a-social-work-perspective/)
- [Palliative Care & End of Life Issues](https://hdsa.org/living-with-hd/caregivers-corner-webinars/palliative-care-end-of-life-issues/)
- [Caregiver Interventions](https://hdsa.org/living-with-hd/caregivers-corner-webinars/caregiver-interventions/)
- [Living Positively](https://hdsa.org/living-with-hd/caregivers-corner-webinars/living-positively/)
- [Diagnosing JHD](https://hdsa.org/living-with-hd/caregivers-corner-webinars/diagnosing-jhd/)
- [HDSA Advocacy](https://hdsa.org/living-with-hd/caregivers-corner-webinars/hdsa-advocacy/)
- [Team Management of HD](https://hdsa.org/living-with-hd/caregivers-corner-webinars/team-management-of-hd/)
- [PT/OT & HD](https://hdsa.org/living-with-hd/caregivers-corner-webinars/ptot-hd/)
- [Financial Planning & HD](https://hdsa.org/living-with-hd/caregivers-corner-webinars/financial-planning-hd/)
- [Applying for Disability Benefits for HD: The SSA Perspective](https://hdsa.org/living-with-hd/caregivers-corner-webinars/applying-for-disability-benefits-for-hd-the-ssa-perspective/)
- [Disability Strategies 2](https://hdsa.org/living-with-hd/caregivers-corner-webinars/disability-strategies-2/)
- [Planning for Incapacity](https://hdsa.org/living-with-hd/caregivers-corner-webinars/planning-for-incapacity/)
- [Building Your Local Care Team](https://hdsa.org/living-with-hd/caregivers-corner-webinars/building-your-local-care-team/)
- [Long Term Care & HD](https://hdsa.org/living-with-hd/caregivers-corner-webinars/long-term-care-hd/)
- [Social Work Perspective On Advance Planning](https://hdsa.org/living-with-hd/caregivers-corner-webinars/social-work-perspective-on-advance-planning/)
- [Managing Psychiatric Symptoms](https://hdsa.org/living-with-hd/caregivers-corner-webinars/managing-psychiatric-symptoms/)
- [Cognitive Strategies Part 2: A Social Work Perspective](https://hdsa.org/living-with-hd/caregivers-corner-webinars/cognitive-strategies-part-2-a-social-work-perspective/)
- [Gait & Balance](https://hdsa.org/living-with-hd/caregivers-corner-webinars/gait-balance/)
- [Facilitating Access & Communication Through the Use of Assistive Technology](https://hdsa.org/living-with-hd/caregivers-corner-webinars/facilitating-access-communication-through-the-use-of-assistive-technology/)
- [HD & Nutrition](https://hdsa.org/living-with-hd/caregivers-corner-webinars/hd-nutrition/)
- [Spirituality & HD](https://hdsa.org/living-with-hd/caregivers-corner-webinars/spirituality-hd/)

## HD Research Webinars

- [New Insights on Huntington's Disease Age of Onset From Genetic Studies of HD Families](https://hdsa.org/hd-research/hd-research-webinar-series/new-insights-on-huntingtons-disease-age-of-onset-from-genetic-studies-of-hd-families/)
- [DNA Repair in Huntington's Disease](https://hdsa.org/hd-research/hd-research-webinar-series/dna-repair-in-huntingtons-disease/)
- [RNAi-based huntingtin lowering in the central nervous system: a new potential HD therapeutic](https://hdsa.org/hd-research/hd-research-webinar-series/rnai-based-huntingtin-lowering-in-the-central-nervous-system-a-new-potential-hd-therapeutic/)
- [2018 Year in Review](https://hdsa.org/hd-research/hd-research-webinar-series/2018-year-in-review/)
- [Update on Huntington's Program and Clinical Trials from Roche/Genentech](https://hdsa.org/hd-research/hd-research-webinar-series/update-on-huntingtons-program-and-clinical-trials-from-roche-genentech/)
- [Exercise for the brain and body  the benefits of physical activity in Huntingtons](https://hdsa.org/hd-research/hd-research-webinar-series/exercise-for-the-brain-and-body-the-benefits-of-physical-activity-in-huntingtons/)
- [Neural Stem Cells as a Therapeutic Candidate for Huntington's Disease](https://hdsa.org/hd-research/hd-research-webinar-series/neural-stem-cells-as-a-therapeutic-candidate-for-huntingtons-disease/)
- [How can sheep help us develop huntingtin lowering therapies?](https://hdsa.org/hd-research/hd-research-webinar-series/how-can-sheep-help-us-develop-huntingtin-lowering-therapies/)
- [2014: The Year in Review for HD Research](https://hdsa.org/hd-research/hd-research-webinar-series/2014-the-year-in-review-for-hd-research/)
- [Clinical Trials in Premanifest HD: Review of PREQUEL Results and Prospects for the Future](https://hdsa.org/hd-research/hd-research-webinar-series/clinical-trials-in-premanifest-hd-review-of-prequel-results-and-prospects-for-the-future/)
- [Year in Review](https://hdsa.org/hd-research/hd-research-webinar-series/year-in-review/)
- [“FIRST-HD: A clinical Trial to test effectiveness of novel drug for reducing HD chorea”](https://hdsa.org/hd-research/hd-research-webinar-series/first-hd-a-clinical-trial-to-test-effectiveness-of-novel-drug-for-reducing-hd-chorea/)
- [PDE10 Imaging in HD Patients](https://hdsa.org/hd-research/hd-research-webinar-series/pde10-imaging-in-hd-patients/)
- [Kids-HD: Brain Imaging Research Study](https://hdsa.org/hd-research/hd-research-webinar-series/kids-hd-brain-imaging-research-study/)
- [Enroll-HD](https://hdsa.org/hd-research/hd-research-webinar-series/enroll-hd/)
- [Huntingtin ASOs](https://hdsa.org/hd-research/hd-research-webinar-series/huntingtin-asos/)
- [Sleep/Circadian Dysfunction in HD](https://hdsa.org/hd-research/hd-research-webinar-series/sleepcircadian-dysfunction-in-hd/)
- [Stem Cells in HD Research and Therapeutics](https://hdsa.org/hd-research/hd-research-webinar-series/stem-cells-in-hd-research-and-therapeutics/)
- [Histone deacetylase (HDAC) inhibitors: assessing their potential for clinical use.](https://hdsa.org/hd-research/hd-research-webinar-series/histone-deacetylase-hdac-inhibitors-assessing-their-potential-for-clinical-use/)
- [Suppression of somatic expansion of CAG tract delays onset of disease in mouse model of HD](https://hdsa.org/hd-research/hd-research-webinar-series/hdtrialfinder-2/)
- [The spread of mutant huntingtin protein from cell to cell and its implications for transplant therapies for Huntington's disease](https://hdsa.org/hd-research/hd-research-webinar-series/hdtrialfinder/)
- [Genetic variation in huntingtin promoter as a bidirectional genetic modifier of Huntington’s disease](https://hdsa.org/hd-research/hd-research-webinar-series/genetic-variation-in-huntingtin-promoter-as-a-bidirectional-genetic-modifier-of-huntingtons-disease/)
- [PF-02545920: An Investigational Pfizer Compound for the Treatment of Huntington's Disease](https://hdsa.org/hd-research/hd-research-webinar-series/pfizertrial/)
- [At Home Monitoring of Sleep/Wake Cycles in Huntington’s Disease Patients](https://hdsa.org/hd-research/hd-research-webinar-series/at-home-monitoring-of-sleepwake-cycles-in-huntingtons-disease-patients/)
- [2015: The Year in Review for HD Research](https://hdsa.org/hd-research/hd-research-webinar-series/2015-the-year-in-review-for-hd-research/)
- [The role of complement and synaptic loss in driving disease progression in Huntington’s disease](https://hdsa.org/hd-research/hd-research-webinar-series/the-role-of-complement-and-synaptic-loss-in-driving-disease-progression-in-huntingtons-disease/)
- [PPAR delta is decreased in HD and can be targeted therapeutically](https://hdsa.org/hd-research/hd-research-webinar-series/ppar-delta-is-decreased-in-hd-and-can-be-targeted-therapeutically/)
- [The FDA and Patient Engagement – What’s Next for the HD Community](https://hdsa.org/hd-research/hd-research-webinar-series/the-fda-and-patient-engagement-whats-next-for-the-hd-community/)
- [Is HD More Prevalent Than Previously Thought?](https://hdsa.org/hd-research/hd-research-webinar-series/is-hd-more-prevalent-than-previously-thought/)
- [Intrabodies: A New Drug Class and Potential New Drug (INT41) for Huntington's Disease](https://hdsa.org/hd-research/hd-research-webinar-series/intrabodies-a-new-drug-class-and-potential-new-drug-int41-for-huntingtons-disease/)
- [PRIDE-HD Clinical Trial Results](https://hdsa.org/hd-research/hd-research-webinar-series/pride-hd-clinical-trial-results/)
- [2016 Year in Review](https://hdsa.org/hd-research/hd-research-webinar-series/2016-year-in-review/)
- [Potential new drug target identified that could correct protein misfolding in Huntington’s disease](https://hdsa.org/hd-research/hd-research-webinar-series/potential-new-drug-target-identified-that-could-correct-protein-misfolding-in-huntingtons-disease/)
- [Interim Results from the Vaccinex SIGNAL Trial](https://hdsa.org/hd-research/hd-research-webinar-series/interim-results-from-the-vaccinex-signal-trial/)
- [What's the Deal with Neurofilament:  A Blood Test that Predicts Huntington's Disease Progression?](https://hdsa.org/hd-research/hd-research-webinar-series/whats-the-deal-with-neurofilament-a-blood-test-that-predicts-huntingtons-disease-progression/)
- [The SIGNAL Phase 2 Trial Clinical Development of VX15 Anti Semaphorin 4D Antibody as a potential treatment for HD](https://hdsa.org/hd-research/hd-research-webinar-series/the-signal-phase-2-trial-clinical-development-of-vx15-anti-semaphorin-4d-antibody/)
- [2017 Huntington's Disease Research Year in Review Webinar](https://hdsa.org/hd-research/hd-research-webinar-series/2017-huntingtons-disease-research-year-in-review-webinar/)
- [Selective Targeting of Mutant Huntingtin (mHTT) presented by Wave Life Sciences.](https://hdsa.org/hd-research/hd-research-webinar-series/selective-targeting-of-mutant-huntingtin-mhtt-presented-by-wave-life-sciences/)
- [LEGATO-HD: A Clinical Study in Subjects with Huntington's Disease to Assess the Efficacy and Safety of Laquinimod](https://hdsa.org/hd-research/hd-research-webinar-series/legato-hd-a-clinical-study-in-subjects-with-huntingtons-disease-to-assess-the-efficacy-and-safety-of-laquinimod/)
- [Stem Cell Approaches for HD](https://hdsa.org/hd-research/hd-research-webinar-series/stem-cell-approaches-for-hd/)
- [The spread of mutant huntingtin protein from cell to cell and its implications for transplant therapies for Huntington's disease](https://hdsa.org/hd-research/hd-research-webinar-series/3328/)
- [Allele-specific silencing of mutant huntingtin gene with ASOs](https://hdsa.org/hd-research/hd-research-webinar-series/allele-specific-silencing-of-mutant-huntingtin-gene-with-asos/)
- [Mind the Gap: Thinking Big to Bridge Drug Development in Huntington’s Disease](https://hdsa.org/hd-research/hd-research-webinar-series/mind-the-gap-thinking-big-to-bridge-drug-development-in-huntingtons-disease/)
- [Silencing Mutant Huntingtin as a Therapy for HD](https://hdsa.org/hd-research/hd-research-webinar-series/silencing-mutant-huntingtin-as-a-therapy-for-hd/)
- [Using mouse models to gain therapeutic insights for Huntington's disease](https://hdsa.org/hd-research/hd-research-webinar-series/using-mouse-models-to-gain-therapeutic-insights-for-huntingtons-disease/)
- [Pride- HD: a dose finding, safety and efficacy study of pridopidine in HD patients](https://hdsa.org/hd-research/hd-research-webinar-series/pride-hd-a-dose-finding-safety-and-efficacy-study-of-pridopidine-in-hd-patients/)

## HD Research Surveys

- [How Huntington’s Disease Affects Women’s Mental Health and Daily Life](https://hdsa.org/hd-research/a-leader-in-global-hd-research/how-huntingtons-disease-affects-womens-mental-health-and-daily-life/) - Description: This voluntary study explores emotional well-being in women with and without Huntington’s disease. Participants will complete short mental health questionnaires, helping researchers understand differences in mental health experiences and the lived impact of HD. Eligibility: over the age of 18 and identify as a woman. Click here to get started: https://forms.gle/7a573Gn7CbJ8S61P6
- [A Qualitative Study of Caregivers' Perspectives on Huntington's Disease Patients' Experiences](https://hdsa.org/hd-research/a-leader-in-global-hd-research/a-qualitative-study-of-caregivers-perspectives-on-huntingtons-disease-patients-experiences/) - We are in search of Huntington’s disease caregivers who are willing to share about their experiences for a Kean University thesis project. Project Purpose: This research study will investigate different types of discrimination that individuals with HD face in their lives as seen through the lens of their caregivers. To find out if you
- [PATH Research Study](https://hdsa.org/hd-research/a-leader-in-global-hd-research/path-research-study/) - My name is Caroline Shagena, and I am a genetic counseling student at Emory University in Atlanta, GA. For my research project, I am interested in identifying unmet needs for asymptomatic adults with Ataxia, Huntington’s Disease, or ALS and/or FTD. We hope this research helps us better understand how to facilitate care for this population in
- [Apathy in HD Study](https://hdsa.org/hd-research/a-leader-in-global-hd-research/apathy-in-hd-study/) - Researchers from Monash University in Australia are seeking people with the HD gene as well as their partners or carers to complete a short, 15-minute online survey about their health, mood and activities to help us better understand how apathy (a loss of motivation) occurs across the lifespan of people with the Huntingtin gene. This
- [Survey of the Huntington's Disease Community's Views on Biomarkers and Preventive Drugs](https://hdsa.org/hd-research/a-leader-in-global-hd-research/survey-of-the-huntingtons-disease-communitys-views-on-biomarkers-and-preventive-drugs/) - You are invited to participate in a research study on preventive treatments in Huntington’s Disease. The purpose of the study is to understand your preference for future treatments that may delay or prevent Huntington’s Disease (HD) among individuals at-risk of developing HD. In addition, we would like to learn about the side effects, you would be willing to tolerate for the benefit. If you agree to participate, you will be asked to complete a brief survey and answer a series of questions to determine which treatments you prefer and the side effects you would be willing to tolerate to gain the benefit of preventing or delaying the progression of HD.
- [Psychological well-being among those who are at risk from, or who have tested positive for Huntington’s Disease (HD)HD well-being](https://hdsa.org/hd-research/a-leader-in-global-hd-research/hd-well-being/) - Researchers from the University of Leicester in the UK, alongside HD clinicians, are trying to find out about psychological well-being among those who have tested positive for HD (whether symptomatic or not), and those at-risk of HD. The aim of this research is to help understand how people living with HD might best be supported
- [Huntington Disease Survey](https://hdsa.org/hd-research/a-leader-in-global-hd-research/huntington-disease-survey/) - We invite you to participate in a research study conducted by investigators at The University of Pennsylvania. The purpose of this study is to evaluate the knowledge and perception of individuals towards gene therapy for Huntington’s Disease (HD).This survey is meant to obtain information about an individual’s beliefs and attitudes towards gene therapy for HD.
- [Juvenile HD Survey](https://hdsa.org/hd-research/a-leader-in-global-hd-research/juvenile-hd-survey/) - Investigators at the University of Iowa are conducting a study about symptoms of Juvenile Huntington’s Disease (JHD) that may occur frequently, but are poorly recognized by health care professionals. We are inviting adults who have been the primary caretaker for someone who has been diagnosed with JHD to complete an online survey to describe

## Faces of HD

- [Meet Joe](https://hdsa.org/living-with-hd/faces-of-hd/meet-joe/) - Joe Smith - Major League Pitcher After watching Huntington's disease (HD), take my grandma's independence and quality of life, and now seeing my mom affected by many of the same symptoms, I feel a strong sense of urgency to do my part to fight this disease. My mother, Lee Smith, is 56 years old. She
- [Meet EJ](https://hdsa.org/living-with-hd/faces-of-hd/meet-ej/) - My name is E.J. Garner; my former husband (Doug); son (Scott) and grandson (Matthew) suffered from Huntington’s disease (HD) and ultimately passed away from it. Most people struggle to find purpose in their life. Well, crazy as it may seem, having HD in my family has given me purpose to my life. My purpose
- [Meet Janis](https://hdsa.org/living-with-hd/faces-of-hd/meet-janis/) - Janis Brown was born in Dallas, Texas on April 13, 1955 to William J. (Bill) and Patsy Carter Brown. She was to be their only child. She attended Dallas schools, and graduated from Justin F. Kimball High School in 1973, valedictorian. While in high school she discovered her love of chemistry and the chemistry lab.
- [Meet Ron](https://hdsa.org/living-with-hd/faces-of-hd/meet-ron/) - After a few years my family and I began observing some abnormalities with my wife Linda. Her and I had several appointments with her doctor and we then decided to investigate her biological father who she never knew. We found out that he had Huntington’s disease and already died from the disease. She was then
- [Meet Lisa](https://hdsa.org/living-with-hd/faces-of-hd/meet-lisa-2/) - My first year out of college, I worked as a lab technician in a neurobiology lab at Mass General East researching drug addiction. I was 22 years old in February 1993 when the scientists down the hall began celebrating. They had just isolated the genetic mutation that causes HD. I remember getting very still, the
- [Meet </br> Bike for the Cure](https://hdsa.org/living-with-hd/faces-of-hd/meet-bike-for-the-cure/) - For those who may be unfamiliar with Bike for the Cure, let me digress. In 1997, when the Internet was still in its infancy, I became aware of Huntington's Disease through meeting Carmen Leal, author of Faces of Huntington's and Portraits of Huntington's, via the Christian Writer's Group list. In June 1998, at Carmen's invitation, I attended the 13th
- [Meet Chrisy](https://hdsa.org/living-with-hd/faces-of-hd/meet-chrisy/) - My name is Chrissy Scruggs. HD has been a part of my entire life. My two aunts, Gwen and Sue Guthrie, daughters of Woody Guthrie, suffered the same fate he did. Since this was during the early stages of the medical field's acknowledgment of the disease, they were treated very poorly. My grandmother suffered for
- [Meet Dylan](https://hdsa.org/living-with-hd/faces-of-hd/meet-dylan/) - My name is Dylan, I'm 2 years old, and at risk for Huntington's disease. My Daddy is in the early stages of the disease. He has memory problems, trouble multitasking, and sometimes he gets angry. But he loves me very much and I love him. He's also a professional guitar player and we like to
- [Meet Amy](https://hdsa.org/living-with-hd/faces-of-hd/meet-amy/) - Life is a series of steps. One of the hardest moments of my life came in the fall of 2008, when my husband Tim sat me down and told me the impossible news: I was showing signs of Huntington's disease. My brother and I had a 50/50 chance of inheriting HD because our father had the
- [Meet Daniel](https://hdsa.org/living-with-hd/faces-of-hd/meet-daniel/) - My name is Daniel Medina and my 15-year-old stepbrother is at-risk for Huntington’s disease. I was unaware of the disease until my stepbrother, mother and I went to visit my stepbrother’s grandpa. We witnessed a man in his 60s who was shaking uncontrollably, emaciated and bed ridden. After the meeting, I researched Huntington’s disease and
- [Meet<br />Dave & Susie](https://hdsa.org/living-with-hd/faces-of-hd/meet-dave-susie/) - I’m Dave, she’s Susie. Together we’re known in the HD community just as “Dave & Susie,” no last name. We’re not sure what happened to our last name. We are sure of our purpose: to help other families cope with a disease that knows no cure or treatment. We met on the Hunt-Dis on-line support
- [Meet Deb](https://hdsa.org/living-with-hd/faces-of-hd/meet-deb/) - My name is Deb Parton. I met my husband (Bruce) in 1999. He told me at that time about his daughter (April) that she was tested at the age of 18 for HD and told me about the disease. April was 22 when I first met her. HD has now been a part of my
- [Meet Desirae](https://hdsa.org/living-with-hd/faces-of-hd/meet-desirae/) - My name is Desirae I have a rare degenerative disease called Huntington’s disease. I tested positive at UCLA in 1995. My dad was diagnosed with HD in 1991. I lost my father at age 48 to HD on February 7th, 2007. My mom took care of him every day for 16 years. At the end
- [Meet Emily](https://hdsa.org/living-with-hd/faces-of-hd/meet-emily/) - Emily was a happy energetic young girl who enjoyed reading a good book over and over, did well in school, liked salsa dancing, hip hop, soccer, basketball, fishing, camping, movies with popcorn and getting dressed up. With a smile that would light up the room and a personality to match, she chose her friends not
- [Meet<br />Erika & Melissa](https://hdsa.org/living-with-hd/faces-of-hd/meet-erika-melissa/) - Many of our stories are similar, but they all seem to have a unique twist. My symptomatic father took his life when I was 11 years old. Realizing how precious family is, my sister and I became very close. Eight years later we found out that she has the gene expansion and I don't. I
- [Meet Eva](https://hdsa.org/living-with-hd/faces-of-hd/meet-eva/) - Eva Weissman died on March 2, 2013, half a year short of her 90th birthday, which she had hoped to celebrate with her family and many friends. She was born Eva Gertrud Broessler, in Vienna, Austria on September 27, 1923. Historical forces, mainly in the form of anti-Semitism, made her a woman of the world.
- [Meet Evelyn](https://hdsa.org/living-with-hd/faces-of-hd/meet-evelyn/) - My name is Evelynn Garcia and I am one of the newest board members of HDSA. I have a niece and nephew with the juvenile form of HD, and I am very passionate to work towards a cure. My niece Jasmine just recently turned 14 years old and my nephew Christopher is 12. Jasmine was
- [Meet Our<br />Marathon<br />Team](https://hdsa.org/living-with-hd/faces-of-hd/meet-the-hdsa-marathon-team/) - On behalf of the Huntington's disease community we want to thank our NYC Marathon runners for all of their hard work in raising awareness and funds to support HDSA's mission. Many thanks to all who participated! Monica Busovsky- Garcia, IN Lindsey Christian, MN Lynn Diaz, NJ Jeff Dusek, MA Delia Miller, NY Stephanie Kidney, NY
- [Meet Henry](https://hdsa.org/living-with-hd/faces-of-hd/meet-henry/) - Allow me to introduce Henry, my loving husband of 34 years and an incredible father of five. He was diagnosed positive, with a 44 count, two years ago but has been symptomatic for 4 years. Before he was officially diagnosed with HD, he was misdiagnosed with depression, restless leg syndrome, turrets and everything in between.
- [Meet Hope](https://hdsa.org/living-with-hd/faces-of-hd/meet-hope/) - When I started working for the HDSA DC Metro Chapter, I thought it was a great opportunity, but I could never have imagined that I would be changed and impacted by one community the way this one has. I have never met a community of people who are so strong and come together in the
- [Meet Jackie](https://hdsa.org/living-with-hd/faces-of-hd/meet-jackie/) - Nearly 30 years ago, I was working in the newsroom of the Boston Globe as a sportswriter when I fielded a phone call from a woman named Mae Long. She was the executive director of the New England chapter of the Huntington’s Disease Society of America and she wanted to know if I would shoot
- [Meet Jennifer](https://hdsa.org/living-with-hd/faces-of-hd/meet-jennifer/) - Huntington's disease has been a part of my life for 14 years now, and will remain so for the rest of it. My husband Ronny was diagnosed in 2000; our daughters were only three and one year old at the time. Our youngest daughter had slight developmental delays that appeared around the age of 4
- [Meet Jessica](https://hdsa.org/living-with-hd/faces-of-hd/meet-jessica/) - Like many people in the HD community, Huntington’s disease has been a part of my life for a very long time. I am 29 years old, and my mother was diagnosed with the disease when I was a child. She spent most of my childhood in a nursing home until she passed in 2002. I
- [Meet Jim](https://hdsa.org/living-with-hd/faces-of-hd/meet-jim/) - Behind my outward appearance and my inability to say more than a few words is the fact that I have Huntingtons disease. The disease can do many strange things and I want you to know who I am. I completed a degree in recreation management at Berkeley and a Master’s degree in Forestry at the
- [Meet<br />Katlin & Tina](https://hdsa.org/living-with-hd/faces-of-hd/meet-katlin-tina/) - My beautiful daughter, Kaitlin, was diagnosed with Huntington's disease (HD) at age of 17 - 5 years ago. Around 14 or 15 we s uspected something was wrong but didn't realize HD affected young people - I always thought it was something that happened later on. After scheduling and cancelling several appointments with a genetic counselor we finally took her to be
- [Meet Bob](https://hdsa.org/living-with-hd/faces-of-hd/meet-bob/) - I am Bob Peake. I am married and have one son who I admire so much. My family supports me as I navigate living with HD. Yes, I live with Huntington’s every day. The key word is LIVE — I do my best to live this one life I have. I am a computer programmer
- [Meet Carl](https://hdsa.org/living-with-hd/faces-of-hd/meet-carl/) - I was diagnosed with HD in 1996. Although my mother was never diagnosed, it became apparent that she had it. She died in 1989 in a nursing home. My father hid the disease and never really acknowledged that she had it in public, yet would also yell at her because she had it and ridicule
- [Meet Mi Mi](https://hdsa.org/living-with-hd/faces-of-hd/meet-mi-mi/) - Our Miracle Girl Mi Mi is twelve years old, born August 17, 2000, the fourth child of five and resides in Dallas, TX. Mi Mi, born full term, had no health issues at birth and was a typical child, talking, running and playing with other children until age four and a half. She soon started
- [Meet Katie](https://hdsa.org/living-with-hd/faces-of-hd/meet-katie/) - I am a face of HD. My name is Katie. I am almost 32 and I live in Austin, Texas with my sweet husband and our four amazing kids, all of whom, are at risk for developing Huntington's Disease. My story with HD really began when I was in high school. I have recently begun
- [Meet Kaycee](https://hdsa.org/living-with-hd/faces-of-hd/meet-kaycee/) - At 25 years old you expect to be making decisions about your career path, where you want to live, planning trips to Europe, dating, and going shopping with friends. None of those things involve being faced with the struggles of having your mom in a nursing home battling severe stage of Huntington’s disease and while
- [Meet Kirsten](https://hdsa.org/living-with-hd/faces-of-hd/meet-kirsten/) - Hello, my name is Kirsten Waldschmidt and my family learned about Huntington’s disease in 1993 when my grandfather was diagnosed. He passed away because of this disease in 1996. Before I committed myself to a serious relationship I wanted to know if I carried the gene. In February, before my 30th birthday, I began the
- [Meet Kristen](https://hdsa.org/living-with-hd/faces-of-hd/meet-kristen/) - Huntington’s disease dominated my childhood. In 2003, when I was nine years old, my mum was officially diagnosed, but my family believes she exhibited signs as early as 1999. Her disease progression was swift and brutal. Only two years after diagnosis, in 2005, she moved to a nursing home because her emotional mood swings, outbursts,
- [Meet Lacy](https://hdsa.org/living-with-hd/faces-of-hd/meet-lacy/) - We adopted our son, Lacy, when he was three; he is now 34 years old. All of his life, Lacy has struggled to overcome challenges. He is autistic and developmentally delayed. For the past 15 years, Lacy has lived independently in a group home. Because of a family history of HD, we knew to ask
- [Meet Lauren](https://hdsa.org/living-with-hd/faces-of-hd/meet-lauren/) - At the age of 20, a positive test result for Huntington's Disease can be life-altering. And it was for me. But it changed my life in a way I don't regret. I had two choices: I could let the result of my predictive test bring me down for the rest of my life, or I
- [Meet<br />Lindsay & Thomas](https://hdsa.org/living-with-hd/faces-of-hd/meet-lindsay-thomas/) - When my dad, Thomas Cart, was in his early 30s my grandfather took him to the Mayo Clinic after he began to develop some strange tremors. Since our family had no known history of HD, he was diagnosed with “chorea of an unknown origin” and his mysterious diagnosis stood until the mid 90s. The disease
- [Meet Lisa](https://hdsa.org/living-with-hd/faces-of-hd/meet-lisa/) - Lisa Annette Eletto was a loving mother, wife, teacher, friend, and role model. She was a devout Christian who maintained her faith through both good times and bad. She will be forever remembered for her selflessness, devotion to helping others, and love for her family. Lisa was born in Los Angeles, California to Frank and
- [Meet<br />Mackenzie & Jess](https://hdsa.org/living-with-hd/faces-of-hd/meet-mackenzie-jess/) - I remember the very gray week in November of 2008 where I received two of the most troublesome diagnoses a person could be handed: stage three breast cancer and a CAG of 42. My sister Jesse had found out a week earlier that her CAG was 42. That day she made me two cards. One
- [Meet<br />Marcy & Jim](https://hdsa.org/living-with-hd/faces-of-hd/meet-marcy-jim/) - Drs. Marcy MacDonald and Jim Gusella have been leaders, mentors and collaborators in the quest to find therapies for Huntington's disease for 30 years. Dr. Marcy MacDonald obtained her PhD in Medical Biophysics from the University of Toronto in 1980 and is currently a Professor of Neurology at the Harvard Medical School and a geneticist
- [Meet Michelle](https://hdsa.org/living-with-hd/faces-of-hd/meet-michelle/) - My name is Michelle Gray. I was raised in a small rural town in west Alabama, where I spent my time playing outside and observing the animals in my environment. My curiosity about the different animals and their development led me to a graduate program at The Ohio State University where I studied the development
- [Meet Rosalie](https://hdsa.org/living-with-hd/faces-of-hd/meet-rosalie/) - Meet Rosalie Boers — my Aunt Rose. As a little girl, I was always hanging out with my cousins and Aunt Rose. She didn't work outside the home so it was the place to be for me and all the neighborhood kids. Summers were spent at our family cottage in bathing suits from morning to
- [Meet Sandra](https://hdsa.org/living-with-hd/faces-of-hd/meet-sandra/) - I have been working with individuals and families affected by Huntington’s disease since June 2000 when I became the medical director of the HDSA Center of Excellence at The Ohio State University. You may wonder why there are pictures of me on this page with a basketball. This is not because I am athletic or
- [Meet<br />Shana & Debbie](https://hdsa.org/living-with-hd/faces-of-hd/meet-shana-debbie/) - My parents just got the news from the doctors at Mayo Clinic. I remember that evening in 1985 clearly. They were devastated. In the hotel room my dad explained to me what Huntington’s disease was, and what would happen to my mother over the next few years. He also took a penny and flipped it.
- [Meet Stevie](https://hdsa.org/living-with-hd/faces-of-hd/meet-stevie/) - My son Stephen, we call him Stevie, was born on a very special day — Thanksgiving 1975 He was such an adorable baby. I remember thinking that he was very alert for a newborn. His eyes were wide open. My Stephen was such a good baby! He didn't cry much, he slept all night, and
- [Meet Sue](https://hdsa.org/living-with-hd/faces-of-hd/meet-sue/) - On June 7, 1970, I married Darrel, who had been my high school sweetheart. Eventually, he and I started a family, which includes three daughters, each the love of our lives. Darrel became a construction estimator in roofing, and I taught in a junior high school. Life was made up of family time, work, and the
- [Meet Susan](https://hdsa.org/living-with-hd/faces-of-hd/meet-susan/) - My name is Susan and I live in Frisco, Texas. Until recently, there was no known history of Huntington’s disease in my family. In June of 2011 after a series of tests (including DNA testing to measure CAG repeats), my dad was diagnosed with HD. Upon learning this devastating news, my sister and I began
- [Meet the Decker's](https://hdsa.org/living-with-hd/faces-of-hd/meet-the-deckers/) - My name is Terrie, a loving wife and mother that has seen the effects of Huntington’s disease and the devastation that it has caused for my family in the past years. I watched my husband’s motor, cognitive skills and body decline rapidly from this disease. James tested positive for Huntington’s disease in 2005 and at
- [Meet the<br />Timberlakes & Beagleys](https://hdsa.org/living-with-hd/faces-of-hd/meet-the-timberlakebegley-family/) - Hi, we are the “The Elephant in the Room” — what no one talked about in my first husband’s family — Huntington’s disease. HD is often kept from family, friends, and community. HD came unexpectedly into my life in 1987. My husband, Pep, and I had three young children, (ages 9,5,1). His family was told

