Documentary chronicling fight against EB now playing in theaters
Cinemas in US, France screening 'Matter of Time' on the work toward a cure
Over the coming weeks, Matter of Time — a documentary that chronicles how scientists and advocates are working to find a cure for epidermolysis bullosa (EB) — will be playing at dozens of theaters across the U.S. and France.
The documentary is a concert film, but more, according to its website: It tells the story of two solo concerts the singer Eddie Vedder, frontman for the rock band Pearl Jam, did in 2023 to raise money for EB research, alongside interviews with individuals and their families who are living with the rare disease.
“Matter of Time captures a rising global effort to cure EB and pave the way for thousands of other rare diseases,” the webpage states.
Tickets for the events, as well as a complete list of locations and dates, are now available online. The documentary, directed by Matt Finlin, particularly focuses on the efforts of the Epidermolysis Bullosa Research Partnership (EBRP), an advocacy organization founded by Vedder and his wife Jill Vedder that’s been on the front lines of driving EB research.
“In a world that often feels divided, cynical, and overwhelmed by impossible problems, I hope this film reminds people of what’s possible when we come together. When we lead with compassion and with purpose,” Finlin told Epidermolysis Bullosa News.
EB encompasses several disorders marked by unusually fragile skin that’s prone to tears and blisters. Finlin said his journey with EB started while he was working on a youth empowerment show at ABC. That’s where he met Eli, a 6-year-old boy living with a severe form of the disease known as junctional EB.
“Eli changed my life,” Finlin said. “This little boy, wrapped in bandages, carrying unimaginable pain, was somehow bursting with joy, mischief, and light. It was as if his spirit refused to be defined by his suffering.”
For Finlin, that meetup proved pivotal.
“Once you meet someone with EB, your perspective changes forever,” Finlin added. “There’s a quiet strength, a wisdom that I honestly can’t put into words. I just hope the film could begin to reflect that.”
Documentary features rock singer Eddie Vedder, individuals living with EB
Through interviews with patients, families, and scientists, the new documentary aims to show how the EB community is driving progress to find new, better treatments for the disease — there are now three approved EB treatments in the U.S., where there were none just a few years ago.
“What drew me to this story was the way this community faces unimaginable pain with unimaginable love and grit,” Finlin said. “They’re not waiting to be rescued — they’re racing to rescue each other. That urgency, that resilience, that deep refusal to give up… I felt like we had a responsibility to hope alongside them.”
Matter of Time is about more than one disease — it’s a testament to how rare disease can be cured, and how this community is already doing it. EB Research Partnership has built a system for funding clinical trials that’s actually working. … If this is possible for EB, imagine what’s possible for so many other rare diseases.
The documentary, which premiered earlier this year at the 2025 Tribeca Festival, highlights the ongoing work of the EBRP, of which Jill Vedder serves as chair. Finlin said he thinks the EBRP’s efforts can serve as a model for advocates working to advance care for other rare diseases.
“Matter of Time is about more than one disease — it’s a testament to how rare disease can be cured, and how this community is already doing it. EB Research Partnership has built a system for funding clinical trials that’s actually working,” Finlin said. “If this is possible for EB, imagine what’s possible for so many other rare diseases. I found that deeply inspiring.”
Eddie and Jill Vedder founded the nonprofit EBRP in 2010
The EBRP was founded in 2010 and, according to its webpage is the largest organization in the world dedicated to funding research “to treat and cure epidermolysis bullosa.”
“This is what happens when people unite not for profit or politics, but to help one another,” Finlin said. “That spirit, that drive to heal, is what this community represents. And it’s what I hope the audience takes with them long after the credits roll.”
The documentary features an original score by Broken Social Scene, and has interviews with patients and caregivers, scientists, and Eddie Vedder.
“The film is a rallying cry for what’s possible when people come together — with urgency and heart — for something bigger than themselves,” the documentary’s webpage states.
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