National Health Council — Voluntary Health Agency Guide

Huntington's Disease Society of America

The Huntington's Disease Society of America (HDSA), a national non-profit voluntary health agency, is dedicated to promoting and supporting research to find a cure for Huntington's Disease (HD), helping people and families affected by HD and educating the public and healthcare professionals about the disease.

In 1967, after Woody Guthrie, the legendary folk singer, lost his battle with HD at 55, his widow Marjorie sought out other families impacted by this devastating disease. Today, HDSA continues the mission Marjorie Guthrie began. HDSA is now a national organization consisting of more than 37 volunteer-based chapters and affiliates, 150+ support groups, 12 regions, 21 HDSA Centers of Excellence for Family Services and a national office that offers leadership, support and guidance to HD families.

HDSA also supports 17 major HD laboratories in North America and Europe through the prestigious HDSA Coalition for the Cure as well as providing more than 23 grants and fellowships to young investigators just starting out in the field of HD research.

HDSA is a member of the National Health Council, National Voluntary Health Agencies, National Organization of Rare Disorders, Alliance of Genetic Support Groups, Health Care Quality Assurance, Independent Sector and International Huntington Association.

About the condition(s):

Huntington's Disease (HD) is a hereditary brain disorder that slowly robs the affected individual of his/her ability to walk, talk, think and reason. There is currently no effective treatment and no cure. HD is caused by a single genetic defect. Each child with an affected parent has a 50/50 chance of inheriting the defective gene and they can pass it onto each of their children.