## Research News & Reports

- [2015 Postcard from Palm Springs](https://hdsa.org/hd-research/research-news-reports/2015-postcard-from-palm-springs/)
- [NIH announces first funding opportunities for the BRAIN Initiative!](https://hdsa.org/hd-research/research-news-reports/nih-announces-first-funding-opportunities-for-the-brain-initiative/) - HDSA is excited to share with you that the NIH has announced $40 million of new brain research funding opportunities. From NIH: You will recall that back in April, President Obama launched the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative to accelerate the development and application of innovative new technologies. These technologies will enable
- [Teva Expands Central Nervous System (CNS) Development Pipeline with Acquisition of Huntexil® Development Program Rights from NeuroSearch A/S](https://hdsa.org/hd-research/research-news-reports/teva-expands-central-nervous-system-cns-development-pipeline-with-acquisition-of-huntexil-development-program-rights-from-neurosearch-as/) - The following is an announcement of the agreement to transfer the Huntexil (ACR-16/pridopidine) rights from Neurosearch to Teva. It is dependent on Neurosearch shareholder approval on October 23. Assuming that the deal is completed we would hope to learn of new clinical trials of ACR-16 in the future. We will report the results of the
- [Teva Expands Central Nervous System (CNS) Development Pipeline with Acquisition of Huntexil® Development Program Rights from NeuroSearch A/S](https://hdsa.org/hd-research/research-news-reports/teva-expands-central-nervous-system-cns-development-pipeline-with-acquisition-of-huntexil-development-program-rights-from-neurosearch-as-2/)
- [Postcard from CHDI 2011](https://hdsa.org/hd-research/research-news-reports/postcard-from-chdi-2011/)
- [HD Insights Volume 3](https://hdsa.org/hd-research/research-news-reports/hd-insights-volume-3/) - HD Insights is a publication whose mission is to promote, disseminate and facilitate research in Huntington's disease and is targeted at HD researchers around the globe, in academia and industry. Dr. Ray Dorsey, Associate Professor of Neurology and Director of the Johns Hopkins Parkinsons's Disease and Movement Disorders Center is the editor. Ray is well-known
- [Auspex Pharmaceuticals Plans Phase III Clinical Trial for Chorea in HD Patients](https://hdsa.org/hd-research/research-news-reports/auspex-pharmaceuticals-plans-phase-iii-clinical-trial-for-chorea-in-hd-patients/) - Auspex Pharmaceuticals is a small biotechnology company based in La Jolla, CA. Auspex's tunique approach to developing therapeutics is to incorporate deuterium (a non-radioactive, non-toxic, naturally occurring form of hydrogen) into the molecular structure of existing FDA approved drugs. The rationale and hope for this is that the substitution of deuterium for hydrogen at specific
- [GABA stem cells](https://hdsa.org/hd-research/research-news-reports/gaba-stem-cells/) - Stem Cell Transplantation Restores Motor Circuitry in HD Mice A GABA neuron made from human stem cells in the lab of University of Wisconsin-Madison neuro-scientist Su-Chun Zhang. GABA neurons are the brain cells whose degradation causes Huntington’s disease, a condition characterized by severely degraded motor function, among other things. Zhang and his colleagues have shown
- [Proteomic Analysis](https://hdsa.org/hd-research/research-news-reports/proteomic-analysis/) - Proteomic Analysis of Induced Pluripotent Stem Cells Derived from an HD Patient. In our recent articles on induced pluripotent stem cells (iPSCs), we reported on the effective use of iPSCS derived from an HD patient with a 72 CAG count to treat a neurotoxin rat model of Huntington’s disease. We noted that these cells were
- [Methylene Blue](https://hdsa.org/hd-research/research-news-reports/methylene-blue/) - Drugs Based on Methylene Blue Enter the Treatment Pipeline Wikipedia image of Methylene Blue The study: Researchers led by Dr. Leslie Thompson, a neurobiologist at University of California–Irvine, have identified a possible treatment for Huntington’s disease, the dye methylene blue. Methylene blue has been previously reported to slow progression and improve cognition in Alzheimer’s
- [A New Gene Silencing Technique Enters the Pipeline](https://hdsa.org/hd-research/research-news-reports/a-new-gene-silencing-technique-enters-the-pipeline/) - A New Gene Silencing Technique Enters the Pipeline An Overview of Gene Silencing Progress Researchers associated with Isis Pharmaceuticals have published two articles on the effectiveness of a new technology designed to selectively silence the Huntington’s disease gene. Researchers were able to chemically modify single-strand small interfering RNA to achieve the efficiency of double-stranded short
- [Hayden Study NMDAR Memantine](https://hdsa.org/hd-research/research-news-reports/hayden-study-nmdar-memantine/) - Michael Hayden collaborates with Lynn Raymond's team from the Brain Research Centre and Department of Psychiatry at University of British Columbia to Publish Paper on NMDA Receptors and Memantine HDSA Coalition for the Cure member Michael Hayden collaborated with the team led by Lynn Raymond, of the Brain Research Centre and Department of Psychiatry at
- [ACR16](https://hdsa.org/hd-research/research-news-reports/acr16/) - Neurosearch Reports Good Results from the European Trial of ACR16 Neurosearch has reported positive results from the MermaiHD study, the European Phase III study with Huntexil® (pridopidine) in Huntington's disease. The HD community knows this drug by its original designation of ACR-16. Huntexil (ACR16) is a small molecule belonging to a pharmacological class called dopamine
- [MermaiHD ACR-16 (Huntexil) Trial Results](https://hdsa.org/hd-research/research-news-reports/mermaihd-acr-16-huntexil-trial-results/) - he Fifth Annual CHDI Therapeutics Conference took place February 8-11 in Palm Springs, CA. Two hundred-fifteen scientists from 18 countries gathered to attend presentations on the most recent developments in HD research, and to share their findings and thoughts on a variety of topics, all relating to developing therapies for HD. Complete coverage of the
- [MermaiHD Data Adjustment](https://hdsa.org/hd-research/research-news-reports/mermaihd-data-adjustment/) - The press release below involves a correction to previously announced results of the Huntexil (ACR16) clinical trial in Europe. In February, Neurosearch announced that there was a statistically significant difference between the treatment and control groups in the primary endpoint, the Modified Motor Score of the United Huntington's Disease Rating Scale. Probability was reported as
- [SIRT2 inhibition not promising](https://hdsa.org/hd-research/research-news-reports/sirt2-inhibition-not-promising/) - SIRT2 Inhibition Not a Promising Therapeutic Strategy In 2010, we reported on a study which proposed that SIRT2 inhibition be explored as a potential treatment for Huntington’s Disease based on results with striatal cell, drosophila (fruitfly) and c. elegans (flatworm) models. Sirtuins are protein deacetylase enzymes, biological molecules that remove acetyl groups from lysine amino
- [Ray Truant and Colleagues Publish Promising Findings](https://hdsa.org/hd-research/research-news-reports/ray-truant-and-colleagues-publish-promising-findings/) - Ray Truant and Colleagues Publish Promising Findings Could Phosphorylation Research Lead to a Potential Therapy? Cumulative research into phosphorylation of the HD protein may be bringing us closer to a potential therapy for Huntington’s disease. Dr. Ray Truant, a recent Ph.D. graduate Dr. Randy Singh Atwal, and colleagues have screened compounds in a cell model
- [GM1](https://hdsa.org/hd-research/research-news-reports/gm1/) - GM1 Restores Motor Function in the YAC128 Mouse Dr. Simonetta Sipione Researchers at the University of Alberta and McMaster University have reversed motor symptoms in the YAC128 HD mice by a continuous infusion of the ganglioside GM1 into the ventricles of the brain. Other treatments in the pipeline have delayed onset or slowed progression
- [Melatonin Delays Onset of HD in Mouse Model](https://hdsa.org/hd-research/research-news-reports/melatonin-delays-onset-of-hd-in-mouse-model/) - Melatonin Delays Onset, and Prolongs Survival in an HD Mouse Model Dr Robert Friedlander In 2008, we covered research by Dr. Robert Friedlander and colleagues which showed that inhibiting the release of cytochrome c was neuroprotective in the R6/2 mice. When the mitochrondria, the energy factories of the cell, are damaged in neurodegenerative disease, they
- [Track-HD Dec 2012 Announcement](https://hdsa.org/hd-research/research-news-reports/track-hd-dec-2012-announcement/) - TRACK-HD Identifies Candidate Biomarkers Based on a Two Year Longitudinal Study The TRACK-HD researchers. led by Dr. Sarah Tabrizi, have reported their second year results. TRACK-HD is a longitudinal biomarker study of premanifest and symptomatic Huntington’s disease patients. The goal is to find biomarkers which change before and after onset to be used in
- [New Prion Research Focuses Attention on the UPR in HD](https://hdsa.org/hd-research/research-news-reports/new-prion-research-focuses-attention-on-the-upr-in-hd/) - New Prion Research Focuses Attention on the UPR in Huntington’s Disease Researchers at the University of Leicester have learned some insight from studying prion disease that they believe may lead to therapeutic targets in other neurodegenerative disorders. Prion diseases, which are currently untreatable, are caused by an infectious protein entering into the cells or neurons
- [CIRM Awards $18 Million to UC-Davis for HD Stem Cell Research](https://hdsa.org/hd-research/research-news-reports/cirm-awards-18-million-to-uc-davis-for-hd-stem-cell-research/) - UC Davis stem cell researchers awarded $53 million Funding supports work toward clinical trials to treat vascular disease, osteoporosis and Huntington's disease Editor's note: Click this link to view or download a high-resolution photograph of UC Davis awardees: Left to right: Nancy Lane, Vicki Wheelock, John Laird and Jan Nolta. Photograph credit: UC Regents View
- [PostcardCHDI](https://hdsa.org/hd-research/research-news-reports/postcardchdi/)
- [Omeros](https://hdsa.org/hd-research/research-news-reports/omeros/) - IND application filed for a Phase I Clinical Trial of a PDE10 inhibitor In the Press Release below, we learn that Omeros has filed an IND for a Phase I clinical trial for its PDE10 inhibitor. This is good news for the HD community since preclinical data, which we reported last year, shows that it
- [ENCODE Study finds "genetic switches"](https://hdsa.org/hd-research/research-news-reports/encode-study-finds-genetic-switches/) - Credits: Darryl Leja (NHGRI), Ian Dunham (EBI) ENCODE investigators employ a variety of assays and methods to identify functional elements. The discovery and annotation of gene elements is accomplished primarily by sequencing RNA from a diverse range of sources, comparative genomics, integrative bioinformatic methods, and human curation. Regulatory elements are typically investigated through DNA
- [Video Postcard from CHDI 2012 Conference](https://hdsa.org/hd-research/research-news-reports/video-postcard-from-chdi-2012-conference/) - 2012 HD Therapeutics Postcard from CHDI Foundation on Vimeo.
- [Researchers Restore Neuron Function using iPSCs](https://hdsa.org/hd-research/research-news-reports/researchers-restore-neuron-function-using-ipscs/) - Patient-Derived Induced Pluripotent Stem Cells Advance Research, Could Lead to Restorative Treatment Researchers in Korea, Sweden, and the United States have been working with a line of induced pluripotent stem cells derived from a donor with Juvenile Huntington’s disease. Induced pluripotent stem cells (iPSCs) are produced by using genetic engineering or chemical means to cause
- [Lundbeck CHDI Collaboration](https://hdsa.org/hd-research/research-news-reports/lundbeck-chdi-collaboration/) - For Immediate Release CONTACT: Katie White (847) 282-1929 Lundbeck and CHDI Foundation announce research collaboration to investigate candidate therapy for Huntington’s disease • Expert network of international scientists to study Lundbeck’s pre-clinical compound • Collaboration is part of Lundbeck’s Huntington’s disease research initiative DEERFIELD, Ill., May 21, 2012 – CHDI
- [Video Postcards from Prauge](https://hdsa.org/hd-research/research-news-reports/video-postcards-from-prauge/) - A Video Postcard from Prague from CHDI Foundation on Vimeo.
- [EHDN Nightly News](https://hdsa.org/hd-research/research-news-reports/ehdn-nightly-news/) - Nightly News from EHDN in Prague 2010 from CHDI Foundation on Vimeo.
- [HDL2 News Page](https://hdsa.org/hd-research/research-news-reports/hdl2-news-page/) - A New Mouse Model of HDL2, a very rare disease with Similar Features to HD. The generation of a mouse model of the rare Huntington's Disease Like 2 disorder is good news for two reasons. First, because this will help to develop treatments for HDL2 patients, who are part of our community. Second, insights about
- [Steven Hersch Interview](https://hdsa.org/hd-research/research-news-reports/steven-hersch-interview/) - Dr. Hersch at the 2010 HDSA convention Interview with Dr. Steven Hersch on the CREST-E Trial Dr. Hersch is the lead investigator in a phase III (final) clinical trial to determine whether high dose creatine can safely and effectively slow the progression of Huntington's disease. The CREST-E study is actively recruiting and needs many more
- [Siena Biotech](https://hdsa.org/hd-research/research-news-reports/siena-biotech/) - Siena Biotech Starts Phase II Trial of its Sirt1 Inhibitor in Europe Siena Biotech is starting a Phase II trial of its Sirt1 Inhibitor in Europe. Sirt1 is a member of the family of sirtuin proteins. The name sirtuin comes from the Silent Information Regulator gene 2 (Sir2), a gene which is associated with aging
- [Prana Planning](https://hdsa.org/hd-research/research-news-reports/prana-planning/) - Prana Planning Phase II trial of their Copper Chelator Prana Biotechnology's iron chelator is moving through the HD pipeline. Prana will conduct a Phase II trial of PBT2 toward the end of the year. In 2007, Dr. Steven Hersch and colleagues showed that concentrations of copper are elevated in HD and provided evidence that interactions
- [Mechanism Matters](https://hdsa.org/hd-research/research-news-reports/mechanism-matters/) - Why Mechanism Matters - The Case of Dimebon If a drug helps HD patients, why does it matter how it does so? In a sense it doesn't; there are a number of drugs commonly prescribed for various illnesses whose methods of action aren't fully understood. If a drug works and is safe and well tolerated,
- [Toxic Protein Form](https://hdsa.org/hd-research/research-news-reports/toxic-protein-form/) - Form of the HD Protein Associated with Neurodegeneration is Identified Dr. Steven Finkbeiner, Professor of Neurology and Physiology at the University of California, San Francisco, and Gladstone Institute Dr. Steven Finkbeiner, and colleagues have identified the form of the HD protein associated with neurodegeneration. This is the result of research that began in 2003

