Charity wins over runners

More than 20,000 runners participated in the Jerusalem Marathon on March 1, completing a course that started at the Knesset and passed a number of important cultural landmarks, offering sweeping views of the city and, as the marathon’s Web site touts, “a run through history.”

For runners like L.A.-native Ben Sarto, however, there was more at stake than personal pride and a unique experience: Sarto ran as part of Team Butterfly, a group that used the race to raise money for research around a little-known condition called epidermolysis bullosa (EB). 

The condition causes skin to blister from even the slightest contact or friction. These blisters are extremely painful, often compared to second- or third-degree burns. EB is relatively rare — it occurs in approximately one out of every 20 million births — but its effects tend to be severe and debilitating.

Team Butterfly, which ran its first race last year in Jerusalem, is the joint effort of the Jackson Gabriel Silver Foundation and an EB sufferer named David Beiss. The foundation was created to raise awareness and money for EB research after a woman named Jamie Silver had a child named Jackson who was diagnosed with the disease shortly after his birth in 2008.

Although Beiss, of West Hempstead, N.Y., does have EB, very few of the runners he’s recruited over the last two years suffer from the condition. In fact, few knew of its existence before meeting Beiss or others connected to Team Butterfly.

“Just meeting someone with EB and hearing about how he lives his day to day life was the push to make me run,” said Celine Banafsheha, who went to YULA Girls High School in Los Angeles before heading to Jerusalem to study at the seminary Midreshet HaRova.

Ariel Rafe, an Angeleno studying abroad at Yeshivat Torat Shraga, was already thinking about doing a half marathon while she was in the city. It was the added bonus of being able to fundraise through Team Butterfly that convinced her to actually sign up.

Last year, Beiss decided to demonstrate one of his parents’ favorite maxims — that he could do anything as long as he put his mind to it, and didn’t give in. Despite the pain and blisters he knew he’d endure, Beiss ran almost a full 10k, getting through the first four miles surrounded by a team of eight friends who cheered him on. When the pain became overwhelming, those same friends “basically took turns carrying me on their backs,” he said. “It was pretty incredible.” This year, he says the number of runners on the team required too much attention for him to run the race.

Beiss’ run in 2012, combined with funds raised by other runners on Team Butterfly, totaled around $50,000. That money, along with other donations to the foundation, has already gone toward studies on gene and protein therapy treatments being done at University of Southern California, University of Minnesota and Stanford.

“When Jackson was diagnosed, we were told that clinical trials for these kinds of things were at least 15 years down the road, but now we’re looking at trials likely to start taking place in the next two years,” Silver said.

Beiss says that Team Butterfly collected just under $60,000 this year.

It was Beiss’ idea to create Team Butterfly; he had grown up involved with activism and fundraising related to various diseases, and he participated in numerous charity runs, usually using a wheelchair on most of the course and running only the last mile. When he heard about the Jackson Gabriel Silver Foundation, however, he was excited to get involved with a project he was connected to on a personal level.

He called Silver and proposed using participation in a race as a fundraiser; he chose Jerusalem as a location because he was studying abroad there as part of his coursework with Yeshiva University in New York. It didn’t hurt, too, that the Jerusalem marathon includes courses for half marathons and 10ks, allowing runners to choose their distance to suit their energy and enthusiasm.

This year, in addition to the Jerusalem marathon, there will be Team Butterfly runners at the New York marathon and half marathon, and participants ran in the Disney marathon in Florida this past January.

The way the cause caught on was a surprise, Silver said.

“We thought sure, maybe he’ll get 10 runners, and every little bit will help,” she said of those early conversations. But Beiss’ infectious energy and tenacious advertising efforts attracted more than four times that many participants to the first Team Butterfly run in Jerusalem last year. This year there were 84.

The fellowship of being part of a team with a specific, charitable goal helped runners feel connected to what they were doing, and got them through some of the tough parts of the race.

“There was so much unity on Team Butterfly, and during the run everyone was encouraging everyone to keep going,” Banafsheha said of her 10k run. “I felt as though the entire city of Jerusalem had stopped to come and cheer the marathon runners on. As I was running, seeing fellow Team Butterfly members in our matching team shirts gave me the spark to keep going.”

Sarto agreed: He and his running partner kept each other going with “support and encouragement” on the course, and he loved knowing he was part of a good cause at the end of the day as well.

The impact appears to have been a lasting one.

“I definitely plan on continuing to be involved in Team Butterfly,” Banafsheha remarked. “I think the race made me feel like I was so much more a part of the cause than I felt before, and I hope to run the marathon again next year. I’m really happy I was part of the marathon because I feel as though I built an even deeper connection with Team Butterfly, and in my own way I was able to play my part in helping the cause.”