Tom holland on ebrp and his connection to the cause
WATCH HERE:
Tom Holland first learned about Epidermolysis Bullosa (EB) when his family created The Brother's Trust and he was introduced to EB Community members, some of whom are sadly no longer with us. EBRP is dedicating 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 $6M over the last 3 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 $50M, funded more than 120 projects, and increased clinical research for EB by nearly 20 times, including four Phase 3 clinical trials.
We’re so thankful for Tom Holland for helping us raise $6M over the last 3 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 $50M, funded more than 120 projects, and increased clinical research for EB by nearly 20 times, including four Phase 3 clinical trials.
