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Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases

Free Screening for Irish Descendents

Free Tay-Sachs Disease Screenings for Irish at Irish Fest Boston

Child's hand reaching for a cloverSunday June 5
1:00 - 3:00pm
Irish Cultural Centre of New England
200 New Boston Drive
Canton Ma

Einstein Medical Center Philadelphia, located in Philadelphia, Pa is offering free Tay-Sachs disease screenings to those of Irish descent Sunday, June 5 at Irish Fest Boston—a two day festival (starting June 4) of Irish art & culture being held at the Irish Cultural Centre of New England at 200 New Boston Drive in Canton Ma. The screenings, which will be held from 1-3 pm  involve a simple blood test.

To be eligible, participants must be at least 18 years of age and have at least three grandparents of Irish descent.

Optionally, you can sign-up ahead of time for this screening by going online to http://irish-tay-sachs-study.eventbrite.com, sending an email to This email address is being protected from spambots. You need JavaScript enabled to view it., or by phone at 484-636-4197.

Tay-Sachs Disease is a fatal neurodegenerative disease that can be passed on to children when both parents are carriers of an altered gene. Babies born with Tay-Sachs disease appear normal at birth, and symptoms of the disease do not appear until the infants are about four to six months of age when they begin to lose previously attained skills, such as sitting up or rolling over. Children then gradually lose their sight, hearing and swallowing abilities. These children usually die by the age of five.

In the past, Tay-Sachs was often thought of as a Jewish genetic disorder due to its large presence among Ashkenazi Jews. But, cases of Tay-Sachs have been identified in the Irish population right here in Philadelphia over the last few years. That’s why Dr. Adele Schneider, director of clinical genetics at Einstein Medical Center Philadelphia and her team at Einstein are conducting a study to find out just how high the carrier rate is among people of Irish descent. The study,  the only one done in the Irish population since DNA testing for the gene mutation has been available,  aims to screen 1,000 people, and is funded by the Albert Einstein Society and the National Tay-Sachs & Allied Diseases Association of Delaware Valley.
If the carrier rate turns out to be high, then large –scale screening initiatives—like those conducted through the Victor Center for the Prevention of Jewish Genetic Diseases at Einstein and other facilities throughout the country—could identify carriers before they pass on the Tay-Sachs gene.

For more information about Tay-Sachs screening contact Amybeth Weaver, MS, CGC at 484-636-4197 or This email address is being protected from spambots. You need JavaScript enabled to view it..