Digital event features inspiring stories of Epidermolysis Bullosa (EB) families, surprise celebrity moments and two new songs by Eddie Vedder, inspired by EB.
EB Research Partnership (EBRP) announces Venture Into Cures, an inspiring virtual event led by co-founders Jill and Pearl Jam’s Eddie Vedder airing November 18th at 8 pm ET. The show will feature uplifting stories about individuals and families living with Epidermolysis Bullosa (EB) alongside appearances and performances from celebrity friends to educate viewers about EB and raise critical funds for research toward a cure for EB and other rare diseases. Venture Into Cures will include memorable and moving moments, including the premiere of new songs by Eddie Vedder, inspired by EB families: the debut of “Matter of Time” and a new version of “Say Hi”. Venture Into Cures, will stream globally for free at ventureintocures.org and others.
The one hour show, produced by Door Knocker Media and Seed Entertainment, includes 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, Micah and Willie Nelson, and Eddie Vedder.
“Ed and I are incredibly grateful to everyone joining us for Venture Into Cures. Every day kids with EB and their families face astonishing challenges — this event will give people a glimpse into their world. EBRP’s mission is to find a cure for EB, and this event will help bring us one step closer to making that mission a reality by adding momentum to the work being done,” says Jill Vedder, EBRP Co-Founder.
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 dedicated to accelerating life-saving treatments for patients and families battling EB, and Venture Into Cures offers us the opportunity to involve more people in our mission than ever before. Together, we will heal EB, and in the process, pioneer an innovative model for all rare diseases,” adds Michael Hund, CEO of EBRP.
Founded in 2010 by a dedicated group of parents and Jill and Ed Vedder (Pearl Jam), EB Research Partnership (EBRP) is the largest global nonprofit dedicated to funding research aimed at treating and ultimately curing Epidermolysis Bullosa (EB), a group of devastating and life-threatening skin disorders that affect children from birth.
Working around the clock with offices in the US and Australia, EBRP utilizes an innovative venture philanthropy business model. When making a grant to a research project, they retain the added upside of generating a recurring revenue stream if the therapy or product is commercially successful, then use the return on investment to fund additional EB research until a cure is found.