Eddie Vedder Changed Kids’ Lives With Pearl Jam. Now, He and His Wife, Jill, Are Trying to Save Them

Celebrity charity efforts, however well-intentioned, don’t usually get anywhere close to solving problems for real. But Eddie and Jill Vedder‘s EB Research Partnership, in its 15th year of a sprint to cure a rare, devastating genetic skin disorder, is making actual progress towards its goal. When the Vedders launched their charity in 2010, there were zero treatments for epidermolysis bullosa, and just two clinical trials underway. Now, there are three FDA-approved therapies, which means new hope for parents and kids facing unimaginable suffering. “We’ve celebrated the progress, but the cure is what we’re after,” Eddie says, in a Zoom with Rolling Stone. “This is, scientifically, a solvable problem.”

As chronicled in an award-winning new documentary about the Vedders’ quest, Matter of Time, which just hit Netflix, more than 40 clinical trials are currently underway for EB, and the Vedders’ charity has raised more than $80 million so far, funding 180 research projects. The film (directed by Matt Finlin, with a score by Broken Social Scene) is built around concert footage from Eddie’s 2023 solo shows at Seattle’s Benaroya Hall, with EB patients and their parents in attendance. The film also follows the daily struggles of families living with EB — hours of bandage-changing, bleach baths, constant anxiety. But at the center of the narrative is the pure, heart-shattering humanity of kids with the disease, who just want to play with their friends, hug their parents, and be able to look towards a future. “ It feels good to have this in the world,” Eddie says of the film.  ”I think people can take a lot from it. Not just in regards to this community, but it’s just more information to know about our fellow man.” 

The Vedders learned about EB when Mikey Fullmer, a nephew of Jill’s childhood best friend, was diagnosed. “He was so fragile,” says Jill. “I had young kids that age, and it’s devastating. To think that if you squeeze them too hard, you would hurt them. Playing outside with them, it’s dangerous. You could really hurt them. There’s so many things that can go wrong. I just started to meet all sorts of families, and the bravery of the kids, and these parents — every day is a struggle. Just watching your child in pain, this kind of severe pain that we can’t even compare anything to, it’s heartbreaking. I wanted to help.”

“We got a quick education,” says Eddie, “and we were meeting people in the community early on, which was really what got us. Their spirit was contagious. These kids have so much courage. None of us welcomes pain or hardship. But you could say that pain and hardship is where wisdom grows. These kids are wise beyond their years. And it has this subconscious effect of imparting on you all the things that we take for granted — how blessed we are to not have to face these kinds of difficulties on a daily basis, and wanting to do what you can to effect positive change for them.”

EB patients born with the most severe forms of the disease lack Type VII collagen, the protein that keeps skin layers together, which means even minor friction causes hard-to-heal wounds. The disease attacks internal organs, too, from the esophagus to the intestines, and patients who survive into adulthood face a high chance of developing aggressive skin cancer.  “It’s quite a painful and in some ways diabolical condition,” says Eddie. “Especially when you consider that it affects not just the skin. It used to be called the most diabolical disease that no one’s ever heard of — that’s not the case now. That’s already one accomplishment that the EB community has met.”

The Vedders didn’t originally intend to get involved as deeply as they did. “Because of Ed, people pay attention,” Jill says. “Small donations came in. We had little events. Then it just got to the point where the more money you can raise, and these scientists think they really can cure this — we just wanted to throw as much at them as we could. And I believe them. It’s happening.”

Eddie compares it to his work on behalf of the West Memphis Three, who were convicted of murder on dubious evidence in the Nineties, and only released after many years of advocacy in 2011.  ”When we got involved with the West Memphis Three, we figured we could raise some money and we could sort it out in a year or two, and it took 15 years of my involvement with other great people,” he says. “That’s this one, too. It’s taking some time.  But you know that one of my favorite quotes is, ‘Why swim halfway across the English Channel and turn back?’” 

