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The Society is a National, voluntary health organization dedicated to improving the lives of people with Huntington's Disease and their families.
To promote and support research and medical efforts to eradicate Huntington's Disease.
To assist people and families affected by Huntington's Disease to cope with the problems presented by the disease.
To educate the public and health professionals about Huntington's disease.
Woody Guthrie was a storyteller who used music to tell his stories. In 1967, Woody Guthrie, lost his battle with HD. He was just 55 years old. During the more than 15 years that the disease affected him, he struggled to continue to communicate his conviction that every man, woman and child has within them the power to make a difference.
Soon after his death, his widow Marjorie vowed to do something about this silent killer. Dynamic and compelling, Marjorie Guthrie convinced then President Jimmy Carter to form a Presidential Commission to study neurological diseases, including HD. In 1983, HDSA Coalition for the Cure investigator, Jim Gusella, found the very first marker for the disease and, after a ten year search that involved collaboration among the top HD researchers worldwide, the gene was located on the short arm of chromosome 4.
Since that time, research has progressed rapidly and, in 2004, HDSA formed a pipeline for drug discovery that begins in the laboratory with basic science (HDSA Grants & Fellows program and the prestigious HDSA Coalition for the Cure) progresses to applied/transitional research (HDSA partner CHDI) and then moves to patient's bedside in the form of human clinical trials that test the most promising compounds often at HDSA Centers of Excellence. Today the question our families ask is not "if" there will be a treatment or cure, but "when."
In the area of care, HDSA has created a national network of resources and referrals that are unmatched by any other HD organization. HDSA Centers of Excellence provide medical and social services to those affected by HD and their families while a toll free helpline and extensive national web site (www.hdsa.org) help to provide access to services. HDSA chapters, affiliates, regions, social workers, and support groups work in tandem with the Centers of Excellence to increase awareness about HD and raise funds for research, education and family services.
- Katie Boysen
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