## News

- [HDSA Statement on uniQure’s AMT-130 Regulatory Update](https://hdsa.org/news/hdsa-statement-on-uniqures-amt-130-regulatory-update/) - HDSA Statement on uniQure’s AMT-130 Regulatory Update 1
- [uniQure Regulatory Update Community Letter 6/17/2026](https://hdsa.org/news/uniqure-regulatory-update-community-letter-6-17-2026/)
- [uniQure Announces Plan for BLA Submission for AMT-130 in Huntington’s Disease](https://hdsa.org/news/uniqure-announces-plan-for-bla-submission-for-amt-130-in-huntingtons-disease/) - uniQure Announces Plan for BLA Submission for AMT-130 in Huntington’s Disease
- [Community letter: Skyhawk Therapeutics Announces Twelve-Month Interim Results from Phase 1/2  Clinical Trial of SKY-0515 in Huntington’s Disease](https://hdsa.org/news/skyhawk-therapeutics-announces-twelve-month-interim-results-from-phase-1-2-clinical-trial-of-sky-0515-in-huntingtons-disease-2/) - SKY-0515_Community Letter_Twelve-Month Phase 1C Patient Data_01JUN26
- [Skyhawk Therapeutics Announces Twelve-Month Interim Results from Phase 1/2 Clinical Trial of SKY-0515 in Huntington’s Disease](https://hdsa.org/news/skyhawk-therapeutics-announces-twelve-month-interim-results-from-phase-1-2-clinical-trial-of-sky-0515-in-huntingtons-disease/)
- [Biotech raises $42 million to run Huntington's disease trial](https://hdsa.org/news/biotech-raises-42-million-to-run-huntingtons-disease-trial/) - Latus Bio 2026-05 04 STAT Article
- [HDSA Marks 34 Years of Huntington’s Disease Awareness Month This May](https://hdsa.org/news/hdsa-marks-34-years-of-huntingtons-disease-awareness-month-this-may/) - HDSA Marks 34 Years of Huntington’s Disease Awareness Month This May Nationwide events, community storytelling, proclamations, and landmarks lighting up in blue will help shine a light on Huntington’s disease [New York, NY] — [May, 1, 2026] — The Huntington’s Disease Society of America (HDSA) is proud to mark 34 years of Huntington’s Disease (HD)
- [HDSA’s Day of Action - April 13th](https://hdsa.org/news/hdsas-day-of-action-april-13th/) - Press release
- [Community Update: Novartis’ INVEST-HD Phase 3 trial: Site Initiations in USA and Canada](https://hdsa.org/news/community-update-novartis-invest-hd-phase-3-trial-site-initiations-in-usa-and-canada/)
- [Update from the Huntington’s Disease Society of America (HDSA) ](https://hdsa.org/news/update-from-the-huntingtons-disease-society-of-america-hdsa/) - Update from the Huntington’s Disease Society of America (HDSA) The Huntington’s disease (HD) community currently has no approved disease-modifying therapies. While existing treatments may help manage certain symptoms, they do not stop or slow the underlying biological progression of the disease. For families living with this terminal, neurodegenerative condition, the search for a treatment that can
- [uniQure Regulatory Update Community Letter](https://hdsa.org/news/uniqure-regulatory-update-community-letter/)
- [uniQure Provides Regulatory Update on AMT-130 for Huntington’s Disease](https://hdsa.org/news/uniqure-provides-regulatory-update-on-amt-130-for-huntingtons-disease-3/)
- [Vico Therapeutics Announces Patient Dosing in Twice-Annual Regimen of VO659 in Phase 1/2 Trial in Huntington’s Disease, Spinocerebellar Ataxia Type 3 and Type 1](https://hdsa.org/news/vico-therapeutics-announces-patient-dosing-in-twice-annual-regimen-of-vo659-in-phase-1-2-trial-in-huntingtons-disease-spinocerebellar-ataxia-type-3-and-type-1/)
- [HARNESS Therapeutics: FAN1 Candidate selection Patient group Q&A](https://hdsa.org/news/harness-therapeutics-fan1-candidate-selection-patient-group-qa/)
- [Harness Therapeutics  HRN001 Press Release](https://hdsa.org/news/harness-therapeutics-hrn001-press-release/)
- [Novartis Community Update: INVEST-HD Phase 3](https://hdsa.org/news/novartis-community-update-invest-hd-phase-3/)
- [Huntington’s Disease Society of America Welcomes David Ticker as Chief Financial Officer](https://hdsa.org/news/huntingtons-disease-society-of-america-welcomes-david-ticker-as-chief-financial-officer/) - FOR IMMEDIATE RELEASE Contact: Mynelly Perez Director of Marketing & Communications Huntington’s Disease Society of America (HDSA) mperez@hdsa.org | (212) 242-1968 Huntington’s Disease Society of America Welcomes David Ticker as Chief Financial Officer New York, NY — February 4, 2026 — The Huntington’s Disease Society of America (HDSA) is pleased to announce that David Ticker has joined the organization
- [Skyhawk Therapeutics Community Letter: An Update for the Huntington’s Disease Community on SKY-0515](https://hdsa.org/news/skyhawk-therapeutics-community-letter-an-update-for-the-huntingtons-disease-community-on-sky-0515/)
- [Skyhawk Therapeutics Announces Nine Month Interim Results in Patients from its Phase 1 Clinical Trial of SKY-0515 as a Treatment for Huntington’s Disease](https://hdsa.org/news/skyhawk-therapeutics-announces-nine-month-interim-results-in-patients-from-its-phase-1-clinical-trial-of-sky-0515-as-a-treatment-for-huntingtons-disease/)
- [Huntington’s Disease Society of America Welcomes Three New Members to its Board of Trustees](https://hdsa.org/news/huntingtons-disease-society-of-america-welcomes-three-new-members-to-its-board-of-trustees/) - New York, NY (January 26, 2026) — The Huntington’s Disease Society of America (HDSA), the nation’s leading nonprofit dedicated to improving the lives of everyone affected by Huntington’s disease and their families, today announced the election of three new members to its Board of Trustees: Dr. Aaron Lasker, Lisa Mooney, LCSW, and Hiren Patel. “The
- [uniQure AMT-130 HD Community Letter](https://hdsa.org/news/uniqure-amt-130-hd-community-letter/)
- [uniQure Announces Type A Meeting Scheduled with FDA](https://hdsa.org/news/uniqure-announces-type-a-meeting-scheduled-with-fda/)
- [Ask The Scientist with HDBuzz Webinar](https://hdsa.org/news/ask-the-scientist-with-hdbuzz-webinar/)
- [HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS $449,971 TO HUNTINGTON’S DISEASE HUMAN BIOLOGY PROJECTS](https://hdsa.org/news/huntingtons-disease-society-of-america-awards-449971-to-huntingtons-disease-human-biology-projects/) - For Immediate Release Contact: Mynelly Perez mperez@hdsa.org HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS $449,971 TO HUNTINGTON’S DISEASE HUMAN BIOLOGY PROJECTS New York, NY, December 4, 2025 — Today, the Huntington’s Disease Society of America (HDSA) announced three new research grants awarded under the Society’s signature research initiative, the Huntington’s Disease Human Biology Project. This program
- [uniQure Provides Regulatory Update on AMT-130 for Huntington’s Disease](https://hdsa.org/news/uniqure-provides-regulatory-update-on-amt-130-for-huntingtons-disease-2/)
- [Researcher Spotlight: Dr. Xiangrui “Taylor” Zeng](https://hdsa.org/news/researcher-spotlight-dr-xiangrui-taylor-zeng/)
- [Huntington’s Disease Society of America Welcomes Robert Shaw as Chief Development and Field Officer](https://hdsa.org/news/huntingtons-disease-society-of-america-welcomes-robert-shaw-as-chief-development-and-field-officer/) - FOR IMMEDIATE RELEASE Contact: Mynelly Perez Director of Marketing & Communications Huntington’s Disease Society of America (HDSA) mperez@hdsa.org | (212) 242-1968 Huntington’s Disease Society of America Welcomes Robert Shaw as Chief Development and Field Officer New York, NY — [November 17, 2025] — The Huntington’s Disease Society of America (HDSA) is proud to announce that
- [AMT-130: Frequently Asked Questions](https://hdsa.org/news/amt-130-frequently-asked-questions/)
- [uniQure Provides Regulatory Update on AMT-130 for Huntington’s Disease](https://hdsa.org/news/uniqure-provides-regulatory-update-on-amt-130-for-huntingtons-disease/) - November 3, 2025 Dear Huntington’s Disease Community, We issued a press release today announcing that uniQure received feedback from the U.S. Food and Drug Administration (FDA) during a recent pre-Biologics License Application (BLA) meeting regarding AMT-130, an investigational gene therapy for Huntington’s disease (HD). The FDA defines a BLA as “a comprehensive submission to the
- [Upcoming Webinar: What the uniQure AMT-130 News Means for the Huntington’s Disease Community](https://hdsa.org/news/upcoming-webinar-what-the-uniqure-amt-130-news-means-for-the-huntingtons-disease-community/) - Upcoming Webinar: What the uniQure AMT-130 News Means for the Huntington’s Disease Community The recent announcement from uniQure about their gene therapy for Huntington’s disease has sparked both excitement and important questions. To help unpack what this means for our community, the Huntington’s Disease Society of America (HDSA) is hosting a special two-part event featuring
- [uniQure Announces Positive Topline Results from Pivotal Phase I/II Study of AMT-130 in Patients with Huntington’s Disease](https://hdsa.org/news/uniqure-announces-positive-topline-results-from-pivotal-phase-i-ii-study-of-amt-130-in-patients-with-huntingtons-disease/)
- [Novartis HD Community Letter - August 2025](https://hdsa.org/news/novartis-hd-community-letter-august-2025/) - Novartis HD Community Letter - August 2025
- [Huntington's Disease Society Of America Announces 2025 Berman-Topper Family HD Career Development Fellowship](https://hdsa.org/news/huntingtons-disease-society-of-america-announces-2025-berman-topper-family-hd-career-development-fellowship/) - FOR IMMEDIATE RELEASE Contact: Mynelly Perez, Director of Marketing & Communications (212) 242-1968 ext. 214 mperez@hdsa.org HUNTINGTON’S DISEASE SOCIETY OF AMERICA ANNOUNCES 2025 BERMAN-TOPPER FAMILY HD CAREER DEVELOPMENT FELLOWSHIP PROMISING POSTDOCTORAL RESEARCHER AT THE UNIVERSITY OF MICHIGAN AWARDED PRESTIGIOUS GRANT TO SUPPORT CAREER IN HUNTINGTON’S DISEASE RESEARCH New York, NY — [Aug 7, 2025]
- [40th Annual HDSA Convention Workshop Recordings Now Streaming](https://hdsa.org/news/40th-annual-hdsa-convention/) - Workshop recordings are now streaming on Youtube
- [BLOG: Disability Tips](https://hdsa.org/news/blog-disability-tips/)
- [HDSA AWARDS THREE 2025 DONALD A. KING SUMMER RESEARCH FELLOWSHIPS](https://hdsa.org/news/hdsa-awards-three-2025-donald-a-king-summer-research-fellowships/) - New York, NY (May 19, 2025) — The Huntington’s Disease Society of America (HDSA) is pleased to announce the recipients of the 2025 Donald A. King Summer Research Fellowships, a unique grant program to train the next-generation of scientists with research expertise in Huntington’s disease (HD). The three awardees are undergraduate students who will spend
- [Roche-Spark HD Community Letter](https://hdsa.org/news/roche-spark-hd-community-letter/)
- [HDSA Now Accepting Letters of Intent    for the 2025 HD Human Biology Project](https://hdsa.org/news/hdsa-now-accepting-letters-of-intent-for-the-2025-hd-human-biology-project/) - Despite the identification of the gene responsible for Huntington's disease (HD) over 30 years ago, there is not yet an effective treatment to slow or stop the progression of symptoms. While remarkable advances in HD biology have been made using animal models, the development of effective therapies requires research in humans. As a result,
- [Huntington's Disease Awareness Month: A Month-Long Campaign to Educate and Empower This May, Celebrate and Raise Awareness with HDSA](https://hdsa.org/news/huntingtons-disease-awareness-month-a-month-long-campaign-to-educate-and-empower-this-may-celebrate-and-raise-awareness-with-hdsa/) - FOR IMMEDIATE RELEASE Huntington's Disease Awareness Month: A Month-Long Campaign to Educate and Empower This May, Celebrate and Raise Awareness with HDSA New York, NY (May 1, 2025) – The Huntington’s Disease Society of America (HDSA) is proud to mark 33 years of Huntington's Disease (HD) Awareness Month, a nationwide initiative dedicated to educating
- [HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS MORE THAN $1.8 MILLION TO EXPAND HDSA CENTERS OF EXCELLENCE NETWORK TO SIXTY-NINE SITES](https://hdsa.org/news/huntingtons-disease-society-of-america-awards-more-than-1-8-million-to-expand-hdsa-centers-of-excellence-network-to-sixty-nine-sites/) - HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS MORE THAN $1.8 MILLION TO EXPAND HDSA CENTERS OF EXCELLENCE NETWORK TO SIXTY-NINE SITES New York, NY (April 2, 2025) – The Huntington’s Disease Society of America (HDSA) is expanding its HDSA Centers of Excellence network of comprehensive care clinics with 69 grants totaling $1,810,400. HDSA recognized 60 HDSA
- [Genentech/Roche GENERATION HD2 study Update: Community Letter](https://hdsa.org/news/genentech-roche-generation-hd2-study-update-community-letter/)
- [Demand NO CUTS to Medicaid!](https://hdsa.org/news/demand-no-cuts-to-medicaid/) - URGENT: Demand No Cuts To Medicaid Congress is discussing MASSIVE cuts to Medicaid, which could drastically impact thousands of HD families who rely on this essential healthcare. We cannot let this happen! Take action today to make your voice heard! ACT NOW by emailing your U.S. Representatives and Senators to demand NO CUTS to Medicaid.
- [HDSA Berman-Topper & Donald A. King Fellowship Applications Now Open](https://hdsa.org/news/hdsa-berman-topper-donald-a-king-fellowship-applications-now-open/)
- [Amy Gray Appointed as New President & CEO of HDSA (Huntington's Disease Society of America)](https://hdsa.org/news/amy-gray-appointed-as-new-president-ceo-of-hdsa-huntingtons-disease-society-of-america/) - For Immediate Release Amy Gray Appointed as New President & CEO of HDSA (Huntington's Disease Society of America) New York, NY — (February 3, 2025) — The Huntington's Disease Society of America (HDSA) is pleased to announce the appointment of Amy Gray as its new President & Chief Executive Officer, effective immediately. Amy brings over
- [HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS $523,320 TO HUNTINGTON’S DISEASE HUMAN BIOLOGY PROJECTS](https://hdsa.org/news/huntingtons-disease-society-of-america-awards-523320-to-huntingtons-disease-human-biology-projects/) - For Immediate Release Contact: Mynelly Perez mperez@hdsa.org HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS $523,320 TO HUNTINGTON’S DISEASE HUMAN BIOLOGY PROJECTS New York, NY, December 16, 2024 — Today, the Huntington’s Disease Society of America (HDSA) announced that three research grants have been awarded under the Society’s largest research initiative, the HDSA Huntington’s Disease Human Biology
- [The Huntington’s Disease Society of America Welcomes Jenne Coler-Dark as New Chair of the Board of Trustees](https://hdsa.org/news/the-huntingtons-disease-society-of-america-welcomes-jenne-coler-dark-as-new-chair-of-the-board-of-trustees/) - FOR IMMEDIATE RELEASE Contact: Mynelly Perez, Director of Marketing & Communications (212) 242-1968 ext. 214 MPerez@hdsa.org The Huntington’s Disease Society of America Welcomes Jenne Coler-Dark as New Chair of the Board of Trustees New York, NY – December 16, 2024– The Huntington’s Disease Society of America (HDSA) is proud to announce Jenne Coler-Dark
- [uniQure Announces Alignment with FDA on Key Elements of Accelerated Approval Pathway for AMT-130 in Huntington’s Disease](https://hdsa.org/news/uniqure-announces-alignment-with-fda-on-key-elements-of-accelerated-approval-pathway-for-amt-130-in-huntingtons-disease/)
- [Exciting News: PTC Therapeutics Enters into a Global License and Collaboration Agreement with Novartis for PTC518 Huntington's Disease Program](https://hdsa.org/news/exciting-news-ptc-therapeutics-enters-into-a-global-license-and-collaboration-agreement-with-novartis-for-ptc518-huntingtons-disease-program/)
- [HDSA Podcast- New Episode Now Available!](https://hdsa.org/news/hdsa-podcast-new-episode-now-available/)
- [Spark Therapeutics Community Letter](https://hdsa.org/news/spark-therapeutics-community-letter/)
- [November 2024: HDSA Today Newsletter](https://hdsa.org/news/november-2024-hdsa-today-newsletter/)
- [Championing Hope: HDSA’s Unwavering Commitment to Huntington’s Disease Families](https://hdsa.org/news/championing-hope-hdsas-unwavering-commitment-to-huntingtons-disease-families/) - For 57 years, HDSA has been dedicated to improving the lives of everyone affected by Huntington’s disease and their families. Our commitment to this mission is unwavering, but the path to achieving this mission is ever changing. There will be new twists and turns in the path ahead, but today we must recommit ourselves to
- [October 2024 HDSA TODAY Newsletter](https://hdsa.org/news/october-2024-hdsa-today-newsletter/)
- [2023 HDSA Annual Report](https://hdsa.org/news/2023-hdsa-annual-report/)
- [BLOG: This Week in HD Research](https://hdsa.org/news/this-week-in-hd-research/)
- [We Need Your Voice! Take The HD Symptoms And Treatment Impact Survey](https://hdsa.org/news/we-need-your-voice-take-the-hd-symptoms-and-treatment-impact-survey/)
- [HDSA Awards Six 2024 Donald A. King Summer Research Fellowships](https://hdsa.org/news/hdsa-awards-six-2024-donald-a-king-summer-research-fellowships/) - HDSA AWARDS SIX 2024 DONALD A. KING SUMMER RESEARCH FELLOWSHIPS New York, NY (July 10, 2024) — The Huntington’s Disease Society of America (HDSA) is pleased to announce the recipients of the 2024 Donald A. King Summer Research Fellowships, a unique grant program to train the next-generation of scientists with research expertise in Huntington’s
- [HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS TWO 2024 BERMAN-TOPPER FAMILY HD CAREER DEVELOPMENT FELLOWSHIPS ](https://hdsa.org/news/huntingtons-disease-society-of-america-awards-two-2024-berman-topper-family-hd-career-development-fellowships/) - HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS TWO 2024 BERMAN-TOPPER FAMILY HD CAREER DEVELOPMENT FELLOWSHIPS 
- [uniQure Announces Positive Interim Data Update Demonstrating Slowing of Disease Progression in Phase I/II Trials of AMT-130 for Huntington’s Disease](https://hdsa.org/news/uniqure-announces-positive-interim-data-update-demonstrating-slowing-of-disease-progression-in-phase-i-ii-trials-of-amt-130-for-huntingtons-disease/)
- [Farewell & Leadership Transition at HDSA](https://hdsa.org/news/farewell-leadership-transition-at-hdsa/) - Dear HDSA Community, As I wrap up my last few weeks as President & CEO of the Huntington's Disease Society of America (HDSA), I want to once again express my profound gratitude for the incredible journey we've shared. Over the past 15 years, it has been a privilege to lead this amazing organization and work
- [Wave Life Sciences Update: Results from SELECT-HD Community Letter](https://hdsa.org/news/wave-life-sciences-update-results-from-select-hd/)
- [PTC Therapeutics Update: Interim PIVOT-HD Results Community Letter](https://hdsa.org/news/ptc-therapeutics-update-pivot-hd-results-community-letter/)
- [A message from Louise Vetter, President & CEO](https://hdsa.org/news/a-message-from-louise-vetter-president-ceo/)
- [Huntington's Disease Awareness Month: A Month-Long Campaign to Educate and Empower, Culminating with the Annual HDSA Convention in Spokane, WA](https://hdsa.org/news/huntingtons-disease-awareness-month-a-month-long-campaign-to-educate-and-empower-culminating-with-the-annual-hdsa-convention-in-spokane-wa/) - FOR IMMEDIATE RELEASE Huntington's Disease Awareness Month: A Month-Long Campaign to Educate and Empower, Culminating with the Annual HDSA Convention in Spokane, WA New York, NY (May 1, 2024) – This May, the Huntington's Disease Society of America (HDSA) is celebrating 32 years of Huntington's Disease Awareness Month with a series of events across
- [HDSA to Host Externally-led Patient Focused Drug Development (PFDD) Meeting](https://hdsa.org/news/hdsa-to-host-externally-led-patient-focused-drug-development-pfdd-meeting/) - HDSA to Host Externally-led Patient Focused Drug Development (PFDD) Meeting FDA Recognizes Value in Additional PFDD Meeting for Huntington’s Disease New York, NY (April 16, 2024) — The Huntington's Disease Society of America (HDSA) has received approval from the U.S. Food and Drug Administration (FDA) to host an Externally-led Patient Focused Drug Development (EL-PFDD) meeting
- [Now Accepting Human Biology Project LOIs](https://hdsa.org/news/now-accepting-human-biology-project-lois/) - Visit -https://hdsa.org/hd-research/hd-human-biology-project/ for more details.
- [Act Fast: Early Bird Rate for HDSA Convention Ends March 31st!](https://hdsa.org/news/act-fast-early-bird-rate-for-hdsa-convention-ends-march-31st/)
- [HDSA Publishes 2023 Year in Review](https://hdsa.org/news/hdsa-publishes-2023-year-in-review/)
- [Prilenia has shared a community letter announcing that they plan to take steps toward applying to the European Medicines Agency for approval of pridopidine.](https://hdsa.org/news/prilenia-has-shared-a-community-letter-announcing-that-they-plan-to-take-steps-toward-applying-to-the-european-medicines-agency-for-approval-of-pridopidine/)
- [HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS MORE THAN $2.1 MILLION TO EXPAND HDSA CENTERS OF EXCELLENCE NETWORK TO SIXTY-EIGHT SITES](https://hdsa.org/news/huntingtons-disease-society-of-america-awards-more-than-2-1-million-to-expand-hdsa-centers-of-excellence-network-to-sixty-eight-sites/) - HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS MORE THAN $2.1 MILLION TO EXPAND HDSA CENTERS OF EXCELLENCE NETWORK TO SIXTY-EIGHT SITES New York, NY (February 13, 2024) – The Huntington’s Disease Society of America (HDSA) is expanding its HDSA Centers of Excellence network of comprehensive care clinics with 57 grants totaling $2,100,557. In addition to the
- [2024 DONALD A. KING SUMMER RESEARCH FELLOWSHIP APPLICATION NOW OPEN](https://hdsa.org/news/dksr2024/) - 2024 DONALD A. KING SUMMER RESEARCH FELLOWSHIP Do you know a student looking for a summer research funding opportunity? HDSA is now accepting applications for the 2024 Donald A. King Summer Research Fellowship. This competitive fellowship covers funding for undergraduate life science students, pre-medical students and first-year medical students to complete a summer research
- [2024 HDSA BERMAN/TOPPER FAMILY HD CAREER DEVELOPMENT FELLOWSHIP APPLICATION NOW OPEN](https://hdsa.org/news/hdsa-berman-topper-family-hd-career-development-fellowship-application-now-open-2024/) - 2024 HDSA BERMAN/TOPPER FAMILY HD CAREER DEVELOPMENT FELLOWSHIP The Huntington's Disease Society of America (HDSA) believes we must ensure that the pipeline of passionate and bright HD scientists and clinicians remains full, a vision that is shared by the Berman and Topper families. With their support, HDSA sponsors innovative lines of scientific inquiry into
- [ROCHE UPDATE: Roche-Genentech GENERATION HD2 Study updates & NEJM Publication](https://hdsa.org/news/roche-update-roche-genentech-generation-hd2-study-updates-nejm-publication/)
- [uniQure Announces Update on U.S. Phase I/II Clinical Trial of AMT-130 Gene Therapy for the Treatment of Huntington’s Disease](https://hdsa.org/news/uniqure-announces-update-on-u-s-phase-i-ii-clinical-trial-of-amt-130-gene-therapy-for-the-treatment-of-huntingtons-disease-2/)
- [uniQure Community Letter: Update on U.S. Phase I/II Clinical Trial of AMT-130 Gene Therapy](https://hdsa.org/news/uniqure-community-letter-update-on-u-s-phase-i-ii-clinical-trial-of-amt-130-gene-therapy-2/)
- [HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS $898,194 TO HUNTINGTON’S DISEASE HUMAN BIOLOGY PROJECTS](https://hdsa.org/news/huntingtons-disease-society-of-america-awards-898194-to-huntingtons-disease-human-biology-projects/) - For Immediate Release Contact: Mynelly Perez mperez@hdsa.org New York, NY, December 4th, 2023 — Today, the Huntington’s Disease Society of America (HDSA) announced that six research grants have been awarded under the Society’s largest research initiative, the HDSA Huntington’s Disease Human Biology Project. These grants represent HDSA’s patient-centric research focus which brings basic and clinical
- [TEAM HDSA RAISES MORE THAN $126,000 AT THE NEW YORK CITY MARATHON TO SUPPORT THE HUNTINGTON’S DISEASE SOCIETY OF AMERICA](https://hdsa.org/news/team-hdsa-raises-more-than-126000-at-the-new-york-city-marathon-to-support-the-huntingtons-disease-society-of-america/) - TEAM HDSA RAISES MORE THAN $126,000 AT THE NEW YORK CITY MARATHON TO SUPPORT THE HUNTINGTON’S DISEASE SOCIETY OF AMERICA New York, NY | November 13, 2023 – Twenty-three runners from 13 states participated in the TCS New York City Marathon on Sunday, November 5, 2023, to support the Huntington’s Disease Society of America (HDSA). More than
- [Now Accepting 2024 HDSA Centers of Excellence Applications](https://hdsa.org/news/now-accepting-2024-hdsa-centers-of-excellence-applications/) - If your clinic would like to be considered for HDSA Center of Excellence designation in 2024, HDSA is now soliciting applications from Huntington’s disease (HD) clinics that were not HDSA Centers of Excellence in 2023 and are located more than 150 miles from an existing HDSA Center of Excellence. Click here to search a map of existing HDSA Centers of
- [2022 HDSA Annual Report](https://hdsa.org/news/2022-hdsa-annual-report-published/)
- [FREEZE HD Update](https://hdsa.org/news/freeze-hd-update/) - IMPORTANT CHANGES TO FREEZE HD EVENT Due to circumstances beyond our control, including but not limited to the impact of the actor’s strike and resurgence of COVID-19, we have made the difficult decisions to postpone the event. Stay tuned for a new date in the coming year! If you have already registered for the event,
- [HDSA Earns Four-Star Rating From Charity Navigator](https://hdsa.org/news/huntingtons-disease-society-of-america-earns-four-star-rating-from-charity-navigator/) - HUNTINGTON’S DISEASE SOCIETY OF AMERICA EARNS FOUR-STAR RATING FROM CHARITY NAVIGATOR New York, NY | September 18, 2023 – The Huntington’s Disease Society of America (HDSA) is proud to announce that its mission impact, strong financial health and ongoing accountability and transparency have earned a Four-Star Rating from Charity Navigator. This rating designates HDSA as an official “Give with
- [Postcard from Dubrovnik: Highlights from the 2023 CHDI HD Therapeutics Conference](https://hdsa.org/news/postcard-from-dubrovnik-highlights-from-the-2023-chdi-hd-therapeutics-conference/)
- [uniQure Community Letter: Update on U.S. Phase I/II Clinical Trial of AMT-130 Gene Therapy](https://hdsa.org/news/uniqure-community-letter-update-on-u-s-phase-i-ii-clinical-trial-of-amt-130-gene-therapy/)
- [uniQure Announces Update on U.S. Phase I/II Clinical Trial of AMT-130 Gene Therapy for the Treatment of Huntington’s Disease](https://hdsa.org/news/uniqure-announces-update-on-u-s-phase-i-ii-clinical-trial-of-amt-130-gene-therapy-for-the-treatment-of-huntingtons-disease/)
- [Huntington's Disease Society of America Awards 2023 Berman-Topper Family HD Career Development Fellowship](https://hdsa.org/news/huntingtons-disease-society-of-america-awards-2023-berman-topper-family-hd-career-development-fellowship/) - FOR IMMEDIATE RELEASE Contact: Mynelly Perez, Director of Marketing & Communications (212) 242-1968 ext. 214 MPerez@hdsa.org Huntington’s Disease Society of America awards 2023 Berman-topper Family HD Career Development Fellowship researcher from VANCOUVER awarded prestigious grant New York, NY, May 24, 2023 -- The Huntington’s Disease Society of America (HDSA) is pleased to
- [HDSA Partnership with Rare-X Community Letter & FAQ](https://hdsa.org/news/hdsa-partnership-with-rare-x-community-letter-faq/)
- [HDSA and RARE-X Launch HD Data Collection Initiative to Accelerate Treatments for Huntington's disease](https://hdsa.org/news/hdsa-and-rare-x-launch-hd-data-collection-initiative-to-accelerate-treatments-for-huntingtons-disease/) - Contact: Mynelly Perez HDSA/Marketing & Communications mperez@hdsa.org /212-242-1968 Lauren Alford Global Genes/RARE-X Marketing Communications lauren.alford@globalgenes.org / 919-616-7532 HDSA AND RARE-X LAUNCH HD DATA COLLECTION INITIATIVE TO ACCELERATE TREATMENTS FOR HUNTINGTON’S DISEASE New York, NY (May 17, 2023) — The Huntington’s Disease Society of America (HDSA) and RARE-X, the Global Genes patient-driven data
- [Now Available in the U.S.: Once-Daily AUSTEDO® XR (deutetrabenazine) Extended-Release Tablets](https://hdsa.org/news/now-available-in-the-u-s-once-daily-austedo-xr-deutetrabenazine-extended-release-tablets/)
- [HDSA Awards Four 2023 Donald A. King Summer Research Fellowships](https://hdsa.org/news/hdsa-awards-2023/) - HDSA AWARDS FOUR 2023 DONALD A. KING SUMMER RESEARCH FELLOWSHIPS New York, NY (May 8, 2023) — The Huntington’s Disease Society of America (HDSA) is pleased to announce the recipients of the 2023 Donald A. King Summer Research Fellowships, a unique grant program to train the next-generation of scientists with research expertise in Huntington’s
- [HDBUZZ: PROOF-HD study of pridopidine ends with negative result](https://hdsa.org/news/hdbuzz-proof-hd-study-of-pridopidine-ends-with-negative-result/)
- [Prilenia Announces Important Update About The Topline Results From Phase 3 Study, PROOF-HD.](https://hdsa.org/news/prilenia-announces-important-update-about-the-topline-results-from-phase-3-study-proof-hd/)
- [The HDSA Podcast Episode #3](https://hdsa.org/news/the-hdsa-podcast-episode-2/)
- [Teva Announces FDA Approval of AUSTEDO® XR (deutetrabenazine) Extended-Release Tablets, a New Once-Daily Formulation of AUSTEDO® (deutetrabenazine) Tablets](https://hdsa.org/news/eva-announces-fda-approval-of-austedo-xr-deutetrabenazine-extended-release-tablets-a-new-once-daily-formulation-of-austedo-deutetrabenazine-tablets/) - Teva Announces FDA Approval of AUSTEDO® XR (deutetrabenazine) Extended-Release Tablets, a New Once-Daily Formulation of AUSTEDO® (deutetrabenazine) Tablets New once-daily AUSTEDO XR regimen now approved in 6, 12, and 24 mg tablet strengths AUSTEDO is the only vesicular monoamine transporter 2 (VMAT2) inhibitor approved for both tardive dyskinesia (TD) and chorea associated with Huntington’s disease
- [HDBuzz: Roche Phase II GENERATION HD2 study underway](https://hdsa.org/news/hdbuzz-roche-phase-ii-generation-hd2-study-underway/)
- [Huntington’s Disease Society of America Awards More Than $2 Million To Expand HDSA Centers of Excellence Network to Sixty-Seven Sites Across the US](https://hdsa.org/news/huntingtons-disease-society-of-america-awards-more-than-2-million-to-expand-hdsa-centers-of-excellence-network-to-sixty-seven-sites-across-the-us/) - HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS MORE THAN $2 MILLION TO EXPAND HDSA CENTERS OF EXCELLENCE NETWORK TO SIXTY-SEVEN SITES New York, NY (February 13, 2023) – The Huntington’s Disease Society of America (HDSA) is expanding its HDSA Centers of Excellence network of comprehensive care clinics with 56 grants totaling $2,029,759. In addition to the 56
- [Louise Vetter provides statement in support of the FDA Listening Session on Juvenile Onset Huntington’s Disease](https://hdsa.org/news/lvjhd/) - February 10, 2023 Louise Vetter, HDSA's President & CEO, provides statement in support of the FDA Listening Session on Juvenile Onset Huntington’s Disease New York, New York -- Juvenile onset Huntington’s disease (JoHD) is the tragedy of Huntington’s disease magnified by the loss of childhood and adulthood. Unlike adult onset
- [HDSA Publishes 2022 Year in Review Magazine](https://hdsa.org/news/hdsa-publishes-2022-year-in-review-magazine/) - HDSA'S 2022 YEAR IN REVIEW MAGAZINE Take a look back on HDSA's achievements and top stories from 2022 in the latest Year in Review Magazine. CLICK HERE TO READ
- [Introducing The HDSA Podcast](https://hdsa.org/news/introducing-the-hdsa-podcast/)
- [Roche-Genentech Community Letter: GENERATION HD2 study now open](https://hdsa.org/news/roche-genentech-community-letter-generation-hd2-study-now-open/) - Roche-Genentech Community Letter: GENERATION HD2 Study Now Open This study evaluates the safety, biomarkers and efficacy trends of different dose levels of investigational drug tominersen in people aged 25 to 50 with prodromal (very early subtle signs of HD) or early manifest HD. CLICK HERE FOR FULL STATEMENT FROM ROCHE-GENENTECH
- [38th Annual HDSA Convention in New Orleans Registration Now Open](https://hdsa.org/news/38th-annual-hdsa-convention-in-new-orleans-registration-now-open/)
- [The Marker: HDSA's 2022 Research Report is now available](https://hdsa.org/news/the-marker-hdsas-2022-research-report-is-now-available/)
- [HDSA Community Statement: FY23 Omnibus Appropriations Package Fails HD Families ](https://hdsa.org/news/hdsa-community-statement-fy23-omnibus-appropriations-package-fails-hd-families/) - Community Statement from Louise Vetter, HDSA's President & CEO FY23 Omnibus Appropriations Package Fails HD Families New York, NY, December 20, 2022 - Once again, Congress has failed to take action to ensure that families affected by Huntington’s disease (HD), a devastating brain disorder that impacts more than 200,000 American families, have uninterrupted healthcare coverage.
- [HDBuzz: Disappointing news from Novartis about branaplam and the VIBRANT-HD trial](https://hdsa.org/news/hdbuzz-disappointing-news-from-novartis-about-branaplam-and-the-vibrant-hd-trial/)
- [Novartis provides status of VIBRANT-HD, the study of branaplam/LMI070 in Huntington’s disease](https://hdsa.org/news/novartis-provides-status-of-vibrant-hd-the-study-of-branaplam-lmi070-in-huntingtons-disease/) - Dear Huntington’s Disease Community: We are sharing this update to make sure you have the latest information regarding the clinical trial of branaplam in Huntington’s disease. Unfortunately, we are sharing the difficult news that we are ending development of branaplam in Huntington’s disease. CLICK HERE FOR FULL STATEMENT FROM NOVARTIS
- [Teresa Srajer Appointed Chair of HDSA’s National Board of Trustees](https://hdsa.org/news/teresa-srajer-appointed-chair-of-national-board-of-trustees-at-the-huntingtons-disease-society-of-america/) - TERESA SRAJER APPOINTED CHAIR OF NATIONAL BOARD OF TRUSTEES AT THE HUNTINGTON’S DISEASE SOCIETY OF AMERICA Society Welcomes Dr. Jeffrey Brown to the Board of Trustees New York, NY | December 6, 2022 – The Huntington’s Disease Society of America (HDSA) is excited to announce that Teresa Srajer has been appointed Chair of HDSA’s National Board of
- [Team HDSA Raises More Than $100,000 at the New York City Marathon](https://hdsa.org/news/team-hdsa-raises-more-than-100000-at-the-new-york-city-marathon/) - TEAM HDSA RAISES MORE THAN $100,000 AT THE NEW YORK CITY MARATHON TO SUPPORT THE HUNTINGTON’S DISEASE SOCIETY OF AMERICA New York, NY | November 21, 2022 – Twenty-three runners from across the United States and Canada participated in the TCS New York City Marathon on Sunday, November 6, 2022 to support the Huntington’s Disease Society of
- [Neurocrine Biosciences Presents Additional Phase 3 Data for KINECT-HD Study Evaluating Valbenazine](https://hdsa.org/news/neurocrine-biosciences-presents-additional-phase-3-data-for-kinect-hd-study-evaluating-valbenazine/) - Neurocrine Biosciences Presents Additional Phase 3 Data for KINECT-HD Study Evaluating Valbenazine for Chorea Associated with Huntington Disease at HSG 2022 "The additional findings of the Phase 3 KINECT-HD study presented in this poster demonstrate an improvement in chorea over time, with an increase in responder rates in the TMC primary endpoint, and CGI-C and
- [HDSA Awards $886,785 to Huntington's Disease Human Biology Projects](https://hdsa.org/news/hdsa-awards-886785-to-huntingtons-disease-human-biology-projects/) - HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS $886,785 TO HUNTINGTON’S DISEASE HUMAN BIOLOGY PROJECTS New York, NY, November 2, 2022 — Today, the Huntington’s Disease Society of America (HDSA) announced that six research grants have been awarded under the Society’s largest research initiative, the HDSA Huntington’s Disease Human Biology Project. These grants represent HDSA’s patient-centric research focus
- [Breaking News: uniQure provides update on AMT-130](https://hdsa.org/news/breaking-news-uniqure-provides-update-on-amt-130/) - Dear Huntington’s Disease Community Members, This morning, uniQure issued a press release which included an update on our clinical trial of AMT-130 (the name of the study drug) for Huntington’s Disease (HD.) After a brief pause announced this past August in patient enrollment at the higher-dose level in the European Phase I/II clinical trial
- [Eighth Annual Freeze HD Raises More Than $200,000](https://hdsa.org/news/eighth-annual-freeze-hd-raises-more-than-200000/) - 8TH ANNUAL FREEZE HD HONORS JASON RITTER & THE RITTER FAMILY AND RAISES MORE THAN $200,000 TO SUPPORT THE HUNTINGTON'S DISEASE SOCIETY OF AMERICA Los Angeles, CA (October 25, 2022) – After two years of virtual programs, the popular Freeze HD event to support the Huntington's Disease Society of America (HDSA) returned in person on Saturday,
- [PTC Provides Update on Ongoing Global PIVOT-HD Trial For PTC518](https://hdsa.org/news/ptc-provides-update-on-ongoing-global-pivot-hd-trial-for-ptc518/) - PTC Provides Update on Ongoing Global PIVOT-HD Trial For PTC518 PTC Therapeutics confirmed today that enrollment is active and ongoing for its Phase 2 PIVOT-HD trial of PTC518 for the treatment of Huntington's disease at study sites globally. To date, PTC has received approval for conduct of the planned 12-month study in several European countries
- [Three-year study shows that AUSTEDO® is safe, tolerable, and controls chorea in people with HD](https://hdsa.org/news/three-year-study-shows-that-austedo-is-safe-tolerable-and-controls-chorea-in-people-with-hd/) - Teva Announces Results from 3-Year Study Assessing the Safety and Tolerability of AUSTEDO® (deutetrabenazine) Tablets for the Treatment of Chorea Associated with Huntington’s Disease Teva Pharmaceuticals today announced results from the ARC-HD (Alternatives for Reducing Chorea in Huntington’s Disease) trial, an approximately 3-year open-label, single-arm, 2-cohort, multicenter extension study evaluating the safety and tolerability of
- [HDSA Publishes 2021 Annual Report](https://hdsa.org/news/hdsa-publishes-2021-annual-report/) - HDSA Publishes 2021 Annual Report
- [HDBuzz: Forward momentum for Roche & Wave in latest news about huntingtin-lowering trials](https://hdsa.org/news/hdbuzz-forward-momentum-for-roche-wave-in-latest-news-about-huntingtin-lowering-trials/)
- [Wave Life Sciences Announces Positive Update from Phase 1b/2a SELECT-HD Trial](https://hdsa.org/news/wave-life-sciences-announces-positive-update-from-phase-1b-2a-select-hd-trial/) - Early data from Wave Life Sciences SELECT-HD trial suggests lowering of harmful huntingtin with no serious side effects. CLICK HERE FOR FULL PRESS RELEASE
- [BREAKING NEWS: Roche/Genentech Announce Plans For GENERATION-HD2](https://hdsa.org/news/breaking-news-roche-genentech-announce-plans-for-generation-hd2/) - Roche/Genentech announce the plans for GENERATION HD2, a new Phase II clinical study expected to start enrolling study participants early next year. CLICK HERE FOR FULL STATEMENT
- [HDSA Disability Chat: JHD & Social Security](https://hdsa.org/news/hdsa-disability-chat-jhd-social-security/)
- [HDSA Research Webinar: All You Need To Know About PROOF-HD](https://hdsa.org/news/hdsa-research-webinar-all-you-need-to-know-about-proof-hd/)
- [HDBuzz: Serious side effects reported for some people treated with the huntingtin-lowering drug AMT-130, currently in clinical trials](https://hdsa.org/news/hdbuzz-serious-side-effects-reported-for-some-people-treated-with-the-huntingtin-lowering-drug-amt-130-currently-in-clinical-trials/)
- [Novartis Provides Community Update Regarding VIBRANT-HD](https://hdsa.org/news/novartis-provides-community-update-regarding-vibrant-hd/) - August 24, 2022 Community Update: Status of VIBRANT-HD, the study of branaplam/LMI070 in Huntington’s Disease CLICK HERE FOR FULL COMMUNITY UPDATE FROM NOVARTIS
- [HDSA Research Webinar: HD Clinical Trials Update](https://hdsa.org/news/hdsa-research-webinar-hd-clinical-trials-update/) - On Thursday, August 11, 2022, Arik Johnson, PsyD (HDSA's Chief Mission Officer), Leora Fox, PhD (HDSA's Assistant Director of Research & Patient Engagement), Jennifer Simpson, LCSW (HDSA's Assistant Director of Youth & Community Services) and Victor Sung, MD (HDSA's Chairman of the Board of Trustees) discussed recent HD clinical trial news. CLICK HERE TO WATCH
- [Now Accepting 2023 HDSA Centers of Excellence Letters of Intent](https://hdsa.org/news/now-accepting-2023-hdsa-centers-of-excellence-letters-of-intent/) - Now Accepting 2023 HDSA Centers of Excellence Letters of Intent If your clinic would like to be considered for HDSA Center of Excellence designation in 2023, HDSA is now soliciting Letters of Intent from Huntington’s disease (HD) clinics that were not HDSA Centers of Excellence in 2022 and are located more than 150 miles from an existing
- [Sage Therapeutics Provides Positive Update on the SURVEYOR Study](https://hdsa.org/news/sage-therapeutics-provides-positive-update-on-the-surveyor-study/) - Dear Global Huntington’s Disease Community, We are pleased to share with you an important update on the clinical development program for Sage Therapeutics, Inc.’s investigational drug, SAGE-718. We are happy to announce that the SURVEYOR Study, a Phase 2 real-world functioning study, is now open for enrollment. The SURVEYOR Study is a randomized, placebo-controlled, double-blind
- [HDSA Films presents KING'S CRUSADE (Part 2)](https://hdsa.org/news/hdsa-films-presents-kings-crusade-part-2/)
- [HDSA Statement Regarding VIBRANT-HD Trial](https://hdsa.org/news/hdsa-statement-regarding-vibrant-hd-trial/) - Novartis shares disappointing update from the VIBRANT-HD trial of branaplam This afternoon, Novartis shared with HD community organizations that dosing in the VIBRANT-HD trial of the huntingtin-lowering drug branaplam has been temporarily suspended. This decision was made based on the recommendation of an independent Data Monitoring Committee (DMC). Their review of the data showed early signs
- [uniQure Announces Second Quarter 2022 Financial Results and Highlights Recent Company Progress](https://hdsa.org/news/uniqure-announces-second-quarter-2022-financial-results-and-highlights-recent-company-progress/) - uniQure Announces Second Quarter 2022 Financial Results and Highlights Recent Company Progress uniQure provided a press release today sharing that testing of high-dose AMT-130 in their HD gene therapy study has been suspended for safety reasons due to serious adverse events in some participants. So far the lower dose continues to appear safe and data
- [HDSA Films presents KING'S CRUSADE (Part 1)](https://hdsa.org/news/hdsa-films-presents-kings-crusade-part-1/)
- [Highlights from CHDI’s 17th Annual Huntington’s Disease Therapeutics Conference](https://hdsa.org/news/highlights-from-chdis-17th-annual-huntingtons-disease-therapeutics-conference/) - Highlights from CHDI’s 17th Annual Huntington’s Disease Therapeutics Conference February 28, 2022 – March 3, 2022 in Palm Springs, CA
- [HDSA Awards 2022 Berman-Topper Family HD Career Development Fellowship](https://hdsa.org/news/hdsa-awards-2022-berman-topper-family-hd-career-development-fellowship/) - HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS 2022 BERMAN-TOPPER FAMILY HD CAREER DEVELOPMENT FELLOWSHIP New York, NY, June 30, 2022 -- The Huntington’s Disease Society of America (HDSA) is pleased to announce that Dr. Sara Sameni (The Salk Institute for Biological Studies) has been awarded the HDSA Berman-Topper Family HD Career Development Fellowship for 2022. This
- [37th Annual HDSA Convention In Atlanta Brings  The Global Huntington’s Disease Community Together Again](https://hdsa.org/news/37th-annual-hdsa-convention-in-atlanta-brings-the-global-huntingtons-disease-community-together-again/) - 37TH ANNUAL HDSA CONVENTION IN ATLANTA BRINGS THE GLOBAL HUNTINGTON’S DISEASE COMMUNITY TOGETHER AGAIN New York, NY (June 14th, 2022) – On June 9th-11th, the Huntington’s Disease Society of America (HDSA) hosted the 37th Annual HDSA Convention in Atlanta, Georgia at the Atlanta Marriott Marquis. The event marks the first time an HDSA Convention featured in-person
- [uniQure Announces Update on Low-Dose Cohort in Phase I/II Clinical Trial of AMT-130 Gene Therapy for the Treatment of Huntington’s Disease](https://hdsa.org/news/uniqure-announces-update-on-low-dose-cohort-in-phase-i-ii-clinical-trial-of-amt-130-gene-therapy-for-the-treatment-of-huntingtons-disease/) - ~ Treatment generally well-tolerated with no significant safety issues related to AMT-130 in treated patients through one year of follow-up ~ ~ A mean reduction of 53.8% of mutant HTT (mHTT) observed in cerebral spinal fluid (CSF) at 12 months in evaluable patients treated with AMT-130 ~ ~ Neurofilament Light Chain (NfL) in CSF near
- [HDBuzz: How clever computers are helping us understand Huntington’s disease](https://hdsa.org/news/hdbuzz-how-clever-computers-are-helping-us-understand-huntingtons-disease/)
- [HDBuzz: A new roadmap to track Huntington’s disease progression](https://hdsa.org/news/hdbuzz-a-new-roadmap-to-track-huntingtons-disease-progression/)
- [New system that defines Huntington’s disease will ‘revolutionise’ drug trials](https://hdsa.org/news/new-system-that-defines-huntingtons-disease-will-revolutionise-drug-trials/) - NEW SYSTEM THAT DEFINES HUNTINGTON’S DISEASE WILL ‘REVOLUTIONISE’ DRUG TRIALS A novel staging framework that assesses the progression of Huntington’s disease (HD), similar to the way cancer is staged 0 to 4, has been developed by UCL scientists as part of an international consortium; paving the way for clinical trials of drugs in the earliest
- [Annexon Biosciences announces positive results from a Phase 2 clinical trial evaluating ANX005 in people with HD](https://hdsa.org/news/annexon-biosciences-announces-positive-results-from-a-phase-2-clinical-trial-evaluating-anx005-in-people-with-hd/) - (June 7, 2022) - Today, Annexon Biosciences announced positive results from a Phase 2 clinical trial evaluating ANX005 in people with Huntington’s disease (HD). ANX005 is an investigational monoclonal antibody designed to inhibit part of the immune system – specifically the complement pathway. Evidence suggests that the complement pathway plays a key role in inappropriately
- [HDSA Wins 2022 HD Hockey Classic & Raises More Than $15,000](https://hdsa.org/news/hdsa-wins-2022-hd-hockey-classic-raises-more-than-15000/) - MORE THAN $15,000 RAISED AT THE INAUGURAL HD HOCKEY CLASSIC AS TEAM HDSA TAKES HOME CHAMPIONSHIP New York, NY (May 20th, 2022) – On Saturday, May 14, 2022, the Huntington’s Disease Society of America (HDSA) was crowned champion at the inaugural Huntington's Disease Hockey Classic where they defeated the Huntington Society of Canada (HSC) by a
- [HDSA Films presents THE STORY OF E.J. + KATY](https://hdsa.org/news/hdsa-films-presents-the-story-of-e-j-katy/)
- [HDSA Announces Winners of the 2022 Donald A. King Summer Research Fellowship](https://hdsa.org/news/hdsa-announces-winners-of-the-2022-donald-a-king-summer-research-fellowship/) - HDSA ANNOUNCES WINNERS OF 2022 DONALD A. KING SUMMER RESEARCH FELLOWSHIP New York, NY (May 11, 2022) — The Huntington’s Disease Society of America (HDSA) is pleased to announce the recipients of the 2022 Donald A. King Summer Research Fellowships, a vital program to train the next-generation of scientists with research expertise in Huntington’s disease.
- [PTC Therapeutics Announces Initiation of PIVOT-HD Phase 2 Clinical Trial to Evaluate PTC518 in Patients with Huntington's Disease](https://hdsa.org/news/ptc-therapeutics-announces-initiation-of-pivot-hd-phase-2-clinical-trial-to-evaluate-ptc518-in-patients-with-huntingtons-disease/)
- [HDBuzz: A spoonful of branaplam helps the huntingtin go down](https://hdsa.org/news/hdbuzz-a-spoonful-of-branaplam-helps-the-huntingtin-go-down/)
- [HDBuzz: Day 3 of the 2022 HD Therapeutics Conference](https://hdsa.org/news/hdbuzz-day-3-of-the-2022-hd-therapeutics-conference/)
- [HDBuzz: Day 2 of the 2022 HD Therapeutics Conference](https://hdsa.org/news/hdbuzz-day-2-of-the-2022-hd-therapeutics-conference/)
- [HDBuzz: Day 1 of the 2022 HD Therapeutics Conference](https://hdsa.org/news/hdbuzz-day-1-of-the-2022-hd-therapeutics-conference/)
- [Sage Therapeutics Provides Important Update On The Clinical Development Program For Sage’s Investigational Drug, SAGE-718.](https://hdsa.org/news/sage-therapeutics-provides-important-update-on-the-clinical-development-program-for-sages-investigational-drug-sage-718/) - Sage Therapeutics is pleased to share with you an important update on the clinical development program for Sage’s investigational drug, SAGE-718. The PERSPECTIVE Program, a set of clinical studies, will evaluate the safety and effect of SAGE-718 on cognitive symptoms in people with Huntington’s disease (HD). The U.S. Food and Drug Administration (FDA) has granted
- [HDBuzz: Shining a spotlight on huntingtin: a tool to measure huntingtin-lowering in real time](https://hdsa.org/news/hdbuzz-shining-a-spotlight-on-huntingtin-a-tool-to-measure-huntingtin-lowering-in-real-time/)
- [Huntington’s Disease Society of America Awards Nearly $1.9 Million to Network of Fifty-Five HDSA Centers Of Excellence](https://hdsa.org/news/huntingtons-disease-society-of-america-awards-nearly-1-9-million-to-network-of-fifty-five-hdsa-centers-of-excellence/) - HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS NEARLY $1.9 MILLION TO NETWORK OF FIFTY-FIVE HDSA CENTERS OF EXCELLENCE New York, NY (February 9, 2022) – The Huntington’s Disease Society of America (HDSA) is proud to announce that fifty-five outstanding Huntington’s disease care facilities are being awarded the designation of HDSA Centers of Excellence for 2022. In addition to
- [uniQure Announces Dosing of First Patients in European Open-Label Clinical Trial of AMT-130 Gene Therapy in Huntington’s Disease](https://hdsa.org/news/uniqure-announces-dosing-of-first-patients-in-european-open-label-clinical-trial-of-amt-130-gene-therapy-in-huntingtons-disease/) - uniQure shared news today that the first European patients were dosed in their open-label study of AMT-130, a huntingtin-lowering gene therapy. Safety data from the first group of 10 participants in the USA is expected in the second quarter of 2022. CLICK HERE FOR FULL RELEASE
- [HDBuzz: Oral drug may change the story for huntingtin lowering](https://hdsa.org/news/hdbuzz-oral-drug-may-change-the-story-for-huntingtin-lowering/) - Researchers with PTC Therapeutics recently published exciting new findings - a promising new huntingtin lowering drug that can be taken as a pill. Will this change how we move forward with huntingtin lowering? CLICK HERE TO READ THE FULL STORY FROM HDBUZZ
- [Register Today for the 37th Annual HDSA Convention in Atlanta](https://hdsa.org/news/register-today-for-the-37th-annual-hdsa-convention-in-atlanta/)
- [HDSA Publishes 2021 Year In Review Magazine](https://hdsa.org/news/hdsa-publishes-2021-year-in-review-magazine/)
- [BREAKING NEWS: Novartis Provides Community Update On The Status Of The VIBRANT-HD Trial](https://hdsa.org/news/breaking-news-novartis-provides-community-update-on-the-status-of-the-vibrant-hd-trial/) - Novartis has provided this community update on the status of the VIBRANT-HD trial, which will test branaplam, an oral huntingtin-lowering drug, in people with HD. CLICK HERE FOR FULL STORY
