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 attendees since 2019. The 37th Annual HDSA Convention welcomed 527 in-person attendees and more than 800 virtual attendees from around the globe in more than 14 countries. All participants were also able to download the free HDSA Convention app which allowed them to connect with other attendees, ask questions during sessions, get updates and much more.
Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes HD. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD are described as having, ALS, Parkinson’s and Alzheimer’s – simultaneously.
“It was amazing to bring the HD community together again,” said Louise Vetter, HDSA’s President & CEO. “Despite limiting the number of in-person attendees, the magic and one-of-a-kind energy of the HDSA Convention was certainly present. Living with a rare disease can be isolating, so the togetherness of Convention is a powerful weapon in the fight to improve the lives of everyone affected by Huntington’s disease.”
On day one of the HDSA Convention, in-person attendees enjoyed the annual Team Hope Walk around the streets of Atlanta followed by a Welcome Reception with great food and music.
The second day began with a comprehensive and very entertaining research update during the Opening Ceremony from Drs. Jeff Carroll and Ed Wild from HDBuzz.net. Sessions were conducted throughout the day led by HD experts and the Volunteer Award Luncheon. The following were recognized with awards during the luncheon:
Social Media Award: HDSA Los Angeles Chapter
Outstanding Achievement in Advocacy Award: Washington State Chapter
Outstanding Achievement in Board Development: Massachusetts & Rhode Island Chapter
Outstanding Achievement in Education or Family Services: Kentucky Chapter
Outstanding Achievement in Fundraising: Central Ohio Chapter
Affiliate of the Year Award: HDSA Omaha Affiliate
Chapter of the Year Award: HDSA Northeast Ohio Chapter
Day two was capped off with the annual HDSA National Youth Alliance (NYA) Talent Show. The HDSA NYA Talent Show raised more than $21,000 to support youth scholarships to attend next year’s HDSA Convention in New Orleans.
On the third and final day of the HDSA Convention began with the Research Forum and an amazing keynote from Dr. Sarah Tabrizi of University College London (UCL). After the final sessions, all those in attendance (both in-person and virtual) took part in the HDSA Convention Awards Dinner & Gala which included the emotional Candle Lighting ceremony to honor the HD community.
During the Awards Dinner, the HDSA Center of Excellence at Emory University was recognized for its 25th anniversary of providing multidisciplinary HD care and the following individuals received national awards:
Excellence in Care: Jessica Marsolek (Minnesota)
Youth Award: Ashley Pesi (Pennsylvania)
Research Award: Dr. Sarah Tabrizi (University College London)
Marjorie Guthrie Award: Heather Thurgood Wilmoth (Mississippi)
Woody Guthrie Award: Kinser Cancelmo (Massachusetts)
Person of the Year: Jesse Lis (Ohio)
The last in-person HDSA Convention was held in Boston, MA with more than 1,500 attendees. HDSA plans to remove attendance restrictions and bring back popular HDSA Convention activities to the 38th Annual HDSA Convention in New Orleans, LA on June 1-3, 2023.
The Huntington’s Disease Society of America would like to thank the following sponsors for making the 37th Annual HDSA Convention a success:
Presenting Sponsors: Genentech and Teva Pharmaceuticals
Gold Sponsor: uniQure
Gold Nonprofit Sponsor: Enroll-HD/CHDI
Silver Sponsors: Neurocrine Biosciences, Novartis and Sage Therapeutics
Bronze Sponsors: MassMutual SpecialCare, Picnic Health, PTC Therapeutics and Wave Life Sciences
Friend Sponsors: Archcare, AskBio, Broda, Prilenia and Spark Therapeutics.
The Huntington’s Disease Society of America (HDSA) is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with HD and their families. To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call (800) 345-HDSA.
Chris Cosentino, Director of Marketing & Communications