• ORGANIZATION PROFILE
  • Huntington's Disease Society of America, Upstate New York Chapter Huntington's Disease Society of America, Upstate New York Ch...

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Mission Statement

The Upstate New York
Chapter of the Huntington's Disease Society of America was formed in the early
1970s to help local families cope with the devastating impact of the disease.
Our mailing list includes over 600 family members, friends, and professionals in
the Upstate New York area. The Chapter has a close working relationship with the
HDSA Center of Excellence at the University of Rochester, which is a
comprehensive care center where HD families are able to obtain medical care,
counseling, access to physical and occupational therapy, genetic testing, and
other elements of care. Through the National HDSA programs, the Upstate New York
Chapter also supports the research being done at the University of Rochester and
around the country .

Description

Huntington's Disease (HD) is an inherited brain disorder which results in the loss of both mental capability and physical control. Over a period 10-20 years the person with HD progressively loses the ability to think, speak and walk. Huntington's Disease transcends the boundaries of race, sex and ethnic group.

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Reviews

Average Review 1 reviews

Would you recommend Huntington's Disease Society of America, Upstate New York Chapter?

by Ricky W. (September 15, 2014)
Reason I would recommend this Oganization to friend or colleague ..Is because I had 5 family memebers who died of Huntingstons Disease, from ages 38 to 54. I would like to volunteer my time with these HD individuals in the Rochester NY area if you could lead me to someone to speak to about that . Would be absolutely wonderful :)
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