For fifteen years, Eddie and Jill Vedder have been racing against time to overcome epidermolysis bullosa, a rare and devastating genetic disease. Their documentary “Matter of Time”now on Netflix, tells the story of this quest – between moving concerts, heroic families and concrete scientific advances.
Celebrity charitable initiatives, no matter how sincere, rarely solve anything for good. But Eddie and Jill Vedder's EB Research Partnership, launched fifteen years ago in a sprint to cure a rare and devastating genetic skin disease, is really moving forward. When the Vedders created their foundation in 2010, there was no treatment for epidermolysis bullosa (EB) and only two clinical trials underway. Today, three therapies are approved by the FDA — new hope for parents and children facing unimaginable suffering. “We welcomed the progress, but the cure is our objective”confides Eddie in videoconference with WECB. “From a scientific point of view, the problem has a solution. »
A documentary, $80 million and more than 40 clinical trials
As told Matter of Timean award-winning documentary that just arrived on Netflix, more than 40 clinical trials are currently underway for EB, and the Vedders' foundation has raised more than $80 million, funding 180 research projects. The film, directed by Matt Finlin with a soundtrack by Broken Social Scene, centers around Eddie's solo concerts in 2023 at Benaroya Hall in Seattle, in the presence of EB patients and their families. The documentary also follows the daily lives of these families — hours changing dressings, bleach baths, constant anxiety. But at the heart of the story is the pure, heartbreaking humanity of these sick children who simply want to play with their friends, hug their parents and be able to look forward to the future. “It feels good to know that this film exists”Eddie said. “I think people can get a lot out of it. Not just about this community — just to get to know our fellow human beings better. »
“If we squeeze them too hard, we hurt them”
The Vedders discovered EB when Mikey Fullmer, nephew of Jill's childhood best friend, was diagnosed. “He was so fragile”remembers Jill. “I had children the same age, and it was devastating. Thinking that if we squeeze them too hard, we will hurt them. Playing outside with them becomes dangerous. So many things can go wrong. I began to meet families, and the courage of these children, of these parents… Every day is a struggle. Watching your child suffer, in pain so intense that no comparison can stand — it breaks your heart. I wanted to help. »
“The most evil disease no one has ever heard of”
Patients with the most severe forms of EB lack type VII collagen, the protein that holds layers of skin together — even the slightest friction causes wounds that are difficult to heal. The disease also attacks internal organs, from the esophagus to the intestines, and patients who survive into adulthood are at high risk of aggressive skin cancer. “The disease is painful and, in some ways, evil”summarizes Eddie. “Especially when you realize that it doesn’t just affect the skin. It was called “the most evil disease no one has ever heard of” — that’s no longer the case. The EB community has already won this victory. »
Initially, the Vedders didn't plan to get so deeply involved. “Thanks to Ed, people are paying attention”explains Jill. “Small donations have arrived. We organized modest events. And then, the more funds we raised, the more scientists were convinced they could find a cure — we wanted to give them as much as possible. And I believe them. It's progressing. »
“Why half swim across the Channel and turn around? »
Eddie compares this commitment to his fight for the West Memphis Three, these three men convicted of murder on dubious evidence in the 1990s, only released in 2011 after years of mobilization. “When we got involved with the West Memphis Three, we thought we'd raise money and get it done in a year or two. It took fifteen years”he says. “There, same thing. It takes time. But you know, one of my favorite quotes is: “Why half-swim the English Channel and turn around?” » »
He put together an argument for potential major donors: “From everything you've accomplished, from all the well-stocked bank accounts you have — wouldn't curing a rare disease deserve a line on your CV? »
Philanthropy that works like a business
The foundation operates on a “venture capital philanthropy” model: when the research it funds leads to marketed treatments, the EBRP receives a percentage of the profits, reinvested in new studies. “Angel” donors cover all administrative costs, so 100% of donations go directly to research. “We manage the foundation like a business”explains general manager Michael Hund. “It created lasting philanthropy. »
The most recent success came in April 2025, with the FDA's approval of Zevaskyn, a cellular gene therapy for the most severe form of the disease, stemming from research at Stanford that EBRP helped fund. Stanford dermatologist Jean Tang, who appears in the documentary, is one of the researchers whose work made this breakthrough possible. Eddie was touched to learn that she listened to Pearl Jam while in medical school. “There, we really have the feeling of having contributed something”he smiles.
“The songs became entirely for them”
Eddie's performance in the film exudes a singular intensity — the lyrics of “Just Breathe” And “Wishlist” take on new power. “We discover new meanings in our own songs”confides Eddie, who had to fight not to let himself be overwhelmed on stage. “In the cinema, when a singer cries while singing, it gives the most moving scene in the world. In real life, there's a reason we say we have a tight throat. As soon as the tears come, it becomes physically impossible to sing in tune. »
“Every loss pushes us to work even harder”
One of the adult patients we get to know in the film, Deanna, dies of EB-related complications shortly after the concerts. “Being part of this community is not for the faint of heart”recognizes Eddie. The Vedders attended the funerals of several young children with EB. “It can be mentally exhausting, but each loss has pushed us to work even harder. »
Michael Hund spent ten years alongside Paul Newman and Joanne Woodward in their charitable works before joining the EBRP, and he compares the devotion of this legendary couple to that of the Vedders. “The image we have of many celebrity-driven organizations is that the founders appear for the check presentation, the gala or the red carpet”he said. The Vedders, no. “They go to board meetings, they go to clinics, they've met with hundreds of families, they're part of the strategy, they talk to scientists — from the front lines of suffering families to funerals, from labs to treatment centers. »
“Join the team”
Most viewers will come away from the documentary wanting to act. The first gesture, say the Vedders, is to make a donation. But also, Hund insists: “Join the team. Not everyone can give. If you can, great. Much, so much the better. A little, so much the better too. But you can tell twenty people about it, organize something at your kids' school — we have everything from the ice dives that Jill does in Seattle to bowling to baseball games. Every gesture counts. The most important thing is to join the team and find your place. »
At a time when politicians openly encourage distrust of medical research, Matter of Time powerfully reminds us of the power of science. “I think Kurt Vonnegut said something like, 'Science is magic that works.'”says Eddie.
Despite all the pain he's seen up close, Eddie still believes that music, too, is magic — the film shows children with EB finding moments of hope and escape at his concerts. “I never consider it trivial”he said. “How lucky to have found a vehicle for emotion and mutual understanding — the ability to listen to a piece of music and feel a little less alone than before. »
However, he adds, with a burst of laughter: “There, right away, as far as EB is concerned — yes, I would say that the most valuable occupation is genetic research. »
