Eddie Vedder performing in “Matter of Time” from Director Matt Finlin’s documentary, winner of the Jury Award for a Music Documentary, at the 56th Nashville Film Festival. (Photo by Tim Durkan).
In 2014, musician Eddie Vedder and Jill Vedder co-founded the EB Research Partnership ,a non-profit organization dedicated to finding a cure for the genetic skin disorder epidermolysis bullosa.[135] Director Matt Finlin’s one hour and 46 minute documentary follows Eddie Vedder of Pearl Jam fame as he gives a series of fund-raising concerts in Seattle in 2023 to raise money to find a cure for this horrible disease. Sixty million was raised for research that resulted in 140 research projects, over the past eleven years.
This is an absolutely heartbreaking look at a lethal disease. You might want to have some Kleenex handy if you make it through the 105 minute documentary dry-eyed. Half of the documentary features Vedder singing onstage at Seattle concerts, accompanying himself on acoustic and electric guitar and ukelele. (No Pearl Jam). I admit to knowing very little about Eddie Vedder going into this film, other than remembering his 3 year feud (1994-1997) with Ticketmaster. I knew that Vedder had composed musical scores for films like “Into the Wild” (2007) and the 1995 soundtrack for “Dead Man Walking.” The Pearl Jam debut album “Ten” Rolling Stone voted 209th out of the 500 Greatest Albums of All Time was on my radar . The thirteen times platinum sales with the song “Jeremy” coming in at #11 on VHI’s list of the 100 Greatest Songs of the 90s is another testimony to Vedder’s success.
Eddie Vedder.
I was always aware of the existence of Pearl Jam, but a huge fan I was not. However, after seeing how much good one entertainer has done over a period of more than 10 years, I am a fan. I also admired Vedder’s public stance on pro-choice and other issues and the candidates he supported during past presidential campaigns.
E.B.
Called “The worst disease you’ve never heard of” E.B. is also dubbed the “butterfly disease” because the slightest pressure on the skin of a child with the disease can mean agony. Open wounds can lead to an aggressive form of cancer; the patient often doesn’t have a long life. Septic shock can set in if the patient gets an infection, so measures must be taken to wrap the victim in gauze each day for protection. When clinical trials were discussed, one of the oldest patients that could be found to take part was only 27. We get to know another patient who dies at 16, which we learn near the documentary’s end.
PARENTS SPEAK
What the children and their parents go through is mind-boggling. As Eli’s mother says, “We just want someone to understand what we’re going through on a day-to-day basis.” Another mother says, “It tears you apart as a child and as a family. I would give anything for my child not to have E.B.” Things that we all take for granted are huge hurdles—like taking a bath. It can take 4 to 5 hours (and much gauze) for each mini-mummification application. Playing with Leggos or simply trying to crawl with such sensitive skin are impossibilities.
A young sufferer from E.B. in the award-winning Music Documentary at the 56th Nashville Film Festival “Matter of Time” from Direct
People stare at the children afflicted with E.B. which caused the 8-year-old sister of Eli to make a TikTok video and posters that read “Just say hi.” The social stigma is there. There are children, like Rowan, who say, “I just want the wounds to stop happening and for my life to be like everyone else’s.”
In the midst of all of this suffering (Charlie, who was abandoned at birth, and was “in pain from the moment he was born”) becomes the adopted child of one family after an orphanage initially gave the woman who would become his adoptive mother syringes of morphine and sent the newborn to her, essentially to die. Charlie surprised everyone by having a fighting spirit. He survived and went on to join the family as their much-loved adopted son.
CHILDISH ADVICE
One young sufferer, an accomplished artist, gave this advice: “Live each moment to the fullest and do not dwell on the things you can’t change.” Later, this artist—who lost an arm to the disease as the prosthesis did not “take”—says “Live your best life for as long as you possibly can.” It’s no surprise that terms like “resilience” and “fortitude” are used to describe the courageous children and parents who are interviewed onscreen and share their truth.
REMARKS
Eddie Vedder performing in “Matter of Time,” raising funds for E.B. research. (Photo by Tim Durkan).
As one parent said, “It tears you apart as a child and as a family. It pretty much turned our world upside down.” It is remarkable to learn that at least two sets of parents chose to adopt children with this disease when they had been abandoned by their biological parents and were left alone in an orphanage.
