BENEFITING: Childrens Cancer Research Fund
We are raising money to help find a cure for Epidermolysis Bullosa, or EB a rare skin disease that affects children from birth on. This disease causes severe blistering of the skin from any friction or rubbing and most children aflicted with this skin disorder are wrapped up like mummies to help protect their skin from sloughing off, leaving raw and painful open wounds that can lead to infection. The affects of this disease are not only limited to the surface of the skin but can also cause blistering and painful lacerations inside the body as well. There are varying degrees of severity of EB but all children who are afflicted live in almost constant pain from open wounds, eating and breathing problems, infections and many eventually develop a form of skin cancer. Right now there is a clinical study underway at the University of Minnesota that is using bone marrow transplantation to help target the missing genes that are causing the skin to be improperly "anchored" on the body and stem cells are actually helping the body to produce new skin cells which behave more like that of the healthy donor. There are a lot of dangerous side affects linked to the process of a bone marrow transplant for these children and many have died already from complications of the transplant alone. Funding will go directly to the University of Minnesota's research team to help them find a way to improve current treatment procedures and fund new research that will one day lead to a cure which will make it possible for all EB children to live a life free from this debilitating disease.