The students at Yeshivat Torat Shraga in Jerusalem spend most of their time learning Gemara. But they are also learning about Epidermolysis Bullosa (EB), a rare and painful skin disease afflicting David Beiss, a boy who attended the yeshiva last year, and about 25,000 people world-wide.
Beiss, a resident of West Hempstead, NY, learned at the yeshiva for two years. While he was there, he created Team Butterfly, a group of students running together in the Jerusalem Marathon to raise money for the Jackson Gabriel Silver Foundation (JGSF), an organization started by parents of a child born with EB to fund research for a cure. The Team has continued and grown even though Beiss is back in the U.S. Beiss, 20, is now a student at Yeshiva University and coordinates Team Butterfly from home. He has recruited one student from each yeshiva and seminary in the Jerusalem area to serve as a captain who in turn recruits other students to participate. The Marathon takes place Friday, March 21.
This year, Judah Cohen of Englewood and 45 other students from Torat Shraga are running in Team Butterfly. Each participant commits to raising $600. Cohen has raised $400 so far and said the team total is now more than $45,000. Cohen said he is happy to help a fellow Shraga alum.
“My madrich approached me and spoke to me about the marathon and the organization and it sounded like a great cause and opportunity to have an amazing experience,” Cohen said. He said the yeshiva has given the team a coach to help them, and they devote part of their very limited spare time at lunch, dinner and after night seder to train. Cohen said most of his teammates are doing the 10k, but some are doing the half and full marathons.
Beiss said ten years ago when the Silver Foundation began, there was no research for EB, but there are five or six different types going on now. “Significant progress is being made with protein and gene therapies and clinical trials,” he said.
EB is a group of blistering disorders caused by a lack a protein that binds each of the layers of the skin together, so that the slightest movement, contact or friction of the skin can tear it apart, blister or shear it off the body. Beiss said his case is not as severe as others. “I use a wheelchair and it’s a struggle every day. But some children don’t live because of the infections they get.”
Beiss won’t be participating in the marathon this year, but he’ll be there; he leaves for Israel next week. For more information about Team Butterfly, visit http://teambutterfly.org
Cohen is accepting donations on his fundraising page: http://www.stayclassy.org/fundraise?fcid=296053
By Bracha Schwartz