Actor Tom Holland to Lend Voice to Virtual Fundraiser for EB Research

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by Hawken Miller |

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EB Research Partnership fundraiser/Epidermolysis Bullosa News/image for Venture Into Cures

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A graphic of actor Tom Holland, who will host the event, and other celebrities who will appear. (Photo courtesy of EB Research Partnership)

Actor Tom Holland of “Spiderman” fame is hosting a live virtual event, with celebrity appearances and performances, to raise money to benefit the EB Research Partnership, which funds research for a cure and aims to increase awareness of epidermolysis bullosa (EB), according to a press release.

Eddie Vedder and Rowan Holler, a 4-year-old with dystrophic EB, pose for a photo. (Photo courtesy of EB Research Partnership)

Titled ‘Venture Into Cures,’ this year’s event — airing Nov. 18 — will be the second annual fundraiser for the nonprofit, created in 2010 by three families affected by EB and husband-wife team Jill and Eddie Vedder. Eddie Vedder is the lead singer of the rock band Pearl Jam.

According to EB Research Partnership CEO Michael Hund, the virtual event last year, which included well-known celebrities such as Bradley Cooper, Chris Hemsworth, and Billie Eilish, brought in about half a million viewers and raised more than $2 million.

The COVID-19 pandemic forced the virtual format again this year. And given the success of the first round, Hund said the EB Research Partnership will consider putting on a similar virtual or hybrid event in the future.

“Innovation is oftentimes born out of necessity,” Hund said in a video interview with Epidermolysis Bullosa News. “Having a digital event was the necessity to not give up and continue to fight and raise the dollars and fund the research trade. And that’s exactly what we did last year.”

Interested viewers can access the free hourlong show starting at 8 p.m. EST, with the pre-show starting at 7:30 p.m., through the organization’s streaming partner, BrandLive. EB Research Partnership-branded merchandise also is available before the show goes live.

Holland has his own nonprofit, which he founded with his three younger siblings and parents, called The Brothers Trust. Using his celebrity platform, Holland, and brothers Sam, Harry, and Paddy, aim to raise money and awareness for a variety of organizations, including EB Research Partnership.

Hund said Holland has met with EB families and was touched by their stories.

“I have never seen resilience and bravery like I’ve seen in the stories of those living with EB,” Holland said in the release. “I play a superhero in movies, but these kids and families are the true superheroes — they face impossible hardships every day, yet they keep pushing forward. We owe it to them to continue the race toward finding a cure for EB and other rare diseases.”

Other stars, including Fred Armisen, Jack Black, Pete Davidson, Mayim Bialik, Lily Hevesh, Selena Gomez, Gonzo from The Muppets, The Jonas Brothers, Bill Maher, Scott Van Pelt, and the Vedders, will make appearances during the show. Artists such as James Arthur, Brandi Carlile, Jack Johnson, Charlotte Lawrence, Pearl Jam, and Ed Sheeran also are set to perform.

“We’re really lucky and blessed and fortunate to have people that not only leverage their own platform, but bring others in to educate others about the cause,” Hund said. “So they really created this wave, this giant ripple effect of bringing others in.”

That wave started in 2010 when Jill Vedder learned that her childhood friend, Ryan Fullmer, also one of the co-founders of the EB Research Partnership, had a son with EB. It brought Eddie Vedder, who was instantly connected to the children who have the disease, and his Pearl Jam notoriety, as well as his celebrity friends, into the fray.

Hund believes that so many celebrities want to get involved because EB is a problem that can be solved, given enough time and resources.

“What better reason to wake up in the morning to work hard toward a goal like that, to use your talent, whether it be acting or being a musician or your platform to get involved in actually accomplishing something?” Hund said.

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Donations made through the livestream will go toward supporting ongoing research projects the organization is currently funding, and for new treatment approaches. Hund said the EB Research Partnership employs a venture philanthropy model to get the most impact with each dollar raised.

“ROI for us is not just a return on investment; it’s a return on impact if the work that we can fund can come back and support more projects for up until we cure the disease,” Hund said.

Of the four current EB Phase 3 clinical trials, Hund said the organization was an early investor in three: Abeona Therapeutics’ gene-corrected cell therapy EB-101 (NCT04227106); Castle Creek Biosciences’ gene therapy FCX-007 (NCT04213261); and Krystal Biotech’s investigational topical gene therapy B-VEC (NCT04917874).

According to Hund, the gene therapy platform that the EB Research Partnership is pushing also helps other rare diseases that have similar one-point genetic mutations.

“Beyond just a bold and audacious big mission to cure a disease like EB, the work that we do in EB is scalable to thousands of other rare diseases,” Hund said.

Venture Into Cures provides an opportunity for the EB Research Partnership to highlight the impact that treatment can have on those with the life-threatening skin disease, which also affects a patient’s internal organs. Such treatment includes gene therapy, topical medications that alleviate and heal blisters and wounds, and protein replacement therapy.

In the past, the nonprofit was reliant on in-person events to raise money and awareness. While such events will continue once the partnership deems it safe, this virtual show has been a way to reach an even larger audience. 

“I think there’s a real opportunity to bring [virtual and in-person events] together, bring the best of both worlds,” Hund said. “We’re figuring out ways to get people together in person and places across the world, but make sure that there’s still a digital way to share the stories with people from the comfort of their home from anywhere in any country.”