Huntington's Disease Society Of America-CT Affiliate

To raise awareness and funds for the care and cure of Huntington's disease. To provide education to the public and medical professionals about Huntington's disease. To provide support to those affected by Huntington's disease.

Description:
Huntington's Disease Society of America is the only national voluntary health agency that provides support and services to persons with Huntington's Disease and their families through a national/regional structure. It is committed to funding research that will lead to improved treatments and, ultimately, a cure. It supports 17 major Huntington's disease laboratories in North America and Europe through the Coalition for the Cure and provides 23 grants and fellowships to young investigators just starting out in the field of research.
It also leads in providing care for patients and their families at our 21 Centers of Excellence. It's 12 regions and 37 chapters and affiliates and 150+ support groups help educate the general public and healthcare professionals. This dedicated circle of people provides networking and information and creates fund raising opportunities through a wide range of exciting and worthwhile events nationwide.

The Huntington’s Disease Society of America is organized through a structure of 11 separate regions covering the continental United States. Through the support of Regional Directors and Regional Coordinators, the members of the chapters and affiliates within the region carry out various programs of support, education, outreach, advocacy and services. The Regional structure serves as a means to tie all the efforts from chapters and local affiliates to the national office. The Connecticut Affiliate is part of the New England Region.

History:
The Huntington's Disease Society of America was founded in 1967 by Marjorie Guthrie, widow of legendary folksinger Woody Guthrie, who succumbed to complications of Huntington's disease at the age of 55. The Connecticut Chapter was started in 1994 and advocated for legislation in 1997 for a state supported Huntington's disease clinic. This clinic is presently located at The University of Connecticut Health Center. Since Chapters and Affiliates are run primarily by volunteers, the Chapter became an Affiliate in 2006, due to the lack of recruitment of a volunteer board of directors. Since this time there has been an resurgence of grassroots effort to reestablish and reorganize the Chapter.

Contact people:

Susan McGann, President, (phone), (email) Charlotte Maher, Vice President, (phone), (email) Melinda Maher, Program Coordinator, (phone), (email)

Office fax number: (860) 267-0288

Address:

101 Deer Run Drive Colchester, CT 06415 (See a map)

Web Site: http://www.hdsa-ct.org

Directions:

Nearest Metro/Subway Stop: n/a,   Walk distance (in minutes): n/a   Nearest Bus Stop: n/a, n/a minute walk

Last updated on August 15, 2009