Eddie, Jill Vedder Reveal The Human Side Of EB In ‘Matter Of Time’ Doc

Eddie Vedder capped the world premiere screening of the new documentary Matter of Time last night (June 12) at New York’s Spring Studios with a six-song acoustic performance, frequently pausing to salute the families struggling with the debilitating skin disease Epidermolysis Bullosa (EB) who are profiled in the film.

Vedder and his wife Jill co-founded EB Research Partnership in 2010 and have since raised $75 million to identify treatments and cures for the condition, which impacts children from birth. In the Matt Finlin-directed Matter of Time, these families assemble in Seattle in late 2023 for the inaugural Venture Into Cures summit and two solo Vedder concerts at Benaroya Hall. Throughout, viewers also see EB patients receiving three promising new, FDA-approved medications for the first time and get a powerful look inside the spirit and camaraderie of the rare disease community.

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“You’ve given us a wave to ride the surfboard of hope,” said Vedder, who played Warren Zevon’s “Keep Me in Your Heart,” Tom Waits’ “Picture in a Frame,” Glen Hansard’s “Song of Good Hope” with his guitar tech Simon Good on acoustic, Pearl Jam’s “Porch” and their fan-favorite cover of the ’60s hit “Last Kiss” plus Tom Petty’s “I Won’t Back Down.”

“With all the causes we’ve been involved in, whether it’s women’s rights or the climate or when my sister had brain cancer, we’ve never been able to ‘fix’ any of them,” Jill Vedder tells SPIN. “This actually feels like something we can fix. The researchers believe we can do this. I believe it, because, watch us! The science backs us up that it can be done, and that’s powerful. So, why would we stop now? We can’t. We love these families too much.”

“We live in a divided world, but I think this is a really great example of a community that is doing whatever they can to fix something,” adds Finlin. “And there’s proof in what they’re doing. It’s not just that we’re saying this and it’s not that we’re selling a feeling. It’s hopeful and it’s happening. There’s proof of that since we started the film. There’s three-FDA approved treatments, where two years ago there was zero for 25 years. There’s a young woman in the film named Deanna who is 29 years old, which is older for an EB patient with a severe form of dystrophic EB. When she was born, they could only use very simple, rudimentary care like bleach baths and bandages that protect the wounds so they don’t get infected, but that was it.”

Eddie Vedder performs during the ‘Matter of Time’ premiere (photo: Kevin Mazur / Getty Images for EB Research Partnership).

Finlin devotes significant footage in Matter of Time to the day-to-day experiences of Deanna, who passed away shortly after the Seattle concerts, and a precocious pre-teen named Rowan, helping to highlight the speed at which EB research is moving. “You’ve got two different generations,” says Jill Vedder. “One had nothing and her parents had to make up how to wrap her and how to keep her healthy. And then you’ve got Rowan, who you see receiving the FDA-approved treatment that’s closing her wounds. That’s not a cure. It’s just quality of life for now, but that just didn’t exist for Deanna.”

“Instead of researchers spending half their time writing grants to try and get this science over the finish line, how do we get this from the lab to the bedside of a patient?,” asks Finlin. “What they’ve done in this whole community, whether they’re scientists or rock stars or leaders of an organization, is transform how they can speed up the trajectory of this disease. They’re marching with these people to elicit an endgame.”

What’s more, since EB involves a single-gene mutation, scientists are hopeful that breakthroughs in this realm could one day lead to curing other similar diseases. “You may be learning about EB for the first time in this movie, but everybody knows somebody with a rare disease,” EBRP CEO Michael Hund tells SPIN. “That’s 400 million people — one in 10 people on this planet. Yet 95% have no approved treatments. We’ve been able to do that three times in the last two years, thanks to the brilliance of people like [EB clinician] Dr. Jean Tang. But what we feel a duty and an obligation for in the film will be a massive launching battle. Tthis model of data technology innovation collaborating with academics and a venture philanthropy investment model is innovative and different. We hope it can benefit some of those other 10,000 rare diseases as well.”

For the Vedders, becoming a part of the EB community as a family has further crystalized their commitment. “As a kid, I was friends with all these kids, and I grew up so invested in it,” Eddie and Jill’s 21-year-old daughter Olivia tells SPIN. “But also, I had to be extra careful [around them] and it always made me sad. I really care on another level, because this is our thing. These last two years I’ve gotten to really join the team a little more, and to see this progress is unbelievable.”

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