He’s honed a pitch to potential big-dollar donors: “Of all the things you’ve accomplished, of all the large bank accounts you currently hold — wouldn’t curing a rare disease be something you’d like on your résumé?”

Their charity operates on a “venture philanthropy” model: When research it funds leads to commercial treatments, EBRP receives a percentage of profits that it invests back into more studies. Angel donors cover all administrative costs, so 100 percent of donations go directly to research. “We run the foundation like a business,” says CEO Michael Hund. “That’s created sustainable philanthropy.””

The most recent success came in April 2025, with FDA approval of Zevaskyn, a cell-based gene therapy for the most severe form of the disease, built on Stanford research that EBRP helped fund. Dr. Jean Tang, a Stanford dermatologist who appears in the documentary, was among the researchers whose work led to the breakthrough, and Eddie was touched to learn she listened to Pearl Jam throughout medical school. “This actually makes you feel like you’ve made a contribution,” he says.

Vedder’s performances in the film have a unique intensity, with the lyrics of  “Just Breathe” and “Wishlist” taking on particular added power. “You start finding new meanings in songs,” says Eddie, who had to struggle not to get too emotional onstage. “It’s always funny, because if you watch a film and there’s a dramatic part where the singer sings the song and cries at the same time, it makes for the most emotional delivery. In real life, there’s a reason they call it getting choked up. If you start to tear up, it is an impossibility to sing properly and hit the note.”

 “I know how much thought and effort he puts into setlists before every show,” adds Jill. “I stay away. It’s a thing! In the moment, watching the show, it was like, I’m just watching another show, these are the songs. But when I watched the film, I was like, ‘Holy shit.’ Those songs just became completely about [the kids]. It was so heavy.”

One of the older patients we get to know in the film, Deanna, dies of EB complications shortly after the concerts. “It’s not for the faint of heart, being part of the community,” Eddie says. The Vedders have attended multiple funerals of young children with EB. “It can be psychically taxing, but with every loss, we’ve just been encouraged to work even harder.”

“These families deserve someone in their corner,” says Jill. “They fight every fricking day, so we can fight with them. Ed and I are fighters.”

Hund spent a decade working with Paul Newman and Joanne Woodward’s oft-lauded charitable efforts before joining EBRP, and likens that couple’s devotion to the Vedders. “The perception of a lot of celebrity-led organizations is that the founders show up with the check presentation, or they show up at the gala, or they show up at the red carpet,” he says. Not the Vedders, he adds: “They’re on the board meetings, they’re in the clinics, they’ve met hundreds of families, they’re part of the strategy, they’re talking to the scientists — from the front lines of families who are suffering, to the funerals, to the labs, to the treatment centers.”

“I talk to Jill almost every single day,” Hund adds.

“Multiple times a day,” Jill interjects. “Let’s be real.”

Most viewers will come away from the documentary wanting to help, and the primary way to do so, the Vedders say, is to donate. But also, Hund says, “ join the team. Not everybody can donate. If you can donate, great. If you can donate a lot, great. If you can donate a little, great. But you can tell 20 people, if you can organize something in your kids’ school —  we have everything from polar plunges, which Jill does in Seattle, to bowling to baseball games. Whatever you can do. Every little bit helps. I think the biggest ask is, join the team and figure out where you fit in.”

In a moment when even government officials are promoting skepticism of medical research, Matter of Time is a welcome reminder of the power of science. “I think Kurt Vonnegut said something like, ‘Science is magic that works,’” Eddie says.  

Even in the face of all the pain he’s witnessed, Eddie still believes music is magic, too  — the film shows kids with EB finding moments of hope and escape at his concerts. “ I don’t dismiss that as trivial in any way,” he says. “How fortunate to have found a delivery system for emotion and the understanding of one another, the ability to hear a piece of music and not feel as alone as you did beforehand.”

Even so, he admits with a laugh, “right now, in regards to EB, yes — I would say that the more valiant occupation is genetic research.”

From Rolling Stone US.