- [VIDEO: Roche Community Presentation of New Tominersen Data](https://hdsa.org/news/video-roche-presentation-of-new-tominersen-data/)
- [BREAKING NEWS: Roche Has Announced That The Tominersen Research Programme Will Continue With A New Phase II Trial](https://hdsa.org/news/breaking-news-roche-has-announced-that-the-tominersen-research-programme-will-continue-with-a-new-phase-ii-trial/) - Based on findings from the GENERATION HD1 study in adults with manifest HD, Roche has announced that the tominersen research programme will continue with a new Phase II trial. CLICK HERE FOR FULL RELEASE
- [Annexon Biosciences Reports Promising Interim Phase 2 Data Showing Improvement in Clinical Measures with ANX005 in Huntington’s Disease Following Six-Month Treatment](https://hdsa.org/news/annexon-biosciences-reports-promisinginterimphase-2-data-showingimprovement-in-clinical-measures-with-anx005in-huntingtons-disease-following-six-month-treatment/) - Annexon Biosciences Reports Promising Interim Phase 2 Data Showing Improvement in Clinical Measures with ANX005 in Huntington’s Disease Following Six-Month Treatment ANX005 Has Been Generally Well-Tolerated and Has Shown Full Target Engagement of C1qin the CSF. CLICK HERE FOR FULL STORY
- [VIDEO: Happy Holidays from Louise Vetter](https://hdsa.org/news/video-happy-holidays-from-louise-vetter/)
- [uniQure Announces Clinical Update on First Patients in Phase I/II Clinical Trial of AMT-130 Gene Therapy for the Treatment of Huntington’s Disease](https://hdsa.org/news/uniqure-announces-clinical-update-on-first-patients-in-phase-i-ii-clinical-trial-of-amt-130-gene-therapy-for-the-treatment-of-huntingtons-disease/) - uniQure Announces Clinical Update on First Patients in Phase I/II Clinical Trial of AMT-130 Gene Therapy for the Treatment of Huntington’s Disease ~ Treatment was well tolerated with no significant safety issues related to AMT-130 in first two treated patients through one year of follow-up ~ ~ Neurofilament Light Chain (NfL) rose as expected immediately
- [Neurocrine Biosciences Announces Positive Phase 3 Data for KINECT-HD Study Evaluating Valbenazine for Chorea Associated with Huntington's Disease](https://hdsa.org/news/neurocrine-biosciences-announces-positive-phase-3-data-for-kinect-hd-study-evaluating-valbenazine-for-chorea-associated-with-huntington-disease/) - Neurocrine Biosciences Announces Positive Phase 3 Data for KINECT-HD Study Evaluating Valbenazine for Chorea Associated with Huntington's Disease Highly Statistically Significant Reduction in Chorea Movements (p < 0.0001) as Measured by the Unified Huntington's Disease Rating Scale (UHDRS®) Total Maximal Chorea (TMC) Score Placebo-Adjusted Mean Reduction in TMC Score of 3.2 Units in Valbenazine-Treated Patients
- [The Marker is Now Available! Read HDSA's 2021 Research Report](https://hdsa.org/news/the-marker-is-now-available-read-hdsas-2021-research-report/)
- [Dr. Jeff Carroll & Dr. Beth Hoffman Join HDSA's National Board of Trustees](https://hdsa.org/news/dr-jeff-carroll-dr-beth-hoffman-join-hdsas-national-board-of-trustees/) - DR. JEFF CARROLL AND DR. BETH HOFFMAN JOIN HUNTINGTON’S DISEASE SOCIETY OF AMERICA NATIONAL BOARD OF TRUSTEES New York, NY (December 3, 2021) — The Huntington’s Disease Society of America (HDSA) is proud to announce that Jeff Carroll, PhD and Beth Hoffman, PhD have been elected to the Society’s National Board of Trustees. “On behalf
- [HDSA Coffee Walk with Jennifer Simpson](https://hdsa.org/news/hdsa-coffee-walk-with-jennifer-simpson/)
- [TAKE ACTION: HDSA's 7 Days of Action](https://hdsa.org/news/take-action-hdsas-7-days-of-action/)
- [HDSA Films presents THE DOHERTYS: FINDING THE FUNNY](https://hdsa.org/news/hdsa-films-presents-the-dohertys-finding-the-funny/)
- [HDSA Applauds Chairman Neal on Inclusion of Paid Family & Medical Leave in Build Back Better Act](https://hdsa.org/news/hdsa-applauds-chairman-neal-on-inclusion-of-paid-family-medical-leave-in-build-better-back-act/) - HDSA APPLAUDS CHAIRMAN NEAL ON INCLUSION OF PAID FAMILY & MEDICAL LEAVE IN BUILD BACK BETTER ACT November 10, 2021 -- The Huntington’s Disease Society of America (HDSA) applauds efforts by Chairman Richard Neal to fight for the inclusion of paid family and medical leave in the Build Back Better Act. After significant negotiation, the
- [More than $64,000 Raised at the TCS New York City Marathon to Support HDSA](https://hdsa.org/news/more-than-64000-raised-at-the-tcs-new-york-city-marathon-to-support-hdsa/) - MORE THAN $64,000 RAISED AT THE TCS NEW YORK CITY MARATHON TO SUPPORT THE HUNTINGTON’S DISEASE SOCIETY OF AMERICA New York, NY (November 10, 2021) — Eighteen runners from across the United States participated in the 50th Anniversary running of the TCS New York City Marathon and helped raise more than $64,000 to support the Huntington’s Disease
- [HDSA Welcomes Dr. Arik Johnson as New Chief Mission Officer ](https://hdsa.org/news/hdsa-welcomes-dr-arik-johnson-as-new-chief-mission-officer/) - NEW YORK, NY (November 1, 2021) -- Arik Johnson, PsyD has joined the Huntington’s Disease Society of America (HDSA) as Chief Mission Officer. He is a licensed clinical psychologist who has spent more than 17 years caring for families affected by Huntington’s disease (HD) and is highly respected leader in HD advocacy and care. A
- [HDSA Awards $749,000 to HD Human Biology Projects](https://hdsa.org/news/hdsa-awards-749000-to-hd-human-biology-projects/) - HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS $728,000 TO HUNTINGTON’S DISEASE HUMAN BIOLOGY PROJECTS New York, NY, October 14, 2021 — Today, the Huntington’s Disease Society of America (HDSA) announced that five research grants totally more than $728,000 have been awarded under the Society’s largest research initiative, the HDSA Huntington’s Disease Human Biology Project. These grants represent
- [Virtual 7th Annual Freeze HD Raises More Than $211,000 To Support The Fight Against Huntington’s Disease](https://hdsa.org/news/virtual-7th-annual-freeze-hd-raises-more-than-211000-to-support-the-fight-against-huntingtons-disease/) - Los Angeles, CA (October 19, 2021) – On Saturday, October 16th, the stars came out to support the Huntington’s Disease Society of America (HDSA) at the 7th Annual Freeze HD event. Hosted live from Los Angeles by Kate Miner, Scott Porter and Jason Ritter, more than $211,000 was raised to support HDSA’s mission to improve
- [HDBuzz: Q&A with Roche about GENERATION-HD1](https://hdsa.org/news/hdbuzz-qa-with-roche-about-generation-hd1/)
- [HDSA Publishes 2020 Annual Report](https://hdsa.org/news/hdsa-publishes-2020-annual-report/) - CLICK HERE TO VIEW HDSA'S 2020 ANNUAL REPORT
- [Sage Therapeutics Receives Fast Track Designation for SAGE-718 for the Treatment of Huntington’s Disease](https://hdsa.org/news/sage-therapeutics-receives-fast-track-designation-for-sage-718-for-the-treatment-of-huntingtons-disease/) - CAMBRIDGE, Mass. - Sage Therapeutics, Inc., a biopharmaceutical company committed to developing novel therapies with the potential to transform the lives of people with debilitating disorders of the brain, today announced that the U.S. Food and Drug Administration (FDA) has granted Fast Track Designation to SAGE-718 for development as a potential treatment for Huntington’s disease
- [Community Statement from Roche-Genentech Regarding GENERATION-HD1 Data](https://hdsa.org/news/community-statement-from-roche-genentech-regarding-generation-hd1-data/)
- [HDBuzz: Creation of a molecular “dimmer switch” advances gene editing](https://hdsa.org/news/hdbuzz-creation-of-a-molecular-dimmer-switch-advances-gene-editing/) - A new system has been developed that allows researchers to fine-tune gene expression with oral drugs, work that provides a powerful tool for gene editing. CLICK HERE TO READ THE LATEST STORY FROM HDBUZZ
- [HDBuzz: Unpacking Recent Gene Therapy Press](https://hdsa.org/news/hdbuzz-unpacking-recent-gene-therapy-press/) - Voyager Therapeutics is shifting towards a new technology to deliver gene therapy and away from a planned HD clinical trial. But this could lead to less invasive drugs in the long run, and many other companies are working on HD gene therapies. CLICK HERE FOR FULL STORY FROM HDBUZZ
- [Update from Voyager Therapeutics](https://hdsa.org/news/update-from-voyager-therapeutics/) - Voyager Therapeutics issued a press release today about their finances, recent leadership transitions, and importantly, a major shift in their scientific pipeline. The announcement centered around a proprietary technology called TRACER, which could allow Voyager to develop less invasive delivery methods (like IV injection) for HD gene therapies. Today’s press release shared that Voyager will
- [HDSA Films Presents The Osborns: Our Legacy](https://hdsa.org/news/hdsa-films-presents-the-osborns-our-legacy/)
- [VIDEO: Watch Kala Booth Discuss Huntington's Disease & the HD Parity Act In Front of Congress](https://hdsa.org/news/video-watch-kala-booth-discuss-huntingtons-disease-the-hd-parity-act-in-front-of-congress/) - On July 29, 2021, the House Energy and Commerce Subcommittee on Health held a vitally important hearing spotlighting Huntington’s disease (HD). Kala Booth, an HD patient and caregiver, testified to the distinct challenges of living with HD, its multi-generational impact, and the importance of improving access to vital health benefits as outlined in the bipartisan
- [HDSA Applauds E&C Subcommittee for Highlighting Burden of Huntington’s Disease, Reiterates Call to Pass Bipartisan HD Parity Act](https://hdsa.org/news/hdsa-applauds-ec-subcommittee-for-highlighting-burden-of-huntingtons-disease-reiterates-call-to-pass-bipartisan-hd-parity-act/) - HDSA Applauds E&C Subcommittee for Highlighting Burden of Huntington’s Disease, Reiterates Call to Pass Bipartisan HD Parity Act HD Patient Kala Booth Urges Passage of HD Parity Act to Fix “Broken System” for HD Patients. Washington, DC (July 29, 2021) – The Huntington’s Disease Society of America (HDSA) applauds the House Energy and Commerce Subcommittee
- [HDSA Publishes 2020 Year In Review Magazine](https://hdsa.org/news/hdsa-publishes-2020-year-in-review-magazine/) - CLICK HERE TO VIEW HDSA'S 2020 YEAR IN REVIEW MAGAZINE
- [HDBuzz: A First For CRISPR Gene Editing Could Have Wider Applications For Human Disease](https://hdsa.org/news/hdbuzz-a-first-for-crispr-gene-editing-could-have-wider-applications-for-human-disease/)
- [NOW AVAILABLE: Virtual 36th Annual HDSA Convention Recorded Sessions](https://hdsa.org/news/now-available-virtual-36th-annual-hdsa-convention-recorded-sessions/)
- [HDSA Awards Two Berman-Topper Family HD Career Development Fellowships](https://hdsa.org/news/hdsa-awards-two-berman-topper-family-hd-career-development-fellowships/) - (New York, NY) June 12, 2021 -- The Huntington’s Disease Society of America (HDSA) is pleased to announce that Dr. Eduardo Silva Ramos (Max Delbrück Center for Molecular Medicine, Berlin, Germany) and Dr. Adys Mendizabal (University of California at Los Angeles) have been awarded HDSA Berman-Topper Family HD Career Development Fellowships for 2021. These prestigious
- [Virtual 36th Annual HDSA Convention Welcomes Thousands from Around the Globe](https://hdsa.org/news/virtual-36th-annual-hdsa-convention-welcomes-thousands-from-around-the-globe/) - (New York, NY ) June 14, 2021 - Nearly 2,100 registrants from more than 33 countries participated in the Virtual 36th Annual HDSA Convention this past weekend. The four-day virtual event featured world-class presentations on the latest in Huntington’s disease research and care. Despite not being able to meet in-person, the Virtual HDSA Convention allowed
- [HDSA Partners with PatientsLikeMe to Create an Integrated Online Community for both Patients & Caregivers](https://hdsa.org/news/hdsa-partners-with-patientslikeme-to-create-an-integrated-online-community-for-both-patients-and-caregivers/) - (Boston, MA) June 10, 2021 – The world's largest integrated community, health management, and real-world data platform PatientsLikeMe (PLM) announced today it is partnering with The Huntington’s Disease Society of America to launch a virtual community for those living with Huntington’s disease (HD) and for those caring for individuals living with HD. This tailored community
- [uniQure’s AMT-130 for Treatment of Huntington’s Disease Advances in Phase I/II Clinical Trial](https://hdsa.org/news/uniqures-amt-130-for-treatment-of-huntingtons-disease-advances-in-phase-i-ii-clinical-trial/) - uniQure has announced that they will move forward with the Phase I/II Clinical Trial of AMT-130, a gene therapy candidate for treatment of HD administered in a single dose to deep brain tissues with MRI-guided neurosurgical delivery. After careful review of safety data for the first enrolled cohort of ten patients, the independent Data Safety
- [HDSA RESEARCH WEBINAR: Roche Presents GENERATION-HD1 Data](https://hdsa.org/news/hdsa-research-webinar-roche-presents-generation-hd1-data/)
- [HDBuzz: Day 3 Recap from the 2021 HD Therapeutics Conference](https://hdsa.org/news/hdbuzz-day-3-recap-from-the-2021-hd-therapeutics-conference/)
- [HDBuzz: Day 2 Recap from the 2021 HD Therapeutics Conference](https://hdsa.org/news/hdbuzz-day-2-recap-from-the-2021-hd-therapeutics-conference/)
- [HDBuzz: Day 1 Recap from the 2021 HD Therapeutics Conference](https://hdsa.org/news/hdbuzz-day-1-recap-from-the-2021-hd-therapeutics-conference/)
- [HDSA Announces Winners of 2021 Donald A. King Summer Research Fellowship](https://hdsa.org/news/hdsa-announces-winners-of-2021-donald-a-king-summer-research-fellowship/) - New York, NY (April 26, 2021) — The Huntington’s Disease Society of America (HDSA) is pleased to announce the recipients of the 2021 Donald A. King Summer Research Fellowships, a vital program to train the next-generation of scientists with research expertise in Huntington’s disease. Huntington’s disease is a rare, hereditary neurodegenerative disorder currently affecting approximately
- [Now Accepting 2021 National Award Nominations](https://hdsa.org/news/now-accepting-2021-national-award-nominations/)
- [uniQure Announces Completion of Enrollment in First Cohort of Phase I/II Clinical Trial of AMT-130](https://hdsa.org/news/uniqure-announces-completion-of-enrollment-in-first-cohort-of-phase-i-ii-clinical-trial-of-amt-130/)
- [Register Today For Free | Virtual 36th Annual HDSA Convention](https://hdsa.org/news/register-today-for-free-virtual-36th-annual-hdsa-convention/)
- [HDBuzz: Sad News From Roche](https://hdsa.org/news/hdbuzz-sad-news-from-roche/)
- [HDBuzz: Wave Life Sciences PRECISION-HD Trials](https://hdsa.org/news/hdbuzz-wave-life-sciences-precision-hd-trials/)
- [Disappointing Update from Wave Regarding PRECISION-HD Clinical Trials](https://hdsa.org/news/disappointing-update-from-wave-regarding-precision-hd-clinical-trials/)
- [VIDEO: A Message from Roche about the GENERATION-HD1 Trial News](https://hdsa.org/news/video-a-message-from-roche-about-the-generation-hd1-trial-news/)
- [RESEARCH WEBINAR | Generation-HD1 Trial News: What does this mean and where do we go from here?](https://hdsa.org/news/research-webinar-generation-hd1-trial-news-what-does-this-mean-and-where-do-we-go-from-here/)
- [Roche Provides a Disappointing Update on Tominersen](https://hdsa.org/news/roche-provides-a-disappointing-update-on-tominersen/)
- [HDSA Reintroduces the HD Parity Act](https://hdsa.org/news/hdsa-reintroduces-the-hd-parity-act/) - HUNTINGTON’S DISEASE SOCIETY OF AMERICA REINTRODUCES THE HUNTINGTON’S DISEASE PARITY ACT New York, NY (March 19, 2021) – The Huntington’s Disease Society of America (HDSA) is thrilled to announce that Senators Kirsten Gillibrand (D-NY) and Dr. Bill Cassidy (R-LA), along with Representatives Adam Kinzinger (R-IL) and Bill Pascrell, Jr (D-NJ) have reintroduced the Huntington’s Disease Parity
- [HDSA Films presents My Father, My Hero](https://hdsa.org/news/hdsa-films-presents-my-father-my-hero/)
- [Now Accepting 2021 Human Biology Project Letters of Intent](https://hdsa.org/news/now-accepting-2021-human-biology-project-letters-of-intent/) - Despite the identification of the gene responsible for Huntington's disease (HD) 25 years ago, there is not yet an effective treatment to slow or stop the progression of symptoms. While remarkable advances in HD biology have been made using animal models, the development of effective therapies requires research in humans. As a result, the Huntington's
- [HDBuzz: Vaccines and HD](https://hdsa.org/news/hdbuzz-vaccines-and-hd/)
- [The 36th Annual HDSA Convention Goes Virtual!](https://hdsa.org/news/the-36th-annual-hdsa-convention-goes-virtual/) - Dear Friends of HDSA, I hope that you and your family are well as we continue to navigate through the COVID-19 pandemic. Despite all of the challenges of the past year, HDSA’s mission work – to improve the lives of everyone affected by Huntington’s disease and their families – has continued to bring important educational
- [HDSA Expands Centers of Excellence Program to Fifty-Four Sites](https://hdsa.org/news/hdsa-expands-centers-of-excellence-program-to-fifty-four-sites/) - Huntington’s Disease Society of America Announces Fifty-Four 2021 HDSA Centers of Excellence New York, NY (February 2, 2021) – The Huntington’s Disease Society of America (HDSA) is proud to announce that fifty-four outstanding Huntington’s disease care facilities are being awarded the designation of HDSA Centers of Excellence for 2021. The HDSA Centers of Excellence are
- [Dr. Victor Sung Named Chair of HDSA’s National Board of Trustees](https://hdsa.org/news/dr-victor-sung-named-chair-of-hdsas-national-board-of-trustees/) - Angela Allen, Mark Coe, Dr. Erin Furr Stimming, Kelsey Porter & Dominique Thomas added to HDSA’s National Board of Trustees NEW YORK, NY (January 6, 2021) – The Huntington’s Disease Society of America (HDSA) is excited to announce that Dr. Victor Sung has been appointed Chair of HDSA’s National Board of Trustees. Dr. Sung replaces
- [Happy New Year!](https://hdsa.org/news/happy-new-year/)
- [NEW EPISODE: Here's The Deal with Dick Johnson Is Dead](https://hdsa.org/news/new-episode-heres-the-deal-with-dick-johnson-is-dead/)
- [HDSA Publishes The Marker: 2020 Research Report](https://hdsa.org/news/hdsa-publishes-the-marker-2020-research-report/)
- [HDSA Awards Four HD Human Biology Project Fellowships For 2020](https://hdsa.org/news/hdsa-awards-four-hd-human-biology-project-fellowships-for-2020/) - New York, NY, December 3, 2020 -- Today, the Huntington’s Disease Society of America (HDSA) announced that four research grants have been awarded under the Society’s largest research initiative, the HDSA Huntington’s Disease Human Biology Project. These grants represent HDSA’s patient-centric research focus which brings basic and clinical researchers together to facilitate Huntington’s disease (HD)
- [VIRTUAL 6TH ANNUAL FREEZE HD RAISES $200,000 FOR HDSA](https://hdsa.org/news/virtual-6th-annual-freeze-hd-raises-200000-for-hdsa/) - VIRTUAL 6TH ANNUAL FREEZE HD RAISES $200,000 FOR THE HUNTINGTON’S DISEASE SOCIETY OF AMERICA Hosted live by Actor Scott Porter, Celebrities Rallied to Support the Fight against Huntington’s Disease. New York, NY (September 28, 2020) – A global audience of nearly 5,000 tuned into the Virtual 6th Annual Freeze HD event on Saturday, September 26th
- [HDBUZZ: Updates from the EHDN Plenary Meeting 2020](https://hdsa.org/news/hdbuzz-updates-from-the-ehdn-plenary-meeting-2020/)
- [HDSA Publishes 2019 Annual Report](https://hdsa.org/news/hdsa-publishes-2019-annual-report/)
- [HDBuzz: When genes are unstable: Targeting somatic instability in HD](https://hdsa.org/news/hdbuzz-when-genes-are-unstable-targeting-somatic-instability-in-hd/)
- [NEW EPISODE: Here's The Deal with Talking to Kids about Huntington's Disease](https://hdsa.org/news/new-episode-heres-the-deal-with-talking-to-kids-about-huntingtons-disease/)
- [HDBuzz: Changes In Brain Development Mean Some Brain Regions May Be Slacking Off](https://hdsa.org/news/hdbuzz-changes-in-brain-development-mean-some-brain-regions-may-be-slacking-off/)
- [HDBuzz: Caution Urged for the Use of Gene-Editing Technology CRISPR](https://hdsa.org/news/hdbuzz-caution-urged-for-the-use-of-gene-editing-technology-crispr/)
- [Anne Leserman announces her retirement from HDSA](https://hdsa.org/news/anne-leserman-msw-announces-her-retirement-from-hdsa/) - After 17 years of tireless work on behalf of HD families while at HDSA and the HDSA Center of Excellence at the University of Iowa, HDSA's Assistant Director of Community Services, Anne Leserman, has decided to retire on September 3, 2020 to spend more time in Seattle, Washington with her family and new puppy, Gracie.
- [Submit Your Letter of Interest to Become a 2021 HDSA Center of Excellence](https://hdsa.org/news/submit-your-letter-of-interest-to-become-a-2021-hdsa-center-of-excellence/)
- [NEW EPISODE: Here's The Deal with End  of Life & HD](https://hdsa.org/news/new-episode-heres-the-deal-with-end-of-life-hd/)
- [HD & COVID-19 PANDEMIC RESOURCES](https://hdsa.org/news/hd-covid-19-pandemic-resources/) - We know the COVID-19 pandemic is a difficult time for all and may be particularly challenging for those living with or supporting someone with Huntington’s disease. HDSA is committed to sharing the latest updates and resources as we face this public health crisis together. Below please find resources and communications from HDSA related to the
- [Huntington's Disease Featured on ABC News Live Prime](https://hdsa.org/news/huntingtons-disease-featured-on-abc-news-live-prime/)
- [HDSA Center of Excellence at Ohio State Conducts First Gene Therapy Clinical Trial for HD](https://hdsa.org/news/hdsa-center-of-excellence-at-ohio-state-conducts-first-gene-therapy-clinical-trial-for-hd/)
- [uniQure Announces First Two Patients Treated in Phase I/II Clinical Trial of AMT-130 for the Treatment of Huntington’s Disease](https://hdsa.org/news/uniqure-announces-first-two-patients-treated-in-phase-i-ii-clinical-trial-of-amt-130-for-the-treatment-of-huntingtons-disease/)
- [Virtual 35th Annual HDSA Convention Welcomes Thousands from Across the Globe ](https://hdsa.org/news/virtual-35th-annual-hdsa-convention-welcomes-thousands-from-across-the-globe/) - New York, NY (June 10, 2020) – Due to the COVID-19 pandemic, the Huntington’s Disease Society of America (HDSA) transitioned the 35th Annual HDSA Convention, which was scheduled to be in New Orleans, into a virtual event on June 4-7, 2020. In addition to overcoming the challenges of the pandemic, the unique virtual event allowed
- [Virtual HDSA Convention Recorded Sessions Now Available](https://hdsa.org/news/virtual-hdsa-convention-recorded-sessions-now-available/)
- [HDSA Supports The Fight Against Racism](https://hdsa.org/news/hdsa-supports-the-fight-against-racism/) - The Huntington's Disease Society of America is deeply committed to supporting the fight against racism. During these challenging times, we could sit back and say, 'this is not within our mission work', but thinking like that is part of the problem. It is our responsibility to use our platforms and our privileges to encourage change
- [Register for the Virtual 35th Annual HDSA Convention](https://hdsa.org/news/preregister-for-the-virtual-35th-annual-hdsa-convention/)
- [Postcard from Palm Springs: Highlights from the 2020 CHDI HD Therapeutics Conference](https://hdsa.org/news/postcard-from-palm-springs-highlights-from-the-2020-chdi-hd-therapeutics-conference/)
- [HDSA Awards Berman-Topper Family HD Career Development Fellowship](https://hdsa.org/news/hdsa-awards-berman-topper-family-hd-career-development-fellowship-2/) - New York, NY, May 27, 2020 -- The Huntington’s Disease Society of America (HDSA) is pleased to announce that Dr. Yasaman Gholamalipour (University of Massachusetts Medical School) has been awarded the HDSA Berman-Topper Family HD Career Development Fellowship for 2020. This prestigious fellowship, made possible due to the generosity of the Berman and Topper families,
- [International Huntington's Disease Awareness Day - May 15th](https://hdsa.org/news/international-huntingtons-disease-awareness-day-may-15th/)
- [HDSA Announces Winners of  2020 Donald A. King Summer Research Fellowship](https://hdsa.org/news/hdsa-announces-winners-of-2020-donald-a-king-summer-research-fellowship/) - New York, NY (May 7, 2020) -- The Huntington’s Disease Society of America (HDSA) is pleased to announce the recipients of the 2020 Donald A. King Summer Research Fellowships, a vital program to train the next-generation of scientists with research expertise in Huntington’s disease. Huntington’s disease is a rare, hereditary neurodegenerative disorder currently affecting approximately
- [COMMUNITY STATEMENT: Update On Tominersen (RG6042)](https://hdsa.org/news/community-statement-update-on-tominersen-rg6042/)
- [NEW EPISODE: Here's The Deal with Self-Care](https://hdsa.org/news/new-episode-heres-the-deal-with-self-care/)
- [HDBuzz: What does COVID-19 mean for Huntington’s disease families and HD research?](https://hdsa.org/news/hdbuzz-what-does-covid-19-mean-for-huntingtons-disease-families-and-hd-research/)
- [NEW EPISODE: Here's The Deal with COVID-19 & HD](https://hdsa.org/news/new-episode-heres-the-deal-with-covid-19-hd/)
- [FREQUENTLY ASKED QUESTIONS: Disability & COVID-19](https://hdsa.org/news/frequently-asked-questions-disability-covid-19/)
- [Community Statement](https://hdsa.org/news/community-statement/)
- [NEW EPISODE: Here's The Deal with Disability](https://hdsa.org/news/new-episode-heres-the-deal-with-disability/)
- [HDSA Community Update: HDSA's 35th Annual Convention Goes Virtual!](https://hdsa.org/news/hdsa-community-update-hdsas-35th-annual-convention-goes-virtual/)
- [HDSA Community Update: HD & COVID-19](https://hdsa.org/news/hdsa-community-update-hd-covid-19/)
- [HDSA Community Update](https://hdsa.org/news/hdsa-community-update/)
- [HDBuzz: New Molecule Can Reverse The Huntington's Disease Mutation In Lab Models](https://hdsa.org/news/hdbuzz-new-molecule-can-reverse-the-huntingtons-disease-mutation-in-lab-models/)
- [HDSA Convention Community Statement](https://hdsa.org/news/hdsa-convention-community-statement/)
- [HDBuzz: Day 3 at HD Therapeutics Conference](https://hdsa.org/news/hdbuzz-day-3-at-hd-therapeutics-conference/)
- [HDSA Films Presents ALLIE & JOE](https://hdsa.org/news/hdsa-films-presents-allie-joe/)
- [HDBuzz: Day 2 at HD Therapeutics Conference](https://hdsa.org/news/hdbuzz-day-2-at-hd-therapeutics-conference/)
- [HDBuzz: Day 1 at HD Therapeutics Conference](https://hdsa.org/news/hdbuzz-day-1-at-hd-therapeutics-conference/)
- [HDSA Announces Fifty 2020 Centers of Excellence](https://hdsa.org/news/hdsa-announces-fifty-2020-centers-of-excellence/) - New York, NY (February 5, 2020) – The Huntington’s Disease Society of America (HDSA) is proud to announce that fifty outstanding Huntington’s disease (HD) care facilities are being awarded the designation of HDSA Centers of Excellence for 2020. The 2020 HDSA Centers of Excellence program expanded to 50 Centers from 47 in 2019, and from
- [HDSA Publishes 2019 Year In Review Magazine](https://hdsa.org/news/hdsa-publishes-2019-year-in-review-magazine/)
- [REGISTER TODAY! 35th Annual HDSA Convention in New Orleans](https://hdsa.org/news/register-today-35th-annual-hdsa-convention-in-new-orleans/)
- [Community Letter from Wave Life Sciences Regarding Topline Results from PRECISION-HD2](https://hdsa.org/news/community-letter-from-wave-life-sciences-regarding-topline-results-from-precision-hd2/) - December 30, 2019 Dear global HD community, Today we announced encouraging topline results from PRECISION-HD2, our ongoing Phase 1b/2a placebo-controlled trial evaluating the investigational therapy WVE-120102 targeting SNP2. In an analysis of the study results, we compared all patients treated with WVE-120102 to patients who received placebo and saw a statistically significant reduction of 12.4%
- [Wave Life Sciences Announces Topline Data and Addition of Higher Dose Cohort in Ongoing Phase 1b/2a PRECISION-HD2 Trial in Huntington’s Disease](https://hdsa.org/news/wave-life-sciences-announces-topline-data-and-addition-of-higher-dose-cohort-in-ongoing-phase-1b-2a-precision-hd2-trial-in-huntingtons-disease/) - WVE-120102 demonstrates statistically significant reduction in disease-causing mutant HTT protein in CSF vs. placebo No difference in total HTT protein or neurofilament light chain in treated patients vs. placebo Additional cohort expected to initiate in January 2020 Wave to host investor conference call and webcast at 8:00 a.m. ET today CAMBRIDGE, Mass., Dec. 30, 2019
- [HDSA Earns Fourth Consecutive 4-Star Rating From Charity Navigator](https://hdsa.org/news/hdsa-earns-fourth-consecutive-4-star-rating-from-charity-navigator/) - The Huntington's Disease Society of America has earned the coveted 4-star rating for demonstrating strong financial health and commitment to accountability and transparency. "We are proud to announce Huntington's Disease Society of America has earned our fourth consecutive 4-star rating. This is our highest possible rating and indicates that your organization adheres to sector best
- [HDSA Awards Inaugural Clinical Research Pilot Grants to Four Centers of Excellence](https://hdsa.org/news/hdsa-awards-inaugural-clinical-research-pilot-grants-to-four-centers-of-excellence/) - New York, NY (December 23, 2019) – The Huntington’s Disease Society of America (HDSA) has awarded four grants under a new research initiative, the HDSA Center of Excellence Clinical Research Pilot Program. These grants, totaling $50,000, represent HDSA’s patient-centric research focus by fostering novel clinical research projects within the HDSA Center of Excellence network. The
- [HDSA Listed As Top 10 Volunteer Opportunities In New York City By Great Nonprofits](https://hdsa.org/news/hdsa-listed-in-top-10-volunteer-opportunities-in-new-york-city-by-great-nonprofits/) - “I am a daughter whose mother was diagnosed with HD, which I knew nothing about until I found this organization. It not only answered the billions of questions I had, but also provided me with emotional support from now friends. It gives me a sense of security knowing I am not the only person in
- [2018 HDSA Annual Report](https://hdsa.org/news/2018-hdsa-annual-report/)
- [HDSA Welcomes Three Trustees to National Board](https://hdsa.org/news/hdsa-welcomes-three-trustees-to-national-board/) - New York, NY (November 27, 2019) – The Huntington’s Disease Society of America (HDSA) is excited to welcome three new members to the Society’s national Board of Trustees. Wendy Erler is the Vice President of STAR and Patient Insights and Advocacy at Alexion Pharmaceuticals where she is responsible for building an enterprise holistic solution model to gather and
- [HDSA Publishes The Marker - 2019 Research Report](https://hdsa.org/news/hdsa-publishes-the-marker-2019-research-report/) - The Marker - 2019 Research Report
- [HDSA's New York City Marathon Team Raises More Than $133,000 To Support The Fight Against HD](https://hdsa.org/news/hdsas-new-york-city-marathon-team-raises-more-than-133000-to-support-the-fight-against-hd/) - New York, NY, November 6, 2019 – The Huntington’s Disease Society of America (HDSA) 2019 New York City Marathon Team featured twenty-five runners from twenty different States all willing to take on 26.2 miles to support the fight against Huntington’s disease (HD), a rare neurological disease. To date, the HDSA team raised more than $133,000
- [5th Annual Freeze HD Raises More Than $420,000 To Support HDSA](https://hdsa.org/news/5th-annual-freeze-hd-raises-more-than-420000-to-support-hdsa/) - Kelsey & Scott Porter honored at star-studded event in Los Angeles. New York, NY (October 1, 2019)– On Saturday, September 28th, four hundred guests attended the 5thAnnual Freeze HD at Avalon Hollywood where more than $420,000 was raised to support the Huntington’s Disease Society of America (HDSA). This star-studded event was hosted by actor Lamorne
- [HDSA Awards Five 2019 HD Human Biology Project Fellowships](https://hdsa.org/news/hdsa-awards-five-2019-hd-human-biology-project-fellowships/) - New York, NY, October 15, 2019 -- Today, the Huntington’s Disease Society of America (HDSA) announced that five research grants have been awarded under the Society’s largest research initiative, the HDSA Huntington’s Disease Human Biology Project. These grants, totaling $575,000, represent HDSA’s patient-centric research focus which brings basic and clinical researchers together to facilitate Huntington’s
- [Community Statement from Roche / Genentech](https://hdsa.org/news/community-statement-from-roche-genentech/) - 14 October 2019 Update on the Phase III GENERATION HD1 study Dear global HD patient community, Today we are pleased to announce that we are increasing the total enrolment in the GENERATION HD1 study (NCT03761849) from 660 to 801 participants worldwide. We believe that increasing enrolment now - before study recruitment closes - keeps the
- [View 5th Annual Freeze HD Red Carpet and Event Photos](https://hdsa.org/news/view-5th-annual-freeze-hd-photos/) - " order_by="sortorder" order_direction="ASC" returns="included" maximum_entity_count="500"]
- [Community Statement from uniQure](https://hdsa.org/news/community-statement-from-uniqure/) - Greetings to everyone in the Huntington’s disease community, My name is Dan Leonard, and I am the Senior Director of Patient Advocacy here at uniQure. On behalf of the uniQure Huntington’s disease (HD)team, I’m honored to introduce our company and our gene therapy clinical development program to all of you. uniQure has a long history
- [HDBUZZ: Exciting New Huntingtin Lowering Tool Described](https://hdsa.org/news/hdbuzz-exciting-new-huntingtin-lowering-tool-described/)
- [Now Accepting 2020 HDSA Centers of Excellence Letters of Interest](https://hdsa.org/news/now-accepting-2020-hdsa-centers-of-excellence-letters-of-interest/)
- [VIDEO: Here's The Deal With Caregiving While Positive](https://hdsa.org/news/video-heres-the-deal-with-caregiving-while-positive/)
- [VIDEO: 34th Annual HDSA Convention Recap](https://hdsa.org/news/video-34th-annual-hdsa-convention-recap/)
- [HDSA Sets New Attendance Record at the 34th Annual HDSA Convention in Boston](https://hdsa.org/news/hdsa-sets-new-attendance-record-at-the-34th-annual-hdsa-convention-in-boston/) - HUNTINGTON'S DISEASE SOCIETY OF AMERICA SETS NEW ATTENDANCE RECORD AT THE 34TH ANNUAL HDSA CONVENTION 1,225 GUESTS FROM AROUND THE WORLD JOINED THE HDSA FAMILY IN BOSTON New York, NY (July 1, 2019) – The 34th Annual Huntington’s Disease Society of America (HDSA) Convention was held in Boston, Massachusetts on June 27th-29th at the Boston
- [HDSA & CHDI Foundation Launch HD Legacy to Promote Brain Donation for HD Research](https://hdsa.org/news/hdsa-chdi-foundation-launch-hd-legacy-to-promote-brain-donation-for-hd-research/) - HUNTINGTON'S DISEASE SOCIETY OF AMERICA & CHDI FOUNDATION LAUNCH HD LEGACY TO PROMOTE BRAIN DONATION FOR HD RESEARCH New York, NY (June 20, 2019) – In response to a growing need to study exactly what Huntington’s disease (HD) does to the human brain, the Huntington’s Disease Society of America (HDSA) and CHDI Foundation are pleased
- [HDSA Adds Allison Bartlett as Manager of Disability Programs](https://hdsa.org/news/hdsa-adds-allison-bartlett-as-manager-of-disability-programs/) - HUNTINGTON'S DISEASE SOCIETY OF AMERICA ADDS ALLISON BARTLETT AS MANAGER OF DISABILITY PROGRAMS New York, NY (June 11, 2019) – The Huntington’s Disease Society of America (HDSA) is excited to welcome Allison Bartlett, Esq. to the newly created position of Manager of Disability Programs. Ms. Bartlett is a disability attorney who specializes in guiding people
- [HDSA Awards 2019 Berman-Topper Family HD Career Development Fellowships](https://hdsa.org/news/hdsa-awards-2019-berman-topper-family-hd-career-development-fellowships/) - HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS BERMAN-TOPPER FAMILY HD CAREER DEVELOPMENT FELLOWSHIPS Researchers from Canada and United Kingdom awarded prestigious grant. New York, NY (May 31, 2019) -- The Huntington’s Disease Society of America (HDSA) is pleased to announce that Lauren Byrne (University College London) and Dr. Nicholas Caron (University of British Columbia) have been
- [Huntington's Disease Parity Act Is Reintroduced](https://hdsa.org/news/huntingtons-disease-parity-act-is-reintroduced/)
- [HDBUZZ: Fresh Updates from First Huntingtin Lowering Study Publication](https://hdsa.org/news/hdbuzz-fresh-updates-from-first-huntingtin-lowering-study-publication/)
- [Postcard from Palm Springs: Highlights from the 2019 CHDI HD Therapeutics Conference](https://hdsa.org/news/postcard-from-palm-springs-highlights-from-the-2019-chdi-hd-therapeutics-conference/)
- [HDSA Announces Winners of 2019 Donald A. King Summer Research Fellowship](https://hdsa.org/news/hdsa-announces-winners-of-2019-donald-a-king-summer-research-fellowship/) - Huntington’s Disease Society of America Announces Winners of 2019 Donald A. King Summer Research Fellowship Scientists working at Brown University, Duke University, University of Central Florida and the University of Pittsburgh awarded fellowships to work on Huntington’s disease. New York, NY (April 16, 2019) -- The Huntington’s Disease Society of America (HDSA) is pleased to
- [HDSA Films Presents "The Hodgsons" Short Film](https://hdsa.org/news/hdsa-films-presents-the-hodgsons-short-film/)
- [Update on PRECISION-HD program](https://hdsa.org/news/update-on-precision-hd-program/)
- [BLOG: This Week in HD Research](https://hdsa.org/news/blog-this-week-in-hd-research/)
- [HDBUZZ: An Updated Trial Design for Roche's Huntingtin Lowering Trial: Roche announces an update to the GENERATION HD1 trial after reviewing the ASO open label extension study](https://hdsa.org/news/hdbuzz-an-updated-trial-design-for-roches-huntingtin-lowering-trial-roche-announces-an-update-to-the-generation-hd1-trial-after-reviewing-the-aso-open-label-extension-study/)
- [COMMUNITY STATEMENT FROM ROCHE/GENENTECH: Amendment to the RG6042 Phase III GENERATION HD1 study design](https://hdsa.org/news/community-statement-from-roche-genentech-amendment-to-the-rg6042-phase-iii-generation-hd1-study-design/)
- [HDBUZZ: Genetic Hiccups That Protect Against Huntington's Disease](https://hdsa.org/news/hdbuzz-genetic-hiccups-that-protect-against-huntingtons-disease/)
- [HDBUZZ: Huntington's Disease Therapeutics Conference 2019 - Day 3 Recap](https://hdsa.org/news/hdbuzz-huntingtons-disease-therapeutics-conference-2019-day-3-recap/)
- [HDBUZZ: Huntington's Disease Therapeutics Conference 2019 - Day 2 Recap](https://hdsa.org/news/hdbuzz-huntingtons-disease-therapeutics-conference-2019-day-2-recap/)
- [Huntington's Disease Featured On The Today Show](https://hdsa.org/news/huntingtons-disease-featured-on-the-today-show/)
- [HDSA Expands Centers of Excellence Program to Forty-Seven](https://hdsa.org/news/hdsa-expands-centers-of-excellence-program-to-forty-seven/) - New York, NY (February 6, 2019) – The Huntington’s Disease Society of America (HDSA) is proud to announce that forty-seven outstanding Huntington’s disease care facilities are being awarded the designation of HDSA Centers of Excellence for 2019. The 2019 HDSA Centers of Excellence program expanded to 47 Centers from 43 in 2018, and from just
- [HDBuzz: Huntington's Disease Goes Viral as uniQure Inches Ahead in Gene Therapy Race](https://hdsa.org/news/hdbuzz-huntingtons-disease-goes-viral-as-uniqure-inches-ahead-in-gene-therapy-race/)
- [First Patients Enrolled in HD Natural History & GENERATION HD1 Clinical Studies](https://hdsa.org/news/first-patients-enrolled-in-hd-natural-history-generation-hd1-clinical-studies/)
- [HDSA Publishes 2018 Year In Review Magazine](https://hdsa.org/news/hdsa-publishes-2018-year-in-review-magazine/)
- [uniQure Announces FDA Clearance of Investigational New Drug Application for AMT-130 in Huntington’s Disease](https://hdsa.org/news/uniqure-announces-fda-clearance-of-investigational-new-drug-application-for-amt-130-in-huntingtons-disease/)
- [HDSA Launches Youth Social Worker Program](https://hdsa.org/news/hdsa-launches-youth-social-worker-program/)
- [BREAKING NEWS: Roche/Genentech Announces US Locations of GENERATION-HD1 Drug Study](https://hdsa.org/news/breaking-news-roche-genentech-announces-us-locations-of-generation-hd1-drug-study/) - Today, Wednesday, December 19th, Roche/Genentech announced the US and Canadian locations for their upcoming study to test efficacy of the huntingtin-lowering therapy RG6042. This will be a 2-year study in people with early diagnosed HD. It will involve monthly lumbar punctures (spinal injections) to deliver RG6042 or a placebo, as well as clinical tests and scans
- [HDSA's 2018 Research Report Now Available](https://hdsa.org/news/hdsas-2018-research-report-now-available/)
- [EJ Garner Appointed as Chair of HDSA's National Board of Trustees](https://hdsa.org/news/ej-garner-appointed-chair-of-hdsas-national-board-of-trustees/)
- [HDBUZZ: Advances on many fronts in the battle against the protein that causes Huntington's disease](https://hdsa.org/news/hdbuzz-advances-on-many-fronts-in-the-battle-against-the-protein-that-causes-huntingtons-disease/)
- [Genentech/Roche Announces US & Canadian Locations of Observational Natural History Study](https://hdsa.org/news/genentech-roche-announces-us-canadian-locations-of-observational-natural-history-study/) - On Saturday, November 10th at the Huntington Study Group Meeting in Houston, Genentech/Roche announced the US and Canadian locations for their Natural History Study. This study does not involve drug treatments. It will monitor people with early manifest HD by testing their symptoms and measuring their mutant huntingtin levels over time. It will last for
- [HDSA Awards Five HD Human Biology Project Fellowships for 2018](https://hdsa.org/news/hdsa-awards-five-hd-human-biology-project-fellowships-for-2018/)
- [FAQs: Upcoming Genentech/Roche Studies](https://hdsa.org/news/faqs-upcoming-genentech-roche-studies/)
- [HDBuzz: Kids Get Huntington's Disease Too](https://hdsa.org/news/hd-buzz-kids-get-huntingtons-disease-too/)
- [RESEARCH WEBINAR: Update from Roche/Genentech on GENERATION-HD1 & RG6042](https://hdsa.org/news/research-webinar-update-from-roche-genentech-on-generation-hd1-rg6042/)
- [HDBuzz: The GENERATION-HD1 trial will test whether RG6042 – formerly Ionis-HTTRx – slows the progression of Huntington's disease](https://hdsa.org/news/hdbuzz-the-generation-hd1-trial-will-test-whether-rg6042-formerly-ionis-httrx-slows-the-progression-of-huntingtons-disease/)
- [Update on RG6042 (formerly known as IONIS-HTTRx) Huntington’s disease global development programme: Two clinical studies to begin by end of 2018](https://hdsa.org/news/update-on-rg6042-formerly-known-as-ionis-httrx-huntingtons-disease-global-development-programme-two-clinical-studies-to-begin-by-end-of-2018/)
- [Roche's Phase 3 Trial for RG6042 (formerly IONIS HTT-Rx) has been announced: GENERATION-HD1](https://hdsa.org/news/roches-phase-3-trial-for-rg6042-formerly-ionis-htt-rx-has-been-announced-generation-hd1/) - Roche's Phase 3 Trial for RG6042 (formerly IONIS HTT-Rx) has been announced: GENERATION-HD1 (Click image to enlarge) NOTE: No sites have been announced and enrollment has not started. Stay tuned to HDSA for more info.
- [Roche Media Release Regarding PRIME Designation Granted by European Medicines Agency for RG6042 (formerly IONIS-HTT Rx)](https://hdsa.org/news/roche-media-release-regarding-prime-designation-granted-by-european-medicines-agency-for-rg6042/)
- [IONIS-HTT Rx (RG6042) Granted PRIME Designation by the European Medicines Agency for the Treatment of People with Huntington's Disease](https://hdsa.org/news/ionis-htt-rx-rg6042-granted-prime-designation-by-the-european-medicines-agency-for-the-treatment-of-people-with-huntingtons-disease/)
- [Now Accepting 2019 HDSA Centers of Excellence Letters of Interest](https://hdsa.org/news/now-accepting-2019-hdsa-centers-of-excellence-letters-of-interest/) - The HDSA Center of Excellence program is the cornerstone of HDSA’s commitment to care. HDSA Centers of Excellence provide comprehensive multidisciplinary clinical services to families affected by Huntington’s disease (HD). Services are centered around regularly scheduled HD clinic days at which an individual’s HD care needs are defined, assessed and addressed. These services include, but
- [HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS BERMAN-TOPPER FAMILY HD CAREER DEVELOPMENT FELLOWSHIPS RESEARCHERS FROM CALIFORNIA AND CANADA AWARDED PRESTIGIOUS GRANT](https://hdsa.org/news/huntingtons-disease-society-of-america-awards-berman-topper-family-hd-career-development-fellowships-researchers-from-california-and-canada-awarded-prestigious-grant/) - For Immediate Release Contact: Christopher Cosentino Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org New York, NY, May 30, 2017 -- The Huntington’s Disease Society of America (HDSA) is pleased to announce that Dr. Tamara Maiuri (McMaster University) and Dr. Sarah Hernandez (University of California at Irvine) have been awarded HDSA Berman-Topper
- [HDBUZZ: First Dolly, now Piglet; a new Huntington’s disease pig knock-in model confirmed](https://hdsa.org/news/hdbuzz-first-dolly-now-piglet-a-new-huntingtons-disease-pig-knock-in-model-confirmed/)
- [VIDEO: 33rd Annual HDSA Convention Recap](https://hdsa.org/news/video-33rd-annual-hdsa-convention-recap/)
- [33rd Annual HDSA Convention Recap](https://hdsa.org/news/33rd-annual-hdsa-convention-recap/)
- [VIDEO: HD Buzz at the 33rd Annual HDSA Convention](https://hdsa.org/news/video-hd-buzz-at-the-33rd-annual-hdsa-convention/)
- [VIDEO: 33rd Annual HDSA Convention Research Forum](https://hdsa.org/news/video-33rd-annual-hdsa-convention-research-forum/)
- [VIDEO: 33rd Annual HDSA Convention Opening Ceremony](https://hdsa.org/news/video-33rd-annual-hdsa-convention-opening-ceremony/)
- [Getting to know Roche & Genentech, RG6042 (formerly known as IONIS-HTTRx )](https://hdsa.org/news/getting-to-know-roche-genentech-rg6042-formerly-known-as-ionis-httrx/)
- [HDSA Awards Berman-Topper Family HD Career Development Fellowship](https://hdsa.org/news/hdsa-awards-berman-topper-family-hd-career-development-fellowship/)
- [FAQs Regarding the Latest Huntingtin-Lowering Update from Ionis & Roche](https://hdsa.org/news/faqs-regarding-the-latest-huntingtin-lowering-update-from-ionis-roche/)
- [New Data from IONIS-HTT Rx Phase 1/2 Study Demonstrates Correlation Between Reduction of Disease-causing Protein and Improvement in Clinical Measures of Huntington's Disease](https://hdsa.org/news/new-data-from-ionis-htt-rx-phase-1-2-study-demonstrates-correlation-between-reduction-of-disease-causing-protein-and-improvement-in-clinical-measures-of-huntingtons-disease/)
- [HDSA Announces Winners of 2018 Donald A. King Summer Research Fellowship](https://hdsa.org/news/hdsa-announces-winners-of-2018-donald-a-king-summer-research-fellowship/)
- [Roche Community Statement Regarding RG6042 (formerly known as IONIS-HTTRx )](https://hdsa.org/news/roche-community-statement-regarding-rg6042-formerly-known-as-ionis-httrx/)
- [HDBuzz: Exciting Experiments in "Open Science" by Huntington's Researchers](https://hdsa.org/news/hdbuzz-exciting-experiments-in-open-science-by-huntingtons-researchers/)
- [VIDEO: Postcard from CHDI Meetings in Palm Springs & Malta](https://hdsa.org/news/video-postcard-from-chdi-meetings-in-palm-springs-malta/)
- [HDSA Partners with the ALS Association & Teva Pharmaceuticals to Identify Novel Therapeutic Targets for CNS Disorders](https://hdsa.org/news/hdsa-partners-with-the-als-association-teva-pharmaceuticals-to-identify-novel-therapeutic-targets-for-cns-disorders/)
- [HDSA Earns Second Consecutive 4-Star Rating from Charity Navigator](https://hdsa.org/news/hdsa-earns-second-consecutive-4-star-rating-from-charity-navigator/) - New York, NY (March 5, 2018) – The Huntington’s Disease Society of America (HDSA) is proud to announce that it has once again received a 4-star rating from Charity Navigator. "On behalf of Charity Navigator, I wish to congratulate the Huntington's Disease Society of America on attaining the coveted 4-star rating for demonstrating strong financial
- [HDBUZZ: Huntington's disease therapeutics conference 2018 - day 2](https://hdsa.org/news/huntingtons-disease-therapeutics-conference-2018-day-2/)
- [HDBUZZ: Huntington's disease therapeutics conference 2018 - day 3](https://hdsa.org/news/hdbuzz-huntingtons-disease-therapeutics-conference-2018-day-3/)
- [IONIS-HTT Rx Community Statement](https://hdsa.org/news/ionis-htt-rx-community-statement/)
- [IONIS-HTT Rx : Top-Line Data Demonstrate Significant Reductions of Disease-Causing Mutant Huntingtin Protein in People with Huntington's Disease](https://hdsa.org/news/ionis-htt-rx-top-line-data-demonstrate-significant-reductions-of-disease-causing-mutant-huntingtin-protein-in-people-with-huntingtons-disease/)
- [HDBUZZ- Huntington's disease therapeutics conference 2018 - day 1](https://hdsa.org/news/hdbuzz-huntingtons-disease-therapeutics-conference-2018-day-1/)
- [HDSA Announces Forty-Three Centers of Excellence](https://hdsa.org/news/hdsa-announces-43-centers-of-excellence/) - 2018 COE PR_FINAL
- [CEO Memo: Chorea Medication Co-Pay Assistance Programs Information](https://hdsa.org/news/ceo-memo-chorea-medication-co-pay-assistance-programs-information/) - HDSA Assistance Programs Letter 1-19-18 (003)
- [FAQs: Ionis Huntingtin-Lowering Trial](https://hdsa.org/news/faq-ionis-huntingtin-lowering-trial/) - Below are some frequently asked questions about IONIS-HTTRx, which recently completed a successful clinical trial for safety. Click here for full announcement. What’s the big news? On December 11, 2017, Ionis Pharmaceuticals announced the results of a small clinical trial to test the safety of a new HD drug called IONIS-HTTRx. It is the very
- [Statement by Louise Vetter, President & CEO of the Huntington’s Disease Society of America  regarding Ionis-HTTRx Announcement](https://hdsa.org/news/statement-by-louise-vetter-president-ceo-of-the-huntingtons-disease-society-of-america-regarding-ionis-httrx-announcement/) - New York, NY, December 11, 2017 – Today, the Huntington’s disease community achieved a goal that would not have been possible without the support and dedication of the families, physicians and researchers who passionately pursue a treatment for Huntington’s disease (HD). Ionis’ announcement of the completion of the Phase 1/2a study of IONIS-HTTRX is a
- [BREAKING NEWS: Update on the Status of the IONIS-HTTRx Program and its Future](https://hdsa.org/news/breaking-news-update-on-the-status-of-the-ionis-httrx-program-and-its-future/) - Dear members of the Huntington’s community, Today is an exciting day for the Huntington’s disease community. The Phase 1/2a Study of IONIS-HTTRx, the first therapy in clinical development designed to target the underlying cause of HD, has been completed. We are pleased to share an update on the status of the IONIS-HTTRx program and its
