Huntington's Disease Society of America
 | |
| Founded | 1967 |
|---|---|
| Focus | Research into Huntington's disease and support for affected people and their families |
| Location | |
Area served | USA |
Key people | Louise Vetter (CEO) |
| Website | http://www.hdsa.org |
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.
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. Many describe the symptoms of HD as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
HDSA History
HDSA was founded in 1968 by Marjorie Guthrie, the wife of legendary folk singer Woody Guthrie. Woody died from HD complications in 1967 when he was only 55 years old, but the Guthrie family legacy lives on at HDSA to this day.
HDSA Chapters & Affiliates
HDSA currently has 54 volunteer-led Chapters and Affiliates across the United States with its headquarters in New York City. Chapters and Affiliates are tasked with organizing grassroots fundraising and awareness initiatives in their local communities to support HDSA’s mission. HDSA’s signature fundraising campaign is the Team Hope Walk program. Since its inception in 2007, Team Hope Walks have occurred in more than 100 different cities and have raised more than $7 million for HDSA. Celebration of Hope events along with nearly 300 annual fundraising and educational events raise millions of dollars across the country.
HDSA Centers of Excellence
The HDSA Centers of Excellence provide an elite multidisciplinary approach to Huntington’s disease care and research. HDSA currently has 29 Centers of Excellence across the United States. At these world-class facilities, patients benefit from expert neurologists, psychiatrists, therapists, counselors and other professionals who have deep experience working with families affected by HD and who work collaboratively to help families plan the best HD care program throughout the course of the disease.
Social Workers & Support Groups
HDSA currently has 40 Social Workers & 170 support groups across the United States working to provide valuable support to the HD community. HDSA social workers assist families with navigating HD by providing information, referrals and by helping to start and maintain support groups.
HD Research
In 1993, after a ten year search that involved collaboration among the top HD researchers worldwide, the gene that causes HD was located. Since 1999, the HDSA has committed more than $18 million to fund research with the goal of finding effective treatments to slow Huntington’s disease. Our past research efforts have also helped increase the number of scientists working on HD and have shed light on many of the complex biological mechanisms involved in HD.
HDSA’s research strategy has a strong patient-centric approach. The largest research program, called the HD Human Biology Project, was launched in 2013. The goal of the program is to foster innovative research at the HDSA Centers of Excellence to better understand the biology of Huntington’s disease as it occurs in humans. The reason for this is that the most relevant scientific observations that will guide the research community in the hunt for effective therapies for HD will be those that are recorded in HD patients.
Work being done by HD researchers are of great value and are being used by scientists looking for answers to Alzheimer’s disease, Parkinson’s disease, ALS and many other neurodegenerative and genetic diseases.
Education
HDSA takes pride in being the premier organization dedicated to providing the most up-to-date and accurate information about Huntington’s disease. Through HDSA produced publications, online news updates and family stories, HDSA is the world’s leader in HD support and education.
Advocacy
It is because of our incredible advocates that HDSA has been able to successfully advance legislation and policy to improve the lives of HD families, including the passage of the Genetic Information Nondiscrimination Act (GINA), and having Adult Onset and Juvenile Onset HD be added to the Social Security Administration’s Compassionate Allowances List. Currently, our ever-growing network of dedicated advocates are working alongside HDSA towards the passage of the Huntington’s Disease Parity Act of 2015, a bill that will help people with HD access crucial disability and healthcare benefits that have been denied for decades.
National Youth Alliance
The National Youth Alliance (NYA) provides a support network for youth coping with Huntington’s disease in their lives. This wonderful program is in place to educate, engage and inspire young people and their families when dealing with HD and Juvenile HD.