hdsa.orgHuntington's Disease Society of America

Donate About HDSA News Events Chapters & Affiliates HDSA Centers of Excellence HDSA's National Youth Alliance PUBLICATIONS What is HD? What Is HD? 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 usually during their prime working years and has no cure. History and Genetics of Huntington’s Disease Overview of HD Who Is At-Risk? Genetic Testing & Family Planning Juvenile Onset HD History of HD Huntington’s Disease Symptoms The Age of Onset Motor / Physical Symptoms Cognitive Symptoms Behavioral / Psychological Symptoms Stages of Huntington’s Disease Early Stage Middle Stage Late Stage Find Help Find Help Locate HDSA Chapters and Affiliates, Support Groups, Social Workers, and Centers of Excellence in your area as well as additional local medical, legal, social, and therapeutic resources for people with HD and their families. LOCATE RESOURCES IN YOUR AREA Clinical Care & Services HDSA Centers of Excellence Symptom Management Suicide Prevention Healthcare & Future Planning Genetic Testing & Your Rights Disability Benefits and HD Long-Term HD Care Living Well With HD Nutrition Exercise / Physical Therapy Swallow Dysfunction & Choking Speech Law Enforcement Training Guide Community & Social Support Youth Services Caregiver Services & Resources HDSA Telehealth HDSA Support Groups HDSA Social Workers HDSA Resource Library HD Research HD Research Since 1999, the Huntington’s Disease Society of America has committed more than $20 million to fund research, with the goal of finding effective treatments to slow Huntington’s disease. Our research efforts have helped to increase the number of scientists working on HD and have shed light on many of the complex biological mechanisms involved. Participate in HD Research HD Trialfinder Participate in Online Surveys Enroll-HD Learn About HD Research This Week In HD Research Blog HDSA Research Webinars Huntingtin-Lowering Webinar HDBuzz Annual HDSA Research Reports HD Research in the Pipeline HDSA Research Funding Programs HD Human Biology Project Donald A. King Fellowship Berman-Topper Fellowship Spotlight on HD Researchers HD Cope Scientific Advisory Board Healthcare Professional Resources Healthcare Professional resources This section includes online courses for physicians, social workers and therapists who care for people with HD at the local level. Courses deal with cognitive, physical, therapeutic, technological and legal HD issues among other topics. This section also includes reference materials in video and PDF format for Social Workers on HD issues listed by varied categories. HD 101: CME SERIES Series Intro Genetic Factors Prodrome of HD HD Cognitive Features Psychiatric Syndromes Motor Dysfunction Juvenile HD Team Based Care for HD Experimental Therapeutics Disability and Advocacy SOCIAL WORKER CONTINUING EDUCATION Helping Young Cope Ethics 3 Behavioral Management 4 Legal Issues 5 Technology 6 Genetic Counseling 7 Medical Marijuana PT CONTINUING EDUCATION 1 HD Overview 2 PT Evaluation 3 PT in Early-Mid Stages 4 PT in Late Stage 5 Reimbursement Issues RESOURCES FOR SOCIAL WORKERS Get Involved GET INVOLVED When Marjorie Guthrie founded our organization in 1967, her vow was to “do something” about this devastating disease. Today we continue her legacy by bringing together the entire community to provide help and hope to all families affected by Huntington’s disease. Listed here are some of the ways you can get involved in the fight against HD. DONATION OPPORTUNITIES One-Time Donation Monthly Giving Tribute & Memorial Donations Stocks / Assets / Real Estate Planned Giving Matching Gifts Program Workplace Giving Vehicle Donations HDSA Tree of Help & Hope HDSA Family Funds Winter Spectacular Volunteer Opportunities Volunteer Registration HDSA New York City Marathon HD ADVOCACY HDSA Events HDSA Shop HDSA Gear Flowers for HDSA Publications Shop