Huntington's Disease Society Of America-CT Chapter

Cause Area

  • Advocacy & Human Rights
  • Board Development
  • Crisis Support
  • Health & Medicine


101 Deer Run DriveColchester, CT 06415 United States

Organization Information

Mission Statement

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 41,000 people diagnosed with HD and the 250,000 at-risk in the United States. Among the catalog of resources made possible by the organization, HDSA supports 57 Centers of Excellence at major medical facilities and 11 partner sites throughout the U.S., funds research into the biology of the disease to facilitate the development of treatments and cures, hosts more than 100 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. The Society is comprised of 54 local chapters and affiliates across the country with its headquarters in New York City.


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by Susan M. from Colchester, CT (Administrator for this Organization) (September 14, 2011)
This is a grass-roots volunteer driven organization that is working together internationally to raise awareness, raise funds for the cure of Huntington's disease and advocate for those families affected by the disease. There are no major celebrities at this time who are spokespeople for the organization such as Michael J. Fox is for Parkinson's disease. The more volunteers that help in accomplishing the goals and mission of the organization, the better chance of achieving the goal of eradicating this disease in our lifetime. Presently, this hereditary degenerative brain disease has no cure and it is fatal. There are no survivors. It affects all ages, nationalities, ethnicities and genders. Research for Huntington's disease also helps with other neurological diseases. I feel proud to be helping to make a difference in these families' lives.

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