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The Huntington’s Disease Society of America is the largest 501(c)(3) non-profit volunteer organization dedicated to improving the lives of everyone 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 and the 250,000 at-risk in the United States. Among the catalog of resources made possible by the organization, HDSA supports 21 Centers of Excellence at major medical facilities throughout the U.S., funds research into the biology of the disease to facilitate the development of treatments and cures, hosts more than 170 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. The Society is comprised of 51 local chapters and affiliates across the country with its headquarters in New York City.
Huntington's disease (HD) is a devastating, hereditary, degenerative brain disorder that results in a loss of cognitive, behavioral and physical control, and for which, presently, there is no cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason. Symptoms usually appear in an individual between 30 and 50 years of age and progress over a 10 to 25 year period. Eventually, a person with HD becomes totally dependent upon others for his or her care. More than 30,000 people in the United States are currently diagnosed with HD and 250,000 are at-risk. Each of their siblings and children has a 50 percent risk of developing the disease. Although medications can relieve some symptoms in certain individuals, research has yet to find a means of conquering or even slowing the deadly progression of HD.
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