HDSA Partners HDSA’S 35TH ANNUAL CONVENTION GOES VIRTUAL! In light of COVID-19, we have decided it is in the best interest of our families to convert to a virtual event. The Virtual Convention will continue to take place in June, but the exact timing of events is likely to change to accommodate a nationwide online audience. Learn More HDSA ANNOUNCES FIFTY 2020 CENTERS OF EXCELLENCE The Huntington’s Disease Society of America is proud to announce that fifty outstanding Huntington’s disease care facilities are being awarded the designation of HDSA Centers of Excellence for 2020. Learn More HDSA 2019 YEAR IN REVIEW MAGAZINE Take a look back on the highlights from this past year & join us as we keep the momentum moving forward into 2020. Learn More THE MARKER: HDSA’S 2019 RESEARCH REPORT A look back on clinical trials, conferences, fellowships and promising developments in HD research. Learn More PARTICIPATE IN AN HDSA TEAM HOPE WALK The Team Hope Walk program is our signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease. Find an event in your area! Learn More VIEW 34th ANNUAL HDSA CONVENTION VIDEOS Watch select workshops and presentations from the 34th Annual HDSA Convention in Boston! Learn More This Week in HD Research Dr. Leora Fox keeps you up-to-date on HDSA research activities, recently published work about Huntington’s disease, historical moments in HD research and more. Learn More PARTICIPATE IN A CLINICAL TRIAL HD Trialfinder identifies trials nationwide looking for participants that share the same diagnosis, stage and treatment history. Learn More FREE TELEHEALTH COUNSELING Announcing free online therapy sessions for people affected by HD provided by HDSA & American Well® . HDSA-trained licensed social workers and psychologists will be available to HD families in all 50 states. Learn More New to HD Locate Resources Enroll in a Trial Donate to HDSA News 03/20/2020 HDSA Community Update: HDSA’s 35th Annual Convention Goes Virtual! 03/19/2020 BLOG: This Week In HD Research 03/18/2020 HDSA Community Update: HD & COVID-19 03/13/2020 HDSA Community Update 03/13/2020 HDBuzz: New Molecule Can Reverse The Huntington’s Disease Mutation In Lab Models 03/05/2020 HDSA Convention Community Statement 03/03/2020 HDBuzz: Day 3 at HD Therapeutics Conference 03/02/2020 HDSA Films Presents ALLIE & JOE 03/02/2020 HDBuzz: Day 2 at HD Therapeutics Conference 02/28/2020 HDBuzz: Day 1 at HD Therapeutics Conference 02/05/2020 HDSA Announces Fifty 2020 Centers of Excellence 01/17/2020 HDSA Publishes 2019 Year In Review Magazine 01/17/2020 REGISTER TODAY! 35th Annual HDSA Convention in New Orleans 12/30/2019 Community Letter from Wave Life Sciences Regarding Topline Results from PRECISION-HD2 12/30/2019 Wave Life Sciences Announces Topline Data and Addition of Higher Dose Cohort in Ongoing Phase 1b/2a PRECISION-HD2 Trial in Huntington’s Disease 12/23/2019 HDSA Earns Fourth Consecutive 4-Star Rating From Charity Navigator 12/23/2019 HDSA Awards Inaugural Clinical Research Pilot Grants to Four Centers of Excellence 12/05/2019 HDSA Listed As Top 10 Volunteer Opportunities In New York City By Great Nonprofits 11/27/2019 HDSA Welcomes Three Trustees to National Board 11/19/2019 HDSA Publishes The Marker – 2019 Research Report 11/06/2019 HDSA’s New York City Marathon Team Raises More Than $133,000 To Support The Fight Against HD 10/15/2019 HDSA Awards Five 2019 HD Human Biology Project Fellowships 10/15/2019 Community Statement from Roche / Genentech 10/01/2019 View 5th Annual Freeze HD Red Carpet and Event Photos 10/01/2019 5th Annual Freeze HD Raises More Than $420,000 To Support HDSA 09/11/2019 2018 HDSA Annual Report 08/05/2019 HDBUZZ: Exciting New Huntingtin Lowering Tool Described 07/30/2019 Now Accepting 2020 HDSA Centers of Excellence Letters of Interest 07/23/2019 VIDEO: Here’s The Deal With Caregiving While Positive 07/15/2019 VIDEO: 34th A...