Huntington's Disease Society of America (HDSA) is the premier nonprofit organization dedicated to improving the lives of people affected by Huntington's Disease. They provide, across the United States, a network of state chapters and affiliates, support groups, social workers, and centers to connect HD affected families to healthcare professionals.
HDSA's history starts in 1942 when NYC based dancer Marjorie Mazia first met singer-songwriter and folk musician Woody Guthrie. They would wed the next year and bare four children: Cathy (perished in a house fire at age 4), Arlo, Joady, and Nora. By the late 1940s, Woody's health was rapidly declining and was only in 1952, after many misdiagnoses, that he was officially determined to have Huntington's Disease. Throughout the course of Woody's illness, that then led to his death on October 3, 1967 at age 55, Marjorie was a constant support for her husband and served as his caretaker, even to teaching communication to Woody after he had lost muscle control.
Before Woody's passing, Marjorie made a promise to devote her life to research and advocacy of HD and the lives affected by it. She reached out and connected to other affected families through an ad in a NYC newspaper, and, together with five volunteers, they formed the Committee to Combat Huntington's Disease (CCHD). CCHD was later inducted in the State of New York as a nonprofit voluntary health agency on September 18, 1967
"She served on federal and state government panels, including the National Advisory Council of the National Institute of General Medical Science, New York Governor Hugh Carey’s Select Committee on Long Term Care, the State of New York Commission on Health Education and Illness Prevention, the executive committee of the New York State Genetic Diseases Program and the Board of Visitors of Helen Hayes Hospital. She chaired the United States Commission for the Control of Huntington’s Disease and its Consequences in 1976-77." (http://hdsa.org/about-hdsa/hdsa-history/)
“The Team Approach to Huntington’s Disease” was Marjorie's most famous lecture and was published and distributed across the country for educational purposes. Marjorie Guthrie convinced then President Jimmy Carter to form a Presidential Commission to study neurological diseases, including HD, the results of the report thus became a cornerstone for HDSA.
Marjorie Guthrie died just a few months before the genetic marker for HD was found in 1983.
On November 4th 1983, CCHD became the Huntington’s Disease Society of America and a tribute to the vision and mission of Woody and Marjorie Guthrie.