If this sounds like a terribly depressing film, you’re right. But there IS a light at the end of this particular medical tunnel. There is research attempting to “change dread into hope”. Because of celebrities like Eddie Vedder (in the credits, Adam Sandler and Meg Ryan are also noted) E.B. has made progress. E.B. is much closer to being cured than 95% of other such diseases, thanks to fund-raising efforts like Vedder’s. Thanks, also, to Director Matt Finlin and company, who brought this story to public view, winning the Jury Prize for Best Music Documentary at the 56th Nashville Film Festival.
BREAKTHROUGH
The 140 research projects have succeeded in identifying the specific gene that causes the disease and keeps the Collagen VII from doing its job effectively. There are three forms of the disease mentioned—EB Simplex, Juztional EB and Recessive dystrophic EB. The science is relatively straightforward. For some forms of the disease, there now is a treatment that involves injections of a live virus that goes into the skin cells and clips out the faulty gene, replacing it with a healthy one. It is stressed that this is a treatment, not a cure,–and that it only works on certain forms of the disease–but, as Jill Vedder (Eddie’s wife) and various researchers in the field tell us, “A decade ago, it was hard to imagine a cure. We are on the edge of a cure for E.B. We can now manipulate cells in a petri dish and we have a viral-based gene therapy.” Hence the title: “Matter of Time.”
Director Matt Finlin of DoorKnockerMedia accepting the Jury Award for Best Music Documentary at the 56th Nashville Film Festival on September 21st, 2025.
At the end of this informative and emotional documentary, this message appears onscreen:
“For millions living with rare diseases, time is not a luxury; it’s a race against bureaucracy, funding gaps and government priorities. It’s up to us to accelerate science and ensure that life-changing treatments reach the people who need them most.”
Among the diseases mentioned are Cystic Fibrosis, Muscular Dystrophy, Alzheimer’s, Parkinson’s Disease, and ALS . With the current administration in power, the funding for research looks exceedingly bleak. Here is an NPR report that tells just how deep the Trump cuts are: Trump administration makes deep cuts to science funding : NPR
It is important to know the facts about whether or not your government is supporting the research to help vanquish diseases like E.B. Even more relevant, will the current CDC support vaccines to prevent measles, whooping cough, polio, Covid-19, bubonic plague and many other diseases that we all thought were gone forever? Under this administration, those diseases are coming back. The CDC has been co-opted by an unqualified anti-vaccine chief who is taking all of us down with him. I am a cancer survivor. With RFK, Jr. heading up the CDC, I am worrying about even being able to get a vaccine booster shot for Covid-19 before I return to Texas for the winter. I fear for the retirees heading for Florida, which has recently announced a cessation of vaccination programs. Keep all of this in mind when you next vote. Ask yourself whether the USPO, the FBI, the CDC, the (now demolished) Education Department, the Defense Department are being run in the most effective manner by experts in their fields, or whether we are now fully mired in a kakistocracy. (Kakistocracy: System of Government that is run by the worst, least qualified, or most unscrupulous citizens.)
This is a well-done look at a disease few of us know much (or anything) about. It is skillful in weaving Vedder’s concert footage into touching first-person testimonials to the progress that money for research has made and can make for these brave children and their families. I hope that everyone who goes to this one because they are Eddie Vedder fans gives him great credit for spearheading private efforts like this for over a decade and demonstrating compassion rather than the futile “thoughts and prayers” that we primarily get from the top.
KUDOS
Award-winning Director Matt Finlin (“Matter of Time”) with Weekly Wilson/ The Movie Blog reviewer Connie Wilson on Sunday, September 21st, at the 56th Nashville Film Festival.
Similar kudos to Director Matt Finlin and Blue Leach cinematography as well as Screenwriter/Producer Karen Barzilay for their hard work and vision in bringing information like this to the public’s attention. In addition to Vedder’s acoustic music, Composer Kevin Drew and Broken Social Scene composed the music, and James Yates edited. All are to be commended for bringing a difficult topic to the screen to add to the awareness of the public and, hopefully, to bring more financial support. All have done a good job with a difficult subject.
CONCLUSION
In 2022 at the 58th Chicago International Film Festival I reviewed Michael Burke’s documentary about ALS sufferer Brian Wallach, “No Ordinary Campaign,” at its World Premiere. “Matter of Time” reminded me of “No Ordinary Campaign.” Both were heartbreaking and well-done.
As one young E.B. sufferer articulated, poignantly, in the film, “I hope more people being kind to other people will come out of this.”
So do I. A change in leadership at the top is the first step towards that goal of going forward, not backward, in important health and science research.
