Agency Details:

Share

Huntington's Disease Society Of America- New Jersey Chapter

The Huntington’s Disease Society of America is a national, voluntary health organization dedicated to improving the lives of people with Huntington’s Disease and their families, to promote and support research and medical efforts to eradicate Huntington’s Disease, to assist people and families affected by Huntington’s Disease to cope with the problems presented by the disease, and to educate the public and health professionals about Huntington’s Disease.

Description:
The Huntington’s Disease Society of America is the largest 501(c)(3) non-profit volunteer organization dedicated to improving the lives of everyone affected by Huntington’s Disease. Founded in 1968 by Marjorie Guthrie, wife of folk legend Woody Guthrie who lost his battle with HD, the Society works tirelessly to provide the family services, education, advocacy and research to provide help for today, hope for tomorrow to the more than 30,000 people diagnosed with HD in the United States. Notably, HDSA funds the HDSA Coalition for the Cure, a collaboration of 16 international researchers, as part of the HD Drug Research Pipeline, which develops potential therapies to treat and eventually cure HD; and HDSA also supports 21 Centers of Excellence at major medical facilities throughout the U.S., where people with HD and their families receive comprehensive medical, psychological and social services, in addition to physical and occupational therapy and genetic testing and counseling. The Society is comprised of 38 local chapters and affiliates across the country with its headquarters in New York City. Additionally, HDSA hosts more than 140 support groups for people with HD, their families, caregivers and people at-risk, and is the premiere resource on Huntington’s Disease for medical professionals and the general public.

History:
Forty one years ago, Woody Guthrie lost his battle with Huntington’s Disease. He was just 55 years old. While the world mourned the death of the legendary folk singer, little was known or understood about this devastating brain disease. Those affected by HD were often hidden away from the eyes of the community and families regarded the disorder with fear and shame. Woody himself spent much of the last 10 years of his life in and out of psychiatric wards where there was little personal care and no treatment of his symptoms.



After his death in 1967, his widow, Marjorie, vowed that it was time to DO something about HD. She began locally placing small ads asking families with the disease to contact her. From that first effort to reach out to families, the Committee to Combat Huntington’s Disease, the predecessor of what is today the Huntington’s Disease Society of America (HDSA), began.



Marjorie Guthrie fought for almost 10 years to convince researchers, clinicians and federal funding agencies, that HD and other neurological diseases affected millions of Americans and should be studied. In 1977, Congress released a landmark report that included the very first recommendations for research and care which became the cornerstone of HDSA’s commitment to the care and cure of HD. In 1986, the Huntington’s Disease Society of America was formed.



In the years since then, the HDSA has grown from a handful of volunteers to a national network of more than 36 volunteer-based chapters and affiliates, 12 regions, more than 150 support groups and 21 major medical facilities all collaborating to fulfill the mission of the Society. The New Jersey Chapter, formed in 1976 by a group of dedicated volunteers, is a part of this extensive network and remains the only voluntary health agency dedicated to helping individuals and families living with Huntington’s Disease in New Jersey.

Contact person: Vicki Hess, (phone), (email)

Office fax number: (973) 784-4966

Address:

230 Diamond Spring Rd. Denville, NJ 07834 (See a map)

Web Site: http://www.hdsanj.org

Last updated on June 21, 2010