NATIONAL TAY-SACHS & ALLIED DISEASES Association of Delaware Valley

About NTSAD-DV

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TAY-SACHS HISTORY

National Tay-Sachs & Allied Disease Association of Delaware Valley (NTSAD-DV) was established in 1969 through the efforts of 25 families determined to stimulate awareness of Tay-Sachs disease among the local Jewish community, mobilize the community to raise money for Tay-Sachs research, and to provide information and support for families affected by this fatal childhood illness

NTSAD-DV implored more than six Philadelphia hospitals to sponsor free Tay-Sachs screening. In the end, Dr. Laird Jackson, then director of the Division of Medical Genetics, Thomas Jefferson University Hospital, was the only one to agree. Jackson agreed to head a community Tay-Sachs screening program if NTSAD-DV could come up with funding for equipment and technical staff. An agreement between NTSAD-DV and Thomas Jefferson University to establish a Tay-Sachs Prevention Program at the Hospital was signed in 1972. .

Between the signing of that agreement and the first community testing in November that same year, NTSAD-DV not only raised the necessary funds, but also launched an aggressive public awareness/education campaign to alert the Jewish community to this unique opportunity. Their success can be measured by the nearly 3,000 folks who came to the first two community screenings.

For the next 34 years, the hospital-based Tay-Sachs Prevention Program provided uninterrupted service to the Delaware Valley and beyond, and gained international stature for accurate carrier screening and prenatal diagnoses; as well as for knowledgeable, compassionate counseling of at-risk and affected families. It was the only lab in the Delaware Valley to be designated a Tay-Sachs Quality Control Lab by the Tay-Sachs International Laboratory.

By the fall of 1995, the Thomas Jefferson Program was one of only a handful or places in the world to offer carrier screening and prenatal diagnosis for a second allied disease, Canavan disease.

The coordinated and combined services of NTSAD-DV and the Thomas Jefferson Tay-Sachs Prevention Program resulted in more than 100,000 individuals screened for Tay-Sachs disease and thousands of individuals for Canavan disease.

Unfortunately, Thomas Jefferson University made a decision in June 2006 to close the Tay-Sachs Prevention Program. However, NTSAD-DV remains committed to providing reliable screening for Tay-Sachs and Canavan diseases. Toward that end, we have initiated a new partnership with the Victor Centers for Jewish Genetic Diseases at Albert Einstein Medical Center. For more information about this partnership and our free screening program see “Where Can I get screened”.