A ‘Butterfly’ on Jerusalem stone

A ‘Butterfly’ on Jerusalem stone

Rare disaease sends teens running for a cure

From left, Yoni Levine, Joey Liberman, David Beiss, Yosef Grosser Photos courtesy Team Butterfly

The skin on his feet is fragile as a butterfly’s wings. That, however, will not stop 18-year-old David Beiss from running the 10-kilometer route of the March 16 Jerusalem Marathon.

Beiss has recruited 42 other teenagers spending their post-high-school year in Israel to run together as Team Butterfly (http://bit.ly/js-bfly), including several from Bergen County. Each has committed to raising at least $600 toward researching a cure for epidermolysis bullosa (EB), the rare and serious blistering disorder that keeps Beiss in a wheelchair most of the time.

“I will not be able to walk for two weeks afterward, because the soles of my feet are very sensitive,” Beiss admits. “But I don’t let EB take over what I do.”

A resident of West Hempstead, N.Y., Beiss organized Team Butterfly on behalf of the Jackson Gabriel Silver Foundation (www.jgsf.org) established by Alex and Jamie Silver three years after their son Jackson was born with the disease in 2007.

Jackson Gabriel Silver was born in 2007 with epidermolysis bullosa (EB), a rare and serious blistering disorder that, in its severest form, can cause death by age 15. Runners in next week’s Jerusalem Marathon will raise money to help find a cure.

The Manhattan couple discovered that Jackson had the devastating condition – which is caused by the absence of critical proteins that bind the layers of skin together – when a small bandage removed after a routine heel prick in the hospital nursery took off all the surrounding skin.

“We got an email from David last year telling us that he has been involved with marathon events for other causes, and that since he himself has EB, it’s always been his dream to raise money for EB through a marathon,” says Cresskill native Jamie Silver.

“He got in touch in the fall and said he was doing his year in Israel now, the second year of the Jerusalem Marathon. He wanted to put together a team of peers – kids from the U.S., Canada, and Australia, some he’s known for many years. He and I thought if we could get 15 people, it would be amazing.”

The word spread among the yeshivah and seminary crowds, and now some 40 Team Butterfly members have raised more than $32,000 worth of sponsor pledges. Beiss and Silver will coordinate a pre-marathon dinner and post-marathon brunch for the runners.

“I never did a marathon, but I thought, why not now?” says Jonathan (Yoni) Levine, a Teaneck graduate of Torah Academy of Bergen County. Until he met Beiss at the Torat Shraga yeshivah this year, he had never heard of EB, which in its most severe forms can cause death by age 15 and trigger an aggressive, painful and fatal form of skin cancer. As of March 5, Levine’s pledges totaled $2,283.

“I’ve been running around Jerusalem. I’ll keep on moving until I’m in good enough shape to finish the half marathon,” says the son of Jeff and Sheryl Levine.

The hilly terrain makes the Holy City difficult for runners. “It’s not so easy,” he concedes, “but it’s also very cool to run through so much history for such a great cause.”

Teaneck residents Joseph Grosser, Shira Westrich, and Joey Liberman are also among the Team Butterfly runners, as is Aliza Selter of Rockland County, a graduate of The Frisch School in Paramus.

Selter will do the 10K. “I love running, and I wanted to do the Jerusalem Marathon,” she says. “David is a good friend of mine. When he asked me, I just knew I’d run for him. I had done a bike marathon for Alyn [Pediatric Rehab Center in Jerusalem] in October, so it was a tough decision to solicit money again from friends and family, but I’m really passionate about this.”

“The students running for Team Butterfly each told me a bit about themselves, and many had never heard of EB before they met David,” says Silver. “As a parent of someone with this disease, to be working with him is so inspiring.”

Two days after the Jerusalem event, runners for Team JGSF will take part in the New York City Half-Marathon on behalf of EB research. “It’ll be a pretty amazing weekend,” says Silver. “Runners’ feet hurt after half marathon, but it’s nothing compared to what kids with EB experience after walking half a block.”

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