Matter of Time is a compelling documentary chronicling the fight to cure Epidermolysis Bullosa (EB), a rare and devastating genetic disease. Set against the backdrop of a powerful benefit concert organized by Pearl Jam frontman Eddie Vedder in Seattle, the film weaves together personal stories of patients and families, the scientific breakthroughs propelled by their advocacy, and the strength of a global community refusing to accept the status quo.
Far more than a concert film, Matter of Time captures the emotional and physical toll of EB, the radical model of venture philanthropy driving progress, and the belief that art, science, and love can fuel a cure. With an original score by Broken Social Scene and candid interviews from all sides of the movement, the film is a rallying cry for what’s possible when people come together—with urgency and heart—for something bigger than themselves.
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DIRECTOR’S STATEMENT
Written by Matt Finlin
Matter of Time is more than a music documentary—it’s a film about urgency, resilience, and the extraordinary power of community to change the future of medicine.
At its core, the film follows the intersection of art and science, where a global movement led by patients, families, doctors, and musicians is actively working to cure a rare and painful disease: Epidermolysis Bullosa (EB).
The story unfolds in Seattle, where Eddie Vedder brings together advocates and allies for two landmark benefit concerts. But this isn’tjust Eddie’s mission—it’s a collective one. From groundbreaking researchers and relentless parents to courageous young patients, Matter of Time captures the lived experiences behind the science and the soul behind the statistics.
What drew us to this story was the rare alignment of creativity and action. This isn’t a community crying out to be saved, they are saving themselves. EB Research Partnership built a model that is reshaping how cures are found. By pairing an emotionally rich visual style with a score by Kevin Drew of Broken Social Scene, the film strives to reflect the beauty, grit, and hope that define this community.
This is not a story about what might be possible. It’s about what is possible—when people come together with urgency, love, and belief that it’s only a matter of time.
A NOTE FROM JILL AND EDDIE VEDDER
EB Research Partnership Co-Founders
Epidermolysis Bullosa, or EB for short, is a brutal and life-threatening genetic skin disorder that affects kids from birth. While there are many causes we care about, this is a place where we know we can make, and have made, tangible impact. When we first got involved with the EB community we thought we could dedicate a year or two of activism, raise some funds, have a positive effect and then move on. It is testament to the incredible magnetism that these young people and their families possess that has kept us working non-stop for ten years.
Matter of Time is a film that shows the power of a community all focused on the same dream. We are incredibly proud of the work the EB Research Partnership has done to raise funds for life-saving research more than 150 projects funded, twenty times the amount of clinical trials from when we started, and now the first three FDA approved EB treatments.
We invite you to be part of a remarkably passionate team of people and learn about the resilient patients and brilliant medical community who inspire us to work harder everyday. Our goal is to cure EB by 2030, but that’s just the beginning. We are creating a blueprint that can cure thousands of other rare diseases which affect over 400 million people globally. This film is about more than music — it’s about bringing people together for a common goal. If we can unite to cure EB, imagine what we can do in a Matter of Time.
With lots of love, gratitude & hope,
Jill & Eddie Vedder