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  • Limited Edition Woody Guthrie Tribute Concert Box Sets Signed by Nora Guthrie

    On January 20, 1968, the “A Tribute To Woody Guthrie” concert at Carnegie Hall was the first major fundraiser for the Huntington’s Disease Society of America (formerly known as the Committee to Combat Huntington’s Disease).

    To celebrate its 50th Anniversary, HDSA is selling Limited Edition Box Sets signed by Woody Guthrie’s daughter, Nora!

    The 3-CD Set with two beautifully illustrated books containing historic liner notes and Guthrie biography, original concert reviews and photographs, attendees interviews and artists bios, and concert ephemera from both the 1968 Concert and the 1970 Concert at the Hollywood Bowl.

    When Woody Guthrie died on October 3, 1967, after a stubborn fifteen year bout with Huntington‘s disease, a lot of people who had known him, worked with him, or just sung his songs felt a spontaneous desire to do something.

    The list of artists joined Woody’s own friends and peers with the next generation of songwriters and musicians just coming into their own. Appearing at the January concert were Judy Collins, Bob Dylan (in the first public appearance after his motorcycle accident in 1966 with members of The Band), Jack Elliott, Arlo Guthrie, Richie Havens, Odetta, Tom Paxton, Pete Seeger. Actors Will Geer and Robert Ryan narrated the program. Both performances were sold out an hour after tickets went on sale. Those fortunate enough to attend participated in one of the most exciting and remarkable musical experiences of all time.

    Two years later, eighteen thousand people attended the west coast Tribute which took place on September 12, 1970, at the Hollywood Bowl. Joan Baez, Jack Elliott, Arlo Guthrie, Odetta, Country Joe McDonald, Richie Havens, Earl Robinson and Pete Seeger performed. Peter Fonda joined Will Geer in narrating. The house band included members of Swampwater and Ry Cooder.

    This amazing Box Set features:

    • Twenty never before released tracks
    • Bonus tracks include interviews with Judy Collins, Jack Elliott, Arlo Guthrie, Country Joe McDonald, Phil Ochs, Tom Paxton, and Pete Seeger
    • Rare photos and never before seen stills from the Hollywood Bowl show film masters
    • Essays by Will Kaufman, Wenzel, and Sean Wilentz
    • Reproduction of the original 1972 TRO Concert Book includes historic and concert photos with music notations and lyrics.

    Price: $130.00

    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

    The Electronic Caregiver Premier Home Monitor and Emergency Response System

    The Electronic Caregiver Premier Home Monitor and Emergency Response System

    The Electronic Caregiver Premier Home Monitor and Emergency Response System is the most advanced product of its kind. With just a push of the button on the lightweight and waterproof wrist band the ECG Premier gives the wearer immediate two way contact with a trained and certified Emergency Medical Technician. Rapid Response is our 24 hour, 7 day, monitoring Company. The EMT at Rapid Response will contact Caregivers in the order of preference, with 911 also available. The ECG Premier is completely mobile. Whether a trip to the grocer, outside appointment, or simply walking to the mailbox, the Caregiver can be contacted in moments (cell service is required and included), providing the valuable peace of mind so important in today’s stress-filled world.HDSA has partnered with Electronic Caregiver to offer the Premier System at a monthly discount. The usual activation fee is completely eliminated. It is important to know that when you choose the ECG Premier, HDSA will also receive a $50 donation!

    There are three levels of service available with Premier, Series #2 is the most cost effective. Want more information? Visit: www.electroniccaregiver.com.

    Ordering is easy! You can go directly to the online order form-click on:

    https://secure.na1.echosign.com/public/esignWidget?wid=CBFCIBAA3AAABLblqZhAZsyvjj48fgKpKTsirkJgZIef6gf55PKsNbK96Z5NbSqBxR55VSNG89gCgCRy_SL0

    You can also order directly from the website. You provide the necessary contact and billing information and the unit is sent to you completely programmed and ready to go. Plug it in and make the initial contact with Rapid Response to activate. You are protected immediately. A Customer Service and Support phone number is available for assistance if required. There are no upfront costs.

    IMPORTANT: At the top of the order form is a field labeled “Promo Code”. To receive your monthly discount and guarantee the $50 donation, you must enter the letters: HDSA in all caps. Next please enter Dealer ID. LSM52587.

    Geoff Lee is the ECG Representative and support resource. Geoff is available to answer your questions and assist with ordering details. Contact him directly at: (610) 909-4771

    Live Out Loud

    To order your copy please click here

    Understanding Behavior in Huntington’s disease

    2nd edition
    Written and edited by Jane Paulsen
    1999

    Click here to download

    Shattered Dreams–But Hope

    By Elton Higgs

    Shattered Dreams–But Hope is a distillation of the experiences of Laquita and Elton Higgs in caring for their two JHD adopted daughters. Laquita and Elton have not only shared their own caregiving experiences at a deeply personal level, but they have also offered observations and recommendations to other HD caregivers about coping with the special challenges and stresses of HD. They address the special characteristics and needs of a JHD patient, measures to preserve the mental and physical health of the caregiver, and ways of dealing with the governmental and medical agencies who must be sought to meet the needs of an HD patient and his/her family. But this is also a book for all long-term caregivers, whatever the disablement of the one being cared for. The concluding chapter portrays what two people of faith have learned about suffering, endurance, and love when grappling with the challenge of caring for a loved one day after day, year after year.

