Welcome to My Personal Page
As many of you may know, I am spending the year studying in Israel at Machon Maayan. This year is all about personal growth, maturation, understanding more about Judaism and spirituality, and of course, helping others. I have decided that giving to others and truly trying to make a difference will be a big focus for me this year. For that reason, I have signed up to run in the Jerusalem Marathon which will be taking place on March 17th, 2017, as a part of Team Butterfly. Let me tell you about Team Butterfly, Epidermolysis Bullosa (EB)– “The Worst Disease You’ve Never Heard Of”, and the cause that I care deeply about.
Team Butterfly (teambutterfly.org) is a charity group whose mission is to create an EB-free world by funding EB medical research to find a cure & assisting afflicted individuals and their families. To achieve its goal, Team Butterfly is partnered with debra of America (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 extremely rare – a child has 1 in 50,000 chance of being born with EB – and is not specific to any race, ethnicity or gender. 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. Children with more severe forms of EB can have a 60% cumulative risk of dying by age 15 and nearly a 100% chance of developing an aggressive, painful and fatal form of skin cancer over the course of his or her shortened life.
To visualize and understand what life is like for an EB child and their family, I urge you to click here and then watch and share debra of America’s incredibly powerful 1 minute video about EB.
Our team is called ‘Team Butterfly’ since those born with EB are often called “Butterfly Children” because as the analogy goes, their skin is as fragile as the wings of a butterfly. Unfortunately, last year the Jewish EB community was hit hard & close to home with the passing of their own ‘Butterfly Child’, Yisrael Simcha Possick. To honor the life, courage, & strength of Yisrael Simcha, I and the rest of Team Butterfly will be running & raising money in his memory.
Curing EB is a race against a clock moving at warp speed. Plainly speaking, the more funds we raise, the more research & 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. I ask you to help me honor Yisrael Simcha’s memory and support Team Butterfly by making a donation to this worthy cause and sharing this letter with your family, friends, and colleagues.
I am running to help save lives and find a cure. Will you answer the call and join me in the effort to put an end to EB? With YOUR help, "Butterfly Children" worldwide will have a chance to live the way every child deserves to live: pain-free. Please support this cause by clicking the link below & 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.
Cash and check donations can be sent to the debra of America office at 75 Broad Street, Suite 300, New York, NY 10004. Please make checks payable to “debra of America” and put “Team Butterfly, Yocheved Sharaby” on the memo line. If you have any questions, please do not hesitate to contact me at firstname.lastname@example.org or contact debra of America at email@example.com.
Twenty years ago, a child born with EB had little hope. Within the foreseeable future, and even sooner with your support, EB could be a treatable and curable illness. On behalf of the ‘Butterfly Children’ and their families, thank you for your support and generosity.
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