About Team Butterfly
Team Butterfly was founded in 2012 to benefit those who are afflicted by Epidermolysis Bullosa (EB). Team Butterfly aims to raise much needed funds in order to progress the promising ongoing EB medical research for a cure, while also providing services and assistance to EB children, adults, and their families. EB is a rare genetic connective tissue disorder, that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB). Currently, there is no treatment or cure for this painful and life threatening disease. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. 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.
Team Butterfly was created by David Beiss, who has battled EB Simplex his entire life, when he was studying abroad in Israel at the age of 18. David created Team Butterfly in order to do his part for the EB community and to do what no other EB organization had done: foster the next wave of supporters, volunteers, and donors by reaching out to the younger generations. For that reason, David and Team Butterfly put an additional focus on creating programs and events that are specifically cultivated for college students and young professionals. In 2016, Team Butterfly partnered with the Dystrophic Epidermolysis Bullosa Research Association of America (debra of America), which since 1980 has provided all-inclusive support to the EB community, in order to better serve the EB community. Team Butterfly and Debra of America work together to create programs that raise money and awareness among the younger generation of supporters. For more information about EB and debra of America, please visit http://www.debra.org/
Since Team Butterfly’s inception in 2012, our goal has been to create an EB-free world. We have had over 250 supporters raise money and awareness as part of our teams in the Jerusalem Marathon in Israel, and Color Runs in New York and Baltimore, collectively raising over $200,000. In fact, at the 2014 Jerusalem Marathon, Half-Marathon, & 10k; Team Butterfly had over 115 runners participating on Race Day! Since Day One, our grassroots movement and foundation has worked tirelessly to achieve our goal of not only eradicating EB, but supporting those afflicted as well. However, we believe that this is only the beginning, our past success has motivated us to do more and aim higher. We look forward to introducing new programs and events that enable many more people to get involved, and raise more funds and awareness that will bring us one step closer to our ultimate goal. With your help, David, as well as other people affected by EB, can grow up to live full, healthy, and pain-free lives!