RACE TO CURE EB: MATTER OF TIME KICKS OFF THE FILM’S GLOBAL SPECIAL SCREENING EVENT NOVEMBER 7, 2025 IN SEATTLE
Matter of Time Poster
Check out the teaser trailer
In October 2023, Pearl Jam frontman Eddie Vedder performed two sold-out solo shows at Seattle’s Benaroya Hall, with all proceeds supporting critical EB research. Children with EB, often called “Butterfly Children,” have skin as fragile as the wings of a butterfly, making everyday activities like eating, sleeping, walking, and playing monumental challenges. EB is one of more than 10,000 rare diseases, 95% of which have no approved treatments or cures, and rare diseases affect more people than HIV and cancer combined.
Produced by Door Knocker Media in association with EB Research Partnership (EBRP) and the Vitalogy Foundation, Matter of Time blends Vedder’s intimate performances with personal stories from researchers, doctors, funders, parents, and young people living with EB. Together, they form a powerful community dedicated to supporting one another and accelerating the search for a cure.
Director Matt Finlin crafts a moving concert film that captures the electric energy of Vedder’s heartfelt acoustic performance while reflecting his deep personal involvement with EBRP, which he co-founded with wife Jill Vedder in 2010. The documentary makes audiences feel like they are in the room alongside Vedder and his special guests from the EB community during this unforgettable event.
“It’s been an extraordinary honor to meet and work alongside the incredible families, researchers, and advocates who make up this community. With Matter of Time, our goal was to create more than a film—we wanted to build a 'hope machine' that carries the voices and spirit of those fighting EB every day. I’m deeply proud to play even a small part in a movement that’s not only driving real, tangible progress toward curing rare disease, but doing it with unmatched heart, resilience, and unity” stated Director, Matt Finlin.
Michael Hund, CEO of EB Research Partnership, added, “This film celebrates our community of courageous patients and families, and highlights the real scientific progress that is happening right now. We are showing the world how rare diseases like EB can be cured, and we hope to take our model to thousands of other conditions. Our goal is to raise the visibility of this urgent cause and to inspire others to join us in our mission to heal EB and offer a blueprint for the more than 400 million people affected by rare disease.”
Producer Karen Barzilay stated “We set out to make a film that serves as a call to action. By bringing EB into the spotlight in such a personal and powerful way, we hope to inspire more people to join this fight and help us push toward a cure for EB and other rare diseases.”
Jill Vedder, co-founder and chairwoman of EBRP, emphasized the urgency behind the mission: “It’s amazing to witness how far we’ve come. Epidermolysis Bullosa may be rare, but through the tireless work of our community, our message is reaching more people than ever. This is more than awareness; it's an urgent push to cure EB by 2030, and together, I know we can make it happen”.
“Getting involved with EB and EB Research Partnership, I don’t think it was a choice. It chose us. This community, you are immediately taken by the amount of strength and dedication on a daily basis to overcome obstacles that we can’t even imagine,” Eddie Vedder says. “When you see the intense pain that these kids go through, you imagine what it must do to the hearts of the parents, and there does become a timeline. It’s so special to be playing for a purpose, the purpose being this incredible mission,” he states.
Since its founding in 2010 by Jill and Eddie Vedder alongside a group of dedicated parents, EBRP has raised more than $70 million for life-saving research, contributed to a 20x growth in EB clinical trials, and helped fund the first-ever FDA-approved topical gene therapy for EB families. Utilizing an innovative Venture Philanthropy Model, EBRP is actively transforming the EB landscape while creating a scalable impact that could benefit the 400+ million people worldwide affected by rare diseases.
The documentary also features an original score by Broken Social Scene, longtime advocates for the EB community. For more information about the film please visit https://www.matteroftimefilm.com
The special theatrical event screenings are booked by Evan Saxon Productions as Matter of Time marks Evan's fifth collaboration with the Pearl Jam family. For booking inquiries, please contact Evan Saxon Productions directly at Evan Saxon; Evan@EvanSaxonProductions.com
About EB Research Partnership
Founded in 2010 by a dedicated group of parents along with Jill and Eddie Vedder of Pearl Jam, EB Research Partnership (EBRP) is the largest global nonprofit dedicated to funding research to treat and cure Epidermolysis Bullosa (EB), a group of devastating and life-threatening skin disorders that affect children from birth. EBRP utilizes an innovative and award winning venture philanthropy business model that is accelerating cures for EB and pioneering a path for millions suffering from rare diseases. To learn more or to donate, visit www.ebresearch.org
Ainsley McGovern
Falco Ink.
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