Eddie Vedder’s quest to help cure a rare disease subject of new documentary

By Sandra Gonzalez, CNN

(CNN) — “Matter of Time,” a documentary featuring Pearl Jam frontman Eddie Vedder that is set to debut this summer at the Tribeca Film Festival, is being billed as much more than a concert film – it’s a rallying cry for action.

A string of 2023 solo concerts in Seattle are the backdrop for the film, which chronicles Vedder’s efforts to raise funds for clinical research for Epidermolysis Bullosa, a rare genetic skin disease that causes blisters and skin erosion and predominantly affects children.

Proceeds from those concerts were directed to EB Research Partnership (EBRP), a foundation co-founded by Vedder and his wife Jill, along with a group of families. The organization’s goal is to find a cure for EB by 2030.

The film, according to a news release, “blends powerful music with the poignant, real-life stories of patients, families, researchers, and thought leaders, revealing how determination and innovation are paving the way toward a cure.”

“We are so grateful to the music community, and the entire team who made these concerts and this film possible,” said Eddie Vedder in a statement, first provided to CNN. “This is a story of hope, resilience, and the power of community.”

Jill Vedder, chairwoman of EBRP, added: “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.”

The couple’s involvement stems from a personal connection. A family friend’s son was born with EB and it inspired them to take action.

“The concert wasn’t just about music; it was about amplifying the voices of a small but mighty community that refuses to let this disease define them,” said Finlin said. “Through the Vedders’ dedication and the efforts of everyone involved, this documentary demonstrates to the world how, even against all odds, real change is within reach.”

Founded in 2010, EBRP has had a noted impact on research into EB using a so-called venture philanthropy model that essentially aims to create a recurring donation stream by applying some of the principles of investing. Using this model, the foundation has funded 160 research projects and helped accelerate the growth clinical trials, with over 50 now in progress, up from two when the organization started, according to the group’s website.

Michael Hund, CEO of EB Research Partnership, said “Matter of Time” “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 rare diseases,” Hund siad.

The documentary is produced by Door Knocker Media in association with Vitalogy Foundation. Karen Barzilay is also a producer.

It is set to premiere at the 24th Tribeca Festival on Thursday, June 12, per a lineup announced on Wednesday.

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