The Huntington's Disease Society of America (HDSA)

The Huntington's Disease Society of America (HDSA) is dedicated to:

Eradicating Huntington's Disease (HD) through research;
Assisting people and families affected by HD; and
Educating the public and health care professionals about the disease.

Huntington's Disease (HD) is an inherited, degenerative disease which results in an eventual loss of both mental and physical control. Over a period of 10-20 years, the person with HD progressively loses the ability to think, speak, and walk. Presently, there is no effective treatment for HD, although medications can give some partial relief for the symptoms. Each child of an affected parent has a 50/50 chance of inheriting the gene which causes HD. It is estimated that 1 in 8,000 people in the US have active cases of HD, and more than 1 in 1,500 are at risk for developing the disease.

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.

Upstate New York Chapter Programs:

Support/psychotherapy Groups
Information and Referral
Newsletter
Educational Programs
Speaker's Bureau
Research Support
Camp for Persons with HD

For more information please call 585-341-7400, or visit their website at www.hdsauny.com.

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