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First off, thank you for taking a moment to allow Jill and I to present you with something we have worked on tirelessly for many years and are now seeing incredible results towards a cure. At this point in our venture we are very excited to share with you and others in the scientific and philanthropic communities a chance to participate in a unique gathering this October in Seattle. We have curated what looks to be a very powerful 3 days, October 22nd - 24th, to get some incredible people together, and learn about the cause we care so deeply about – EB Research Partnership (EBRP). There will be music, (a couple acoustic shows at the classic Benaroya Hall), some unique art to experience and the chance to meet with some of the leading doctors and researchers in the field, along with the heroic parents and patients who inspire us to work harder everyday. Epidermolysis Bullosa, or EB for short, is a brutal and life-threatening genetic skin disorder that affects kids from birth. While there are many causes we care about, EBRP is a place where we know we can make a tangible impact. We’re so proud of the progress the team has made, including the first ever FDA approved EB treatment. Our goal is to make EB history and create a blueprint that can cure thousands of other rare diseases. We hope you'll join us. With lots of love, gratitude & hope, Eddie & Jill Vedder
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Epidermolysis Bullosa (EB) is a devastating and life-threatening genetic skin disorder that affects children from birth. Individuals with EB lack critical proteins that bind the skin's two layers together, causing the skin to tear apart, blister, and shear off, leading to severe pain, disfigurement, and internal and external wounds that may never heal. The majority battling EB are children, as many don’t live long into adulthood. Children with EB are often called “Butterfly Children” because their skin is as fragile as the wings of a butterfly. With skin this fragile, everyday activities like eating, sleeping, walking and playing can become monumental tasks. Today, there are no cures for individuals battling EB, however, EB Research Partnership (EBRP) is dedicated to changing that. |
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Founded in 2010 by a group of dedicated parents, Jill Vedder, and Eddie Vedder of Pearl Jam, EB Research Partnership (EBRP) is the largest nonprofit funding research aimed at finding a cure for Epidermolysis Bullosa (EB).
Over the last decade, EBRP has made remarkable strides, including raising +$50M for life-saving research, contributing to a 20x growth in EB clinical trials, helping to fund the first-ever FDA approved topical gene therapy and treatment for EB families. |
EBRP ensures sustainable funding for future EB research through an innovative Venture Philanthropy Model. Instead of simply making grants, EBRP searches the globe to strengthen and accelerate the most promising research projects. These projects are vetted through EBRP’s world-class Scientific Advisory Board.In exchange for funding, EBRP takes a financial interest in the work of research institutions. When those projects succeed, the returns are reinvested back into other promising EB research initiatives that are also scalable across thousands of other rare diseases. Every dollar invested at EBRP is multiplied — potentially many times over.
EBRP’s Venture Philanthropy Model has been highlighted for its leadership by Harvard, Yale, MIT, the Milken Institute, and Stanford Social Innovation Review.
EBRP’s Venture Philanthropy Model has been highlighted for its leadership by Harvard, Yale, MIT, the Milken Institute, and Stanford Social Innovation Review.
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