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Dear Family & Friends,
As many of you may know, I am spending the year studying in Israel at Yeshivat Hakotel. This year is all about personal growth, maturation, understanding more about Judaism and spirituality, and of course, Chesed, helping others. I have decided that giving to others and truly trying to make a difference will be a focus for me this year. For that reason, I recently registered to run in the Jerusalem Marathon, Half-Marathon, 10k, & 5k, taking place on March 17th, 2017 as a part of Team Butterfly. I personally will be running the half marathon (13.1 miles) in hope of helping the very important cause. Let me tell you about Team Butterfly, Epidermolysis Bullosa (EB), The Worst Disease You Never Heard Of, and the cause that I care deeply about.
Team Butterfly, http://debra.convio.net/site/TR?fr_id=1180&pg=entry, is a charity group whose mission is to create an EB-free world by funding EB medical research to find a cure and assisting afflicted individuals and their families. To achieve its goal, Team Butterfly is partnered with Debra of America, (http://www.debra.org,) the only U.S. non-profit dedicated to funding EB research and providing services to the EB community.
EB is a debilitating and devastating genetic disorder that affects a child from birth. EB is defined as a group of diseases characterized by blister formation after minor trauma to the skin. A child who suffers from EB lacks a critical protein that binds his or her layers of skin together. This protein acts as the velcro that attaches one layer of his or her skin to the other. Without this velcro, when this child moves, his or her skin slides apart, blisters and shears off leading to severe pain, disfigurement, and in too many cases, a premature death. My brother and I have a close friend who suffers from this disease, and it makes the cause that much more personal and meaningful to me.
Plainly speaking, the more funds we raise, the more research and services that can be funded and the more lives that can be saved. To beat EB, we must rally our communities to spread awareness and recruit those willing to help. Every donation brings us one step closer to enabling a child with EB to live a full and pain-free life.
Please support this cause by clicking the link below and making a tax-deductible donation through my personal fundraising page. The process is fast, easy, and secure. Even a small donation will help me achieve my goal of $1,000.
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