Founder of gene-screening project wins Jewish Community Heroes Award





(JTA) — The third annual Jewish Community Heroes Award was given to Randy Gold of Atlanta for his work creating the Atlanta Jewish Gene Screen.

Gold was chosen for the award, which was given by the Jewish Federations of North America, by a panel of judges that included founder Ami Dar, television actress Mayim Bialik and Forward editor Jane Eisner. He had received nearly 9,000 online votes among the 240,000 cast to reach the semifinals before going before the panel.

Jewish Gene Screen works to educate, doctors, rabbis and community members of testing for Jewish genetic diseases. It has held events for Jewish singles, put brochures on the seats of every synagogue, placed prominent billboards and put posters in Starbucks.

According to the nomination for the Community Heroes Award, screening in Atlanta has increased by 400 percent. Eventually the organization hopes to make screening a standard medical practice for Jewish couples worldwide.

Gold, the chief operations officer at an accounting firm, founded Jewish Gene Screen with his wife, Caroline, in 2010 after their second child, Eden, was diagnosed at 18 months with Mucolipidosis Type IV, a genetic disease that disproportionately affects Ashkenazi Jews.

The Golds’ doctors had tested for only eight diseases, unaware of  the full complement of diseases to which Ashkenazi Jews are susceptible. One in five Ashkenazi Jews is a carrier for at least one of 11 genetic diseases for which screening was recommended in 2009. Today, some urge that Ashkenazim be screened to see if they are carriers for 19 genetic diseases.

“My daughter isn’t going to go to kindergarten, college, walk down the aisle or have kids of her own; we deal with that challenge every day," Gold told JTA in an interview prior to being informed that he had been chosen. "We don’t want anyone to go through what we did, and that’s why we created Jewish Gene Screen.”

Bialik said that “To pick a Hero among heroes is a huge responsibility and not an easy one. However, the work that Randy Gold has done is not only one of true menschkeit and selflessness; and it is not simply a matter of taking a tragedy and turning it upside down. What Randy has done is lay the groundwork for changing the way Jewish people understand and create future generations with our genetics. Randy is literally taking one life and turning it into generations and generations of simchas as numerous as the stars of the sky!”

Four runners-up also were chosen by the judges: Shana Erenberg of Chicago; Tessa Gerall of Houston; Hart Levine of New York; and Jenine Shwekey of New Jersey. Each will receive $1,000 for their causes.

According to Gold, the $25,000 award will go to furthering awareness and pay for screenings for the uninsured and underinsured. He told JTA that by this time next year the program hopes to expand to 10 more cities.

“A couple can have healthy children of their own even if they’re both carriers of the same mutation, why not have this knowledge before it’s too late?” he said.

Eden will be 4 in January and is working with physical therapists to learn to stand. She likely will never speak, and by the time she is a teenager she will be blind.

It is unlikely that she will live to early adulthood.

“Eden is saving lives,” said Gold. “And if that’s what she’s here to do, there is nothing more worthy than that.”

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