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. The Chapter has a close working
relationship with the HDSA Center of Excellence at the University of Rochester,
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.
Huntington's Disease (HD) is an inherited brain
disorder which results in the loss of both mental capability and physical control.
Over a period of 10 to 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. While there is not a current cure for this disease,
researchers have made significant progress and are optimistic about future treatments.
Wish List
- monetary donations (for research and for annual HD Camp which provides recreational therapy)
- sponsorships for events
Volunteers Needed
Grant writing.
Fundraising.
Event volunteers: Amaryllis sales, annual run, annual bowling, golf tournament,
community walks.
Help coordinate event mailings (design, interface with printer, arrange logistics,
etc.)