Born in 1912, Woody Guthrie was an American singer-songwriter and folk musician whose musical legacy includes hundreds of political, traditional and children's songs, ballads and improvised works. He frequently performed with the slogan "This Machine Kills Fascists" displayed on his guitar. His best-known song is "This Land Is Your Land." Songwriters as Bob Dylan, Phil Ochs, Bruce Springsteen, Robert Hunter, Harry Chapin, John Mellencamp, Pete Seeger, Andy Irvine, Joe Strummer, Billy Bragg, Jerry Garcia, Jay Farrar, Bob Weir, Jeff Tweedy, Bob Childers and Tom Paxton have acknowledged Guthrie as a major influence. Folk musician Arlo Guthrie is one of Woody’s eight children.
By the late 1940s, Guthrie's health was declining. He received various misdiagnoses, but in 1952, it was finally determined that he was suffering from Huntington's disease. 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. In 1967, Woody Guthrie, lost his battle with HD. He was just 55 years old.
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, Dr. James 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 - 1-800-345-HDSA - and this web site 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.