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 Epidermolysis Bullosa. 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 adding The Joseph Family, whose son, Brandon, was born with RDEB in 2003, to its Board of Directors and opening Administrative offices in Los Angeles. 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.
To date, The Joseph Family has helped raise over 5 million for research.
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 at less than 1% of incoming donations so that a full 99% of contributions can go directly to our research programs.
More information available at http://www.ebmrf.org/