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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 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.
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To find out more about EB and Stanford’s research, please visit: http://dermatology.stanford.edu/research/research.html
Photo credit: Douglas Peck
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Thank you. Thank you…I am one of six children. Five of us have EB simplex. It was not until my first son was born in 1978 with EB that my sister went to a local dermatologist seeking an answer as to what we have. I went on to have another son who was spared. My sisters first child was ok but her second a girl inherited the disorder. My son has two children . The first boy is five and fine, the second will be one in May and they just found his first blister on the big toe he uses to push off with when he crawls. My heart is breaking, I realize it is simplex but the days of foot soaks and breaking in shoes and limitations have risen from a place in my soul they were deeply buried. My son and his wife are stoic yet I know what they are feeling inside. I know what lies ahead and my heart is breaking for them too. They are vegan and Evan is being breast fed and I pray their advocacy on nutrition will be a great benefit to him. When I read about Heal EB I just felt the need to look into your works. Back in the 80’s we had a geniologist from Thomas Jefferson Hospital Angela Christiano test our family to find the gene which causes our mutation . It was found but funding stopped and we never went any further. When I read about the bullying part it brought me back to the shame I felt as a child, mother and adult about our rare disorder. God bless the children who have dystrophic, I can’t even imagine what their families are feeling. It’s people like you who create the awareness and funding begins again to research for a cure. I hope one day it can be found. Sincerely, Maryann, Bayonne NJ