About
About Huntington's Disease
Huntington’s Disease (HD) is an inherited, progressive degenerative brain disorder that results in a loss of both mental faculties and physical control. Symptoms usually appear in an individual between 30-50 years of age and progress over a 10 to 25 year period. HD affects the individual’s ability to think, speak and walk. Ultimately, the weakened individual succumbs to pneumonia, heart failure or other complications.
Presently, there is no effective treatment or cure. Although medications can relieve some symptoms in certain individuals, research has yet to find a means of conquering or even slowing the deadly progression of HD. Approximately 30,000 Americans have HD and over 150,000 more are at risk of inheriting it from a parent. Once thought of as a rare disease, HD is now considered to be one of the more common hereditary diseases.
About HDSA
Huntington’s Disease Society of America (HDSA) is a national voluntary non-profit health organization dedicated to finding a cure for Huntington’s Disease while providing support and services for those living with HD and their families. Founded in 1967, HDSA promotes and supports both basic and clinical HD research, aids families throughout the continuum of HD and educates families, the public and healthcare professionals about this devastating disease. Over the years, HDSA has evolved into a network of over 29 chapters and 21 Centers of Excellence. HDSA is a volunteer based non-profit organization and the only non-profit health organization to be given an A+ rating by the American Institute of Philanthropy.
About HDSA St. Louis Chapter
The HDSA St. Louis Chapter was founded in 1960 to serve HD families throughout the St. Louis metropolitan area and surrounding areas. The chapter has grown from a small group of St. Louis families to a regional organization led by a volunteer board of directors.
The HDSA St. Louis Chapter is a local health agency in the region that provides care for people with HD and their families. The chapter provides information and referral, assistance in coping and opportunities for advocacy and fundraising for people with HD and their families.
St. Louis Chapter’s volunteer opportunities include: office support, education, advocacy, fundraising, special events, serving on the Board of Directors, practicum opportunities and much more.
St. Louis Chapter Board of Directors
- Mark Davis — President
- Anne Diab — Treasurer
- Karen Babb — Secretary
- Jane Davis — Member
- John Ryan— Member
- Michael Brown — Member
- Bassel Diab — Member
- Brigid Fernandez — Member
- Stacey Barton, MSW, LCSW — Medical Advisor to the HD Board of Directors, Social Worker at the HDSA Center of Excellence Washington University School of Medicine
- Mary Eschmann, M.A., L.P.C — HDSA Staff, St. Louis Support Group
- Peggy Cribbin — HDSA Staff, St. Louis Chapter Director
About HDSA St. Louis Mission
The St. Louis Chapter of HDSA has pledged to support and uphold the mission of the national organization, which is to:
- Promote and support research on HD aimed at providing effective treatment and eradicating the disease
- Assist people and families affected by HD in coping with problems presented by the disease
- Educate families, the public and health professionals about HD
The HDSA St. Louis Chapter is committed to assisting families by providing the best services available