    100% of the proceeds will go to HDSA.

    QUANTITY:

    Price: $9.00

    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.

    the-sun-or-the-shroud the-caregiver the-advocate no-answer new-rx love-was-not-enought-but-loves-was-all-we-had-1 grateful-1 forgiveness-1 family-who-cares-who-gives-paint courage-wisdom-acceptance

    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 order your copy please click here

    To download the electronic copy please click here

    New 2016 I Heart Someone With HD T-Shirt

    Show your love with an I heart someone with HD T-shirt. 100% ringspun cotton. Available in Mens & Ladies Sizes. Note: Ladies sizes are fitted and run small.

    Price: $10.00

    HD & HDSA Brochure

    Contains information about HD and HDSA.
    Click here to download

    Amaryllis- Individual Kits

    Amaryllis bulbs are among the easiest bulbs to grow indoors and the most rewarding. These premium Dutch bulbs need minimal attention but you will be rewarded with spectacular blooms to brighten up the dark winter days.
    Planting Amaryllis and watching them grow is a fun activity for the entire family.

    Each Amaryllis kit will contain everything you
    need to have your own spectacular Amaryllis
    this winter including:
    • One 26/28 cm Amaryllis Bulb
    • Decorative Pot
    • Professional Growing Medium
    • Planting Care and Aftercare Instructions
    Each kit costs only $10.00 (plus s&h)

    Amaryllis will begin shipping after October 27, 2017

    Price: $10.00

    Amaryllis- by the Case

    Amaryllis bulbs are among the easiest bulbs to grow indoors and the most rewarding. These premium Dutch bulbs need minimal attention but you will be rewarded with spectacular blooms to brighten up the dark winter days.
    Planting Amaryllis and watching them grow is a fun activity for the entire family.

    Each Amaryllis kit will contain everything you need to have your own spectacular Amaryllis this winter including:
    • One 26/28 cm Amaryllis Bulb
    • Decorative Pot
    • Professional Growing Medium
    • Planting Care and Aftercare Instructions

    Cases contain 16 Kits and are available in the following selections

    16- Red Lion Case


     

     

    Price: $150.00

    HDSA FAMILY GUIDE SERIES:
    Nutrition and Huntington’s 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 ext 219.

    QUANTITY:

    Price: $2.00

    Caregiver Guide for Mid to Late Stage Huntington’s Disease:
    For 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.

    HDSA FAMILY GUIDE SERIES:
    Long-Term Care

    HDSA, 2009, 24-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 simply ADDING TO CART or by calling 800-345-4372 ext 222.

    QUANTITY:

    Price: $2.00

    An AffaiЯ Worth Remembering With Huntington’s 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

    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

    AmazonSmile

    Shop at AmazonSmile and Amazon will make a donation to the Huntington’s Disease Society of America (HDSA). Up up 0.5% of your purchase will benefit HDSA.

    GET STARTED TODAY!

    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!

    Vita care Medical Products

    For over 25 years, Vitacare Medical Products has been manufacturing high quality Comfort and Care products that are used in Hospitals, Long Term Care Facilities, Nursing Homes and Home Care Environments.

    Our Huntington’s In-Bed Patient Protection System is a high quality product that provides a safe and comfortable patient environment.

    At Vitacare Medical Products we take great pride in our quality, workmanship, service and reliability.

    For more information contact:

    905 660 2433
    www.vitacaremedical.com

    Mention HDSA when you call to place your order and a percentage of your purchase will benefit HDSA. Valid on phone orders only.

    VitaCare_Huntington_InBed_Protection_v02

    Understanding Behavior in Huntington’s Disease: A 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.

    We Are HDSA!

    We are HDSA! is a support group newsletter which communicates news and events to HDSA support groups across the United States. We are HDSA! features upcoming educational events, information about potential guest speakers for meetings, and articles of interest to the HD community.

    DOWNLOAD: Click here for a FREE PDF DOWNLOADS

    We Are HDSA! February/March 2015We Are HDSA! June 2012
    We Are HDSA! Dec 2014/Jan.2015We Are HDSA! April 2012
    We Are HDSA! Oct./Nov. 2014We Are HDSA! February 2012
    We Are HDSA! August 2014We Are HDSA! January 2012
    We Are HDSA! June/July 2014We Are HDSA! October 2011
    We Are HDSA! April/ May 2014We Are HDSA! September 2011
    We Are HDSA! Nov./Dec.2013We Are HDSA! August 2011
    We Are HDSA! September 2013We Are HDSA! July 2011
    We Are HDSA! June 2013
    We Are HDSA! April 2013

     

    HDSA’s Toward a Cure Newsletter

    Toward a Cure provides information and opinions and relays items of interest to individuals with Huntington’s Disease and their families, healthcare professionals and interested friends and supporters.

    DOWNLOAD: Click links below for FREE PDF DOWNLOADS.

