How You Can Help
You can provide support for EB research and help patients like Michael.
In another step toward the possible development of a cure for Epidermolysis Bullosa (EB), a rare and life-threatening genetic skin disorder, the Southern California-based non-profit Heal EB, www.healeb.org, has made a donation of $50,000 in support of the research of Alfred Lane, MD, professor emeritus of dermatology and of pediatrics at the Stanford University School of Medicine. Lane leads clinical trials to develop new technologies to evaluate the skin of those with EB and decrease the need for skin biopsies. He also cares for children with EB at Lucile Packard Children’s Hospital Stanford, one of only a few hospitals in the nation with this expertise.
Trials currently underway include testing the use of stem cells to “grow” new skin that can be grafted onto the wounds of patients with EB. If a graft is successful, the body will produce anchoring fibrils, which help create a seamless connection between existing skin and graft. Another sign of progress is the presence of collagen, a structural protein found in connective tissue, at the base of the graft. Throughout the trials, the Food and Drug Administration (FDA) requires the team to track the treatment’s effectiveness, which often requires painful biopsies of the treated areas of the skin.
With the funding from Heal EB, Lane’s team will be working to develop a measuring tool that is less invasive and less painful than biopsies and that limits the surface area needed to assess the effectiveness of the approach being tested in the clinical trial.
Heather Fullmer, co-founder of Heal EB, a nurse, and the mother of a young child living with the disease, said, “Funding a device that is less traumatic is a priority for us. With the development of a measuring device, clinicians will have a more reliable and accurate way of measuring the treatment’s effectiveness, without having to induce so much trauma to the skin’s surface. Currently, multiple measurements are needed throughout the trial which have a huge impact on children with EB. We are honored to be a part of developing a device that will help expedite these clinical trials.”
Jill Vedder, COO of Heal EB, added that she and her husband, Eddie Vedder, lead singer of the band Pearl Jam, are proud to serve on the board of the Heal EB foundation. Their connection to the Fullmers’ child inspires their work to improve the lives of children worldwide with EB.
“Watching the impacts of this disease on their young son, and witnessing his incredible strength and resilience, motivates us every day to work toward funding and finding a cure,” Vedder said.
The Heal EB gift was made possible by a benefit event held in Malibu last fall. Prior to this gift, Heal EB contributed $95,000 to Lane’s gene transfer trials in 2013 from funds raised in the organization’s first year.
Become a Champion for Children like the Vedders, and plan your fundraising event today!