Huntington's Disease Society of America- Pacific Southwest Region

About HDSA

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with Huntington’s disease and their families. 

What is Huntington’s Disease? 

Huntington’s disease is a rare, genetic, neurological disease with no cure. Today, there are 30,000 Americans diagnosed with HD and 250,000 at-risk of inheriting the disease. Every child of a parent with HD has a 50/50 chance of inheriting the expanded gene that causes the disease. If the child has not inherited this expanded gene, he or she will never develop the disease and cannot pass it on to their children.

HDSA Chapters & Affiliates

HDSA currently has 54 volunteer led Chapters and Affiliates across the United States with its headquarters in New York City. Chapters and Affiliates are tasked with organizing grassroots fundraising and awareness initiatives in their local communities to support HDSA’s mission. 

HDSA’s signature fundraising campaign is the Team Hope Walk program. Since its inception in 2007, Team Hope Walks have occurred in over 100 different cities and have raised over $4 million for HDSA. Celebration of Hope events are planned in over 20 communities along with nearly 300 annual fundraising and educational events raising millions of dollars across the country.

Centers of Excellence 

HDSA currently has 29 Centers of Excellence across the United States. The Centers of Excellence provide the team approach to Huntington's disease care and research. There you will find expert neurologists, psychiatrists, speech and swallowing specialists, occupational therapists, physical therapists, genetic counselors and other professionals to help you plan the best care program.

Social Workers & Support Groups 

HDSA currently has 40 Social Workers & 170 support groups across the United States working to provide valuable support to the HD community. HDSA social workers assist families with navigating HD by providing information, referrals, and by helping to start and maintain support groups.