About Us
The Cure Starts Here…The Caring Never Stops.
The Huntington’s Disease Society of America, Inc. (HDSA)
Why we’re here.
“…I learned that I inherited the Huntington’s Disease gene. The news
hit me hard. For 20 years, I’ve watched my Mom struggle with HD.
Seeing her suffer breaks my heart. But that sorrow won’t defeat me.
It only makes me more determined to fight back again
this disease that devastates entire families. So fight back I do,
because way down inside I know that HD can --
and will --be beaten.”
Who we are.
We are a national non-profit voluntary health agency dedicated to finding
a cure for Huntington’s Disease. We provide vital support, information
and educational services to improve the lives of those affected by HD,
offer resources and guidance for HD families through our national network
of volunteer-based chapters and affiliates as well as through our HDSA Centers of Excellence for Family Services and promote and
support research to find a cure for HD.
Every person who inherits the HD gene will eventually develop the disease.
Each child of a parent with HD has a 50/50 chance of inheriting the gene.
HD affects both sexes and all races and ethnic groups around the world.
HD doesn’t skip generations. If you don’t inherit the gene, you cannot
pass it on.
HDSA’s Beginnings.
Soon after the legendary folk singer, Woody Guthrie, lost his battle with HD, his widow Marjorie, sought out other families affected by this devastating disease. In 1967, a handful of dedicated volunteers formed the Committee to Combat Huntington’s Disease. Today, HDSA continues the mission Marjorie Guthrie began, emerging as a national organization consisting of 37 community-based volunteer chapters, two national field directors and a national office that provides leadership, information, support and guidance to our HD families.
What we do.
HDSA currently supports more than 40 scientists and 17 major HD laboratories in North America and around the world through our HDSA Coalition for the Cure with annual grants which range from $40,000 to $100,000 for HD investigations. Twenty-one HDSA Centers of Excellence at locations in major hospitals and university medical centers are supported by HDSA across the continental United States. The national office also produces and distributes, free of charge, publications and informational materials on HD and maintains a toll-free information hotline to assist physicians, patients and family members. Through 12 HDSA regions, 37 volunteer-based chapters and affiliates, 150+ support groups, we reach out across the nation to offer HD patients and their families guidance, encouragement, resource information and leadership opportunities at HDSA events, meetings and seminars -- truly a place to care, share while we all work toward a cure. We also work towards change through our HDSA advocacy programs.
HDSA is a 501©3 not-for-profit organization recognized as a charity in good standing by the IRS(EIN: 133349873) and meets all the required high Standards of Excellence of the BBB Wise Giving Alliance, Community Health Charities, National Health Council and is proud to have an A rating from the American Institute of Philanthropy.