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.