Who is HDSA? The Huntington’s Disease Society of America is the premier not-for-profit organization dedicated to improving the lives of everyone affected by Huntington’s disease and their families.
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 family.
The organization was founded on September 18, 1967 by Marjorie Guthrie, the wife of legendary folk singer Woody Guthrie. Woody died from HD complications on October 3, 1967 when he was only 55 years old, but the Guthrie family legacy lives on at HDSA to this day.
Across the United States, HDSA currently supports: • More than 50 volunteer-led Chapters & Affiliates • 50 Centers of Excellence • 70 Social Workers • 170 Support Groups
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 approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
Many describe the symptoms of HD as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
HD Symptoms include: • Personality changes, mood swings and depression • Forgetfulness and impaired judgment • Unsteady gait and involuntary movements (chorea) • Slurred speech and difficulty in swallowing
HDSA is a 501(c)3 not-for-profit organization recognized as a charity in good standing by the IRS(EIN: 133349872) 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.
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