Epidermolysis Bullosa Medical Research Foundation
To fund medical research to find a cure for epidermolysis bullosa. Funds various research organization across the united states.
The Epidermolysis Bullosa Medical Research Foundation was established in 1991 by Gary & Lynn Fechser Anderson at the request of Dr. Eugene Bauer, then Professor and Chairman of the Department of Dermatology at The Stanford University School of Medicine. His research team was making exciting progress of their study of EB but needed additional funding to realize their goals . The Andersons lost two children, Chuck and Christine, to EB. Both children suffered deformities of the hands and feet, chronic anemia, malnutrition and growth retardation. Neither child ever weighed more than 84 pounds. The worst part of the disease was their constant pain. Towards the end of their lives, nearly 75% of their bodies were covered in open wounds. Relief came only when they were sedated to the point of sleep. Chuck died at age 27 of skin cancer, another side effect of the disease, and Christine died of heart failure at age 14.
In 2005, The EBMRF expanded its efforts by opening a Los Angeles chapter with the Joseph Family, whose son, Brandon, was born with RDEB in 2003. Both Paul and Andrea Joseph, and their immediate family, are committed to raising funds for ongoing research as well as awareness through the media and various fundraising programs. ”We expanded The EBMRF because we felt we had no other choice, we had to do SOMETHING, “ says Andrea. “Sitting by and watching your child suffer was not an option. We had to rally support for this little known and painful disorder.” To date, The Joseph Family has helped raise over $8 million for research and continues to put the spotlight on EB.
The EBMRF is unique in that the Foundation pays no salaries. All work, including executive, development and administrative*, is done on a volunteer basis. The Foundation prides itself on its efficiency, keeping operating costs to a minimum, so incoming contributions can go directly to our research programs.
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