Huntington's Disease Society of America - Great Lakes Region

About HDSA

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families. At HDSA, family is everything.

What is Huntington’s Disease?

Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

HDSA History

Soon after legendary folk singer Woody Guthrie lost his battle with HD, his wife, Marjorie, sought out other families affected by this devastating disease. In 1968, a handful of dedicated volunteers formed the Committee to Combat Huntington's Disease, which would later become the Huntington’s Disease Society of America.

Mission of HDSA

To improve the lives of people affected by HD and their families.