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RESEARCH
COLLABORATION SPOTLIGHT
Select Honors and Publications*
EB iPS Cell Consortium funders and members (left to right): Dr. Angela Christian from Columbia University Medical Center, EBRP co-founder Heather Fullmer, EB Medical Research Foundation CFO Paul Joseph, Dr. Anthony Oro from Stanford University School of Medicine, Dr. Dennis Roop from the University of Colorado and EBRP co-founder Alex Silver
The Epidermolysis Bullosa (EB) iPS Cell Consortium was established on May 1, 2016, to fight the rare and debilitating genetic skin blistering disease. The consortium includes research teams from the University of Colorado Anschutz Medical Campus, Stanford University School of Medicine and Columbia University Medical Center.
EB affects thousands across the U.S. and worldwide, and is characterized by chronic skin wounds similar in property to thermal burns and indistinguishable from burns induced by chemical agents such as mustard gas. Many children afflicted with recessive dystrophic EB, one of the most painful and disfiguring forms of the condition, do not survive their teens after lives compromised by chronic, debilitating pain.
The consortium is jointly funded by the EB Research Partnership (EBRP) and the EB Medical Research Foundation (EBMRF). EBRP was cofounded by Jamie and Alex Silver and Heather and Ryan Fullmer, who have children diagnosed with EB, and by Jill and Eddie Vedder of Pearl Jam.
EBRP is the largest nonprofit dedicated to funding research aimed at treating and ultimately curing the disease. Using a venture philanthropy model, EBRP takes concepts from venture capital investing and applies them toward achieving philanthropic goals. Notably, when the partnership makes a traditional donation to a research project, they retain the added upside of generating a recurring donation stream if the therapy or product is commercially successful. This revenue is then used to fund additional EB research. EBMRF is currently directed by Paul and Andrea Joseph, who also have a son with EB.
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