Woody Guthrie was a storyteller who used music to tell his stories. His work ranged from social commentaries about the working conditions of migrant workers and the urban poor to ballads and children’s songs. 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. At the time, little was known about the disease. Marjorie placed a small ad in a New York City newspaper and slowly gathered a determined handful of volunteers and HD families from across the United States. From that first moment, when Marjorie Guthrie reached out to other HD families, a worldwide movement began that would change the lives of those living with HD and bring hope to families. Dynamic and compelling, Marjorie Guthrie convinced then President Jimmy Carter to form a Presidential Commission to study neurological diseases, including HD. The recommendations that resulted from that 1977 report have served as the cornerstone of HDSA’s commitment to the care and cure of 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. Marjorie Guthrie died just a few months before the marker was found in 1983. But in the 16 years that she worked to bring this disease out of the family closet, she brought empathy and hope – a hope for a future free of HD- to those affected by this devastating disease. Her work resulted in what is today the Huntington’s Disease Society of America. HDSA is dedicated to completing the work that this courageous woman started.
