Emma Watson, Kermit the Frog and Elodie Tell the Story OF How The Plunge for Elodie Came to Be
WATCH HERE:
6-year-old Elodie Kubik was born with Recessive Dystrophic Epidermolysis Bullosa (RDEB). Like all children with EB, Elodie is missing a critical protein that binds the layers of the skin together, making it extremely fragile and causing severe pain and wounds, both internal and external. Emma Watson and Kermit the Frog joined Elodie for the 3rd annual Venture into Cures event to help raise awareness and funds for EB. Today, there are no treatments for this life-threatening disease. We're on a mission to change that – and we're proud to say a cure is just within reach.
We’re so thankful for Emma Watson and Elodie for helping us raise $6M over the last 3 years of Venture into Cures to fund research and accelerate treatments and cures for Epidermolysis Bullosa (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 Emma Watson and Elodie for helping us raise $6M over the last 3 years of Venture into Cures to fund research and accelerate treatments and cures for Epidermolysis Bullosa (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.
