Toco Hill Resident Earns Community Hero Award for Genetics Work

Few among us know their mission in life at the age of four. Eden Gold’s father has already identified hers.

"Eden is saving lives," Toco Hill resident Randy Gold said. "If that’s what she’s here to do, then there’s no more noble a life than that."

At about 18 months of age, Eden was diagnosed with mucolipidosis type IV, an inherited disorder characterized by delayed development of mental and motor skills and progressive vision loss. The disorder estimated to occur in one in 40,000 people and about 70 percent of affected individuals have Ashkenazi (Eastern European) Jewish ancestry, according to Genetics Home Reference, a service of the U.S. National Library of Medicine.

Gold and his wife, Caroline, have a son, Natanel, almost six, who is not affected by mucolipidosis type IV.

After gathering their thoughts following Eden’s diagnosis, the Golds not only sought the best medical care for their daughter but also founded Atlanta Jewish Gene Screen, an awareness and community screening campaign dedicated to building awareness among doctors, rabbis and the community about the genetic diseases affecting Ashkenazi Jews; the importance of genetic counseling and screening; the availability of preconception screening for all 19 preventable and many life-threatening disorders; and the need to update screening prior to each pregnancy.

The gene screen program is spearheaded by the Victor Center for the Prevention of Jewish Genetic Diseases at Albert Einstein Medical Center in Philadelphia and funded by The Marcus Foundation. Community screenings are hosted in metro Atlanta throughout the year.

Randy Gold was recently named the 2011 Jewish Community Hero of the Year by the Jewish Federations of North America. (Award rules did not allow couples to be nominated.) The honor came with a $25,000 grant for the gene screen program.

On Feb. 16, the gene screen will hold its first community awareness event, "It’s In Your Genes," at the Georgia Aquarium. The evening will feature a jean fashion show with styles from Bill Hallman, Raw Denim and Tootsies boutiques and Izzy Maternity. Featured celebrities will be Atlantan Eli Kirshtein from Bravo’s Top Chef, and Jordan Pious, co-winner of The Amazing Race in season 16 on CBS.

The event is, foremost, an educational opportunity to learn more about the need for screening for the prevention of Jewish genetic diseases. "It’s In Your Genes" is open to the entire community.

"The more people know about this, the more awareness there is," said gene screen project manager Nancy Citron, pointing out that the non-Jewish population can help by spreading the word about screening to their Jewish friends.

The Golds don’t think of themselves as heroes, but they are grateful for the attention the program has received since Randy Gold was named community hero of the year. When he was nominated "we realized how important this could be in getting the word out," he said.

Gold was surrounded by his wife and children at his office when Jewish Federation of Greater Atlanta President Robert Arogeti presented him with a check representing the grant that came with the honor.

"This was a nice thing for our family, for my kids to understand the importance of taking a tragedy and turning it into a life-saving venture," Gold said. "It was a fantastic feeling to know that the work we’re doing to save lives touched so many [award competition] voters and judges."

Media coverage of the award has created a bump in the number of AJGS inquiries.

"I have gotten calls and emails from all over the country asking for screening information, requesting Jewish Gene Screen create a program in other cities, and for countless media interviews as people realize there is a real need for awareness about the need for screening for the 19 known preventable Jewish genetic diseases," Gold said.

Community screening for the 19 preventable Jewish genetic diseases is currently only available in Atlanta, but Gold, who speaks about the gene screen program wherever he is asked, hopes to see gene screens in 10 more cities this year.

“It’s In Your Genes” will be held 7:30pm, Thursday, Feb. 16, at the Georgia Aquarium Oceans Ballroom, 225 Baker St. NW, Atlanta. Tickets are $35, which includes open beer and wine bar (for those 21 and older) and hors d'oeuvres as well as the fashion event, DJ and dancing. VIP tickets are $75 and include free parking, access to a special lounge and private bar and reserved seating for the fashion show. For complete details and to purchase tickets, visit www.atlantajewishgenescreen.org.