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Pilot Tay-sachs Program Announced

For the first time in the United States, Tay-Sachs carrier screening will be offered for the teenage population, in a pilot program beginning next month in Allentown, Pa. Some 200 teenagers, members of various Jewish youth groups in the Allentown Bethlehem/Easton area, will be tested to determine if they are carriers of Tay-Sachs disease, a fatal genetic illness which strikes infants primarily of Eastern European Jewish heritage. The testing will take place Aug. 18 from 6:30-8:30 p.m at the Allentown Jewish Community Center.

The testing is being sponsored by the National Tay-Sachs and Allied Diseases Association of Delaware Valley, through its Tay-Sachs Prevention Program, headquartered in Philadelphia. The Prevention Program will send its Belle and Sidney Baer Mobile Testing Unit into the Allentown community. For the past two years, this mobile laboratory has travelled throughout the Delaware Valley and surrounding areas, providing carrier screening for over 15,000 persons.

The youth group members, belonging to such organizations as Jewish Center Youth, B’nai B’rith Youth Organization and United Synagogue Youth, were selected for the pilot project because they have spent the last several years learning about and raising funds for Tay-Sachs programs.

Up until now, teenagers have been tested only for good cause–if they were planning to be married, for example. “It’s not that we didn’t want to test teenagers,” said Mrs. Irvin Toren, coordinator of the Allentown testing, “but we weren’t sure exactly how these youngsters would react psychologically if they indeed turned out to be carriers of the Tay-Sachs gene. These youth group members, however, have been through an intensive education program regarding Tay-Sachs, and probably know more about the disease than many medical personnel.”

The youth group members themselves requested the testing and are all enthusiastic about the upcoming screening. For this pilot program, testing will be limited to teenagers who are 16 years of age or older. Jewish adults from the Lehigh Valley area are also encouraged to be screened at the Allentown testing. “Even if a couple has completed their family, it is important that they be tested, as the results could have vital implications for other family members and for future generations,” Mrs. Toren said.

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