(Pictured: Members of the Philadelphia Hurling and Camogie Team)

If you have Irish heritage but you don’t know about Tay-Sachs disease—and more to the point, if you haven’t been screened for it—then the Philadelphia Gaelic Athletic Association and Einstein Healthcare Network want to make it easy. You can learn more about this devastating genetic disease that affects children, and be screened on the spot during an afternoon of traditional Irish sports at the Philly GAA field in Pottstown, Pa. on Sunday, August 7, from 2-4PM.

Tay-Sachs is a severe neurodegenerative disease. Babies born with Tay-Sachs appear to develop normally after birth, but at about 4 to 6 months they start to lose skills. The disease progressively destroys nerve cells in the brain and spinal cord. Children born with Tay-Sachs usually don’t survive past their 5^th birthday.   Tay-Sachs is an inherited disease that only occurs when both parents carry a change in the Tay-Sachs gene and each parent transmits the altered gene to their child. Carriers show no outward sign and can only be identified through carrier screening (blood test). The gene can remain hidden in a family for decades, surfacing unexpectedly and tragically with the birth of an affected child.

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Einstein Medical Center Philadelphia 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 and culture. The festival is being held at the Irish Cultural Centre of New England, 200 New Boston Drive in Canton, Mass.

(Amybeth Weaver, Einstein genetic counselor, right)

The screenings, which will be held from 1 to 3 p.m., 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. (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 irish@tay-sachs.org, 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.

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Twins Jacob Nathan and Ryland Nathan Harney were smaller than the average sack of sugar when they were born at 33 weeks on December 17 last year. But they were healthy: Ten fingers and 10 toes each, healthy wails, and, most important, no wayward gene mutation of the type that cost their older brother Nathan his life when he was only 4.

Nathan Harney, the first child of Aaron and Kathryn Harney of Downingtown, was diagnosed at 14 months with Tay-Sachs Disease, a rare and lethal inherited neurological disorder largely associated with Ashkenazi (central or eastern European) Jews. But the Harneys aren’t Jewish. Kathryn Harney is Irish and German, her husband, Irish and Italian. But through their work with a researcher at Einstein Healthcare Network, they—and Nathan—have become the new face of a devastating disease that seems to also single out the Irish and people with French Canadian ancestry. (It’s also more common in groups where there’s more intermarriage, like the Amish.)

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