In
1967, folksinger Woody Guthrie died at the age of 55 from complications
of HD. For the next 20 years, his widow Marjorie dedicated her life to
alleviating the suffering of those affected by HD and their families.
To accomplish this, she founded the Committee to Combat Huntington’s
Disease, which eventually became the Huntington’s disease Society
of America. Today, HDSA is a national not-for-profit voluntary health
agency. The mission of the HDSA is to promote and
support research directed at discovering a treatment and ultimately a
cure for HD; to help individuals affected by HD and their families through
support and services; and to educate both the public and health care professionals
about HD. HDSA is the only not-for-profit organization
in North America that focuses on so many aspects of the disease. Research:
Huntington’s disease is caused by the mutation of a single gene
and does not skip generations. No factors other than heredity affect the
mutation, therefore advances in the understanding and treatment of HD
increase scientists’ ability to understand the workings (and advance
the cure) of many related or similar diseases. HD
is the prototypical disease for neurodegenerative diseases such as Parkinson’s,
Alzheimer’s, Lou Gherig’s Disease (amyotrophic lateral sclerosis),
multiple sclerosis, and muscular dystrophy; movement disorders such as
Parkinson’s disease, and genetic diseases such as familial breast
cancers. HD research has the potential to impact research
in all of these diseases. HDSA funds the Coalition for the Cure, an innovative,
international research program focused on scientific collaboration to
find therapeutic intervention and a cure for HD. We also provide seed
money to ten innovative research projects, have awarded seven Fellowships
to encourage young postdoctoral investigators to enter the field of HD
research and are providing three Initiative Grants to researchers investigating
novel, promising approaches that would not be funded through ordinary
channels. HDSA is currently funding three major HD research projects at
Emory University. Patient and family services:
In addition to funding seventeen Centers of Excellence, HDSA provides
support to a network of 31 local chapters, a toll-free HD Helpline that
receives over 240 calls and responds to over 50 e-mail messages per month,
and maintains a web site (www.hdsa.org) that receives over 33,000-targeted
hits (looking for specific information) per month. Education:
HDSA distributes books, pamphlets, guides, and videos on all aspects of
HD, written and edited by healthcare professionals. We also produce newsletters
and research updates for healthcare professionals, caregivers, and those
living with HD, and sponsor a national convention.
Sandy Lee before HD
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