NTSAD Association

CONTACT:

2001 Beacon St. Suite 204
Brighton, MA 02135
800-906-8723
www.ntsad.org

Jayne Gershkowitz, Executive Director

DESCRIPTION:

NTSAD exemplifies how philanthropy can empower a small but committed group of volunteers and medical professionals, even on a modest operating budget (only $250,000).

Tay-Sachs is a fatal genetic disorder in children that causes progressive destruction of the central nervous system; there is no treatment or cure. Children with Tay-Sachs disease gradually become blind, deaf, and unable to swallow and digest food. Tay-Sachs inevitably claims too many tender lives, usually by the age of five.

As a recessive genetic disorder, both parents must carry the Tay-Sachs gene to conceive a child affected with it. Though it is fully preventable through appropriate screening, learning that prevention has not occurred is devastating to parents.

In 1956 a small group of such parents came together around the one sad fact that all their children were affected by Tay-Sachs or a related genetic disorder. They formed the National Tay-Sachs and Allied Diseases Association (NTSAD) to pioneer public and professional education, carrier screening, laboratory quality-control programs, research, and advocacy, to prevent Tay-Sachs disease.

(1998: HUMAN SERVICES: Health and Aging: Medical Research)