    Toward a Cure- Winter 2013

    Toward a Cure- Winter 2012

    Toward a Cure- Winter 2011

    Guía Para Medico Sobre el Manejo de la
    Enfermedad de Huntington Tercera Edición

    Datos Rapidos Sobre la EH

    SPANISH / 2 pages

    DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

    Serie de Guías 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 219.

    QUANTITY:

    Price: $2.00

    Serie de Guías Familiares:
    La Nutrición y la Enfermedad de Huntington:
    Una Guía 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 ext 219.

    QUANTITY:

    Price: $2.00

    Serie de Guías 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 ext 219.

    QUANTITY:

    Price: $2.00

    Serie de Guías 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 ext 219.

    QUANTITY:

    Price: $2.00

    Serie de Guías Familiares:
    La Prueba Genética

    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 simply ADDING TO CART or by calling 800-345-4372 ext 219.

    QUANTITY:

    Price: $2.00

    Serie de Guías 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 219.

    Serie de Guías Familiares:
    Comunicación con los Proveedores de Salud:
    Guía 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 219.

    It’s Better to Laugh Than Cry

    Clarence Vos, 2013, 83 pages.  A look at one family’s journey through Huntington’s disease and efforts to stay positive through the journey.

    PURCHASE: You may order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 219.

    QUANTITY:

    Price: $10.00

    The Greatest Man I Never Knew

    Elizabeth Baxter, 2012 168 pages.  A story about a daughter coping with the loss of her father, the man she never knew.  In the story, she describes some of her own struggles and strengths since she herself is at risk for Huntington’s disease, the same disease that had robbed her of her father.

    PURCHASE: You may order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 219.

    QUANTITY:

    Price: $22.00

    Homeward Journey
    The Poetry of Leslie R. Foor

    Leslie R Foor, 2003, 140 pages. Depicts a young writer’s life through the art of poetry. Mr. Foor was affected by HD in his mid thirties but he never gave up hope. He continued to write poems until his struggle with the disease ended at the age of 48.

    Percentage of the proceeds from this book benefit HDSA programs.

    PURCHASE: You may order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 219.

    QUANTITY:

    Price: $14.95

    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).

    To order your free copy please click here

    For additional copies please contact hdsainfo@hdsa.org

    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.

    To order your free copy please click here

    For additional copies please contact hdsainfo@hdsa.org

    HDSA Year in Review / The Marker

    Look back on the highlights in HD research, advocacy, support and events from across the country!

    DOWNLOAD: Click links below for FREE PDF DOWNLOADS.

    Year in Review 2017

    Year in Review 2016

    Year in Review 2015

    Year In Review 2014

    The Marker: 2013

    The Marker: 2012

    The Marker: 2011

    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 simply ADDING TO CART or by calling 800-345-4372 ext 219.

    QUANTITY:

    Price: $10.00

    HDSA FAMILY GUIDE SERIES:
    Talking With Kids — Huntington’s Disease

    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 simply ADDING TO CART or by calling 800-345-4372 ext 219.

    QUANTITY:

    Price: $2.00

    Is Daddy OK?

    Janet Howes, ACSW 2004, 24 pages Book is ideal for kids, age 6 through 12 who have a parent, family member or other adult in their life who is affected by HD. Book is intended to serve as tool for parents to read along with children or as a starting point for discussions about how the story relates to their specific experiences.

    A percentage of the proceeds from this book go to HDSA programs.

    PURCHASE: You may order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 219.

    QUANTITY:

    Price: $12.95

    Juvenile HD and the School Experience: Education 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 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 simply ADDING TO CART or by calling 800-345-4372 ext 219.

    QUANTITY:

    Price: $2.00

    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 simply ADDING TO CART or by calling 800-345-4372 ext 219.

    QUANTITY:

    Price: $7.00

    HDSA FAMILY GUIDE SERIES:
    Physical and Occupational Therapy – Huntington’s 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 simply ADDING TO CART or by calling 800-345-4372 ext 219.

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    Price: $2.00

    Recipes from the Heartland

    Recipes, nutrition tips and swallowing startegies for HD families prepared by members of HDSA’s Upper Midwest Region. Recipes from the Heartland was created especially for individuals and families affected by Huntington’s disease. Each recipe was carefully chosen by HD families in the Upper Midwest who have prepared these meals for their own families. Makes a great gift!

    Please note: the Recipes in this cookbook may or may not be appropriate for your loved one living with HD. Please consult your speech-language pathologists, dietician or physician before serving any new foos or preparation for your loved one.

    PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 219.

    QUANTITY:

    Price: $15.00

    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 associalted 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 simply ADDING TO CART or by calling 800-345-4372 ext 219.

    QUANTITY:

    Price: $2.00

    A Physician’s Guide to the Management of Huntington’s 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.

    PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222.

    QUANTITY:

    Price: $7.00

    A Caregiver’s Guide to Huntington’s 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 FAMILY GUIDE SERIES:
    Caregiver’s Guide to Communicating with Healthcare Providers – Huntington’s 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 simply ADDING TO CART or by calling 800-345-4372 ext 222.

    QUANTITY:

    Price: $2.00