They may have the best intentions, but celebrities have never solved any problems with their charitable initiatives. If nothing else, Eddie and Jill Vedder's EB Research Partnership is making real progress toward its goal: finding a cure for a rare and devastating genetic skin disease called epidermolysis bullosa. When the couple launched the nonprofit in 2010, there was no cure for the disease and there were only two clinical trials underway. Today there are three therapies approved by the American Food and Drug Administration that represent hope for parents and children forced to face unimaginable suffering. “These are advances that should be celebrated, but the goal is to find the cure,” Eddie Vedder tells me over Zoom. “It's a problem that science can solve.”
The new documentary dedicated to the mission of the Vedder couple, Matter of Time, a question of timeavailable on Netflix, explains that there are currently more than 40 clinical trials underway on epidermolysis bullosa (EB) and that the Vedders' non-profit has raised over $80 million, funding 180 research projects. Directed by Matt Finlin, with commentary by Broken Social Scene, the film revolves around footage from Eddie's 2023 solo concerts at Benaroya Hall in Seattle. Among the audience were EB patients and their parents. The documentary tells the problems that families living with EB have to face on a daily basis, hours spent changing bandages, bleach baths, constant anxiety. At the center is the condition of children affected by the disease, who just want to play with friends, hug their parents, think about the future. “It's good to know that this movie exists,” Eddie says. “I think people can get a lot out of it not just in terms of this community in particular, but in learning about their fellow human beings in general.”
The Vedders discovered EB when Mikey Fullmer, nephew of Jill's childhood best friend, was diagnosed. “He was very fragile,” says Jill Vedder. «I had young children of that age, it's devastating to think that even just holding them or playing you could hurt them. There are so many things that can go wrong… I started to get to know many families, and the courage of the children and these parents for whom every day is a struggle. Watching your child suffer, and I'm talking extreme pain that can't be compared to anything else, is heartbreaking. I wanted to lend a hand.”
«We took a sort of crash course on the subject», adds Eddie, «and right away we met people from the community who struck us with their contagious spirit. And children have crazy courage. No one wants to suffer or have to face certain problems, but that's when it happens that you become a little wiser. Now these children are wise beyond their years. And this has an effect on your subconscious, it makes you understand the value of what we take for granted, how lucky we are not to have to face problems of this kind on a daily basis, it pushes you to do something for them, everything possible.”
Patients with the most severe forms of EB are born without type VII collagen, the protein that holds the layers of skin together. It means that even the slightest friction causes wounds that are difficult to heal. The disease also affects internal organs, from the esophagus to the intestine, and patients who make it to adulthood have a high chance of developing aggressive skin tumors. “It's an extremely painful and somewhat diabolical condition,” explains Eddie, “especially when you consider that it doesn't just affect the skin. It was once considered the worst disease that no one knew about, today this is no longer the case. This is already a result that the EB community has achieved.”
At first the Vedders didn't think they'd get so involved. “When Ed is involved, people pay attention,” Jill says. «Donations have arrived. We organized small events. The more money you can raise, the more scientists say they can find a cure, so we wanted to make everything possible available to them. I believe what they say. It's happening.”
Eddie compares the experience to the effort that went into the West Memphis Three, convicted of murder on dubious evidence in the 1990s and released after many years of battle in 2011. “When we went after the West Memphis Three we thought we could raise a little money and solve everything in a year or two, but instead it took 15 years of effort from me and other people. This time too it is like this. It takes time. But one of my favorite quotes is: why swim halfway across the Channel and then come back?
Vedder also developed a speech to convince potential big benefactors: “In addition to the things you have already accomplished and all the money you have in the bank, wouldn't you like to be able to write on your CV that you helped find the cure for a rare disease?”
The non-profit operates according to the model called venture philanthropy: when drugs are placed on the market thanks to the research it finances, the EB Research Partnership receives a percentage of the profits, which it reinvests in new studies. Thanks to the so-called angel donors who cover the administrative costs, 100% of the donations go to research. «We run the foundation like a company», explains CEO Michael Hund, «it's sustainable philanthropy».
The most recent success dates back to April 2025, with the approval by the Food and Drug Administration of Zevaskyn, a gene therapy for the most severe form of the disease, developed from research done at Stanford that the EB Research Partnership helped finance. Dr. Jean Tang, a Stanford dermatologist who appears in the documentary, worked on it, among others. Eddie was impressed when he discovered that Tang had been listening to Pearl Jam during his medical studies. “It makes me feel like I've made a contribution.”
Vedder's performances in the film have a particular intensity, with the lyrics of Just Breathe And Wishlist which acquire an additional meaning. “You start to find new meanings in the songs,” says Eddie, who had to fight not to be overwhelmed by emotion on stage. «This thing is strange, because if there is a dramatic part in which the singer sings and cries at the same time, the result is emotional. But there's a reason why they say 'having a lump in your throat': if you start to get emotional, it becomes impossible to sing well and hit the right note.”
«I know how much care and attention he puts into compiling concert lineups», adds Jill. «I stay away, it's his thing. At the time it seemed like a concert like any other, the songs were the same, but when I saw the film I thought: oh shit, the songs have changed, now they all seem dedicated to children.”
One of the older patients featured in the film, Deanna, died of EB-related complications shortly after the concerts. “Being part of this community is not for the faint of heart,” explains Eddie. The Vedders have attended several funerals of very young children with EB. “It can be psychologically tough, but every loss pushes you to work even harder.” These families, adds Jill, «deserve someone to be on their side. They fight every damn day, so we can fight with them. Ed and I are fighters.”
Hund worked for ten years with the celebrated charities of Paul Newman and Joanne Woodward before joining the EBRP. Compare that couple's dedication to that of the Vedders. “The idea of celebrity-led charities is that the founders appear for check presentations, galas or on the red carpet. Not the Vedders. They attend board meetings, they go to clinics, they have met hundreds of families, they develop strategies, they talk to scientists, they are on the front lines with grieving families, they go to funerals, to labs, to treatment centers… I talk to Jill practically every day,” adds Hund. “Several times a day,” Jill interrupts, “let's say it clearly.”
At a time when politicians promote skepticism about medical research, Matter of Time reminds us of the power of science. “I think it was Kurt Vonnegut who said science is magic that works,” Eddie says.
Despite all the pain he has seen, Eddie Vedder believes that music is also a form of magic and the film shows children with EB finding a hint of hope and experiencing a moment of escape at his concerts. «I don't consider it a trivial thing at all. It's nice to have found a means to convey emotions and mutual understanding, the ability to listen to a song and feel less alone than before.” Yet, he admits with a laugh, “at the moment, as far as EB is concerned, yes, I would say that genetic research matters much more.”
From Rolling Stone US.