- [Huntington’s Disease Society of America Announces the Launch of a Three-Part Online Accredited Continuing Education Course for  Community Based Primary Care Providers, Neurologists and Psychiatrists](https://hdsa.org/news/huntingtons-disease-society-of-america-announces-the-launch-of-a-three-part-online-accredited-continuing-education-course-for-community-based-primary-care-providers-neurologists-and-psychia/) - HDSA, in partnership with the University of Alabama Birmingham and Medscape, is pleased to announce the launch of a three part online accredited continuing education course for community based primary care providers, neurologists and psychiatrists. Each segment will focus on a different aspect of HD with a goal to educate community based healthcare providers with
- [HDSA Pays Tribute to Founder Marjorie Guthrie & 50 Years of the Guthrie Family Legacy](https://hdsa.org/news/hdsa-pays-tribute-to-founder-marjorie-guthrie-50-years-of-the-guthrie-family-legacy/) - New York, NY - Music icon Woody Guthrie wrote "She Came Along To Me" for his wife Marjorie before he died from Huntington's disease (HD) in 1967. Before he passed, Marjorie promised Woody that she would dedicate her life to "do something" about this devastating brain disorder with no cure which also threatened their children.
- [HDSA Honors Sportscaster Chris Berman & Raises More Than $250,000](https://hdsa.org/news/hdsa-honors-sportscaster-chris-berman-raises-more-than-250000/)
- [HDBUZZ: Switch off the genome editor when you’re done](https://hdsa.org/news/hdbuzz-switch-off-the-genome-editor-when-youre-done/)
- [Update confirms Huntington's disease 'gene silencing' trial on track](https://hdsa.org/news/update-confirms-huntingtons-disease-gene-silencing-trial-on-track/)
- [Huntington’s Disease Society of America Awards  Four HD Human Biology Project Fellowships for 2017](https://hdsa.org/news/huntingtons-disease-society-of-america-awards-four-hd-human-biology-project-fellowships-for-2017/) - New York, NY, October 12, 2017 -- Today, the Huntington’s Disease Society of America (HDSA) announced that four new research grants have been awarded under the Society’s largest research initiative, the HDSA Huntington’s Disease Human Biology Project. Totaling nearly half a million dollars, these grants represent HDSA’s patient-centric research focus which brings basic and clinical
- [HDBUZZ: New roles for huntingtin: removing a healthy protein to understand its function](https://hdsa.org/news/hdbuzz-new-roles-for-huntingtin-removing-a-healthy-protein-to-understand-its-function/)
- [Global Huntington’s Disease Patient Advocacy Organizations Unite to Form  Huntington’s Disease Coalition for Patient Engagement (HD-COPE)](https://hdsa.org/news/global-huntingtons-disease-patient-advocacy-organizations-unite-to-form-huntingtons-disease-coalition-for-patient-engagement-hd-cope/) - Søgne, Norway // New York, USA // Kitchener, Canada (September 19, 2017) – The European Huntington Association (EHA), Huntington’s Disease Society of America (HDSA) and Huntington Society of Canada (HSC) are proud to announce the formation of the Huntington’s Disease Coalition for Patient Engagement (HD-COPE), a new global coalition to give families who are affected
- [Huntington’s Disease Society of America’s 50th Anniversary to Celebrate the Life & Legacy of Its Founder Marjorie Guthrie](https://hdsa.org/news/huntingtons-disease-society-of-americas-50th-anniversary-to-celebrate-the-life-legacy-of-its-founder-marjorie-guthrie/) - New York, NY (September 18, 2017) — Music icon Woody Guthrie died from Huntington’s disease (HD) complications when he was only 55 years old, but before he passed his wife Marjorie promised him that she would dedicate her life to fighting this devastating disease that also threatened their children. On September 18, 1967 Marjorie Guthrie
- [HealthWell Foundation Opens Huntington’s Disease Fund to Assist Medicare Patients](https://hdsa.org/news/healthwell-foundation-opens-huntingtons-disease-fund-to-assist-medicare-patients/) - FOR IMMEDIATE RELEASE CONTACT: Ginny Dunn 240-632-5309 Ginny.Dunn@HealthWellFoundation.org HealthWell Foundation Opens Huntington’s Disease Fund to Assist Medicare Patients Copayment and Premium Assistance Now Available GERMANTOWN, Md. — August 1, 2017 — The HealthWell Foundation®, an independent non-profit that provides a financial lifeline for inadequately insured Americans, has opened a new fund to provide copayment and
- [HDBUZZ: A step forward for gene editing: CRISPR-Cas9 and HD](https://hdsa.org/news/hdbuzz-a-step-forward-for-gene-editing-crispr-cas9-and-hd/)
- [Wave Life Sciences Initiates Two Phase 1b/2a Clinical Trials: PRECISION-HD1 and PRECISION-HD2 in Patients with Huntington’s Disease](https://hdsa.org/news/wave-life-sciences-initiates-two-phase-1b2a-clinical-trials-precision-hd1-and-precision-hd2-in-patients-with-huntingtons-disease/)
- [Exclusive HDBuzz interview with Prof Lesley Jones (Cardiff University) and Prof Sarah Tabrizi (University College London) about their new paper describing a 'genetic modifier' for Huntington's disease.](https://hdsa.org/news/exclusive-hdbuzz-interview-with-prof-lesley-jones-cardiff-university-and-prof-sarah-tabrizi-university-college-london-about-their-new-paper-describing-a-genetic-modifier-for-huntingtons-dise/)
- [Exciting News: IONIS provides update on Huntingtin lowering trial](https://hdsa.org/news/ionis-community-statement/)
- [HUNTINGTON’S DISEASE SOCIETY OF AMERICA LAUNCHES FIRST-OF-ITS-KIND FREE TELEHEALTH COUNSELING FOR HD FAMILIES](https://hdsa.org/news/huntingtons-disease-society-of-america-launches-first-of-its-kind-free-telehealth-counseling-for-hd-families/) - New York, NY, June 21, 2017 – Today, the Huntington’s Disease Society of America (HDSA) is launching a new technology partnership with leading telehealth company American Well® to offer free online therapy to people affected by Huntington’s disease (HD). HDSA-trained licensed social workers and psychologists will be available on American Well’s telehealth platform to families
- [New study reveals a potential HD biomarker](https://hdsa.org/news/new-study-reveals-a-potential-hd-biomarker/)
- [Huntington’s Disease Society of America Premieres  Her Mother’s Daughter Documentary During HD Awareness Month](https://hdsa.org/news/huntingtons-disease-society-of-america-premieres-her-mothers-daughter-documentary-during-hd-awareness-month/) - For Immediate Release Contact: Christopher Cosentino Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org Powerful documentary highlighting Huntington’s disease and Juvenile HD receives outstanding reviews New York, NY (May 15, 2017) – On May 11th, the Huntington’s Disease Society of America (HDSA) premiered the film Her Mother’s Daughter at the NYIT Auditorium
- [Huntington’s Disease Parity Act Reintroduced to Waive Two-Year Waiting Period for Medicare Coverage for those with Huntington’s Disease](https://hdsa.org/news/huntingtons-disease-parity-act-reintroduced-to-waive-two-year-waiting-period-for-medicare-coverage-for-those-with-huntingtons-disease/) - For Immediate Release Contact: Christopher Cosentino Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org New York, NY (May 23, 2017) — Today, Congressman Adam Kinzinger (R-IL) and Congressman Bill Pascrell, Jr. (D-NJ) reintroduced the Huntington’s Disease Parity Act (HR. 2589) in the House of Representatives. Simultaneously, Senator Kirsten Gillibrand (D-NY), along with
- [Huntington’s Disease Society of America Raises Nearly $40,000  at Guthrie Sessions Live in New York City](https://hdsa.org/news/huntingtons-disease-society-of-america-raises-nearly-40000-at-guthrie-sessions-live-in-new-york-city/) - For Immediate Release Contact: Christopher Cosentino Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org Woody Guthrie’s daughter, Nora, joins artists on stage at Lower East Side Tenement Museum New York, NY (May 15, 2017) -- The Huntington’s Disease Society of America (HDSA) raised nearly $40,000 at The Guthrie Sessions Live held
- [Huntington’s Disease Society of America Announces Winners of  2017 Donald A. King Summer Research Fellowship](https://hdsa.org/news/huntingtons-disease-society-of-america-announces-winners-of-2017-donald-a-king-summer-research-fellowship/) - For Immediate Release Contact: Christopher Cosentino Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org Scientists working at University of Wyoming, Columbia University, Catholic University of America and University of Central Florida awarded fellowships to work on Huntington’s disease New York, NY (May 2, 2017) -- The Huntington’s Disease Society of America
- [Has a "wonder drug" for dementia been discovered? (Spoiler alert: no.)](https://hdsa.org/news/has-a-wonder-drug-for-dementia-been-discovered-spoiler-alert-no/)
- [Huntington’s Disease Society of America Collaborates with HealthWell Foundation to Launch Movement Disorders Fund to Provide Financial Assistance to Medicare Patients](https://hdsa.org/news/huntingtons-disease-society-of-america-collaborates-with-healthwell-foundation-to-launch-movement-disorders-fund-to-provide-financial-assistance-to-medicare-patients/) - Copayment and Premium Assistance Available for Individuals with Huntington’s Disease New York, NY (May 2, 2017) —The Huntington’s Disease Society of America (HDSA) is proud to announce a valuable partnership with the The HealthWell Foundation®, an independent non-profit that provides a financial lifeline for inadequately insured Americans, has launched a Movement Disorders Fund to provide
- [Huntington's Disease Therapeutics Conference 2017 - Day 3](https://hdsa.org/news/huntingtons-disease-therapeutics-conference-2017-day-3/)
- [Huntington's Disease Therapeutics Conference 2017 - Day 2](https://hdsa.org/news/huntingtons-disease-therapeutics-conference-2017-day-2/)
- [Huntington's Disease Therapeutics Conference 2017 - Day 1](https://hdsa.org/news/huntingtons-disease-therapeutics-conference-2017-day-1/)
- [Two recent studies show how a cellular border control system goes wrong in HD, opening new avenues for HD research.](https://hdsa.org/news/two-recent-studies-show-how-a-cellular-border-control-system-goes-wrong-in-hd-opening-new-avenues-for-hd-research/)
- [Pope Francis To Meet With The Global Huntington's Community To Shine A Light On And Lift Stigma Of Disease](https://hdsa.org/news/pope-francis-to-meet-with-the-global-huntingtons-community-to-shine-a-light-on-and-lift-stigma-of-disease/)
- [HDBuzz article - FDA approves a new drug for symptoms of Huntington's disease](https://hdsa.org/news/hdbuzz-article-fda-approves-a-new-drug-for-symptoms-of-huntingtons-disease/)
- [Sheep can help us to identify HD biomarkers and recognize metabolic changes that occur before symptoms develop.](https://hdsa.org/news/sheep-can-help-us-to-identify-hd-biomarkers-and-recognize-metabolic-changes-that-occur-before-symptoms-develop/)
- [2017 National Awards Nominations](https://hdsa.org/news/2017-national-awards-nominations/) - Each year the Huntington’s Disease Society of America (HDSA) honors those who have made notable contributions to the HD community with national awards presented at the HDSA Annual Convention. This year’s awards will be presented at the Convention Gala on Saturday, June 24, 2017 in Schaumburg, Illinois. Please take some time to consider the special
- [Save the Date- For the largest global gathering of the HD community!](https://hdsa.org/news/save-the-date-for-the-largest-global-gathering-of-the-hd-community/)
- [Huntington’s Disease Society of America Announces Premiere for Juvenile Huntington’s Disease Documentary](https://hdsa.org/news/huntingtons-disease-society-of-america-announces-premiere-for-juvenile-huntingtons-disease-documentary/) - For Immediate Release Contact: Christopher Cosentino Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org Her Mother’s Daughter to Premiere in New York City on May 11th New York, NY (February 28, 2017) – The Huntington’s Disease Society of America (HDSA) is proud to announce the world premiere of the powerful documentary Her
- [Weeding out the truth: can cannabis improve Huntington’s?](https://hdsa.org/news/weeding-out-the-truth-can-cannabis-improve-huntingtons/)
- [Huntingtin grabs a hammer: DNA repair in HD](https://hdsa.org/news/huntingtin-grabs-a-hammer-dna-repair-in-hd/)
- [The benefits of migration, highlighted in Huntington's disease](https://hdsa.org/news/the-benefits-of-migration-highlighted-in-huntingtons-disease/)
- [Huntington’s Disease Society of America  Announces Forty-One 2017 HDSA Centers of Excellence](https://hdsa.org/news/huntingtons-disease-society-of-america-announces-forty-one-2017-hdsa-centers-of-excellence/) - For Immediate Release Contact: Christopher Cosentino Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org Huntington’s Disease Society of America Announces Forty-One 2017 HDSA Centers of Excellence New York, NY (February 8, 2017) – The Huntington’s Disease Society of America (HDSA) is proud to announce that forty-one outstanding Huntington’s disease care facilities are
- [Huntington’s Disease Society of America  Unveils HDNavigator Mobile App](https://hdsa.org/news/huntingtons-disease-society-of-america-unveils-hdnavigator-mobile-app/) - FOR IMMEDIATE RELEASE Contact: Christopher Cosentino Director, Marketing & Communications (212) 242-1968 ext. 229 ccosentino@hdsa.org New York, NY, January 19, 2017 -- The Huntington’s Disease Society of America (HDSA) launched their new mobile app, HDNavigator, featuring a collection of useful tools and resources for all members of the Huntington’s disease (HD) Community – patients,
- [HDBuzz: Treasure your exceptions - using outliers to understand Huntington's disease onset and progression](https://hdsa.org/news/hdbuzz-treasure-your-exceptions-using-outliers-to-understand-huntingtons-disease-onset-and-progression/)
- [Pfizer Amaryllis trial ends : no improvement in Huntington's disease symptoms](https://hdsa.org/news/pfizer-amaryllis-trial-ends-no-improvement-in-huntingtons-disease-symptoms/)
- [HDSA has published the 2016 Research Report which provides in-depth Huntington’s disease research information and highlights from 2016.](https://hdsa.org/news/hdsa-has-published-the-2016-research-report-which-provides-in-depth-huntingtons-disease-research-information-and-highlights-from-2016/)
- [Huntington’s Disease Society of America  to Provide 1,000 Free Liftware Level Devices to People  Living with Huntington’s Disease](https://hdsa.org/news/huntingtons-disease-society-of-america-to-provide-1000-free-liftware-leveltm-devices-to-people-living-with-huntingtons-disease/) - FOR IMMEDIATE RELEASE Contact: Christopher Cosentino Director, Marketing & Communications (212) 242-1968 ext. 229 ccosentino@hdsa.org New York, NY, December 1, 2016 - The Huntington’s Disease Society of America (HDSA) will begin a program that will provide 1,000 free Liftware LevelTM starter kits to HD families in need. Devices will be given to people with HD
- [HDSA Earns Top-Rating from CharityWatch](https://hdsa.org/news/hdsa-earns-top-rating-from-charitywatch/) - FOR IMMEDIATE RELEASE Contact: Christopher Cosentino Director, Marketing & Communications (212) 242-1968 ext. 229 ccosentino@hdsa.org New York, NY, November 23, 2016,– The Huntington’s Disease Society of America was notified this week that it had once again achieved Top-Rating status from CharityWatch. As one of the nation’s top nonprofit evaluators, CharityWatch performs in-depth analyses
- [Huntington’s Disease Society of America AWARDS  $930,000 to nine new HD Human Biology fellows](https://hdsa.org/news/huntingtons-disease-society-of-america-awards-930000-to-nine-new-hd-human-biology-fellows/) - FOR IMMEDIATE RELEASE Contact: Christopher Cosentino Director, Marketing & Communications (212) 242-1968 ext. 229 ccosentino@hdsa.org New York, NY, November 15, 2016 -- Today, the Huntington’s Disease Society of America (HDSA) announced that nine research grants have been awarded under the Society’s largest research initiative, the HDSA Huntington’s Disease Human Biology Project. Totaling $930,000, these
- [Important advances in next generation genome editing tools for Huntington's Disease](https://hdsa.org/news/important-advances-in-next-generation-genome-editing-tools-for-huntingtons-disease/)
- [HDBuzz helps untangle the results of the PRIDE-HD trial of pridopidine](https://hdsa.org/news/hdbuzz-helps-untangle-the-results-of-the-pride-hd-trial-of-pridopidine/)
- [EuroBuzz 2016: The Euro-HD Network Meeting in The Hague](https://hdsa.org/news/eurobuzz-2016-the-euro-hd-network-meeting-in-the-hague/)
- [Huntington’s Disease Society of America’s 2017 HDSA Center of Excellence Program Now Accepting Letters of Interest](https://hdsa.org/news/huntingtons-disease-society-of-americas-2017-hdsa-center-of-excellence-program-now-accepting-letters-of-interest/) - Huntington’s Disease Society of America’s 2017 HDSA Center of Excellence Program Now Accepting Letters of Interest The HDSA Center of Excellence program is the cornerstone of HDSA’s commitment to care. HDSA Centers of Excellence provide comprehensive multidisciplinary clinical services to families affected by Huntington’s disease (HD). Services are centered around regularly scheduled HD clinic days
- [Exciting Press Release from Teva Regarding Pridopidine: Possibly the first disease modifying drug for HD](https://hdsa.org/news/exciting-press-release-from-teva-regarding-pridopidine-possibly-the-first-disease-modifying-drug-for-hd/)
- [New technology enables researchers to find ultra-rare mutations in the HD gene, distinct from the one causing HD](https://hdsa.org/news/new-technology-enables-researchers-to-find-ultra-rare-mutations-in-the-hd-gene-distinct-from-the-one-causing-hd/)
- [HD Support & Care Network and Huntington’s Disease Society of America Partner for Stronger HD Support Groups in California and Arizona](https://hdsa.org/news/hd-support-care-network-and-huntingtons-disease-society-of-america-partner-for-stronger-hd-support-groups-in-california-and-arizona/) - Contact: Christopher Cosentino Phone 212-242-1968, ext. 229 E-Mail ccosentino@hdsa.org FOR IMMEDIATE RELEASE HD Support & Care Network and Huntington’s Disease Society of America Partner for Stronger HD Support Groups in California and Arizona “Our mission is to help HD families find resources for support and care.” Santa Maria, CA – August 20,
- [Deutetrabenazine for Huntington's disease: a positive trial but the FDA says no? Not exactly...](https://hdsa.org/news/deutetrabenazine-for-huntingtons-disease-a-positive-trial-but-the-fda-says-no-not-exactly/)
- [A support system gone wrong - glial cells contribute to HD symptoms](https://hdsa.org/news/a-support-system-gone-wrong-glial-cells-contribute-to-hd-symptoms/)
- [Huntington's Disease Community Scores Major Victory with Social Security Criteria](https://hdsa.org/news/huntingtons-disease-community-scores-major-victory-with-social-security-criteria/) - For Immediate Release Contact: Christopher Cosentino, Director of Marketing & Communications Phone: 212-242-1968 x229 Email: ccosentino@hdsa.org Huntington's Disease Community Scores Major Victory with Social Security Criteria New York, NY (July 8, 2016) – The Huntington’s Disease Society of America (HDSA) and the Huntington’s disease (HD) community scored major victories in the new medical criteria for
- [Slightly long CAG repeats are more common than we thought](https://hdsa.org/news/slightly-long-cag-repeats-are-more-common-than-we-thought/)
- [Early exposure to the HD protein may cause life-long symptoms](https://hdsa.org/news/early-exposure-to-the-hd-protein-may-cause-life-long-symptoms/)
- [WAVE Life Sciences Receives Orphan Drug Designation from FDA for its Lead Candidate Designed to Treat Huntington’s Disease](https://hdsa.org/news/wave-life-sciences-receives-orphan-drug-designation-from-fda-for-its-lead-candidate-designed-to-treat-huntingtons-disease/) - WAVE Life Sciences Receives Orphan Drug Designation from FDA for its Lead Candidate Designed to Treat Huntington’s Disease Allele-specific targeting silences mutant HTT allele while leaving healthy HTT allele in tact On track to file investigational new drug (IND) application in late 2016 CAMBRIDGE, Mass.— June 21, 2016—WAVE Life Sciences Ltd. (NASDAQ: WVE),
- [Electron beam snaps best images yet of Huntington's disease protein](https://hdsa.org/news/electron-beam-snaps-best-images-yet-of-huntingtons-disease-protein/)
- [Select Videos From HDSA's 31st Annual Convention Now Available](https://hdsa.org/news/select-videos-from-hdsas-31st-annual-convention-now-available/)
- [Huntington’s Disease Society of America Hosts the 2nd Largest Convention in 31 Years](https://hdsa.org/news/huntingtons-disease-society-of-america-hosts-the-2nd-largest-convention-in-31-years/) - For Immediate Release Contact: Christopher Cosentino, Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org Huntington’s Disease Society of America Hosts the 2nd Largest Convention in 31 Years New York, NY (June 2016) – The Huntington’s Disease Society of America (HDSA) welcomed nearly 930 guests to the 31st Annual HDSA Convention
- [Huntingtin takes a trip: harmful proteins pass between brain cells](https://hdsa.org/news/huntingtin-takes-a-trip-harmful-proteins-pass-between-brain-cells/)
- [Watch us Live from the 31st Annual HDSA Convention](https://hdsa.org/news/watch-us-live-from-the-31st-annual-hdsa-convention/) - Can't make the Annual HDSA Convention this year? Don't worry, watch select workshops from the comfort of your own home! Room 1 http://www.ustream.tv/channel/j3uxuNXTwCz Schedule of Workshops Broadcast (All times are listed in EDT) Friday, June 3, 2016 Time Workshop Name Presenter 9:00 am-10:30 am Opening Ceremony 11:00 am- 12:15 pm I've Got the Music
- [HDSA National Board of Trustees is asking for your help developing a new five-year plan that will chart the organization’s goals from 2017-2021.](https://hdsa.org/news/hdsa-national-board-of-trustees-is-asking-for-your-help-developing-a-new-five-year-plan-that-will-chart-the-organizations-goals-from-2017-2021/) - Dear HD Community Member: As you may know, the Huntington’s Disease Society of America is in the process of updating its Strategic Plan. The first Strategic Plan guided the Society’s work from 2012 through this year. During this time HDSA launched new research programs, expanded its advocacy work, nearly doubled the HDSA Center of Excellence
- [Postcard from Palm Springs](https://hdsa.org/news/postcard-from-palm-springs/)
- [Huntington’s Disease Society of America awards first-ever Berman-topper Family HD Career Development Fellowship](https://hdsa.org/news/huntingtons-disease-society-of-america-awards-first-ever-berman-topper-family-hd-career-development-fellowship/) - FOR IMMEDIATE RELEASE Contact: Christopher Cosentino, Director of Marketing & Communications (212) 242-1968 ext. 229 ccosentino@hdsa.org Huntington’s Disease Society of America awards first-ever Berman-topper Family HD Career Development Fellowship New York, NY, May 10, 2016 -- The Huntington’s Disease Society of America (HDSA) is pleased to announce that Dr. Ricardo Mouro Pinto (Massachusetts
- [Huntington’s Disease Society of America Releases Updated  “Genetic Testing Protocol for Huntington’s Disease”](https://hdsa.org/news/huntingtons-disease-society-of-america-releases-updated-genetic-testing-protocol-for-huntingtons-disease/) - For Immediate Release Contact: Christopher Cosentino Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org Click here to view the protocol Huntington’s Disease Society of America Releases Updated “Genetic Testing Protocol for Huntington’s Disease” First Major Revision in Testing Standards Since 2003 New York, NY (April 28, 2016) -- The Huntington’s
- [Important drug targets yielded by new genetic study of HD](https://hdsa.org/news/important-drug-targets-yielded-by-new-genetic-study-of-hd/)
- [Huntington’s Disease Society of America Launches #LetsTalkAboutHD Campaign During Huntington’s Disease Awareness Month in May](https://hdsa.org/news/huntingtons-disease-society-of-america-launches-letstalkabouthd-campaign-during-huntingtons-disease-awareness-month-in-may/) - For Immediate Release Contact: Christopher Cosentino Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org Huntington’s Disease Society of America Launches #LetsTalkAboutHD Campaign During Huntington’s Disease Awareness Month in May New York, NY (May 2016) – The Huntington’s Disease Society of America (HDSA) has launched a massive social media campaign called
- [Huntington’s Disease Society of America Announces Winners of 2016 Donald A. King Summer Research Fellowship](https://hdsa.org/news/huntingtons-disease-society-of-america-announces-winners-of-2016-donald-a-king-summer-research-fellowship/) - For Immediate Release Contact: Christopher Cosentino Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org Huntington’s Disease Society of America Announces Winners of 2016 Donald A. King Summer Research Fellowships Scientists working at University of Iowa, Institute for Systems Biology and Children’s Hospital of Philadelphia awarded fellowships to work on Huntington’s disease
- [Thinking clearly about the earliest symptoms of HD and which brain regions control them](https://hdsa.org/news/thinking-clearly-about-the-earliest-symptoms-of-hd-and-which-brain-regions-control-them/)
- [2016 HDSA NATIONAL AWARDS NOMINATIONS](https://hdsa.org/news/2016-hdsa-national-awards-nominations/) - Each year the Huntington’s Disease Society of America (HDSA) honors those who have made notable contributions to the HD community with national awards presented at the HDSA Annual Convention. Please take some time to consider the special achievements of any individual(s) in your chapter, Center of Excellence or community who you think is/are deserving of
- [How NOT to write a news article about a clinical trial](https://hdsa.org/news/how-not-to-write-a-news-article-about-a-clinical-trial/)
- [HDBuzz article - Huntington's Disease Therapeutics Conference 2016 - day 3](https://hdsa.org/news/hdbuzz-article-huntingtons-disease-therapeutics-conference-2016-day-3/)
- [HDBuzz article - Huntington's Disease Therapeutics Conference 2016 - day 2](https://hdsa.org/news/hdbuzz-article-huntingtons-disease-therapeutics-conference-2016-day-2/)
- [HDBuzz article - Huntington's Disease Therapeutics Conference 2016 - day 1](https://hdsa.org/news/hdbuzz-article-huntingtons-disease-therapeutics-conference-2016-day-1/)
- [Huntington’s Disease Society of America Announces Thirty-Nine 2016 HDSA Centers of Excellence](https://hdsa.org/news/huntingtons-disease-society-of-america-announces-thirty-nine-2016-hdsa-centers-of-excellence/) - For Immediate Release Contact: Christopher Cosentino Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org Huntington’s Disease Society of America Announces Thirty-Nine 2016 HDSA Centers of Excellence New York, NY (February 1, 2016) - Huntington’s Disease Society of America (HDSA) is proud to announce that thirty-nine outstanding Huntington’s disease care facilities are
- [Huntington’s Disease Society of America Partners with WeHaveAFace.org to Increase Access to The Huntington’s Disease Project: Removing the Mask](https://hdsa.org/news/huntingtons-disease-society-of-america-partners-with-wehaveaface-org-to-increase-access-to-the-huntingtons-disease-project-removing-the-mask/) - For Immediate Release Contact: Christopher Cosentino, Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org New York, NY (February 5, 2016) – The Huntington’s Disease Society of America (HDSA), the world’s largest non-profit organization dedicated to Huntington’s disease (HD) family support and research, has announced that it is partnering with WeHaveAFace.org Inc.
- [Harnessing the power of viruses to treat Huntington's disease](https://hdsa.org/news/harnessing-the-power-of-viruses-to-treat-huntingtons-disease/)
- [Through a Broader Lens: Looking at Non-Motor Symptoms in HD](https://hdsa.org/news/through-a-broader-lens-looking-at-non-motor-symptoms-in-hd/)
- [HDSA Releases 2015 Year in Review](https://hdsa.org/news/hdsa-releases-2015-year-in-review/)
- [HDSA Releases 2015 Research Investor's Report](https://hdsa.org/news/hdsa-releases-2015-research-investors-report/)
- [Looking Past the Spin: Results from a Clinical Trial of Cysteamine](https://hdsa.org/news/looking-past-the-spin-results-from-a-clinical-trial-of-cysteamine/)
- [An existing drug could give a boost to HD brain cells – but it may need more testing before it’s back in the clinic](https://hdsa.org/news/an-existing-drug-could-give-a-boost-to-hd-brain-cells-but-it-may-need-more-testing-before-its-back-in-the-clinic/)
- [Raptor Plans to Advance RP103 in a Registration Study](https://hdsa.org/news/raptor-plans-to-advance-rp103-in-a-registration-study/)
- [New HD Career Development Fellowship Announced by Huntington’s Disease Society of America](https://hdsa.org/news/auto-draft/) - For Immediate Release Contact: Christopher Cosentino, Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org New York, NY (December 7, 2015) – The Huntington’s Disease Society of America (HDSA) is now accepting letters of interest for a new research fellowship program specifically designed to develop new scientific leaders in the quest to
- [Through the eyes of a friend: changes in mood and behavior in early HD](https://hdsa.org/news/through-the-eyes-of-a-friend-changes-in-mood-and-behavior-in-early-hd/)
- [Huntington’s Disease Society of America Adds  Call Center Component to HD TrialFinder](https://hdsa.org/news/huntingtons-disease-society-of-america-adds-call-center-component-to-hd-trialfinder/) - For Immediate Release Contact: Christopher Cosentino, Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org HDSA’s HD TrialFinder is a free clinical trial matching service for Huntington’s disease that connects people with clinical studies in their area. New York, NY (December 2015) – The Huntington’s Disease Society of America (HDSA) is
- [Huntington’s Disease Society of America Receives  4-Star Rating From Charity Navigator](https://hdsa.org/news/huntingtons-disease-society-of-america-receives-4-star-rating-from-charity-navigator/) - For Immediate Release Contact: Christopher Cosentino, Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org New York, NY (December 2015) – On December 1st, the Huntington’s Disease Society of America (HDSA) received a 4-star rating from Charity Navigator. Charity Navigator is recognized as America’s top evaluator of nonprofit organizations. “On behalf of
- [A multiple sclerosis drug that works for Huntington's disease: the real deal or too good to be true?](https://hdsa.org/news/a-multiple-sclerosis-drug-that-works-for-huntingtons-disease-the-real-deal-or-too-good-to-be-true/)
- [Huntington’s Disease Society of America Now Accepting Applications for the  2016 Donald A. King Summer Research Fellowship](https://hdsa.org/news/huntingtons-disease-society-of-america-now-accepting-applications-for-the-2016-donald-a-king-summer-research-fellowship/) - Hard to believe it is holiday season again. That can mean just one thing….it is time to announce that the Huntington’s Disease Society of America (HDSA) is now accepting applications for the 2016 Donald A. King Summer Research Fellowship. The program is named in honor of Donald King who passed away in 2004. Don was
- [Huntington’s Disease Society of America’s  New York City Marathon Team Raises More Than $125,000](https://hdsa.org/news/huntingtons-disease-society-of-americas-new-york-city-marathon-team-raises-more-than-125000/) - For Immediate Release Contact: Christopher Cosentino, Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org New York, NY (November 2015) – The Huntington’s Disease Society of America (HDSA) TCS New York City Marathon team raised more than $125,000 to support HDSA’s mission to improve the lives of everyone affected by Huntington’s disease (HD).
- [Fourth Annual Strike Out HD Bowling Event Hosted by  New York Giant Geoff Schwartz Raises Nearly $50,000](https://hdsa.org/news/fourth-annual-strike-out-hd-bowling-event-hosted-by-new-york-giant-geoff-schwartz-raises-nearly-50000/) - For Immediate Release Contact: Christopher Cosentino, Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org New York, NY (October 2015) – On Monday, October 26th, New York Giant Geoff Schwartz hosted the 4th Annual Strike Out HD Bowling event at Frames Bowling Lounge in New York City. The sold-out event welcomed more
- [HDBuzz- Liftoff: First humans treated with gene silencing drugs for HD!](https://hdsa.org/news/hdbuzz-liftoff-first-humans-treated-with-gene-silencing-drugs-for-hd/)
- [HDBuzz primer: Clinical trial designs and phases](https://hdsa.org/news/hdbuzz-primer-clinical-trial-designs-and-phases/)
- [Huntington's Disease Society of America Announces 2015 HD Human Biology Project Grant Recipients](https://hdsa.org/news/huntingtons-disease-society-of-america-announces-2015-hd-human-biology-project-grant-recipients/) - FOR IMMEDIATE RELEASE Contact: Christopher Cosentino, Director of Marketing & Communications (212) 242-1968 ext. 229 ccosentino@hdsa.org New York, NY, October 2, 2015 -- The Huntington’s Disease Society of America (HDSA) is pleased to announce that six research grants have been awarded under the Society’s largest research initiative, the HDSA Huntington’s Disease Human Biology Project.
- [FDA Opens 60 Day Open Comment Period](https://hdsa.org/news/fda-opens-60-day-open-comment-period/) - HDSA thanks the HD community for your outstanding contributions to yesterday’s FDA Patient Focused Drug Development proceeding. Whether you were able to participate in person, via webcast or just in spirit, know that the hundreds of caregivers, persons with HD, those living at risk as well as advocates representing loved ones who are no longer
- [Hundreds of HD Families Join FDA Hearing to Shape Drug Development for Huntington’s Disease](https://hdsa.org/news/hundreds-of-hd-families-join-fda-hearing-to-shape-drug-development-for-huntingtons-disease/) - For Immediate Release Contact: Christopher Cosentino, Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org Huntington’s Disease Society of America Presents Results from 3,600 HD Family Surveys New York, NY (September 22, 2015) – Today more than 250 family members affected by Huntington’s disease (HD) from across the United States will join
- [HDBUZZ- A Few Bad Seeds: Using Brain Fluid to Grow Clumps in Brain Cells](https://hdsa.org/news/hdbuzz-a-few-bad-seeds-using-brain-fluid-to-grow-clumps-in-brain-cells/)
- [CNN “NEW DAY” Hosts Alisyn Camerota & Chris Cuomo raise $10,000 for the Huntington's Disease Society of America](https://hdsa.org/news/cnn-new-day-hosts-alisyn-camerota-chris-cuomo-raise-10000-for-the-huntingtons-disease-society-of-america/) - New York, NY (September 2015) – On Labor Day, CNN anchors Alisyn Camerota and Chris Cuomo took the stage for "The CNN Quiz Show: TV Edition" hosted by Anderson Cooper. Despite a valiant 3rd place finish, Alisyn & Chris brought in $10,000 and an incredible amount of awareness for the charity of their choice, the
- [Deadline To Tell Us Your Thoughts Has Been Extended!](https://hdsa.org/news/tell-us-your-thoughts/) - Dear Friend, I want to take a moment and thank you for making the time to support the Huntington's Disease Society of America. Because we value your voice, we need your help as we continue to try and meet your needs in the work that we do. As many of you know, the Huntington's Disease
- [HDSA Announces 2016 Call for Letters of Interest for Center of Excellence Program](https://hdsa.org/news/6984/) - In 2014, HDSA announced a new phase of the HDSA Center of Excellence program. This involved a re-structuring of the grant process to enable us to meet our goals of increasing the Society’s capacity to support outstanding multi-disciplinary HD care centers across the United States while expanding access to expert HD care in underserved areas.
- [Patient-Focused Drug Discovery Meeting at the FDA on Huntington's Disease](https://hdsa.org/news/patient-focused-drug-discovery-meeting-at-the-fda-on-huntingtons-disease/) - IMPORTANT UPDATE Patient-Focused Drug Discovery Meeting at the FDA on Huntington's Disease On Tuesday, September 22nd, 2015, the U.S. Food and Drug Administration will be hosting a patient-focused meeting on Huntington's disease drug development for the American HD community. This meeting is an exciting one-of-a-kind opportunity for HD patients and caregivers to bring their voices
- [Scientists identify genetic factors that alter the clinical onset of HD in landmark study](https://hdsa.org/news/scientists-identify-genetic-factors-that-alter-the-clinical-onset-of-hd-in-landmark-study/) - Twenty-two years after the publication of the paper that identified the gene that causes Huntington’s disease, the collaborative and innovative nature of the HD research community is at it again! In today’s edition of the prestigious journal, Cell, scientists have identified regions of the human genome that can either delay or accelerate the onset of
- [Would ewe believe it? GM1, sheep and Huntington's disease](https://hdsa.org/news/would-ewe-believe-it-gm1-sheep-and-huntingtons-disease/)
- [ISIS Pharmaceuticals Initiates Clinical Study of Huntingtin Lowering Drug in HD Patients](https://hdsa.org/news/isis-pharmaceuticals-initiates-clinical-study-of-huntington-lowering-drug-in-hd-patients/)
- [30th Annual Convention is a Huge Success for the Huntington's Disease Society of America](https://hdsa.org/news/30th-annual-convention-is-a-huge-success-for-the-huntingtons-disease-society-of-america/) - The Lion’s Mouth Opens’ Marianna Palka Receives 2015 HDSA Person of Year Award New York, NY (June 2015) – The Huntington's Disease Society of America (HDSA) hosted its 30th Annual Convention at the Hyatt Regency at Reunion in Dallas, Texas on June 25th-27th. More than 800 guests attended the world's largest Huntington's disease convention which
- [Calling all HD families: Our time to be heard is now!](https://hdsa.org/news/calling-all-hd-families-our-time-to-be-heard-is-now/) - Register today to help the FDA understand what symptoms and therapies matter most to HD patients and families In 2013, Huntington’s disease (HD) was selected by the U.S. Food & Drug Administration (FDA) as one of only 20 diseases that would have a Patient-Focused Drug Development meeting scheduled before 2016. The purpose of this meeting
- [Huntington's Disease Society Of America Receives CHARITYWATCH Top-Rated Status](https://hdsa.org/news/huntingtons-disease-society-of-america-receives-charitywatch-top-rated-status/) - New York, NY (June 2015) – The Huntington’s Disease Society of America (HDSA) has received Top-Rated status from CharityWatch. CharityWatch is a national charity monitoring group and information service dedicated to helping donors make more informed charitable giving decisions. Thousands of individual, corporate and foundation donors recognize CharityWatch as one of the leading sources of
- [HDSA Supports 21st Century Cures Act](https://hdsa.org/news/hdsa-supports-21st-century-cures-act/)
- [NIH Names Walter J. Koroshetz, M.D. Director of the National Institute of Neurological Disorders and Stroke](https://hdsa.org/news/nih-names-walter-j-koroshetz-m-d-director-of-the-national-institute-of-neurological-disorders-and-stroke/)
- [Life in HD Earns Rave Reviews for  the Huntington’s Disease Society of America](https://hdsa.org/news/life-in-hd-earns-rave-reviews-for-the-huntingtons-disease-society-of-america/) - For Immediate Release Contact: Christopher Cosentino Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org Lisa Genova, Allie LaForce. Anna Canoni & Marc Scibilia Team Up to Support HD Awareness Month New York, NY (May 2015) – After folk music legend Woody Guthrie died from complications with Huntington’s disease (HD) in 1967 at
- [HDBUZZ: Switching it up: variety in the HD gene affects symptom onset](https://hdsa.org/news/hdbuzz-switching-it-up-variety-in-the-hd-gene-affects-symptom-onset/)
- [2015 Postcard from Palm Springs](https://hdsa.org/news/2015-postcard-from-palm-springs/)
- [HDBuzz article - A faulty filter? Blood vessel changes in Huntington's disease](https://hdsa.org/news/hdbuzz-article-a-faulty-filter-blood-vessel-changes-in-huntingtons-disease/)
- [2015 Huntington's Disease Therapeutics Conference and taking part in trials](https://hdsa.org/news/2015-huntingtons-disease-therapeutics-conference-and-taking-part-in-trials/) - Dr Jeff Carroll and Dr Ed Wild select their personal highlights from the 2015 HD Therapeutics Conference in February, including encouraging updates on several 'flavors' of gene silencing drug, and new ways of sharing hot-off-the-press data. Plus, we highlight some ways of finding out what trials you can volunteer for, and suggestions of what to
- [Gene variant determines early or late onset of Huntington's disease](https://hdsa.org/news/gene-variant-determines-early-or-late-onset-of-huntingtons-disease/) - A gene variant that influences whether Huntington’s disease breaks out earlier or later than expected has been identified by researchers. The findings can contribute to improved diagnosis and disease-modifying therapies, the group says.
- [Life in HD: A Conversation with Lisa Genova Tickets Now on Sale](https://hdsa.org/news/life-in-hd-a-conversation-with-lisa-genova-tickets-now-on-sale/) - For Immediate Release Contact: Christopher Cosentino Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org Lisa Genova, Allie LaForce & Marc Scibilia Team Up to Fight HD During Huntington’s Disease Awareness Month New York, NY (May 1, 2015) – The Huntington’s Disease Society of America (HDSA) announced today that tickets for the highly
- [Huntington’s Disease Society of America Announces Winners of  2015 Donald A. King Summer Research Fellowship](https://hdsa.org/news/huntingtons-disease-society-of-america-announces-winners-of-2015-donald-a-king-summer-research-fellowship/) - For Immediate Release Contact: Christopher Cosentino Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org Scientists working at Rush Medical College, University of Pittsburgh and St. Mary’s College of California awarded fellowships to work on Huntington’s disease projects New York, NY (April 21, 2015) -- The Huntington’s Disease Society of America
- [Lighting the way: A new biomarker for Huntington’s disease](https://hdsa.org/news/lighting-the-way-a-new-biomarker-for-huntingtons-disease/) - A new biomarker reveals brain changes in early Huntington's disease. By Melissa Christianson on April 20, 2015Edited by Dr Jeff Carroll In Huntington’s disease, brain cells begin dying long before disease symptoms arise. Unfortunately, good tools for monitoring early brain changes – and testing whether new therapies slow or stop them – have not previously
- [New York Times Bestselling Author Lisa Genova to release Inside the O'Briens](https://hdsa.org/news/new-york-times-bestselling-author-lisa-genova-to-release-inside-the-obriens/) - New York, NY (April 7, 2015) – On April 7th, New York Times bestselling author and neuroscientist Lisa Genova will be releasing her 4th novel, Inside the O’Briens which is about a family dealing with Huntington’s disease. Lisa’s previous book, Still Alice, was made into a major motion picture starring Julianne Moore, Alec Baldwin, Kristin Stewart and Kate Bosworth. Julianne Moore won
- [Huntington's Disease Society of America Launches HD TrialFinder First-Of-Its-Kind Clinical Trial Matching Service For Huntington's Disease](https://hdsa.org/news/huntingtons-disease-society-of-america-launches-hd-trialfinder-first-of-its-kind-clinical-trial-matching-service-for-huntingtons-disease/) - For Immediate Release HDSA's HD TrialFinder Connects People with Clinical Studies in Their Area New York, NY (April 7, 2015) – The Huntington’s Disease Society of America HD TrialFinder is a free, easy-to-use clinical trial matching service that connects individuals with Huntington’s disease, caregivers, healthy volunteers and physicians with current studies. The continuously updated database
- [Jang-Ho Cha, MD, PhD Appointed Chairman of the Board of Trustees at the Huntington’s Disease Society of America](https://hdsa.org/news/jang-ho-cha-md-phd-appointed-chairman-of-the-board-of-trustees-at-the-huntingtons-disease-society-of-america/) - For Immediate Release Contact: Christopher Cosentino Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org JANG-HO CHA, MD, PHD APPOINTED CHAIRMAN OF THE BOARD OF TRUSTEES AT THE HUNTINGTON'S DISEASE SOCIETY OF AMERICA New York, NY (December 2014) – Dr. Jang-Ho Cha, MD, PhD. has been appointed Chairman of the Board of Trustees at the Huntington’s Disease Society of America (HDSA). “This is an exciting time for
- [Pitt Study Demonstrates How Huntington’s Disease Protein Disrupts a Novel Cellular Pathway to Cause Death of Neurons](https://hdsa.org/news/pitt-study-demonstrates-how-huntingtons-disease-protein-disrupts-a-novel-cellular-pathway-to-cause-death-of-neurons/) - PITT STUDY SHOWS FOR THE FIRST TIME HOW HUNTINGTON'S DISEASE PROTEIN COULD CAUSE DEATH OF NEURONS PITTSBURGH, May 18, 2014 – Scientists at the University of Pittsburgh School of Medicine have identified for the first time a key molecular mechanism by which the abnormal protein found in Huntington’s disease can cause brain cell death. The
- [Huntington’s Disease Society of America Announces Winners of the 2014 Donald A. King Summer Research Fellowship](https://hdsa.org/news/huntingtons-disease-society-of-america-announces-winners-of-the-2014-donald-a-king-summer-research-fellowship/) - Scientists at Keck Graduate Institute, Massachusetts General Hospital and Northwestern University awarded fellowships to work on Huntington’s disease projects New York, NY (April 2014) – The Huntington’s Disease Society of America (HDSA) is pleased to announce that Courtney Hanlon (Keck Institute), Wenli Dai (Northwestern University) and Varsha Prabhakar (Smith College) are the three recipients
- [Law Enforcement Toolkit II Webinar Now Available](https://hdsa.org/news/law-enforcement-toolkit-ii-webinar-now-available/) - To view power point presentation please click here.
- [Huntington’s Disease Society of America Announces First-Ever HD Human Biology Project Awards](https://hdsa.org/news/huntingtons-disease-society-of-america-announces-first-ever-hd-human-biology-project-awards/) - FOR IMMEDIATE RELEASE Contact: Mynelly Perez 212-242-1968, ext 214 mperez@hdsa.org Huntington’s Disease Society of America Announces First-Ever HD Human Biology Project Awards New York, NY, October 3, 2013 -- The Huntington’s Disease Society of America (HDSA) is pleased to announce that four research grants have been awarded to launch the Society’s new research initiative,
- [Huntington's Disease Society of America Endorses Enroll-HD](https://hdsa.org/news/huntingtons-disease-society-of-america-endorses-enroll-hd/) - New York, NY, February 21, 2014 -- The Huntington’s Disease Society of America (HDSA) is pleased to announce its endorsement of the Enroll-HD prospective registry study, a global effort to collect a common set of clinical data and biological samples that will help scientists better understand the disease and support both the recruitment and conduct
- [Pride-HD Study Enrolling Patients Globally to Further Evaluate Pridopidine for the Symptomatic Treatment of Huntington’s Disease](https://hdsa.org/news/pride-hd-study-enrolling-patients-globally-to-further-evaluate-pridopidine-for-the-symptomatic-treatment-of-huntingtons-disease/) - – Study initiation represents significant milestone for patients with a disease with limited effective treatment options – JERUSALEM--(BUSINESS WIRE)--Apr. 24, 2014-- Teva Pharmaceutical Industries Ltd. (NYSE: TEVA) announced today enrollment of the first patient in The Pride-HD study, a phase II, randomized, double-blind, placebo-controlled global study designed to evaluate the impact of pridopidine, an investigational
- [HDSA appoints Director of Marketing & Communications](https://hdsa.org/news/hdsa-appoints-director-of-marketing-communications/) - New York, NY (May 2014) – The Huntington’s Disease Society of America (HDSA) recently announced the appointment of Christopher Cosentino as Director of Marketing & Communications. He will oversee the organization’s national marketing and branding efforts, as well as provide media support for the 54 volunteer-based HDSA Chapters and Affiliates across the United States. “We’re
- [World leader in movement disorders Professor Ira Shoulson joins Prana Board](https://hdsa.org/news/world-leader-in-movement-disorders-professor-ira-shoulson-joins-prana-board/) - MELBOURNE, Australia, May 14, 2014 /PRNewswire/ -- Prana Biotechnology (ASX:PBT, NASDAQ: PRAN) is pleased to announce Professor Ira Shoulson will join the Company's Board of Directors as a Non-Executive Director. Professor Shoulson is one of the world's foremost experts in neurodegenerative diseases and movement disorders, and the founder of international academic consortia the Huntington Study
- [Huntington’s Disease Society of America Launches First “HD News” App](https://hdsa.org/news/huntingtons-disease-society-of-america-launches-first-hd-news-app/) - For Immediate Release Contact: Christopher Cosentino Director of Marketing & Communications Phone: (212) 242-1968 x229 Email: ccosentino@hdsa.org New York, NY (June 2014) – The Huntington’s Disease Society of America (HDSA) announced today the launch of its new Huntington’s disease (HD) news app that is available for all mobile devices. The app was unveiled during
- [2CARE HD Clinical Trial Stopped Early for Lack of Benefit](https://hdsa.org/news/2care-hd-clinical-trial-stopped-early-for-lack-of-benefit/) - The Huntington Study Group (HSG) and National Institute for Neurologic Disease and Stroke (NINDS) has announced that their 2CARE clinical trial, examining coenzyme Q10 for the treatment of Huntington disease patients was terminated early because of futility. For more information on the termination of the 2CARE trial please see the HSG announcement here.
- [HDBuzz: 2CARE Study of Coenzyme Q for Huntington's Disease Ends](https://hdsa.org/news/hdbuzz-2care-study-of-coenzyme-q-for-huntingtons-disease-ends/)
- [Auspex Pharmaceuticals Completes Enrollment in Phase 3 Clinical Trial of SD-809 in Chorea Associated With Huntington's Disease (FIRST-HD)](https://hdsa.org/news/auspex-pharmaceuticals-completes-enrollment-in-phase-3-clinical-trial-of-sd-809-in-chorea-associated-with-huntingtons-disease-first-hd/)
- [Huntington’s Disease Society of America Awards Additional HD Human Biology Project](https://hdsa.org/news/huntingtons-disease-society-of-america-awards-additional-hd-human-biology-project/) - The Huntington’s Disease Society of America (HDSA) is pleased to announce that a ninth research grant has been awarded under the Society’s largest research initiative, the HDSA Huntington’s Disease Human Biology Project. The latest recipient is Dr. Daniel Wilton from Boston Children’s Hospital/Harvard Medical School. Dr. Wilton will be working under the guidance of Dr.
- [Global Outcomes Data and Possible New Therapies in the Huntington's Pipeline](https://hdsa.org/news/global-outcomes-data-and-possible-new-therapies-in-the-huntingtons-pipeline/)

