Venture Into Cures Raises $1.3M for Epidermolysis Bullosa Research
Foundation co-founded by Eddie Vedder wants to cure EB within the decade
The Venture into Cures virtual event raised more than $1.3 million for EB Research Partnership (EBRP), which seeks to advance research to cure epidermolysis bullosa (EB) and other rare diseases.
In total, the three editions of the event, hosted by EBRP co-founders Jill and Eddie Vedder, have raised more than $6 million.
As in previous years, this third annual event, held Nov. 20, presented several stories of people and families living with EB, as well as celebrity performances.
“With our third annual Venture Into Cures event wrapped, we cannot begin to express our gratitude for those involved in this incredible show,” Jill Vedder said in a press release. “From the exceptional talent who offered their time and voice, through to the generous donors that continue to show up for the EB community, we are immensely grateful as we move closer to finding a cure for EB.”
Estimated to affect 1 in every 20,000 births in the U.S., EB is a group of rare skin conditions 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 can seem as fragile as a butterfly’s wings.
EBRP was co-founded by a group of parents, along with Jill and Eddie Vedder, and is the largest global organization supporting research into EB. Since its foundation, EBRP has funded more than 120 projects and increased clinical research for EB by nearly 20 times, including four Phase 3 clinical trials.
“Through the ongoing support of the Venture Into Cures’ audience, donors and the patient and medical communities, we will continue to fund the most innovative and impactful global research. Over the last ten years, EBRP has made incredible strides in research and clinical trials,” Eddie Vedder said. “From the resiliency of the families and the commitment of scientists, together our ambitious goal is to cure EB in this decade.”
Celebrities show up for live-streamed event
The one-hour online event brought together celebrities including Billie Eilish, FINNEAS, Tom Holland, Joe Jonas, John Legend, Red Hot Chili Peppers, Chris Pratt, Keanu Reeves, Olivia Rodrigo, Emma Watson, and Venus Willams.
Other stars included Jonathan Brown, Dana Carvey, Will Ferrell, Jack Harlow, Macklemore, Lamorne Morris, Joy Oladokun, Kermit the Frog, Broken Social Scene, Molly Shannon, Hannah Simone, David Spade, and Lauren Spencer-Smith. Jill and Eddie Vedder’s daughters, Olivia and Harper Vedder, joined too.
Venture into Cures was streamed live and the replay is available on the EBRP’s YouTube channel.
Highlights of the show included actor Emma Watson who introduced the story of Elodie Kubik, a 6-year-old girl, and her conversation with Kermit the Frog.
The event also included an exclusive performance of John Legend singing “Never Break,” dedicated to children with EB and their families.
Venus Williams also spoke, presenting a conversation between Jean Y. Tang, MD, PhD, and Anthony Oro, MD, PhD, two researchers who gave a behind-the-scenes look at the work being done in gene and cell therapy to cure EB.
“We work for a higher purpose. And our higher purpose is that one day we may be able to contribute to reducing suffering. Please, you know, give to EB because a cure is on the horizon, and if we’re able to cure EB, then we’re going to show the world that we can cure many genetic diseases,” Tang said.
Actor Chris Pratt shared the story of 7-year-old Solomon Bonner, whose fight against EB is inspired by the dinosaur’s roar.
In a video montage, Olivia Rodrigo exhorts everyone to help support research into EB.
Also among the event’s highlights was Keanu Reeves introducing the story of Deanna Molinaro, a Canadian artist who uses her art to heal and inspire other patients.
Co-produced by EBRP and Door Knocker Media, this virtual event reached more than 75,000 people from more than 70 countries.