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The Huntington's Disease Society of America is the largest 501c3 nonprofit volunteer organization dedicated to improving the lives of those affected by Huntington's Disease.
Founded in 1968 by Marjorie Guthrie, wife of folk legend Woody Guthrie who lost his battle with HD, the Society works tirelessly to provide the family services, education, advocacy and research to provide help for today, hope for tomorrow to the more than 30,000 people diagnosed with HD in the United States and the additional 250,000 at-risk. Notably, HDSA funds the HDSA Coalition for the Cure, a collaboration of 16 international researchers, as part of the HD Drug Research Pipeline, which develops potential therapies to treat and eventually cure HD; and HDSA also supports 21 Centers of Excellence at major medical facilities throughout the U.S., where people with HD and their families receive comprehensive medical, psychological and social services, in addition to physical and occupational therapy and genetic testing and counseling. The Society is comprised of 39 local chapters and affiliates across the country with its headquarters in New York City. Additionally, HDSA hosts more than 140 support groups for people with HD, their families, caregivers and people at-risk, and is the premiere resource on Huntington's Disease for medical professionals and the general public.
- Nanette Schlarmann
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