Tom holland on ebrp and his connection to the cause
Tom Holland first learned about Epidermolysis Bullosa (EB) when his family created The Brothers Trust and he was introduced to EB Community members, some of whom are sadly no longer with us. EBRP is dedicated to its bold audacious goal of finding a cure for EB, so that no other child or family affected by EB has to suffer.
We’re so thankful for Tom Holland for helping us raise $11M over the last 4 years of Venture into Cures to fund research and accelerate treatments and cures for EB. Estimated to affect 500,000 around the world, EB is a group of rare, life-threatening skin diseases marked by fragile skin that easily breaks and blisters. The skin is so fragile that even gentle rubbing or accidental pressure can cause it to tear. For this reason, children with EB are sometimes called “butterfly” children, because their skin is as fragile as a butterfly’s wings.
EBRP was co-founded by a group of parents dedicated to savings their kids’ lives, along with Jill and Eddie Vedder, and is the largest global organization supporting research for EB. Since its foundation, EBRP has raised +$60M, funded more than 140 projects, and increased clinical research for EB by nearly 20 times, including 2 FDA-approved EB treatments.
We’re so thankful for Tom Holland for helping us raise $11M over the last 4 years of Venture into Cures to fund research and accelerate treatments and cures for EB. Estimated to affect 500,000 around the world, EB is a group of rare, life-threatening skin diseases marked by fragile skin that easily breaks and blisters. The skin is so fragile that even gentle rubbing or accidental pressure can cause it to tear. For this reason, children with EB are sometimes called “butterfly” children, because their skin is as fragile as a butterfly’s wings.
EBRP was co-founded by a group of parents dedicated to savings their kids’ lives, along with Jill and Eddie Vedder, and is the largest global organization supporting research for EB. Since its foundation, EBRP has raised +$60M, funded more than 140 projects, and increased clinical research for EB by nearly 20 times, including 2 FDA-approved EB treatments.
WATCH MORE FROM TOM AND EB RESEARCH PARTNERSHIP
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It's because of the support and leadership of Tom Holland and The Brothers Trust that EB Research Partnership can continue to fund the most innovative science in the world to find much-needed treatments and cures for EB – and beyond.
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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 +$60M 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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At EBRP, we have one bold audacious goal: heal and cure EB by 2030. In the process, we’re pioneering a model that can benefit the more than 400 million people affected by a rare disease. We are proud of the progress being made towards achieving that goal and more inspired than ever to continue advancing life-saving treatments and cures for EB families across the globe.
