Last Wednesday, November 18, EB Research Partnership (EBRP) co-founders Jill and Eddie Vedder presented Venture Into Cures, an inspiring virtual event featuring moving stories about individuals and families living with Epidermolysis Bullosa (EB).
United by a lineup of celebrity friends, the event raised over $1.8 million for EBRP, helping the organization move closer to finding a cure for EB and leading the way for other rare diseases.
More than 150,000 tuned in to watch special appearances by Judd Apatow, Bradley Cooper, Laura Dern, Billie Eilish, Chris Hemsworth, Jimmy Kimmel, David Letterman, Gaten Matarazzo, Luis “King Kong” Ortiz, Adam Sandler, Jill Vedder, and Renée Zellweger, and inspiring musical performances by Jon Batiste, Alessia Cara, Andra Day, Glen Hansard, Adam Levine, Keb’ Mo’, Lukas Nelson and Promise of the Real with Micah and Willie Nelson, and Eddie Vedder. The one hour virtual show was produced by Door Knocker Media and Seed Entertainment.
“Our goal was to inspire people and move them to take action. Venture Into Cures showcased the brilliant research being done to find a cure for EB and the courage and bravery of young people living with the disease. We’re already far along on the roadmap to heal EB and the event helped maintain the momentum we need to cross the finish line,” said Jill Vedder, EBRP co-founder.
Highlights from the show include:
- Singer/songwriter and EBRP co-founder Eddie Vedder’s new video premiere for “Say Hi”, dedicated to EB warrior Eli, and new song “Matter of Time”, paired with a music video illustrated by renowned illustrator, Jeff Lemire and introduced by David Letterman
- Singer/songwriter Andra Day’s moving cover of Eddie Vedder’s “Longing to Belong”
- Actor Chris Hemsworth and EB warrior John Hudson’s emotional superhero story
- Jimmy Kimmel interviewing a team of doctors working on advancing treatments and cures for EB
- Singer/songwriter Adam Levine’s cover of Pearl Jam’s “Elderly Woman Behind a Counter in a Small Town”
- Actor Laura Dern sharing the story of heavyweight boxer and father of a child with EB, Luis “King Kong” Ortiz
- Singer/songwriter Glen Hansard performing a candlelit version of “Song of Good Hope”
- Singer/songwriter Billie Eilish’s auction donation of a custom, signed Fender ukulele with all proceeds going to help EBRP heal EB
- Singer/songwriter Alessia Cara’s performance of her hit song, “Scars to Your Beautiful”
- Actor Adam Sandler and gaming star and EB warrior ThatGeekAaron having fun and a few laughs
- Singer/songwriter Keb’ Mo’ performing a campfire version of “Just Like You”
- Actor Renée Zellweger’s narration, with accompaniment by musician Jon Batiste, of a mother’s story about her relentless love for son’s endless strength throughout his heroic battle with EB
- Actor Bradley Cooper sharing the impact of EBRP’s work on the greater rare disease population
- Singer/songwriter Lukas Nelson and the Promise of the Real performing “Set Me Down on a Cloud” with his brother Micah and father and legend Willie Nelson
The show can be viewed in its entirety at www.ebresearch.org.
EB is a life-threatening genetic disorder that affects approximately 500,000 people worldwide. Called “Butterfly Children” because their skin is as fragile as the wings of a butterfly, children with EB face severe pain, open external and internal wounds, and a grueling daily bandaging process. There is currently no treatment or cure for EB, however EBRP’s innovative Venture Philanthropy model is helping to fast-track not only a cure for EB, but therapies that could affect thousands of other rare diseases.
As the largest global organization supporting EB research, EBRP has funded 80 projects through their innovative model, directly impacting the clinical landscape. Through EBRP’s work, clinical trials for EB have increased by 15 times, including four Phase III clinical trials, the final phase before the FDA considers approval for a new therapy.
“Our team is connecting the trailblazing advances in the lab directly to the bedsides of patients living with EB, at the speed of light. Curing EB is not an “if”, it’s a “when”. Together, we will heal EB and in the process, pioneer an innovative model for all rare diseases," says Michael Hund, CEO of EBRP.