## Events

- [2026 Team Hope Walk - Greer, SC](https://hdsa.org/events/2026-team-hope-walk-greer-sc/)
- [2026 HDSA Community Day at Riverbanks Zoo & Garden](https://hdsa.org/events/2026-hdsa-community-day-at-riverbanks-zoo-garden/)
- [2026 Team Hope Walk - West Michigan](https://hdsa.org/events/2026-team-hope-walk-west-michigan/)
- [2026 Team Hope Walk - Adrian, MI](https://hdsa.org/events/2026-team-hope-walk-adrian-mi/)
- [2026 Grahlman Golf Outing - Iowa](https://hdsa.org/events/2026-grahlman-golf-outing-iowa/)
- [2026 Team Hope Walk/5K - Boca Raton, FL](https://hdsa.org/events/2026-team-hope-walk-5k-boca-raton-fl/)
- [2026 Team Hope Walk - Gainesville, FL](https://hdsa.org/events/2026-team-hope-walk-gainesville-fl/)
- [2026 Team Hope Walk - Philadelphia](https://hdsa.org/events/2026-team-hope-walk-philadelphia/)
- [2026 Team Hope Walk - Orlando, FL](https://hdsa.org/events/2026-team-hope-walk-orlando-fl/)
- [2026 Team Hope Walk - Portland, OR](https://hdsa.org/events/2026-team-hope-walk-portland-or/)
- [2026 Team Hope Walk - Los Angeles](https://hdsa.org/events/2026-team-hope-walk-los-angeles/)
- [2026 Team Hope Walk - Fox Valley, WI](https://hdsa.org/events/2026-team-hope-walk-fox-valley-wi/)
- [2026 Team Hope Walk - Santa Barbara](https://hdsa.org/events/2026-team-hope-walk-santa-barbara/)
- [12 Annual Woods Warriors](https://hdsa.org/events/12-annual-woods-warriors/)
- [2026 South Region Celebration of Hope](https://hdsa.org/events/2026-south-region-celebration-of-hope/)
- [Tee Off Fore HD - King Of Prussia, PA](https://hdsa.org/events/tee-off-fore-hd-king-of-prussia-pa/)
- [John Lattin Memorial Golf Tournament](https://hdsa.org/events/john-lattin-memorial-golf-tournament/)
- [2026 Education Day - West Lafayette](https://hdsa.org/events/2026-education-day-west-lafayette/)
- [2026 Cleveland Celebration of Hope](https://hdsa.org/events/2026-cleveland-celebration-of-hope/)
- [2026 IL Chapter TopGolf](https://hdsa.org/events/2026-il-chapter-topgolf/)
- [2026 Chicago Celebration of Hope](https://hdsa.org/events/2026-chicago-celebration-of-hope/)
- [2026 Team Hope Walk - Barboursville, WV](https://hdsa.org/events/2026-team-hope-walk-barboursville-wv/)
- [2026 Iowa Celebration of Hope](https://hdsa.org/events/2026-iowa-celebration-of-hope/)
- [2026 Team Hope Walk - Tampa](https://hdsa.org/events/2026-team-hope-walk-tampa/)
- [Celebration of Hope Brunch & Brew - Central Ohio](https://hdsa.org/events/celebration-of-hope-brunch-brew-central-ohio/)
- [2026 Education Day - Nashville, TN](https://hdsa.org/events/2026-education-day-nashville-tn/)
- [2026 Patient Education Day, West Virginia](https://hdsa.org/events/2026-patient-education-day-west-virginia/)
- [2026 Team Hope Walk - Fairfield County](https://hdsa.org/events/2026-team-hope-walk-fairfield-county/)
- [2026 Team Hope Walk - Tucson, AZ](https://hdsa.org/events/2026-team-hope-walk-tucson/)
- [2026 Team Hope Walk - New York City](https://hdsa.org/events/2026-team-hope-walk-new-york-city/)
- [2026 Team Hope Walk - Southwest Michigan](https://hdsa.org/events/2026-team-hope-walk-southwest-michigan/)
- [2026 Team Hope Walk - Detroit, MI](https://hdsa.org/events/2026-team-hope-walk-detroit-mi/)
- [2026 Team Hope Walk - Tennessee](https://hdsa.org/events/2026-team-hope-walk-tennessee/)
- [2026 Huntin' Birdies For Huntington's](https://hdsa.org/events/2026-huntin-birdies-for-huntingtons/)
- [2026 Team Hope Walk - North Carolina](https://hdsa.org/events/2026-team-hope-walk-north-carolina/)
- [2026 Team Hope Walk - Erie, PA](https://hdsa.org/events/2026-team-hope-walk-erie-pa/)
- [2026 Team Hope Walk - Buffalo (Walk & Adventure Day)](https://hdsa.org/events/2026-team-hope-walk-buffalo-walk-adventure-day/)
- [2026 Celebration of Hope: Casino Night - Tempe, AZ](https://hdsa.org/events/2026-celebration-of-hope-casino-night-temple-az/)
- [2026 Team Hope Walk - Bozeman](https://hdsa.org/events/2026-team-hope-walk-bozeman/)
- [2026 Team Hope Walk - San Diego](https://hdsa.org/events/2026-team-hope-walk-san-diego/)
- [2026 Team Hope Walk - Hudson Valley](https://hdsa.org/events/2026-team-hope-walk-hudson-valley/)
- [2026 Etch Golf Outing - WI](https://hdsa.org/events/2026-etch-golf-outing-wi/)
- [2026 Celebration of Hope - Missouri](https://hdsa.org/events/2026-celebration-of-hope-missouri/)
- [2026 Tee Off Fore HD - South Dakota](https://hdsa.org/events/2026-tee-off-fore-hd-south-dakota/)
- [2026 Midwest Golf Tournament - St. Louis](https://hdsa.org/events/2026-midwest-golf-tournament-st-louis/)
- [2026 Team Hope Walk - Sacramento](https://hdsa.org/events/2026-team-hope-walk-sacramento/)
- [2026 Family Is Everything Golf Tournament - Iowa](https://hdsa.org/events/2026-family-is-everything-golf-tournament-iowa/)
- [2026 Indiana Statewide Team Hope Walk](https://hdsa.org/events/2026-indiana-statewide-team-hope-walk/)
- [2026 Team Hope Walk - Atlanta, GA](https://hdsa.org/events/2026-team-hope-walk-atlanta-ga/)
- [2026 Team Hope Walk - Arkansas](https://hdsa.org/events/2026-team-hope-walk-arkansas/)
- [2026 Team Hope Walk - Long Island](https://hdsa.org/events/2026-team-hope-walk-long-island/)
- [10th Annual Fairways for Hope Charity Golf Tournament - Littleton, CO](https://hdsa.org/events/10th-annual-fairways-for-hope-charity-golf-tournament-littleton-co/)
- [2026 Team Hope Walk - Twin Cities, MN](https://hdsa.org/events/2026-team-hope-walk-twin-cities-mn/)
- [2026 Team Hope Walk - Tampa, FL](https://hdsa.org/events/2026-team-hope-walk-5k-miami-fl/)
- [2026 Anita Sabedra Team Hope Walk - Houston](https://hdsa.org/events/2026-anita-sabedra-team-hope-walk-houston/)
- [2026 Team Hope Walk - San Antonio, TX](https://hdsa.org/events/2026-team-hope-walk-san-antonio-tx/)
- [2026 Team Hope Walk - Tyler, Texas](https://hdsa.org/events/2026-team-hope-walk-tyler-texas/)
- [2026 Team Hope Walk - Ohio Valley, OH](https://hdsa.org/events/2026-team-hope-walk-ohio-valley-oh/)
- [2026 Team Hope Walk - Greater North Texas](https://hdsa.org/events/2026-team-hope-walk-greater-north-texas/)
- [2026 Team Hope Walk - Baton Rouge, LA](https://hdsa.org/events/2026-team-hope-walk-baton-rouge-la/)
- [2026 Team Hope Walk & Walk & Time 5k Run - San Francisco](https://hdsa.org/events/2026-team-hope-walk-walk-time-5k-run-san-francisco/)
- [2026 Team Hope Walk - St. Louis, MO](https://hdsa.org/events/2026-team-hope-walk-st-louis-mo/)
- [2026 Team Hope Walk - Duluth, MN](https://hdsa.org/events/2026-team-hope-walk-duluth/)
- [2026 Team Hope Walk - Omaha, NE](https://hdsa.org/events/2026-team-hope-walk-omaha-ne/)
- [2026 Team Hope Walk - Oklahoma City](https://hdsa.org/events/2026-team-hope-walk-oklahoma-city/)
- [2026 Team Hope Walk - Milwaukee, WI - Jim Christus Memorial](https://hdsa.org/events/2026-team-hope-walk-milwaukee-wi-jim-christus-memorial/)
- [2026 Team Hope Walk - Traverse City, MI](https://hdsa.org/events/2026-team-hope-walk-traverse-city-mi/)
- [2026 Team Hope Walk - Salt Lake City, UT](https://hdsa.org/events/2026-team-hope-walk-salt-lake-city-ut/)
- [2026 Trivia Night - Missouri](https://hdsa.org/events/2026-trivia-night-missouri/)
- [2026 Team Hope Walk - Reno, NV](https://hdsa.org/events/2026-team-hope-walk-reno-nv/)
- [2026 Swing Fore Hope Golf Outing - West Virginia](https://hdsa.org/events/2026-swing-fore-hope-golf-outing-west-virginia/)
- [10th Annual Yoga In The Park - MI](https://hdsa.org/events/10th-annual-yoga-in-the-park-mi/)
- [2026 Team Hope Walk - Madison WI](https://hdsa.org/events/2026-team-hope-walk-madison-wi/)
- [2026 HDSA Annual Convention - Phoenix, AZ](https://hdsa.org/events/2026-hdsa-annual-convention-phoenix-az/)
- [2026 Heroes and Villains Team Hope 5K Run & Walk - Denver, CO](https://hdsa.org/events/2026-heroes-and-villains-team-hope-5k-run-walk-denver-co/)
- [2026 Team Hope Walk - Zionsville, IN](https://hdsa.org/events/2026-team-hope-walk-zionsville-in/)
- [2026 Team Hope Walk - Spokane, WA](https://hdsa.org/events/2026-team-hope-walk-spokane-wa/)
- [2026 Team Hope Walk - Liberty, MO](https://hdsa.org/events/2026-team-hope-walk-liberty-mo/)
- [2026 Team Hope Walk - Central Ohio](https://hdsa.org/events/2026-team-hope-walk-central-ohio/)
- [2026 Team Hope Walk - Loda, IL](https://hdsa.org/events/2026-team-hope-walk-loda/)
- [2026 Team Hope Walk - Springfield](https://hdsa.org/events/2026-team-hope-walk-springfield/)

## Volunteers

- [Reagan Sellers- HDSA Tennessee Chapter](https://hdsa.org/volunteer/reagan-sellers-hdsa-tennessee-chapter/) - Reagan Sellers is the President of the Huntington’s Disease Society of America’s Tennessee Chapter. Her journey with HDSA began in 2008 when her aunt, Tami Brundage, was diagnosed with Huntington’s disease. As a primary caregiver for her aunt for over a decade, Reagan developed a deep understanding of the challenges faced by families affected by
- [Amy Watkin- HDSA Northern Plains Chapter](https://hdsa.org/volunteer/amy-watkin/) - Amy Watkin joined the Northern Plains Chapter of HDSA as its president in January 2023 and has been working diligently to grow the chapter ever since. Fargo, North Dakota, is fortunate to have a Center of Excellence, and Amy, along with the other Northern Plains Chapter board members, has partnered with them to host an
- [Shana Verstegen- HDSA Wisconsin Chapter](https://hdsa.org/volunteer/shana-verstegen/) - Shana Verstegen’s journey with the Huntington’s Disease Society of America (HDSA) is a powerful testament to her dedication to the HD community. For over two decades, Shana has been a steadfast volunteer, most notably through her creation and organization of the Re-Prom Celebration of Hope Gala. The idea for Re-Prom came from a conversation at
- [Ramona Mead- HDSA Pacific West Region](https://hdsa.org/volunteer/ramona-mead-hdsa-pacific-west-region/) - Over three years ago, Ramona Mead reached out to HDSA with a simple yet powerful goal: to bring the mission of HDSA to Montana. What began as a single inquiry has grown into a vibrant community making a meaningful impact across the state. “I didn’t know HD was in my family history until late in
- [John Stevens - HDSA New Jersey Chapter](https://hdsa.org/volunteer/john-stevens-hdsa-new-jersey-chapter/) - The Huntington’s Disease Society of America (HDSA) is excited to recognize John Stevens for all his amazing work with the New Jersey Chapter. Since joining the chapter board in 2023, John has made a remarkable impact in a short amount of time. He was key in organizing the chapter’s First Annual Tee Off Fore HD
- [Nicolas Caraballo and Ruby Rodriguez- HDSA Florida Chapter](https://hdsa.org/volunteer/nicolas-caraballo-and-ruby-rodriguez/) - The Huntington’s Disease Society of America (HDSA) is proud to shine a spotlight on Nicolas Caraballo and Ruby Rodriguez. Their dedication, compassion, and tireless efforts are making a significant impact on the lives of individuals and families affected by Huntington’s disease. Nicolas and Ruby, sophomores at Gulliver Preparatory School in Miami, have transformed a class
- [Sabedra Family- HDSA Greater Houston Area Affiliate](https://hdsa.org/volunteer/sabedra-family-hdsa-greater-houston-area-affiliate/) - The Huntington’s Disease Society of America (HDSA) is proud to shine a spotlight on the Sabedra family, whose unwavering commitment to raising awareness and funds for Huntington's Disease (HD) has had an incredible impact over the past decade. The Sabedra family’s journey with HD began in 2007 when Anita Sabedra, the beloved grandmother, “MoMo,” was
- [Sarah Weber- HDSA Southern Idaho Affiliate](https://hdsa.org/volunteer/sarah-weber-hdssouthern-idaho-affiliate/) - Southern Idaho volunteer, Sarah Weber, has been an incredible leader and advocate for HDSA and the HDSA Southern Idaho Affiliate for many years, including leading as the current Team Hope Walk Boise Event Chair. She has brought leadership and creativity to this Affiliate and has helped build a wonderful community for HD patients and their
- [Laura Humbert- HDSA Western Pennsylvania Chapter](https://hdsa.org/volunteer/laura-humbert-hdsa-western-pennsylvania-chapter/) - Laura became involved with the HDSA Western Pennsylvania Chapter around 35 years ago, when she and her mother began helping out with mailings, and Laura assisted with the longest W. PA fundraiser, Charlotte's Run. Laura, since the beginning, has been a mainstay and volunteer for this annual fundraiser and in supporting the event organizer, Alex Andres,
- [Sydnee McIlvaine- HDSA New Jersey Chapter](https://hdsa.org/volunteer/sydnee-mcilvaine-new-jersey-chapter/) - Sydnee Mcilvaine joined the HDSA New Jersey Chapter in January 2023 as an undergraduate student at Rutgers University studying genetics. Sydnee’s active involvement in the chapter was evident from the start as she assumed the role of co-chair of the Youth Outreach Committee and took charge of managing the chapter’s social media presence. Sydnee has
- [Larry Haigh- HDSA Illinois Chapter](https://hdsa.org/volunteer/larry-haigh-illinois-chapter/) - Larry Haigh is a longstanding volunteer and advocate for HDSA and our HD families throughout the state of Illinois and nationwide. Starting as early as participating with the NYA, he has known of HD since he was in college when his grandmother was diagnosed. He knew right when he found out that Huntington’s disease runs
- [Doreen Heikes- HDSA South Dakota Chapter](https://hdsa.org/volunteer/doreen-heikes-hdsa-south-dakota-chapter/) - Huntington's Disease Society of America

## Products

- [The Marker (Formerly Research Report)](https://hdsa.org/product/the-marker-formerly-research-report/) - Look back on the highlights in HD research, advocacy, support and events from across the country! Click here to access library and dowload
- [Huntington's Disease: A Family Guide](https://hdsa.org/product/huntingtons-disease-a-family-guide/) - HDSA, 2016, 17-page booklet. This short booklet offers an overview of HD. DOWNLOAD: Click here for a FREE PDF DOWNLOAD. PURCHASE: You may also order bound, printed copies of this publicationby calling 800-345-4372
- [HDSA FAMILY GUIDE SERIES: <br/>Advanced Directives for Huntington's Disease](https://hdsa.org/product/hdsa-family-guide-series-advanced-directives-for-huntingtons-disease/) - HDSA, 2013, 28-page booklet. This short booklet offers an overview of advanced directives and special considerations around Huntington's disease. DOWNLOAD: Click here for a FREE PDF DOWNLOAD. PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372
- [HDSA FAMILY GUIDE SERIES: <br/>Genetic Testing - Huntington's Disease](https://hdsa.org/product/hdsa-family-guide-series-genetic-testing-huntingtons-disease/) - HDSA, 2009, 18-page booklet. An introductory guide to genetic testing for HD. DOWNLOAD: Click here for a FREE PDF DOWNLOAD. PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372
- [HDSA FAMILY GUIDE SERIES: <br/>Caregiver’s Guide to Communicating with Healthcare Providers - Huntington's Disease](https://hdsa.org/product/hdsa-family-guide-series-caregivers-guide-to-communicating-with-healthcare-providers-huntingtons-disease/) - HDSA, 2010, 18-page booklet. An introduction to working with healthcare providers and talking about Huntinton's disease. DOWNLOAD: Click here for a FREE PDF DOWNLOAD. PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372
- [The Juvenile HD Handbook: <br/>A Guide for Families and Caregivers (2nd Edition)](https://hdsa.org/product/the-juvenile-hd-handbook-a-guide-for-families-and-caregivers-2nd-edition/) - Martha Nance, MD, 2007. This book provides readers with information about Juvenile HD, including genetic testing, when it is appropriate to perform the test, how to understand your HD affected child, and what to do if you find yourself in compromising situations as well as where to turn for help. DOWNLOAD: Click here for a FREE PDF DOWNLOAD PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372
- [HDSA FAMILY GUIDE SERIES: <br/>Speech-Language and Swallowing Difficulties](https://hdsa.org/product/hdsa-family-guide-series-speech-language-and-swallowing-difficulties/) - Karen Bryant, Ph.D, CCC/SLP, HDSA, 2014, 22-pages. provides information and resources on speech and swallowing problems associated with HD and offers case studies and potential solutions. DOWNLOAD: Click here for a FREE PDF DOWNLOAD. PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372
- [HDSA FAMILY GUIDE SERIES: <br/>Physical and Occupational Therapy - Huntington’s Disease](https://hdsa.org/product/hdsa-family-guide-series-physical-and-occupational-therapy-huntingtons-disease/) - Suzanne Imbriglio, PT, HDSA, 2010. Provides helpful information and resources for people in all stages of HD. Revised and updated in 2010 to include new trends in HD care. DOWNLOAD: Click here for a FREE PDF DOWNLOAD. PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372
- [HDSA FAMILY GUIDE SERIES: <br/>Juvenile Onset HD](https://hdsa.org/product/hdsa-family-guide-series-juvenile-onset-hd/) - Edited by Martha Nance, MD. This pamphlet defines Juvenile HD, diagnosis, specific medical issues, prognosis of the disease, financial, legal and social issues and more. DOWNLOAD: Click here for a FREE PDF DOWNLOAD. PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372
- [HDSA FAMILY GUIDE SERIES: </br> Talking With Kids — Huntington’s Disease](https://hdsa.org/product/hdsa-family-guide-series-talking-with-kids-huntingtons-disease-hdsa-2012-26-page-booklet/) - HDSA, 2012, 26-page booklet. An introductory guide to talking about Huntington’s disease with kids, youth, and teens. DOWNLOAD: Click here for a FREE PDF DOWNLOAD. PURCHASE: You may also order bound, printed copies of this publication by calling 8800-345-4372
- [Talking With Kids About HD](https://hdsa.org/product/talking-with-kids-about-hd/) - HDSA, 2013, 111 pages. A book discussing how to have a conversation with children and family members of any age around Huntington's disease and JHD. DOWNLOAD: Click here for a FREE PDF DOWNLOAD. PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372
- [Serie de Guías Familiares: </br>La Prueba Genética](https://hdsa.org/product/serie-de-guias-familiares-la-prueba-genetica/) - SPANISH / 20 pages Revisado por: Randi Jones, Ph.D., Centro de Excelencia de la HDSA Ami Rosen, CGC, Centro de Excelencia de la HDSA Traducido al español por: Arelis E. Martir-Negron, M.D. DOWNLOAD: Click here for a FREE PDF DOWNLOAD. PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372 ext 222
- [Serie de Guías Familiares:</br> Enfermedad Juvenil de Huntington](https://hdsa.org/product/serie-de-guias-familiares-enfermedad-juvenil-de-huntington/) - SPANISH / 40 pages Editado por: Martha Nance, M.D. / Randi Jones, Ph.D. / Suzanne Imbriglio, P.T. / Betsey Gettig, M.S., C.G.C. Traducido por: DCM, SCVMC-Language Services (ST-4037 – 7/8/2010) DOWNLOAD: Click here for a FREE PDF DOWNLOAD. PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372
- [Serie de Guías Familiares:</br> Cuidados a Largo Plazo Para la EH](https://hdsa.org/product/serie-de-guias-familiares-cuidados-a-largo-plazo-para-la-eh/) - SPANISH / 18 pages Revisado por: Suzanne Imbriglio, PT (Terapista Física) Virginia Goolkasian / Ann Murfitt, MSW., LICSW Traducido al español por: Arelis E. Mártir-Negrón, M.D. DOWNLOAD: Click here for a FREE PDF DOWNLOAD. PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372
- [HDSA FAMILY GUIDE SERIES: <br/>Long-Term Care](https://hdsa.org/product/hdsa-family-guide-series-caregivers-guide-to-communicating-with-healthcare-providers/) - HDSA, 2019, 35-page booklet. This guide is designed to help families facing the challenge of HD learn more about long-term care and to understand what may be involved in arranging this care for a loved one. DOWNLOAD: Click here for a FREE PDF DOWNLOAD PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372
- [Serie de Guías Familiares:</br> La Nutrición y la Enfermedad de Huntington: </br>Una Guía para Familias](https://hdsa.org/product/serie-de-guias-familiares-la-nutricion-y-la-enfermedad-de-huntington-una-guia-para-familias/) - SPANISH / 25 pages Revisado por: Ann Gaba EdD, RD, CDN, CDE Editado por: Karen Tarapata & Deb Lovecky, HDSA Traducido al español por: Arelis E. Mártir-Negrón, MD DOWNLOAD: Click here for a FREE PDF DOWNLOAD. PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372
- [Serie de Guías Familiares:</br> Terapia Fisica y Ocupacional](https://hdsa.org/product/serie-de-guias-familiares-terapia-fisica-y-ocupacional/) - SPANISH / 34 pages Revisado por: Suzanne Imbriglio, PT (Terapista Física) Editado por: Karen Tarapata & Deb Lovecky, HDSA Traducido al español por: Arelis E. Mártir-Negrón, M.D DOWNLOAD: Click here for a FREE PDF DOWNLOAD. PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222.
- [HDSA FAMILY GUIDE SERIES:</br>Nutrition and Huntington’s Disease](https://hdsa.org/product/hdsa-family-guide-seriesnutrition-and-huntingtons-disease/) - Discusses the nutritional needs in early, middle and late stage HD, provides hints for increasing calorie intake and recipes. DOWNLOAD: Click here for a FREE PDF DOWNLOAD. PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372
- [A Caregiver Guide for HD Families](https://hdsa.org/product/a-caregiver-guide-for-hd-families/) - The Caregiver Guide for HD Families includes discussion on the benefits of physical and occupational therapy and nutrition along the continuum of disease progression but also offers practical suggestions for unique home caregiving issues such as driving, the role of young adults as caregivers and managing JHD at home. To download the electronic copy please click here
- [Watching Their Dance](https://hdsa.org/product/watching-their-dance/) - 100% of the proceeds from "Watching Their Dance" is being donated to HDSA To purchase "Watching Their Dance" go to Therese's author website: www.theresecrutchermarin.com It's also available on Amazon, B&N and in Kindle, Nook, Kobo formate. Therese Crutcher-Marin, B.S., M.S. Member on the HDSA Northern California Chapter Board Author of Watching Their Dance: Three Sisters, A Genetic Disease and Marrying Into a Family Living At Risk for Huntington's Synopsis: Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s Would you marry the man you adored if you knew he had a chance of inheriting one of the cruelest diseases on earth? Therese Crutcher is not a risk taker. Through meticulous planning, she eliminates as much uncertainty from her life as she can. Yet during her senior year of college, blithely planning to marry her beloved John Marin, she is suddenly thrown into turmoil when John’s sisters announce they finally know what killed their mother. Phyllis had Huntington’s disease, an inherited neurological disease with horrible odds: John and his three older sisters have a fifty-percent chance of inheriting this terrible wasting disease, which slowly kills the brain cells that affect movement and cognition. There is still no treatment or cure. Therese takes the biggest gamble of her life and marries John despite his precarious future. Thus unfolds a life filled with unpredictability, tough choices, and pain, and yet full of love, good times, and great joy. Therese comes to realize that the uncertainty she willingly took on has opened her heart to love more deeply; that acknowledging her world could change overnight has made her life richer. She has learned to overlook shortcomings and to compromise, to let go of anger when she can’t control a situation, to find joy in the simple things. Life is just too precious to waste a moment on small stuff. And though John’s sisters leave this world far too soon, the Marin siblings, she realizes, have taught her about embracing life, forgiveness, and unconditional love. Visit my Author Website: theresecrutchermarin.com Visit my Author Facebook Page: https://www.facebook.com/authortheresecrutchermarin/ Amazon Author Page: https://www.amazon.com/author/theresecrutchermarin amazon.com/author/theresecrutchermarin https://www.goodreads.com/book/show/34703766-watching-their-dance
- [FOR HD INDIVIDUALS & FAMILIES: </br>Caregiver Guide & Support Documents](https://hdsa.org/product/for-hd-individuals-families-caregiver-guide-support-documents/) - This booklet contains general guidelines for working with law enforcement, feedback regarding situations that may cause confrontations, and information about what to do in case of arrest or detainment. DOWNLOADS: CAREGIVER GUIDE: Click for a FREE PDF DOWNLOAD. I have HD Card: A wallet card with information about HD. HD Profile Card: A form that can be personalized with an individual’s photo and identifying information. My Crisis Template: A form that can be personalized with emergency numbers. For additional copies please contact hdsainfo@hdsa.org
- [FOR LAW ENFORCEMENT PROFESSIONALS <br/>& FIRST RESPONDERS: <br/>Law Enforcement Training Guide & Fact Sheet](https://hdsa.org/product/for-law-enforcement-professionals-first-responders-law-enforcement-training-guide-fact-sheet/) - This booklet contains an introduction to HD, and information about managing the motor disorder, the cognitive disorder, and the psychiatric disorder. It also contains a list of supporting questions to ask the caregiver, as well as information about special issues that arise in incarceration and confinement. DOWNLOADS: LAW ENFORCEMENT TRAINING GUIDE: Click for a FREE PDF DOWNLOAD. Key Points for Law Enforcement FACT SHEET: A one-page document containing key points for law enforcement (prints double-sided on legal size paper). For additional copies please contact hdsainfo@hdsa.org
- [What to Know: Entering the Workforce](https://hdsa.org/product/what-to-know-entering-the-workforce/) - What to Know: Entering the Workforce
- [Juvenile HD and the School Experience: Education and the Child Affected by Juvenile Onset HD](https://hdsa.org/product/juvenile-hd-and-the-school-experienceeducation-and-the-child-affected-by-juvenile-onset-hd/) - Edited by Martha Nance, MD. This book provides support and guidance to schools who have a student with Juvenile HD DOWNLOAD: Click here for a FREE PDF DOWNLOAD
- [HDSA Brochure](https://hdsa.org/product/hdsa-brochure/) - Click Here To Download
- [Long Term Care Monograph](https://hdsa.org/product/long-term-care-monograph/) - Report based on the work of the HDSA Long Term Care Workgroup DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
- [Lifting the Veil of Huntington’s Disease: Recommendations to the Field from the Huntington’s Disease Peer Workgroup](https://hdsa.org/product/lifting-the-veil-of-huntingtons-disease-recommendations-to-the-field-from-the-huntingtons-disease-peer-workgroup/) - Recommendations to the field from the Huntington's Disease peer workgroup DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
- [Guía Para Medico Sobre el Manejo de la</br> Enfermedad de Huntington Tercera Edición](https://hdsa.org/product/guia-para-medico-sobre-el-manejo-de-la-enfermedad-de-huntington-tercera-edicion/) - SPANISH / 125 pages DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
- [Datos Rapidos Sobre la EH](https://hdsa.org/product/datos-rapidos-sobre-la-eh/) - SPANISH / 2 pages DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
- [Serie de Guías Familiares:</br> La Enfermedad de Huntington](https://hdsa.org/product/serie-de-guias-familiares-la-enfermedad-de-huntington/) - SPANISH / 18 pages Revisado por: Kathleen Shannon, M.D., Centro de Excelencia de la HDSA Steven Hersch, M.D., Ph.D., Centro de Excelencia de la HDSA Editado por: Karen Tarapata & Deb Lovecky, HDSA Traducido al español por: Arelis E. Martir-Negron, M.D. DOWNLOAD: Click here for a FREE PDF DOWNLOAD. PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222
- [Serie de Guías Familiares:</br> Comunicación con los Proveedores de Salud: </br>Guía para los Cuidadores](https://hdsa.org/product/serie-de-guias-familiares-comunicacion-con-los-proveedores-de-salud-guia-para-los-cuidadores/) - SPANISH / 18 pages Revisado por: Vicki Wheelock, M.D. Centro de Excelencia de la HDSA Editado por: Karen Tarapata & Deb Lovecky, HDSA Traducido al español por: Arelis E. Martir-Negron, M.D. DOWNLOAD: Click here for a FREE PDF DOWNLOAD. PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222
- [A Caregiver's Guide to Huntington's Disease](https://hdsa.org/product/a-caregivers-guide-to-huntingtons-disease/) - US Huntington's Disease Genetic Testing Group Revised 2003, 27 Pages. Presents the current diagnostic usefulness of genetic testing for HD and discusses the results of surveys that evaluate issues related to testing individuals at risk for this disease. This publication is extremely useful not only to those working in the HD community, but to all professionals who care for patients with adult-onset genetic disorders. DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
- [HDSA Year in Review](https://hdsa.org/product/hdsa-year-in-review-the-marker/) - Look back on the highlights in HD research, advocacy, support and events from across the country! DOWNLOAD: Click the links below for FREE PDF DOWNLOADS. Year In Review 2022 Year In Review 2021 Year In Review 2020 Year In Review 2019 Year In Review 2018 Year in Review 2017 Year in Review 2016 Year in Review 2015 Year In Review 2014
- [iGive.com](https://hdsa.org/product/igive-com/) - Like to help HDSA in a big way? Buy something for yourself. Better yet, buy a lot of somethings for yourself! But first join www.igive.com/hdsa Because whenever you purchase everyday items at the Mall at iGive, up to 30% (actual amount of donation varies on a day to day basis and from store to store, for an up to date listing on actual donation by store please click here) of every purchase is donated to HDSA, at no cost to you! Wait, there’s more. At iGive.com you get free membership… access to the over 600 brand-name merchants like Barnes & Noble, Eddie Bauer, Lands’ End and PETsMART… super savings and deals every day … and of course, free donations to HDSA! Join www.igive.com/hdsa and then shop till you drop. We’ll appreciate it!
- [A Physician's Guide to the Management of Huntington's Disease (3rd edition)](https://hdsa.org/product/a-physicians-guide-to-the-management-of-huntingtons-disease-3rd-edition/) - Martha A. Nance, MD, Jane S. Paulsen, PhD, Adam Rosenblatt, MD, Vicki Wheelock, MD, HDSA 2011. Includes in-depth information on principles of treatment, genetic testing, medications, management of cognitive and behavioral problems and a new section with case studies. DOWNLOAD: Click here for a FREE PDF DOWNLOAD. To order bound, printed copies of this publication click Here
- [Caregiver Guide for Mid to Late Stage Huntington’s Disease:<br/>For Long-Term Care  Facilities and In-Home Care Agencies](https://hdsa.org/product/caregiver-guide-for-mid-to-late-stage-huntingtons-diseasefor-long-term-care-facilities-and-in-home-care-agencies/) - 2014, 116 pages. This guide will provide caregivers with the information and resources that they need to provide the best care to persons with HD — to work through the difficult symptoms to reach the person behind the disease, and to allow the person to function as well as possible each step of the way. The goal of care for the person with Huntington’s disease is to promote independence, freedom of choice, and ability to function within the confines of safety for the person, the family, and the care team. DOWNLOAD: Click here for a FREE PDF DOWNLOAD. SPECIAL OFFER: Thanks to a generous educational grant, HDSA is able to offer free printed copies of this guide to professionals involved with long-term care facilities and in-home care agencies. Click here to fill the form and get a printed copy of this guide.
- [Understanding Behavior in Huntington's Disease: A Guide for Professionals](https://hdsa.org/product/understanding-behavior-in-huntingtons-diseasea-guide-for-professionals/) - Arik C. Johnson, Psy.D., Jane S. Paulsen, Ph.D., 2014, 66 pages. A must-read for anyone who deals extensively with an HD-affected individual, this book explains not only the behavior challenges created by HD, but their origin in the HD-affected brain. By understanding the basis of these behaviors, the authors are able to suggest effective ways of dealing with and preparing for them. The book also covers environmental, individual and health factors that contribute to behavior problems. Problem-solving tips and techniques are given for behaviors arising from communication difficulties, memory problems, cognitive break-down and emotional instability. DOWNLOAD: Click here for a FREE PDF DOWNLOAD. SPECIAL OFFER: Thanks to a generous educational grant, HDSA is able to offer this updated guide available to HD families and their medical professionals at no cost. Since the first edition of Understanding Behavior was published in 2000, much has been added to our understanding about HD including behavioral changes that take place along the continuum of the disease. Written specifically for medical professionals, this second edition contains strategies that can be shared with caregivers as well as case studies that illustrate many of the most challenging behaviors associated with HD. Click here to fill the form and get a printed copy of this guide.
- [Young at Heart: Randolph, Radio and the Road to Retirement](https://hdsa.org/product/young-at-heart-randolph-radio-and-the-road-to-retirement/) - ABOUT THE BOOK Whether you know him as Steve Yanofsky or Steve Young, Young at Heart: Randolph, Radio and the Road to Retirement is an emotional journey down a long and winding road that leads from growing up in Dorchester, then Randolph, to having a terrifying front-row seat at the 2013 Boston Marathon bombing. This journey is also sprinkled with some of Steve’s poetry and intriguing sports stories plus a look at some of his memorable friends, many from Steve’s 41 years in radio, encompassing seven radio stations which he still refers to as “his families.” Today, he enjoys life with his lovely wife, Paula, spending valued time with his son, Daniel, and wife, Merry, plus appreciating all of the benefits of retirement. Young at Heart: Randolph, Radio and the Road to Retirement is also a loving look at treasured time spent with his family who shaped and molded Steve into the man he is today; a man of conscience, trustworthiness, and a self-proclaimed sports geek. We hope you enjoy the journey. 100% of proceeds support HDSA, Chapter 1 discusses HD, the Frank family and HDSA's Hoop-A-Thon. To purchase your copy please click here
- [FADE INTO THE BRIGHT](https://hdsa.org/product/fade-into-the-bright/) - ABOUT THE BOOK Five Feet Apart meets Tell Me Three Things in this YA contemporary novel about two sisters, one summer, and a diagnosis that changes everything. Abby needs to escape a life that she no longer recognizes as her own. Her old life--the one where she was a high school volleyball star with a textbook-perfect future--has been ripped away. Abby and her sister, Brooke, have received a letter from their estranged dad informing them he has Huntington's disease, a fatal, degenerative disorder that you wouldn't wish on your worst enemy. And when the sisters agree to genetic testing, one of them tests positive. Fleeing to Catalina Island for the summer, Abby is relieved to be in a place where no one knows her tragic history. But when she meets aspiring documentary filmmaker Ben--tall, outdoorsy, easygoing, with eyes that don't miss a thing--she's thrown off her game. Ben's the kind of guy who loves to figure out people's stories. What if he learns hers? ABOUT THE AUTHORS Jessica Koosed Etting and Alyssa Embree Schwartz met the first day of freshman year of college and have essentially shared a brain ever since. They've co-authored the YA thriller The Lost Causes and the contemporary YA series Georgetown Academy. The duo also work as screenwriters in both film and television. They were prompted to write this book by a Huntington's disease diagnosis within Jessica's extended family. Please click here to purchase the book
- [I’m Still Me Activity Cards](https://hdsa.org/product/im-still-me-activity-cards/) - I’m Still Me Activity Cards Designed by HD community member Brian Schrag, these light hearted activity cards help persons with HD to engage with those not familiar with HD. As symptoms progress, many times individuals affected by HD find it difficult and at times embarrassing to talk about what is happening to them. I’m still me cards provide a way to connect with the community at large. A set of 50 cards costs $12.00. You can read more about the cards and purchase a set by going to www.etsy.com/shop/SchragCreations. You’ll also find the HD Blues t-shirts he designed.
- [Finding Our Way](https://hdsa.org/product/finding-our-way/) - Read Marjorie Guthrie’s first-hand account of how Huntington’s disease impacted the Guthrie family and how they never gave up hope. Click here to Download
- [An AffaiЯ Worth Remembering With Huntington's Disease](https://hdsa.org/product/an-affaiя-worth-remembering-with-huntingtons-disease/) - Price: $25.00 USD Huntington's Disease is a progressive, life stripping hereditary disease for which there is no cure. LOVE is the most powerful medicine available in living with and caring for a person at-risk and in the throes of it. This is a Love Story that illustrates how a marriage and a family can live, survive and thrive with an illness. Humor, frustration and sadness are just a few emotions experienced by the reader. True Love prevails as this disease bruises and batters a family's spirit. Many gifts are discovered during times of illness. Incurable love and intimacy are two such gifts. This book is the Author's journey as wife, mother, breadwinner, caregiver and widow/spouse survivor of Huntington's Disease. It is about creating "Awareness" and giving the families affected by Huntington's Disease a "Voice" to a situation that few understand including friends, family, co-workers, and the community. Huntington's Disease is REAL and knowledge of the disease and it's ripple effect on a family is REAL. This book speaks to at least four communities, those affected by Huntington's Disease or any chronic, progressive or terminal illness; the spiritual community, those who find strength through faith in the most trying moments; the therapeutic community, those who treat individuals, couples and families affected by illness; and the medical community, those doctors and other medical professionals, whether in primary care or specialists, who treat the patient, their caregivers or other family members of the illness, which can complicate the healing process. Book Talks & Signings: Debbiepausig.books@gmail.com North Haven, CT, USA 203.985.8246 Purchase a signed copy from me personally at www.debbiepausigmft.com in the "Affair Worth Remembering" tab and order via PayPal, then go to the "Contact Me" tab and enter the code DALLAS15 in the notes section and any special inscription you would like. $1.00 from each book sale will be donated to HDSA. Thanks! Or-Purchase via Print on Demand through the publisher at: www.Lulu.com/content/15318021
- [Given Away: A Sicilian Upbringing](https://hdsa.org/product/books/) - Given Away: A Sicilian Upbringing by Anna Randazzo A story of a young girl’s perseverance through the the travails of World War II and beyond. An inspiring tale of the human will to triumph over adversity. 10% of the proceeds from sales of Given Away: A Sicilian Upbringing will benefit HDSA’s mission. TO ORDER: In print: http://www.amazon.com/Given-Away-A-Sicilian-Upbringing/dp/0989481921 E-BOOK: https://www.smashwords.com/books/view/327465
- [Kathy Gibson Prints](https://hdsa.org/product/kathy-gibson-prints/) - Kathy Gibson understands Huntington’s disease and the challenges it poses for both the affected individual and their caregiver. She has used her experience as a caregiver to her sister to create a series of signed, limited archival edition gicleé prints that capture the essence of a person with HD. Her wish, in creating these works, is to validate and remind all caregivers that your journey has meaning as well as to stimulate conversation and understanding among those affected by HD and the caregiving community. Each gicleé image is 11” x 14” (though a few are larger at 14” x 14”). Each costs $125 including tax, shipping and handling. Shown at left are a representative sample of her works. You can view all of these limited edition prints in the Gallery by going to kgibsonart.com. As part of our partnership with Kathy, 15% of your purchase will be donated back to HDSA. To purchase one of these extraordinary prints, contact Kathy at kgibsonart@mediacombb.net. Kathy Gibson is a distinguished multiple media artist living on Maryland’s Eastern Shore. You may have met Kathy when she exhibited a select number of her original works at the 2016 HDSA Annual Convention in Baltimore this past June. EMAIL KATHY GIBSON
- [HDSA flowerpetal.com](https://hdsa.org/product/hdsa-flowerpetal-com/) - Flowerpetal.com is pleased to offer a wide variety of fresh flower arrangements and gift baskets, all professionally arranged and delivered by a local florist. Flowers are the perfect way to express your sentiments for any occasion, whether that be romance, congratulations, thank you, sympathy, or just because. FlowerPetal agrees to pay HDSA 12% of gross sales, net of any local, state, federal taxes & other applicable fees for any flower and gift orders generated by the HDSA and fulfilled by FlowerPetal. You and your friends can visit any time of the year and send flowers and gifts for birthdays, graduations, anniversaries, and holidays; with every purchase you make, you will be helping us improve the lives of those affected by Huntington's disease and their families. Shop hdsa.flowerpetal.com now
- [FTD.com / HDSA](https://hdsa.org/product/ftd-com-hdsa/) - Purchase flowers online or call 1-800 SEND FTD and use code #3015 and 15% of your total purchase will benefit HDSA. SHOP FTD.COM/HDSA NOW
- [HDSA Genetic Testing Protocol for HD](https://hdsa.org/product/genetic-testing-for-huntingtons-disease-its-relevance-and-implications/) - 2016, 20 pages. This document was written by HDSA with input from clinicians, laboratory professionals, and individuals at risk for HD to provide guidance for genetic testing for Huntington’s disease (HD). DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

