Celebs to Participate in Venture Into Cures for EB Awareness, Fundraising

Foundation led by Eddie Vedder has raised more than $4.6M for EB research

Teresa Carvalho, MS avatar

by Teresa Carvalho, MS |

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On Nov. 20, Jill and Eddie Vedder will host the third annual Venture Into Cures, a virtual show aimed at raising awareness for epidermolysis bullosa (EB) and funds for EB Research Partnership (EBRP).

The event will feature stories about people with EB and their families, musical performances, and several well-known speakers and celebrities.

Billie Eilish, Tom Holland, Joe Jonas, Will Ferrell, Chris Pratt, and Venus Williams are among the celebrities who will appear in support of this cause. Musical performances will include John Legend, Red Hot Chili Peppers, Broken Social Scene, Joy Oladokun, and Lauren Spencer-Smith.

EB is a group of rare skin conditions that cause skin to be fragile and to easily blister and tear. Blistering may occur anywhere in the body, including mucous membranes that cover organs and orifices (including the mouth). As a result, patients have open external and internal wounds, require daily use of dressings, and experience pain.

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EBRP, through its pioneering Venture Philanthropy model, aims to find treatments not only for EB but also for other rare diseases.

“As we approach our third annual Venture Into Cures, we hope this year’s show motivates viewers to be involved in the fight towards a cure for not only EB but the 7,000 rare diseases affecting 10 percent of the global population,” said Michael Hund, CEO of EBRP, in an organization press release.

EBRP was founded in 2010 by Jill and Eddie Vedder and families of children affected by EB. The organization’s  story is told by Eddie Vedder in a video created for the event’s first edition in 2020.

Currently the world’s largest nonprofit organization supporting EB research, EBRP has funded more than 100 research projects and helped increase the number of EB clinical trials, which has grown by nearly 20 times, the organization stated.

EB clinical trials

Some of these trials are already on Phase 3, including the now-completed VIITAL trial (NCT04227106) and the ongoing DeFi-RDEB study (NCT04213261). Both were designed to test potential gene-corrected cell therapies in children and adults with recessive dystrophic EB (RDEB).

VIITAL’s top-line results showed EB-101, Abeona Therapeutics’ experimental therapy, was safe and effective at healing large, chronic RDEB wounds and relieving pain in RDEB patients.

The positive data will be used to support a future submission of an application seeking the therapy’s approval in the U.S. for RDEB.

The DeFi-RDEB trial, which dosed its first patient in late 2020, is assessing the safety and efficacy of Castle Creek Biosciences’ treatment candidate FCX-007, also known as D-Fi, in six RDEB patients. Top-line data are expected in 2023.

“We are making life-changing strides for EB,” Hund said.

Venture into Cures is a one-hour show and will start at 4 p.m. EST. Those interested in watching the event can access it for free through its website, on Facebook (Pearl Jam, Eddie Vedder, EBRP), or YouTube (Pearl Jam, Eddie Vedder, EBRP).

Other celebrities appearing in support of increasing EB awareness include Jonathan Brown, Dana Carvey, Jack Harlow, Kermit the Frog, Olivia Rodrigo, Molly Shannon, Hannah Simone, David Spade, and the Vedder family.

As in previous editions — which have raised more than $4.6 million — the event will be produced by EBRP together with Door Knocker Media. The stars’ agency, One Twenty Eight, also will collaborate by ensuring celebrity engagement in the event and the accuracy of their awareness posts on social media.