NTSAD-DV is a non-profit voluntary health agency dedicated to the prevention and ultimate elimination of Tay-Sachs disease, Canavan disease and related lysosomal storage diseases (the allied diseases). NTSAD-DV's goal is to make certain all adults who may be at-risk for the Tay-Sachs or Canavan gene learn about these diseases; have carrier screening available and accessible to them, and are fully prepared to make informed decisions for a healthy family. NTSAD-DV strives to achieve this goal through: sponsoring and arranging community testings; programs of professional education for health care providers; aggressive public awareness and information campaigns; maintenance of a repository of specialized knowledge; serving as a referral network and resource center for affected families and couples at-risk; advocacy for prevention and research; and support for research. NTSAD-DV is funded through public and private foundation grants, corporate sponsorships and voluntary contributions. NTSAD-DV is governed by a volunteer board of directors that elects a president and vice president from its members, with counsel from a volunteer advisory board. Programs and services are implemented by board members, staff and participation of friends and supporters in the community. NTSAD-DV maintains an office for administrative purposes and currently has one full-time employee (an executive director) and contracts for the services of a public relations/education professional. TAY-SACHS HISTORY National Tay-Sachs & Allied Diseases 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; to mobilize the community to raise money for Tay-Sachs research, and to provide information and support for families affected by this fatal childhood illness. In 1971, a blood serum test to identify individuals who carry the gene that causes Tay-Sachs disease was perfected. The first community-based testing of adults most at-risk for this gene (i.e., the Jewish community) was held in the Washington-Baltimore area. Following the success of that screening, the primary focus of NTSAD-DV shifted to making Tay-Sachs screening available and accessible to the Delaware Valley Jewish community. NTSAD-DV implored more than six Philadelphia hospitals to sponsor free Tay-Sachs screening. In the end, Dr. Laird Jackson, 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 provided 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 the spring of 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 ensuing 25 years, the hospital-based Tay-Sachs Prevention Program has provided uninterrupted service to the Delaware Valley and beyond, and has gained international stature for accurate carrier screening and prenatal diagnoses; as well as for knowledgeable, compassionate counseling of at-risk and affected families. It is the only lab in the Delaware Valley designated a Tay-Sachs Quality Control Lab by the Tay-Sachs International Laboratory. QUALITY CONTROL PROGRAM From 1972-1982, all testing through the Thomas Jefferson Prevention Program was free and funded by NTSAD-DV. Student testing has always been, and still is, free, underwritten by the organization. Committed to its early goal of making screening available and accessible to our community, NTSAD-DV has provided ongoing financial support and advocacy for the Thomas Jefferson Tay-Sachs Program, and numerous other services to promote prevention. (see Services) In the fall of 1995, the Thomas Jefferson Program began to offer carrier screening and prenatal diagnosis for a second allied disease, Canavan disease. Canavan testing is available at only a handful of facilities in the country. To date, the coordinated and combined services of NTSAD-DV and the Thomas Jefferson Tay-Sachs Prevention Program have resulted in more than 100,000 individuals screened for Tay-Sachs.