## Downloads

- [Financial and Legal Preparation for Prodromal/Pre-symptomatic HD](https://hdsa.org/blog/sdm_downloads/financial-and-legal-preparation-for-prodromal-pre-symptomatic-hd/)
- [HD-Community-Letter-Nov.-9-2023-FINAL](https://hdsa.org/blog/sdm_downloads/hd-community-letter-nov-9-2023-final/)
- [Wellness Journal](https://hdsa.org/blog/sdm_downloads/wellness-journal/)
- [Social Security denial process infographic](https://hdsa.org/blog/sdm_downloads/social-security-denial-process-infographic/)
- [SSDI Application Tips](https://hdsa.org/blog/sdm_downloads/ssdi-application-tips/)
- [Listing 11.17](https://hdsa.org/blog/sdm_downloads/listing-11-17/)
- [HD Compassionate Allowance](https://hdsa.org/blog/sdm_downloads/hd-compassionate-allowance/)
- [Disability Onset Date Worksheet](https://hdsa.org/blog/sdm_downloads/disability-onset-date-worksheet/)
- [Sample HD Background Information](https://hdsa.org/blog/sdm_downloads/sample-hd-background-information/)
- [Questions to Determine Symptoms and limitations](https://hdsa.org/blog/sdm_downloads/questions-to-determine-symptoms-and-limitations/)
- [HDSA Disability Appeal Online Application Guide](https://hdsa.org/blog/sdm_downloads/hdsa-disability-appeal-online-application-guide/)
- [How to Follow Up with Social Security ](https://hdsa.org/blog/sdm_downloads/how-to-follow-up-with-social-security/)
- [Following Up with Social Security Infographic](https://hdsa.org/blog/sdm_downloads/following-up-with-social-security-infographic/)
- [SSA Consultative Exam](https://hdsa.org/blog/sdm_downloads/ssa-consultative-exam/)
- [HDSA Medical Source Statement](https://hdsa.org/blog/sdm_downloads/hdsa-medical-source-statement/)
- [HDSA Sample Disability Letter](https://hdsa.org/blog/sdm_downloads/hdsa-sample-disability-letter/)
- [Disability & Legal Resources Preparation Checklist](https://hdsa.org/blog/sdm_downloads/disability-legal-resources-preparation-checklist/)
- [Late-Stage disability checklist](https://hdsa.org/blog/sdm_downloads/late-stage-disability-checklist/)
- [Social Security Process infographic](https://hdsa.org/blog/sdm_downloads/social-security-process-infographic/)
- [2022 Year In Review](https://hdsa.org/blog/sdm_downloads/2022-year-in-review/)
- [Disability Booklet](https://hdsa.org/blog/sdm_downloads/disability-booklet/)
- [HD Sample Support Letters](https://hdsa.org/blog/sdm_downloads/hd-sample-support-letters/)
- [HDSA FAMILY GUIDE SERIES: Physical and Occupational Therapy – Huntington’s Disease](https://hdsa.org/blog/sdm_downloads/hdsa-family-guide-series-physical-and-occupational-therapy-huntingtons-disease/)
- [Finding Our Way](https://hdsa.org/blog/sdm_downloads/finding-our-way/)
- [Talking With Kids About HD](https://hdsa.org/blog/sdm_downloads/talking-with-kids-about-hd/)
- [HDSA FAMILY GUIDE SERIES: Talking With Kids — Huntington’s Disease](https://hdsa.org/blog/sdm_downloads/hdsa-family-guide-series-talking-with-kids-huntingtons-disease/)
- [HDSA FAMILY GUIDE SERIES: Nutrition and Huntington’s Disease](https://hdsa.org/blog/sdm_downloads/hdsa-family-guide-series-nutrition-and-huntingtons-disease/)
- [HDSA FAMILY GUIDE SERIES: Speech-Language and Swallowing Difficulties](https://hdsa.org/blog/sdm_downloads/hdsa-family-guide-series-speech-language-and-swallowing-difficulties/)
- [Law Enforcement Key Points](https://hdsa.org/blog/sdm_downloads/law-enforcement-key-points/)
- [Law Enforcement Training Guide](https://hdsa.org/blog/sdm_downloads/law-enforcement-training-guide/)
- [Law Enforcement Crisis Template](https://hdsa.org/blog/sdm_downloads/law-enforcement-crisis-template/)
- [Law Enforcement Profile Card](https://hdsa.org/blog/sdm_downloads/law-enforcement-profile-card/)
- [I Have HD Card](https://hdsa.org/blog/sdm_downloads/i-have-hd-card/)
- [Law Enforcement Caregiver Gide](https://hdsa.org/blog/sdm_downloads/law-enforcement-caregiver-gide/)
- [Juvenile HD and the School Experience: Education and the Child Affected by Juvenile Onset HD](https://hdsa.org/blog/sdm_downloads/juvenile-hd-and-the-school-experience-education-and-the-child-affected-by-juvenile-onset-hd/)
- [HDSA FAMILY GUIDE SERIES: Juvenile Onset HD](https://hdsa.org/blog/sdm_downloads/hdsa-family-guide-series-juvenile-onset-hd/)
- [The Juvenile HD Handbook: A Guide for Families and Caregivers (2nd Edition)](https://hdsa.org/blog/sdm_downloads/the-juvenile-hd-handbook-a-guide-for-families-and-caregivers-2nd-edition/)
- [HDSA FAMILY GUIDE SERIES: Genetic Testing – Huntington’s Disease](https://hdsa.org/blog/sdm_downloads/hdsa-family-guide-series-genetic-testing-huntingtons-disease/)
- [HDSA Brochure](https://hdsa.org/blog/sdm_downloads/hdsa-brochure/)
- [Long Term Care Monograph](https://hdsa.org/blog/sdm_downloads/long-term-care-monograph/)
- [HDSA FAMILY GUIDE SERIES: Advanced Directives for Huntington’s Disease](https://hdsa.org/blog/sdm_downloads/hdsa-family-guide-series-advanced-directives-for-huntingtons-disease/)
- [Lifting the Veil of Huntington’s Disease: Recommendations to the Field from the Huntington’s Disease Peer Workgroup](https://hdsa.org/blog/sdm_downloads/lifting-the-veil-of-huntingtons-disease-recommendations-to-the-field-from-the-huntingtons-disease-peer-workgroup/)
- [Huntington’s Disease: A Family Guide](https://hdsa.org/blog/sdm_downloads/huntingtons-disease-a-family-guide/)
- [Guía Para Medico Sobre el Manejo de la Enfermedad de Huntington Tercera Edición](https://hdsa.org/blog/sdm_downloads/guia-para-medico-sobre-el-manejo-de-la-enfermedad-de-huntington-tercera-edicion/)
- [Datos Rapidos Sobre la EH](https://hdsa.org/blog/sdm_downloads/datos-rapidos-sobre-la-eh/)
- [Serie de Guías Familiares: Terapia Fisica y Ocupacional](https://hdsa.org/blog/sdm_downloads/serie-de-guias-familiares-terapia-fisica-y-ocupacional/)
- [Serie de Guías Familiares: La Nutrición y la Enfermedad de Huntington: Una Guía para Familias](https://hdsa.org/blog/sdm_downloads/serie-de-guias-familiares-la-nutricion-y-la-enfermedad-de-huntington-una-guia-para-familias/)
- [Serie de Guías Familiares: Cuidados a Largo Plazo Para la EH](https://hdsa.org/blog/sdm_downloads/serie-de-guias-familiares-cuidados-a-largo-plazo-para-la-eh/)
- [Serie de Guías Familiares: Enfermedad Juvenil de Huntington](https://hdsa.org/blog/sdm_downloads/serie-de-guias-familiares-enfermedad-juvenil-de-huntington/)
- [Serie de Guías Familiares: La Prueba Genética](https://hdsa.org/blog/sdm_downloads/serie-de-guias-familiares-la-prueba-genetica/)
- [Serie de Guías Familiares: La Enfermedad de Huntington](https://hdsa.org/blog/sdm_downloads/serie-de-guias-familiares-la-enfermedad-de-huntington/)
- [Serie de Guías Familiares: Comunicación con los Proveedores de Salud: Guía para los Cuidadores](https://hdsa.org/blog/sdm_downloads/serie-de-guias-familiares-comunicacion-con-los-proveedores-de-salud-guia-para-los-cuidadores/)
- [HDSA FAMILY GUIDE SERIES: Long-Term Care](https://hdsa.org/blog/sdm_downloads/hdsa-family-guide-series-long-term-care/)
- [A Caregiver’s Guide to Huntington’s Disease](https://hdsa.org/blog/sdm_downloads/a-caregivers-guide-to-huntingtons-disease/)
- [HDSA FAMILY GUIDE SERIES: Caregiver’s Guide to Communicating with Healthcare Providers – Huntington’s Disease](https://hdsa.org/blog/sdm_downloads/hdsa-family-guide-series-caregivers-guide-to-communicating-with-healthcare-providers-huntingtons-disease-2/)
- [2013 HD-RsrchInvstRptFINAL](https://hdsa.org/blog/sdm_downloads/2013-hd-rsrchinvstrptfinal/)
- [2021 The-Marker-2021_ONLINE-Copy](https://hdsa.org/blog/sdm_downloads/2021-the-marker-2021_online-copy/)
- [2020 The-Marker-2020_ONLINEpdf](https://hdsa.org/blog/sdm_downloads/2020-the-marker-2020_onlinepdf/)
- [2019 HDSA-The-Marker_2019](https://hdsa.org/blog/sdm_downloads/2019-hdsa-the-marker_2019/)
- [2018 HDSA-2018-Research-Report-FINAL](https://hdsa.org/blog/sdm_downloads/2018-hdsa-2018-research-report-final/)
- [2017 HDSA_RsrchInvstRpt2017-prf6](https://hdsa.org/blog/sdm_downloads/2017-hdsa_rsrchinvstrpt2017-prf6/)
- [2016 HDSA_RsrchInvstRpt2016](https://hdsa.org/blog/sdm_downloads/2016-hdsa_rsrchinvstrpt2016/)
- [2015 HDSA-RIR](https://hdsa.org/blog/sdm_downloads/2015-hdsa-rir/)
- [2014 HD-RsrchInvstRpt2014final](https://hdsa.org/blog/sdm_downloads/2014-hd-rsrchinvstrpt2014final/)
- [The Marker 2022](https://hdsa.org/blog/sdm_downloads/the-marker-2022/)
- [A Physician's Guide to the Management of Huntington's Disease (3rd edition)](https://hdsa.org/blog/sdm_downloads/a-physicians-guide-to-the-management-of-huntingtons-disease-3rd-edition/)
- [A Caregiver Guide for HD Families](https://hdsa.org/blog/sdm_downloads/a-caregiver-guide-for-hd-families/)
- [Caregiver Guide for Mid to Late Stage Huntington’s Disease: For Long-Term Care Facilities and In-Home Care Agencies](https://hdsa.org/blog/sdm_downloads/caregiver-guide-for-mid-to-late-stage-huntingtons-disease-for-long-term-care-facilities-and-in-home-care-agencies/)
- [HDSA FAMILY GUIDE SERIES: Caregiver’s Guide to Communicating with Healthcare Providers – Huntington’s Disease](https://hdsa.org/blog/sdm_downloads/hdsa-family-guide-series-caregivers-guide-to-communicating-with-healthcare-providers-huntingtons-disease/)
- [Understanding Behavior in Huntington’s Disease: A Guide for Professionals](https://hdsa.org/blog/sdm_downloads/understanding-behavior-in-huntingtons-disease-a-guide-for-professionals/)

## Disability Tips

- [7 Surprising Facts about ABLE Accounts](https://hdsa.org/disability-tips/7-surprising-facts-about-able-accounts/) - 7 Surprising Facts about ABLE Accounts Achieving a Better Life Experience (ABLE) accounts empower people with qualifying disabilities to build savings while staying eligible for benefits. Users can set aside money to be ignored by asset limits for programs like Supplemental Security Income (SSI) and Medicaid. Recent federal legislation raised contribution amounts and increased age eligibility for these accounts. Previously limited to age 26, ABLE accounts are now available to anyone whose disability started before the age of 46. This opportunity can offset some of the financial impact of living with a disability. Learn more with
- [Social Security Updates](https://hdsa.org/disability-tips/social-security-updates/) - Social Security Updates Social Security announced two very important updates that impact their disability programs: 1. An overhaul of Social Security Disability (SSDI) and Supplemental Security Income (SSI) overpayments; 2. Food will no longer be included as in-kind support for SSI recipients. These updates will make it easier for SSDI and SSI recipients to keep
- [2025 Disability Recap](https://hdsa.org/disability-tips/2025-disability-recap/) - Happy Holidays! 2025 HDSA Disability Recap As the winter holidays approach, there’s much to be grateful for in HDSA and the Disability Program. Our support has reached all types of people impacted by HD, including families, social workers, advocates, lawyers, and medical professionals. 2025 Highlights Close to 1,100 people worked with the disability program, getting insight for complex cases
- [Health Insurance Benefits and the Marketplace ](https://hdsa.org/disability-tips/health-insurance-benefits-and-the-marketplace/) - Health Insurance Benefits and the Marketplace This week’s disability blog has a special guest contributor, HDSA’s Madeline Burbank, Disability Intern. During Open Enrollment, everyone has the opportunity to choose the health insurance plan that fits them best. This article will answer commonly asked questions about health insurance benefits and the marketplace, especially for those who
- [Understanding the 2026 Cost of Living Adjustment](https://hdsa.org/disability-tips/understanding-the-2026-cost-of-living-adjustment/) - Understanding the 2026 Cost of Living Adjustment This week’s disability blog has a special guest contributor, HDSA’s Madeline Burbank, Disability Intern. The Social Security Administration adjusts benefit payments every year to keep up with inflation, an update known as the cost-of-living adjustment (COLA). In 2026, everyone receiving Social Security retirement, Social Security Disability Insurance (SSDI),
- [Starting the SSA Disability Process: Medical Care](https://hdsa.org/disability-tips/starting-the-ssa-disability-process-getting-medical-care/) - Starting the SSA Disability Process: Medical Care The absolute, very first step in the Social Security Disability process is getting a formal medical diagnosis. This seems obvious, but it isn't. Many people struggle daily with symptoms and limitations without ever getting proper medical care. Unfortunately this lack of medical care, even if a person is
- [Social Security Disability Process](https://hdsa.org/disability-tips/social-security-disability-process/) - The Social Security Disability Process Introduction to the Social Security Process Most Americans do not know how difficult it is to apply for Social Security Disability. The truth? It is often a daunting and overwhelming process. That’s right, I said process. It is incorrect to think applying for Social Security Disability (SSDI) or Supplemental Security Income
- [Social Security Disability Attorneys](https://hdsa.org/disability-tips/social-security-disability-attorneys/) - Social Security Disability Attorneys One of the most harmful myths in the Social Security disability application process is that an attorney is too expensive. This means families miss out on help that they need. Many families fail to hire an attorney during their Social Security disability journey because they think they cannot afford an attorney.
- [HDSA Convention](https://hdsa.org/disability-tips/hdsa-convention/) - HDSA Convention The time has come, HDSA’s 40th Annual Convention is next week! It is HDSA’s biggest event of the year and it is packed with camaraderie, research, lots of amazing information, and fun. It’s always so special to see the community come together for this event. You can find more information here. In my
- [HD Awareness is Advocacy](https://hdsa.org/disability-tips/hd-awareness-is-advocacy/) - HD Awareness is Advocacy Since May is Huntington's Disease Awareness month, it is really important to discuss advocacy. HD awareness is a huge part of HD advocacy. We cannot fight for the rights of the HD community if people do what know anything about HD. And it is important to stress that HD awareness isn't
- [Social Security Update: SNAP Benefits](https://hdsa.org/disability-tips/social-security-update-snap-benefits/) - Social Security Update: SNAP Benefits SSI and Food Assistance Social Security stopped reducing benefits because of food assistance. This includes food received from friends, family, and community networks, like food banks and other community food programs. This change means HD individuals receiving Supplemental Security Income (SSI) payments, any disabled individual receiving SSI payments, will keep
- [Social Security Update](https://hdsa.org/disability-tips/social-security-update/) - Change to Appointed Representative Rule What is an Appointed Representative? Anyone applying for Social Security disability benefits is entitled to an appointed representative. These representatives have the legal authority to speak with Social Security, get claim updates, and help with forms and other paperwork. Representatives can be a friend, family member, a paid Disability Representative,
- [Understanding Medicaid](https://hdsa.org/disability-tips/understanding-medicaid/) - Understanding Medicaid What is Medicaid? Medicaid is health insurance that provides coverage for Americans with limited income and resources. This includes low-income adults, children, pregnant women, elderly adults, and people with disabilities. How does Medicaid work? The federal and state governments share the costs to provide low-cost health coverage to eligible individuals. Medicaid is
- [Defining Disability: Employment](https://hdsa.org/disability-tips/defining-disability-employment/) - Defining Disability: Employment More than 1 billion people around the world live with disabling conditions. As a result, chronic health conditions and disabilities are becoming more common in the workplace. Americans with Disabilities Act The Americans with Disabilities Act (ADA) helps protect you from discrimination in the workplace. It is illegal for private employers, state
- [Defining Disability: Education](https://hdsa.org/disability-tips/defining-disability-education/) - Defining Disability: Education Disability in education is protected by the Individuals with Disabilities Education Act (IDEA), Section 504 of the Rehabilitation Act of 1973, and the Americans with Disabilities Act (ADA). The definition of “disability” in education is constant, but access to accommodation depends on age, location, and available programs. "Disability" in Education The
- [Defining "Disability": STD and LTD](https://hdsa.org/disability-tips/defining-disability-std-and-ltd/) - Defining "Disability": STD and LTD One thing that many people fail to realize is that private and employer short-term (STD) and long-term (LTD) disability benefits are separate from Social Security. The policies have their own definition of “disability.” Often, the definition of “disability” varies slightly from insurance company to insurance company. Everyone should have STD
- [Defining "Disability": Social Security](https://hdsa.org/disability-tips/what-is-disability-social-security-disability-insurance/) - Defining "Disability": Social Security Most individuals impacted by Huntington’s Disease apply for Social Security benefits. It is imperative that everyone understands how Social Security defines “disability” before submitting an application. Social Security has a two-part definition: a person must have (1) a medically determinable impairment that (2) leaves them unable to engage in any
- [What is "Disability"?](https://hdsa.org/disability-tips/what-is-disability/) - What is "Disability"? One of the BIGGEST misconceptions about “disability” is that the word only means one thing. When families speak with me about “disability” they are usually referring to the financial Social Security disability insurance (SSDI) benefit. It is so much more than that. What is the definition of disability? Disability really refers to
- [HDSA Disability Program](https://hdsa.org/disability-tips/hdsa-disability-program-2/) - HDSA Disability Program As 2024 comes to a close, we want to thank everyone who has reached out and utilized HDSA’s disability program. This is truly a unique program that has been designed to help anyone impacted by HD, including families, social workers, medical professionals, lawyers, and advocates. HDSA Disability program offers assistance in multiple
- [Understanding the 2025 Cost of Living Adjustment](https://hdsa.org/disability-tips/understanding-the-2025-cost-of-living-adjustment/) - Understanding the 2025 Cost of Living Adjustment Every year, Social Security adjusts benefit payments to reflect inflation. In 2025, everyone receiving Social Security retirement, Social Security disability, and Supplemental Security income will see a 2.5% increase in their benefits. This means an increase of about $50 per month: Average monthly SSDI (2024): $1,580 Maximum monthly SSI (2024): $967
- [Disability Red Flag: Committing a Crime](https://hdsa.org/disability-tips/disability-red-flag-committing-a-crime/) - Disability Red Flag: Committing a Crime The last disability red flag that will be discussed in this series is committing a crime. Social Security breaks crime into two categories: 1. Committing fraud in the disability process 2. Conviction of a crime and imprisonment Committing Fraud Social Security takes fraud very seriously and has a zero
- [Disability Red Flag: Failure to Cooperate](https://hdsa.org/disability-tips/disability-red-flag-failure-to-cooperate/) - Disability Red Flag: Failure to Cooperate There are many people who are denied Social Security benefits simply because they fail to cooperate with Social Security. This is a very easy red flag to avoid and highlights why it is so important to follow-up on your disability claim. What does it mean to “fail to cooperate”?
- [Disability Red Flag: Earning too Much Income](https://hdsa.org/disability-tips/disability-red-flag-earning-too-much-income/) - Disability Red Flag: Earning too Much Income When people apply for Social Security, they often overlook the technical criteria for benefits, which include work earnings limits, work credit minimums, and cooperating with Social Security. The technical criteria are very strict and result in half of all Social Security denials. Work Earnings – Substantial Gainful
- [Disability Red Flag: Drug and Alcohol Use](https://hdsa.org/disability-tips/disability-red-flag-drug-and-alcohol-use/) - Drug and Alcohol Use Social Security is very strict about the impact of drug and alcohol abuse on a disability claim. Your disability application will be denied if your disability is a direct result of drug or alcohol abuse. Drugs, Alcohol, and Huntington’s Disease While drug and alcohol abuse cannot cause Huntington’s disease (HD), drugs
- [Disability Red Flag: Failure to Get Medical Care](https://hdsa.org/disability-tips/social-security-red-flag-failure-to-get-medical-care/) - Disability Red Flag: Failure to Get Medical Care Disability reality check: You will not be found disabled without medically documented proof you have Huntington’s Disease, and how it impacts your life and ability to work. You cannot get medical evidence without medical care. Medical Evidence Rules One of the biggest misconceptions about the disability application
- [Disability Red Flag: Clinical Trial Records](https://hdsa.org/disability-tips/disability-claims-clinical-trial-records/) - Disability Red Flag: Clinical Trial Records When filing a disability claim, the most important evidence you can submit is your medical records. You cannot be found disabled if you do not submit proof of your medical conditions and how they impact you. This is true for all disability applications: Social Security, private/employer disability, public retirement
- [Understanding How to Make a Will](https://hdsa.org/disability-tips/understanding-how-to-make-a-will/) - Understanding How to Make a Will August is National Make-A-Will Month. Wills and estate planning are so important to the Huntington’s disease community, and Americans in general. To make sure your wishes are honored, and your family is protected, this is your reminder that it is time to write your will. A will is
- [Social Security Red Flags](https://hdsa.org/disability-tips/social-security-red-flags/) - Social Security Red Flags A big part of completing a Social Security disability application is knowing what to include with the application. Equally as important is knowing what to avoid. Specifically, you want to avoid disability red flags that could jeopardize your disability claim. What Are Disability Red Flags? Disability red flags indicate there is
- [Social Security Update: Reducing Work History](https://hdsa.org/disability-tips/social-security-update-reducing-work-history/) - Social Security Update: Reducing Work History Social Security announced that as of June 22, 2024 anyone applying for Social Security Disability or Supplemental Security Income only needs to provide work history for the past 5 years. This means Social Security reduced the past work period from 15 years to 5 years. You can read the
- [Disabled Not Unable: Dealing with Discrimination](https://hdsa.org/disability-tips/disabled-not-unable-dealing-with-discrimination/) - Advocating for Yourself Resources How to Advocate for Yourself Webinar Advocating for Yourself Guide Law Enforcement Training and Community Resources Law Enforcement Training Guide and Fact Sheet: HDSA created this guide to help law enforcement and first responders better understand HD and interact with HD-impacted individuals. The booklet contains an introduction to HD, and information
- [Maternity Leave FAQs](https://hdsa.org/disability-tips/maternity-leave-faqs/) - Maternity Leave FAQs Allison Bartlett, Esq., the Senior Manager of Disability programs, will be on maternity leave from November 2023 – Mid-February 2024. This is the last blog post of 2023. What does this mean for the disability program? The disability program is not going anywhere! The disability chat webinar series will take a short
- [Understanding the 2024 Cost of Living Adjustment](https://hdsa.org/disability-tips/understanding-the-2024-cost-of-living-adjustment/) - Understanding the 2024 Cost of Living Adjustment Every year, Social Security adjusts benefit payments to reflect inflation. In 2024, everyone receiving Social Security retirement, Social Security disability, and Supplemental Security income will see a 3.2% increase in their benefits. This means an average increase of more than $50 per month: Average monthly SSDI (2024): $1,537
- [Disabled, Not Unable – Football ](https://hdsa.org/disability-tips/disabled-not-unable-football/) - Disabled, Not Unable – Football One of my favorite things about fall is the return of football (I type as I drink from my Bengals Super Bowl LVI cup). There is something special, and anxiety-inducing, about watching the ups and downs of your favorite team every week. It is one thing to watch on TV,
- [Disabled Not Unable: Fall Fun](https://hdsa.org/disability-tips/disabled-not-unable-fall-fun/) - Disabled Not Unable: Fall Fun Having a disabling condition like Huntington’s disease means there are good days and bad days. It can be hard to predict what kind of day it will be when you wake up in the morning. And some days it is easy to get caught up in the “I can’t” instead
- [Disabled Not Unable: Lions, Tigers, and Bears!](https://hdsa.org/disability-tips/disabled-not-unable-lions-tigers-and-bears/) - Disabled Not Unable: Lions, Tigers, and Bears! Some of the greatest adventures in life are exploring other cultures, food, history, and wildlife. These activities can be harder to do with a disability and may seem daunting at times. But all these things can be done without ever having to leave the US or even your
- [Disabled Not Unable: Getting Outside](https://hdsa.org/disability-tips/disabled-not-unable-getting-outside/) - Disabled Not Unable: Getting Outside So much of this disability blog is about how to prepare for the future through disability planning, financial planning, and legal planning. These are all very serious topics that can be mentally and emotionally draining. To celebrate my personal favorite season, the fall, I want to take a few weeks
- [Understanding How to Leave a Legacy](https://hdsa.org/disability-tips/understanding-how-to-leave-a-legacy/) - Understanding How to Leave a Legacy This week's disability blog has a special guest contributor, HDSA’s Maggie Haley, Assistant Director of Individual Giving. She discovered that it is Make-A-Will month and has advice on charitable giving: As we mentioned in last week's blog, Understanding How to Make a Will, there are so many reasons why
- [Understanding Social Security Benefits and Living Outside the United States](https://hdsa.org/disability-tips/understanding-social-security-benefits-and-living-outside-the-united-states/) - Understanding Social Security Benefits and Living Outside the United States While many Huntington’s disease families remain in the United States (US), that is not true for everyone. If you want to relocate outside of the US, how will that impact your Social Security? Your ability to receive Social Security and live outside the US depends
- [Understanding SSDI Medicare Enrollment](https://hdsa.org/disability-tips/understanding-ssdi-medicare-enrollment/) - Understanding SSDI Medicare Enrollment Over the past few weeks, the blog has touched on a number of benefits and other considerations when getting approved for Social Security disability insurance (SSDI). A significant benefit that comes with SSDI is Medicare. Everyone approved for SSDI is automatically enrolled in Medicare, but what does that really mean? Today
- [Understanding Social Security Disability Case Review](https://hdsa.org/disability-tips/understanding-social-security-disability-case-review/) - Understanding Social Security Disability Case Review Every approved Social Security disability case is reviewed. This process is called a Continuing Disability Review. Most individuals with HD have a review every 3 years or every 7 years. Your disability award letter tells you when your case will be reviewed so make sure to read the full
- [Understanding Social Security Disability and Child Support](https://hdsa.org/disability-tips/understanding-social-security-disability-and-child-support/) - Understanding Social Security Disability and Child Support When a person becomes disabled and can no longer work, many changes take place in their life. A big stressor is always financial obligations, and, for parents, this can include child support. Unfortunately, many parents do not know they can change their child support obligation due to reduced
- [Understanding Social Security Disability and Taxes](https://hdsa.org/disability-tips/understanding-social-security-disability-and-taxes/) - Understanding Social Security Disability and Taxes The old saying goes, “nothing in this world is certain except death and taxes.” This statement holds true even for Social Security disability. While no one wants to pay taxes, it is important to understand your tax liability. No one wants to get in trouble with the IRS. Specifically,
- [Understanding the Role and Responsibilities of a Representative Payee](https://hdsa.org/disability-tips/understanding-the-role-and-responsibilities-of-a-representative-payee/) - Understanding the Role and Responsibilities of a Representative Payee Many Huntington's disease (HD) impacted individuals are required to get a Representative payee when they are approved for Social Security disability, this includes SSDI and SSI. This is common with HD disability approvals because of the cognitive decline associated with the disease. Representative payees are appointed
- [What to Expect After an SSDI/SSI Approval](https://hdsa.org/disability-tips/what-to-expect-after-an-ssdi-ssi-approval/) - What to Expect After an SSDI/SSI Approval It is a day for celebration when you get the letter in the mail that your Social Security disability claim has been approved. The approval is a very exciting step in the Social Security disability process, but it is likely not the last step in the process. There
- [Understanding Auxiliary Benefits](https://hdsa.org/disability-tips/understanding-auxiliary-benefits/) - Understanding Auxiliary Benefits If you have been approved for Social Security Disability Insurance (SSDI) then your immediate family members may be eligible for auxiliary benefits from Social Security. Auxiliary benefits, also known as Family Benefits, are available for children and spouses. These benefits are in ADDITION TO your monthly SSDI benefits, which increases your family’s
- [Working and Receiving Social Security Disability](https://hdsa.org/disability-tips/working-and-receiving-social-security-disability/) - Working and Receiving Social Security Disability At no point does Social Security require a person to completely stop working to be eligible for disability benefits. The rule to apply for benefits is: you must make less than $1,470 gross per month in 2023 because of a disabling condition. The monthly income limit changes once you
- [Understanding Social Security Work Credits](https://hdsa.org/disability-tips/understanding-social-security-work-credits/) - Understanding Social Security Work Credits To qualify for Social Security retirement (SSA retirement) or Social Security disability (SSDI), you must work jobs that pay into Social Security. There are many jobs that pay into Social Security, including military service. It is easy to confirm if you pay into Social Security by checking your paystubs or
- [Understanding Long-term Care Planning and HD](https://hdsa.org/disability-tips/long-term-care-planning-and-hd/) - Understanding Long-term Care Planning and HD Long-term care planning is the culmination of all the Disability Umbrella categories. By the time a loved one needs long-term care, they should already have everything in place: Disability benefits; Medicare/Medicaid; Financial plan to pay for the care; Appropriate legal documents for decision making and to ensure their wishes
- [Understanding Financial Planning and HD](https://hdsa.org/disability-tips/understanding-financial-planning/) - Understanding Financial Planning and HD Financial planning is an equally important part of the Disability Umbrella because there are many costs associated with Huntington’s disease. These costs include medical care, medication, disability and loss of work income, legal planning, home modifications, and nursing care. Many of these costs can be a large financial burden for
- [Social Security Disability Survey](https://hdsa.org/disability-tips/social-security-disability-survey/) - Social Security Disability Survey Too many people living with HD are denied Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). And too many HD Social Security applications take months or years to get a decision. HDSA is working to address this with the Social Security Administration. We need your help! Please fill out
- [Understanding Legal Planning and HD](https://hdsa.org/disability-tips/understanding-legal-planning/) - Understanding Legal Planning and HD Legal planning is a very important part of the disability umbrella that often gets overlooked. It is necessary to make sure government and financial resources are protected and to help ensure the wishes of the HD individual are met. Legal planning can be broken down into three main categories: 1. Estate
- [Understanding “Other” Insurance and HD](https://hdsa.org/disability-tips/understanding-other-insurance-and-hd/) - Understanding “Other” Insurance and HD Over the past two weeks the Disability Tips blog has covered disability insurance and health insurance. What remains is all the “other” types of insurances: life, accident, hospital, critical care, and long-term care. Choosing the right insurance can be overwhelming because there are so many different types. Each type of
- [Understanding Health Insurance Benefits](https://hdsa.org/disability-tips/understanding-health-insurance-benefits/) - Understanding Health Insurance Benefits Health insurance is a fact of life. You will encounter different types of insurance on your disability journey: private insurance, Medicaid, and Medicare. Health insurance is necessary when you have a chronic health condition, like Huntington’s disease (HD), or are at risk for HD. This is especially true if you ever
- [Disability Insurance Benefits](https://hdsa.org/disability-tips/disability-insurance-benefits/) - Disability Insurance Benefits When starting down the long road of disability planning for HD, one of the best places to start is with Disability Insurance benefits. Disability insurance benefits provide income if a person is no longer able to work because of a disabling condition or accident. This is a great place to start because all
- [The Disability Umbrella](https://hdsa.org/disability-tips/the-disability-umbrella/) - The HDSA Disability Umbrella One of the biggest misconceptions about disability in the context of Huntington’s disease is that it is just one thing: a benefit. Disability benefits are very important benefits for the HD community, but they are just one section of the larger disability umbrella. All of the sections of Disability Umbrella are
- [5 Things to Know When Helping with a Social Security Disability Application](https://hdsa.org/disability-tips/5-things-to-know-when-helping-with-a-social-security-disability-application/) - 5 Things to Know When Helping with a Social Security Disability Application Applying for Social Security disability is a difficult process and it is always good to get help from a trusted friend or family member, especially with a condition like Huntington's disease. Getting help makes it easier to ensure that all of the right paperwork
- [How to Contact Social Security](https://hdsa.org/disability-tips/how-to-contact-social-security/) - How to Contact Social Security There are many ways to contact Social Security, but it is important to understand the best way to contact Social Security for your specific question. If you have general questions, it is best to start with the Social Security website or Social Security’s most frequently asked questions. If you need
- [Should I apply for Supplemental Security Income (SSI)?](https://hdsa.org/disability-tips/should-i-apply-for-supplemental-security-income-ssi/) - Should I apply for Supplemental Security Income (SSI)? A question that often comes up when someone is applying for Social Security Disability Insurance (SSDI) is how do I answer this question: Do you intend to apply for Supplemental Security Income? This question is asked on every SSDI application, but it is very important to know
- [Expediting A Social Security Disability Claim ](https://hdsa.org/disability-tips/expediting-a-social-security-disability-claim/) - Expediting A Social Security Disability Claim The national average for a Social Security disability application decision is now 7-9 months, and most Americans cannot go that long without income. While a claim still has to meet all of the necessary technical and medical criteria to be approved, there are four ways to help expedite/reduce a
- [Advocating for Yourself](https://hdsa.org/disability-tips/advocating-for-yourself/) - ADVOCATING FOR YOURSELF When you or a loved one has a rare condition, like Huntington’s disease, it is very import to know how to advocate for yourself/your loved one because you may need to advocate every day. With Huntington’s disease, it is very common to have to advocate for rights and needs in all of
- [Happy Holidays!](https://hdsa.org/disability-tips/happy-holidays/) - HAPPY HOLIDAYS! While Social Security is only officially closed on Christmas Day – observed December 26, and New Year’s Day – observed January 2, many Social Security employees take time off at the end of the year. If you have a disability claim pending and you have questions about your case or want to check
- [HDSA Disability Program ](https://hdsa.org/disability-tips/hdsa-disability-program/) - HDSA Disability Program As 2022 comes to a close, we want to remind everyone about the amazing, FREE disability resources that HDSA offers: Printed Resources and Guides HDSA Disability Chat Webinars HDSA Disability Tips Blog Ask Allison!
- [What to Expect When Applying for Marketplace Health Insurance ](https://hdsa.org/disability-tips/what-to-expect-when-applying-for-marketplace-health-insurance/) - What to Expect When Applying for Marketplace Health Insurance December is not only the time of year that reflects the holiday season, it is also the time of year that many people are enrolling in health insurance coverage for the next year. The last day to enroll in Marketplace Health Insurance for plans starting January
- [What to Expect at a Social Security Disability (Administrative law) Hearing](https://hdsa.org/disability-tips/what-to-expect-at-a-social-security-disability-administrative-law-hearing/) - What to Expect at a Social Security Disability (Administrative law) Hearing For most, the administrative law hearing, and appearing before a judge, is the most intimidating part of the Social Security disability appeal process. While appearing before a judge can be intimidating, this stage of the process is your best chance for getting an approval.
- [Understanding the Social Security Appeal Process ](https://hdsa.org/disability-tips/understanding-the-social-security-appeal-process/) - Understanding the Social Security Appeal Process If your Social Security disability claim has been denied it is very important to know that you can, and should, appeal the decision. It is also important to know that a Social Security denial is not a reflection of the severity of your condition, but is a better reflection
- [Understanding Your Social Security Denial ](https://hdsa.org/disability-tips/understanding-your-social-security-denial/) - Understanding Your Social Security Denial If you have submitted a Social Security disability claim, it is important to know that more than 65% of disability claims are denied at the initial application level. Social Security disability is a complex and discouraging process so a denial should not be treated as an accurate reflection of a
- [Understanding Social Security Medical Appointments](https://hdsa.org/disability-tips/understanding-social-security-medical-appointments/) - Understanding Social Security Medical Appointments During the Social Security disability process, it is very common for individuals with Huntington’s disease to be scheduled a Social Security medical appointment. Many assume that this is a bad sign for their disability case, but that is not true. When Social Security requests a medical appointment, it means that
- [Understanding the 2023 Cost of Living Adjustment](https://hdsa.org/disability-tips/understanding-the-2023-cost-of-living-adjustment/) - Understanding the 2023 Cost of Living Adjustment Every year, Social Security adjusts benefit payments to reflect inflation. In 2023, everyone receiving Social Security retirement, Social Security disability, and Supplemental Security income will see a 8.7% increase in their benefits. This means an increase of more than $140 per month: Average monthly SSDI (2023): $1,483 Maximum
- [Knowing Your Disability/Retirement Benefit Program](https://hdsa.org/disability-tips/knowing-your-disability-retirement-benefit-program/) - Knowing Your Disability/Retirement Benefit Program Whether you have a disabling condition, like HD, or you just want to make sure you are protected if you have to stop working, it is very important to understand your disability/retirement benefit program and options so you do not miss out on benefits when you need them. There are
- [Knowing When to Stop Working](https://hdsa.org/disability-tips/knowing-when-to-stop-working/) - Knowing When to Stop Working Knowing when to stop working is a very difficult part of the disability process because it is a different answer for every person – there is no perfect equation for when to stop working. The timing for when to stop working depends on your HD symptoms, your job/job tasks, and
- [Knowing Your Employment Rights ](https://hdsa.org/disability-tips/knowing-your-employment-rights/) - Knowing Your Employment Rights In addition to understanding your genetic rights (covered last week), it is very important to understand your employment rights when you have a disabling condition. The Americans with Disabilities Act (ADA) states that it is illegal for an employer to discriminate against a qualified individual with a disability. This means that
- [Knowing Your Genetic Rights](https://hdsa.org/disability-tips/knowing-your-genetic-rights/) - Knowing Your Genetic Rights Having a genetic condition, like Huntington’s disease, means it is very important to understand your genetic rights. Currently, the federal law providing protections for genetic information is GINA (the Genetic Information Nondiscrimination Act of 2008), and many states have laws protecting the disclosure of genetic information (you can find information about
- [Hiring an Attorney](https://hdsa.org/disability-tips/hiring-an-attorney/) - Last week, we discussed what to look for when hiring a Social Security disability attorney, but that is not the only attorney you may encounter during your disability journey. It is very important to understand the different kinds of attorneys you may need, costs of an attorney, and what to disclose to your attorney.
- [Hiring a Social Security Disability Attorney](https://hdsa.org/disability-tips/hiring-a-social-security-disability-attorney/) - Hiring a Social Security Disability Attorney Many families fail to hire an attorney during their Social Security disability journey because they think they cannot afford an attorney. This is one of the most harmful myths in the Social Security disability application process – it means families miss out on help that they need. Social Security Disability
- [Facts About Medicare](https://hdsa.org/disability-tips/facts-about-medicare/) - FACTS ABOUT MEDICARE Another area where there is a lot of misunderstanding and misinformation is Medicare. Medicare currently covers 64 million Americans and almost every American will utilize Medicare at some point in their life so it is very important to understand how this health insurance benefit works: 1. Medicare starts at 65, unless you have
- [5 Social Security Disability Myths After Approval](https://hdsa.org/disability-tips/5-social-security-disability-myths-after-approval/) - Once you are approved for Social Security disability benefits, you will still have important responsibilities and obligations to Social Security. It is very important to understand the approval process so you get the most out of your benefits, but just like the application process, there are many myths and misconceptions that negatively impact families even
- [5 Social Security Disability Application Myths](https://hdsa.org/disability-tips/5-social-security-disability-application-myths/) - The Social Security disability application process is difficult and complex, with almost 70% of applicants getting denied at the initial application level. One reason the level of denials is so high is there are myths and misconceptions about the Social Security disability application process that negatively impact families. These myths and misconceptions impact what information
- [Social Security Benefits: 5 Important Facts](https://hdsa.org/disability-tips/social-security-benefits-5-important-facts/) - The disability benefit program that provides benefits to the most Americans is also the most misunderstood: Social Security. There are a number of myths and misconceptions about Social Security that result in many HD families, and Americans in general, missing out on important benefits. Here are 5 important facts to better understand Social Security benefits:
- [Public Benefits](https://hdsa.org/disability-tips/public-benefits/) - There are two main categories of public benefits: State Benefits and Federal Benefits. These benefits are designed to provide coverage to the largest number of people and provide protections for eligibility gaps left by private insurance. Public benefits only include health coverage and disability coverage. State benefits are managed by each individual state, meaning
- [Private and Employer Provided Benefits](https://hdsa.org/disability-tips/private-and-employer-provided-benefits/) - Private and Employer-provided benefits are very similar in terms of the benefits they provide and how they are managed. They cover a wide range of insurance areas, like health insurance, life insurance, short-term disability, long-term disability, and other specialty insurance. Both are managed by private insurance companies, like Anthem Health, Lincoln Financial, Mass Mutual, New
- [Different Types of Disability Benefits](https://hdsa.org/disability-tips/different-types-of-disability-benefits/) - When people talk about “disability” they are generally referring to Social Security Disability insurance (SSDI), which is only one type of disability benefit program. Not everyone is eligible for SSDI so we need to stop talking about disability like there is only one type of disability. There are actually many kinds of disability benefit programs,
- [Welcome to the Disability Tip Blog!](https://hdsa.org/disability-tips/tip-1/) - Welcome to the new disability blog! You can find all of the past disability tips here, and please continue to join us every week for new tips and information about all topics under the disability umbrella. Topic: Social Security Disability Tip: If you work while receiving Social Security disability, and you make too much money,

## HD Human Biology Projects

- [Eva Woods, BSc (Hons)](https://hdsa.org/hd-research/hd-human-biology-project/eva-woods-bsc-hons/)
- [Kimberly Kegel-Gleason, PhD](https://hdsa.org/hd-research/hd-human-biology-project/kimberly-kegel-gleason-phd/)
- [Shota Shibata, MD, PhD](https://hdsa.org/hd-research/hd-human-biology-project/shota-shibata-md-phd/)
- [Nicholas Caron, PhD](https://hdsa.org/hd-research/hd-human-biology-project/nicolas-caron-phd/)
- [Zachariah McLean, PhD](https://hdsa.org/hd-research/hd-human-biology-project/zachariah-mclean-phd/)
- [Dipika Gupta, PhD](https://hdsa.org/hd-research/hd-human-biology-project/dipika-gupta-phd/)
- [Roy Maimon, PhD](https://hdsa.org/hd-research/hd-human-biology-project/roy-maimon-phd/)
- [Xiangrui Zeng, PhD](https://hdsa.org/hd-research/hd-human-biology-project/xiangrui-zeng-phd/)
- [Jessica Levesley, PhD](https://hdsa.org/hd-research/hd-human-biology-project/jessica-levesley-phd/)
- [Natalia Pessoa Rocha, PhD, PharmD](https://hdsa.org/hd-research/hd-human-biology-project/natalia-pessoa-rocha-phd-pharmd/)
- [Nikhil Ratna, PhD](https://hdsa.org/hd-research/hd-human-biology-project/nikhil-ratna-phd/)
- [Thiago Macedo e Cordeiro, MD](https://hdsa.org/hd-research/hd-human-biology-project/thiago-macedo-e-cordeiro-md/)
- [Tamara Maiuri, PhD](https://hdsa.org/hd-research/hd-human-biology-project/tamara-maiuri-phd/)
- [Ana Gámez-Valero, PhD](https://hdsa.org/hd-research/hd-human-biology-project/ana-gamez-valero/)
- [Joan O'Keefe, PhD, PT](https://hdsa.org/hd-research/hd-human-biology-project/joan-okeefe-phd-pt/)
- [Charlene Smith-Geater, PhD](https://hdsa.org/hd-research/hd-human-biology-project/charlene-smith-geater-phd/)
- [Alby Richard, MD, PhD](https://hdsa.org/hd-research/hd-human-biology-project/alby-richard-md-phd/)
- [Mitsuko Nakajima, MBChB, MPhil](https://hdsa.org/hd-research/hd-human-biology-project/mitsuko-nakajima-mbchb-mphil/) - - Clinical Research Fellow, University College London - Mapping Premanifest Huntington's Disease at Ultra-high Resolution
- [Maria Rosario Fernandez-Fernandez, PhD](https://hdsa.org/hd-research/hd-human-biology-project/maria-rosario-fernandez-fernandez-phd/)
- [Kilian Hett, PhD](https://hdsa.org/hd-research/hd-human-biology-project/kilian-hett-phd/)
- [Ines Bras, PhD](https://hdsa.org/hd-research/hd-human-biology-project/ines-bras-phd/)
- [Lea Danics, PhD](https://hdsa.org/hd-research/hd-human-biology-project/lea-danics-phd/)
- [Paul Dennis, MFA](https://hdsa.org/hd-research/hd-human-biology-project/paul-dennis-mfa/)
- [Bjoern von Einem](https://hdsa.org/hd-research/hd-human-biology-project/bjoern-von-einem/)
- [Simon Laganiere](https://hdsa.org/hd-research/hd-human-biology-project/simon-laganiere/)
- [Yifat Glikmann-Johnston](https://hdsa.org/hd-research/hd-human-biology-project/yifat-glikmann-johnston/)
- [Melanie Alpaugh](https://hdsa.org/hd-research/hd-human-biology-project/melanie-alpaugh/)
- [Saul Martinez-Horta, MsC](https://hdsa.org/hd-research/hd-human-biology-project/saul-martinez-horta-msc/)
- [Ricardo Mouro-Pinto, PhD](https://hdsa.org/hd-research/hd-human-biology-project/ricardo-mouro-pinto-phd/)
- [Vilija Lomeikaite, PhD candidate](https://hdsa.org/hd-research/hd-human-biology-project/vilija-lomeikaite-phd-candidate/)
- [Osama Al Dalahmah, MD, PhD](https://hdsa.org/hd-research/hd-human-biology-project/osama-al-dalahmah-md-phd/)
- [Danielle Larson, MD](https://hdsa.org/hd-research/hd-human-biology-project/danielle-larson-md/)
- [Edith Pfister, PhD](https://hdsa.org/hd-research/hd-human-biology-project/18136/)
- [Richard Hickman, MBChB](https://hdsa.org/hd-research/hd-human-biology-project/richard-hickman-mbchb/)
- [Isabelle St. Amour, PhD](https://hdsa.org/hd-research/hd-human-biology-project/isabelle-st-amour-phd/)
- [Michael Placzek, PhD](https://hdsa.org/hd-research/hd-human-biology-project/michael-placzek-phd/)

## Spotlight On HD Researchers

- [Dr. Xiangrui “Taylor” Zeng](https://hdsa.org/hd-research/spotlight-on-hd-researchers/dr-xiangrui-taylor-zeng/) - Seeing Beneath the Surface: How Artificial Intelligence Could Reveal Hidden Clues in the HD Brain 2023 HD Human Biology Project Fellow, Dr. Xiangrui “Taylor” Zeng, Massachusetts General Hospital / Harvard Medical School Written by: Dr. Tam Maiuri Edited by: Dr. Kaitlyn Deschamps Most brain scans using MRI look like a blur of grey and white, making it
- [Dr. Natalia Pessoa Rocha](https://hdsa.org/hd-research/spotlight-on-hd-researchers/hdsa-researcher-spotlight-dr-natalia-pessoa-rocha/) - Follow Your Nose: A New Way of Tracking Early HD Changes 2023 HD Human Biology Project Fellow, Dr. Natalia Pessoa Rocha, The University of Texas Health Science Center at Houston Written by: Dr. Tam Maiuri Edited by: Dr. Kaitlyn Deschamps and Dr. Christina Peng It may feel more like a sticker book than a medical test, but
- [Dr. Jessica Dawson](https://hdsa.org/hd-research/spotlight-on-hd-researchers/hdsa-researcher-spotlight-jessica-dawson/) - Why tiny changes in DNA can make a big difference in Huntington’s disease 2023 HD Human Biology Project Fellow, Dr. Jessica Dawson, University of British Columbia Written by: Dr. Tam Maiuri Edited by: Dr. Kaitlyn Deschamps Huntington’s disease (HD) does not look the same for everyone. Even people with the same genetic diagnosis can experience symptoms that begin
- [Dr. Thiago Macedo e Cordeiro, MD, MS](https://hdsa.org/hd-research/spotlight-on-hd-researchers/dr-thiago-macedo-e-cordeiro-md-ms/) - Putting Out the Fire: A Different Kind of Progress in Huntington's Disease 2023 HD Human Biology Project Fellow, Dr. Thiago Macedo e Cordeiro, MD, MS, The University of Texas Health Sciences Center at San Antonio Written by Dr. Tam Maiuri Edited by Dr. Kaitlyn Deschamps When people talk about Huntington's disease (HD) research, the focus is
- [Dr. Roy Maimon](https://hdsa.org/hd-research/spotlight-on-hd-researchers/dr-roy-maimon/) - Can the Adult Brain Repair Itself? 2023 HD Human Biology Project Fellow, Dr. Roy Maimon, New York University Written by Dr. Tam Maiuri Edited by Dr. Christina Peng For more than a century, scientists believed that once brain cells are lost, they are gone for good. Dr. Roy Maimon is building his lab around a bold question: What
- [Dr. Chris Kay](https://hdsa.org/hd-research/spotlight-on-hd-researchers/hdsa-researcher-spotlight-dr-chris-kay/) - Uninterrupted: Dr. Chris Kay on Somatic Expansion, an Unusual Brain Bank, and the Next Chapter of HD Genetics 2023 HDSA Berman-Topper Family HD Career Development Fellow, Dr. Chris Kay, University of Auckland Written by Dr. Tam Maiuri Edited by Dr. Kaitlyn Deschamps Thirty feet from Dr. Chris Kay's desk is a room where brains are dissected, in the same
- [Dr. Yifat Glikmann-Johnston](https://hdsa.org/hd-research/spotlight-on-hd-researchers/dr-yifat-glikmann-johnston/) - HDSA’s HD Human Biology Project reflects our goal of person-centric research. 2020 fellow Dr. Glikmann-Johnston shares her work, motivation to study HD and more
- [Dr. Leonard Sokol](https://hdsa.org/hd-research/spotlight-on-hd-researchers/dr-leonard-sokol/) - 2021 HDSA Clinical Research Pilot Grant Recipient Department of Neurology, Northwestern Feinberg School of Medicine; Divison of Palliative Medicine, Department of Internal Medicine, University of California San Francisco Mentors: David Cella, Ph.D. (Northwestern); Danny Bega, MD (Northwestern); Benzi Kluger, MD (Rochester); Hillary Lum, MD, Ph.D. (Colorado); and Allison Applebaum (Memorial Sloan Kettering) As part of
- [Dr. Richard Hickman](https://hdsa.org/hd-research/spotlight-on-hd-researchers/dr-richard-hickman/) - 2018 HDSA Human Biology Project Fellow Columbia University Irving Medical Center Mentors: Ai Yamamoto, PhD, Jean-Paul Vonsattel, MD, Karen Marder, MD, MPH What initially inspired you to enter into HD Research, and, since entering the field, what experiences have brought you to your current point in your career? I became interested in diseases of the
- [Dr. Osama Al Dalahmah](https://hdsa.org/hd-research/spotlight-on-hd-researchers/dr-osama-al-dalahmah/) - 2019 Human Biology Project Fellow Columbia University Mentors: Jean Paul Vonsattel, MD, James Goldman MD, PhD What initially inspired you to enter into HD Research, and, since entering the field, what experiences have brought you to your current point in your career? I read the work of Jean Paul Vonsattel on the pathology of HD
- [Dr. Yasaman Gholamalipour](https://hdsa.org/hd-research/spotlight-on-hd-researchers/dr-yasaman-gholamalipour/) - 2020 HDSA Berman-Topper Fellow University of Massachusetts Medical School Mentors: Neil Aronin, MD, and Michael Brodsky, Ph.D. What initially inspired you to enter into HD Research, and, since entering the field, what experiences have brought you to your current point in your career? After getting my bachelor’s degree in Chemistry from Shiraz University in
- [Dr. Nicholas Caron](https://hdsa.org/hd-research/spotlight-on-hd-researchers/dr-nicholas-caron/) - 2019 HDSA Berman-Topper Fellow University of British Columbia Mentor: Michael Hayden, MB, ChB, PhD, FRCP(C), FRSC Can you tell us a little about yourself and how you got involved in HD research? I’ve always been someone who enjoys finding solutions to complex problems. After completing my Bachelor of Science at the University of Ottawa, I
- [Dr. Saül Martinez-Horta](https://hdsa.org/hd-research/spotlight-on-hd-researchers/dr-saul-martinez-horta/) - 2019 HDSA Human Biology Fellow Movement Disorders Unit, Hospital de la Santa Creu i Sant Pau, Barcelona Mentors: Jaime Kulisevsky, MD, PhD “Neurobiological mechanisms subserving the differential expression and rate of progression of cognitive impairment in Huntington’s disease” Can you tell us a little about yourself and how you got involved in HD research? I’m
- [Dr. Lauren Byrne](https://hdsa.org/hd-research/spotlight-on-hd-researchers/dr-lauren-byrne/) - With a shared goal of bolstering opportunities for young HD researchers and generous support from the Berman and Topper families, HDSA launched the Berman Topper HD Career Development Fellowship in 2016 to support future generations of passionate HD scientists and clinicians. In a recent interview, Lauren Byrne, PhD, a 2019 awardee of this prestigious fellowship, shared with us her journey into HD research and motivation for the depth of her involvement
- [Danielle Larson, MD](https://hdsa.org/hd-research/spotlight-on-hd-researchers/danielle-larson-md/) - Danielle Larson, MD 2019 HDSA Human Biology Fellow Northwestern University Mentors: Danny Bega, MD, MSCI & Tanya Simuni, MD “TeleHD: Feasibility, validity, and value of telemedicine for motor and non-motor assessments in patients with HD” Can you tell us a little about yourself and how you got involved in HD research? I am a Movement
- [Dr. Amber Southwell](https://hdsa.org/hd-research/spotlight-on-hd-researchers/dr-amber-southwell/) - The HD Human Biology Project allows HDSA to foster innovative patient-focused research to help the HD community better understand the biology of HD as it occurs in people. There is nothing more exciting or more relevant to HD than scientific observations made in people with the disease”. - George Yohrling, PhD, Senior Director, Mission and
- [Dr. Sophie Andrews](https://hdsa.org/hd-research/spotlight-on-hd-researchers/dr-sophie-andrews/) - “The HD Human Biology Project allows HDSA to foster innovative patient-focused research to help the HD community better understand the biology of HD as it occurs in people. There is nothing more exciting or more relevant to HD than scientific observations made in people with the disease”. - George Yohrling, PhD, Senior Director, Mission and
- [Dr. Marie Didiot](https://hdsa.org/hd-research/spotlight-on-hd-researchers/dr-marie-didiot/) - The HD Human Biology Project allows HDSA to foster innovative patient-focused research to help the HD community better understand the biology of HD as it occurs in people. There is nothing more exciting or more relevant to HD than scientific observations made in people with the disease”. - George Yohrling, PhD, Senior Director, Mission and
- [Dr. Rocio Gomez-Pastor](https://hdsa.org/hd-research/spotlight-on-hd-researchers/dr-rocio-gomez-pastor/) - Meet Dr. Rocio Gomez-Pastor, whose HDSA HD Human Biology Project Fellowship helped her transition to university faculty and pursue long-term study of Huntington’s disease. Read about what drew Dr. Gomez-Pastor to the field of HD research, how brain cells assemble an army to fight off disease, and what it’s like to be a part of
- [Dr. Natalia Pessoa Rocha](https://hdsa.org/hd-research/spotlight-on-hd-researchers/dr-natalia-pessoa-rocha/) - Meet Dr. Natalia Pessoa Rocha, who is supported by HDSA’s Human Biology Project. Dr. Rocha is using brain imaging techniques to study inflammatory cells in a clinical study at the University of Texas, Houston, in collaboration with an HDSA Center of Excellence. Learn why she loves her work and what she’s finding out through support
- [Dr. Rachel Harding](https://hdsa.org/hd-research/spotlight-on-hd-researchers/dr-rachel-harding/) - Meet HDSA's 2018 Berman-Topper fellow Dr. Rachel Harding, who is working with Drs. Cheryl Arrowsmith and Ray Truant to understand how Huntingtin interacts with DNA repair proteins. She shares how she became involved in HD research, what she does outside the lab, and provides a link to follow along with her work in real time.
- [Dr. Madeleine Sharp](https://hdsa.org/hd-research/spotlight-on-hd-researchers/dr-madeleine-sharp/) - Dr. Madeleine Sharp was awarded an HDSA Human Biology Project Fellowship in 2016 and presented her work at HDSA’s 2018 Convention in Los Angeles. Her research focuses on the cognitive and behavioral symptoms of Huntington’s disease. Read about Dr. Sharp’s work, what drew her to the field of HD research, and how she learns from

## Categories

- [Uncategorized](https://hdsa.org/blog/category/uncategorized/)
- [Weekly News](https://hdsa.org/blog/category/weekly-news/)
- [Our opinion](https://hdsa.org/blog/category/our-opinion/)

## Tags

- [Centers of Excellence](https://hdsa.org/blog/tag/centers-of-excellence/)
- [COE](https://hdsa.org/blog/tag/coe/)
- [News](https://hdsa.org/blog/tag/news/)
- [HDSA](https://hdsa.org/blog/tag/hdsa/)
- [Huntington's Disease](https://hdsa.org/blog/tag/huntingtons-disease/)
- [HD](https://hdsa.org/blog/tag/hd/)
- [Huntington disease](https://hdsa.org/blog/tag/huntington-disease/)
- [Huntington's](https://hdsa.org/blog/tag/huntingtons/)
- [Huntington's disease society of america](https://hdsa.org/blog/tag/huntingtons-disease-society-of-america/)
- [blog](https://hdsa.org/blog/tag/blog/)
- [research](https://hdsa.org/blog/tag/research/)
- [research new](https://hdsa.org/blog/tag/research-new/)
- [Caregivers](https://hdsa.org/blog/tag/caregivers/)
- [science](https://hdsa.org/blog/tag/science/)
- [neurology](https://hdsa.org/blog/tag/neurology/)
- [surveys](https://hdsa.org/blog/tag/surveys/)

## Stats Types

- [view](https://hdsa.org/blog/wpa-stats-type/view/)
- [unknown](https://hdsa.org/blog/wpa-stats-type/unknown/)
- [iPhone](https://hdsa.org/blog/wpa-stats-type/iphone/)
- [Chrome](https://hdsa.org/blog/wpa-stats-type/chrome/)
- [Windows](https://hdsa.org/blog/wpa-stats-type/windows/)
- [Android](https://hdsa.org/blog/wpa-stats-type/android/)
- [Safari](https://hdsa.org/blog/wpa-stats-type/safari/)
- [Macintosh](https://hdsa.org/blog/wpa-stats-type/macintosh/)
- [Firefox](https://hdsa.org/blog/wpa-stats-type/firefox/)
- [Linux](https://hdsa.org/blog/wpa-stats-type/linux/)
- [Samsung Browser](https://hdsa.org/blog/wpa-stats-type/samsung-browser/)
- [event](https://hdsa.org/blog/wpa-stats-type/event/)
- [Internet Explorer](https://hdsa.org/blog/wpa-stats-type/internet-explorer/)
- [Opera](https://hdsa.org/blog/wpa-stats-type/opera/)
- [Amazon Silk](https://hdsa.org/blog/wpa-stats-type/amazon-silk/)
- [Fire OS](https://hdsa.org/blog/wpa-stats-type/fire-os/)
- [QQ Browser](https://hdsa.org/blog/wpa-stats-type/qq-browser/)
- [iPad](https://hdsa.org/blog/wpa-stats-type/ipad/)
- [Android Browser](https://hdsa.org/blog/wpa-stats-type/android-browser/)
- [UC Browser](https://hdsa.org/blog/wpa-stats-type/uc-browser/)
- [Microsoft Edge](https://hdsa.org/blog/wpa-stats-type/microsoft-edge/)
- [Silk](https://hdsa.org/blog/wpa-stats-type/silk/)

## Types

- [990s](https://hdsa.org/?finreptax=990s)
- [Annual Report](https://hdsa.org/?finreptax=annual-report)
- [Audited Financials](https://hdsa.org/?finreptax=audited-financials)

## Categories

- [Summaries of 2018 HDSA-Funded](https://hdsa.org/blog/categories/summaries-of-2018-hdsa-funded/)
- [Summaries of 2019 HDSA-Funded](https://hdsa.org/blog/categories/summaries-of-2019-hdsa-funded/)
- [Summaries of 2020 HDSA-Funded](https://hdsa.org/blog/categories/summaries-of-2020-hdsa-funded/)
- [Summaries of 2021 HDSA-Funded](https://hdsa.org/blog/categories/summaries-of-2021-hdsa-funded/)
- [Summaries of 2022 HDSA-Funded](https://hdsa.org/blog/categories/summaries-of-2022-hdsa-funded/)
- [Summaries of 2023 HDSA-Funded](https://hdsa.org/blog/categories/summaries-of-2023-hdsa-funded/)
- [Summaries of 2024 HDSA-Funded](https://hdsa.org/blog/categories/summaries-of-2024-hdsa-funded/)
- [Summaries of 2025 HDSA- Funded](https://hdsa.org/blog/categories/summaries-of-2025-hdsa-funded/)

## Product categories

- [Shop HDSA Partners](https://hdsa.org/shop/hdsa-partners/) - HDSA FlowerPetal.com FTD.com/HDSA iGive.com/HDSA AmazonSmile Kathy Gibson Prints I’m Still Me Activity Cards
- [Publications](https://hdsa.org/shop/publications/) - Advocacy Behavior Caregiving Clinical Care Foreign Language Publications General Information Genetics & Genetic Testing Juvenile Huntington’s Disease Law Enforcement Issues Nutrition & Swallowing Personal & Family Issues Personal Narratives Physical & Occupational Therapy Year in Review Publications
- [General Information](https://hdsa.org/shop/publications/general-information/)
- [genetics & genetic testing](https://hdsa.org/shop/publications/genetics-genetic-testing/)
- [caregiving](https://hdsa.org/shop/publications/caregiving/)
- [clinical care](https://hdsa.org/shop/publications/clinical-care/)
- [Nutrition & Swallowing](https://hdsa.org/shop/publications/nutrition-swallowing/)
- [Physical & Occupational therapy](https://hdsa.org/shop/publications/physical-occupational-therapy/)
- [Juvenile Huntington's Disease](https://hdsa.org/shop/publications/juvenile-huntingtons-disease/)
- [Personal and family issues](https://hdsa.org/shop/publications/personal-and-family-issues/)
- [PERIODICALS](https://hdsa.org/shop/publications/periodicals/)
- [Law enForcement Issues](https://hdsa.org/shop/publications/law-enforcement-issues/)
- [PERSONAL NARRATIVES](https://hdsa.org/shop/publications/personal-narratives/)
- [Foreign Language publications](https://hdsa.org/shop/publications/foreign-language-publications/)
- [Behavior](https://hdsa.org/shop/publications/behavior/) - Behavior

## Picture tag

- [HDSA conference](https://hdsa.org/blog/ngg_tag/hdsa-conference/)
- [breakout meetings](https://hdsa.org/blog/ngg_tag/breakout-meetings/)
- [conference photography](https://hdsa.org/blog/ngg_tag/conference-photography/)
- [convention daily](https://hdsa.org/blog/ngg_tag/convention-daily/)
- [convention photographer](https://hdsa.org/blog/ngg_tag/convention-photographer/)
- [editorial photographer](https://hdsa.org/blog/ngg_tag/editorial-photographer/)
- [event photographer](https://hdsa.org/blog/ngg_tag/event-photographer/)
- [huntingtons disease](https://hdsa.org/blog/ngg_tag/huntingtons-disease/)
- [speakers on stage](https://hdsa.org/blog/ngg_tag/speakers-on-stage/)
- [yoga](https://hdsa.org/blog/ngg_tag/yoga/)
- [arts culture and entertainment](https://hdsa.org/blog/ngg_tag/arts-culture-and-entertainment/)
- [bestof](https://hdsa.org/blog/ngg_tag/bestof/)
- [topix](https://hdsa.org/blog/ngg_tag/topix/)
- [celebrities](https://hdsa.org/blog/ngg_tag/celebrities/)
- [fashion](https://hdsa.org/blog/ngg_tag/fashion/)
- [coprorate photographer](https://hdsa.org/blog/ngg_tag/coprorate-photographer/)
- [event and headshot photography](https://hdsa.org/blog/ngg_tag/event-and-headshot-photography/)
- [kinserstudios.com](https://hdsa.org/blog/ngg_tag/kinserstudios-com/)