When Matter of Time finished rolling on June 12, the Tribeca Festival crowd sat stunned. Eyes wet. Hearts broken. Then Eddie Vedder stepped into the silence, acoustic guitar in hand and true to form, he cracked a joke, before breaking every heart in the room with his upcoming set. “That was a quick five-minute changeover,” he grinned. “That was very Saturday Night Live and it’s only Thursday.”
But this wasn’t sketch comedy. This was real life for the “butterfly children” — kids whose skin is more fragile than butterfly wings. Skin that tears from a hug. Pain that never ends. Lives wrapped in bandages. This was science racing time. Suffering, survival and holding onto hope when everything else lets go.
Matter of Time tells the story of Epidermolysis Bullosa (EB), a rare and savage genetic disorder that turns the act of living into a daily trauma. Friction causes blisters. Wounds don’t heal. Skin slips off like fruit peeled too early. Some kids don’t make it to adulthood. Some don’t make it out of infancy.
This is the monster Vedder and his wife, Jill, are fighting through their EB Research Partnership. The film braids their mission with breakthrough science and footage from two Seattle benefit concerts where music met the moment in 2023.
After the credits rolled, the stage filled with impact players. Dr. Jean Tang, whose research just led to FDA approval for a groundbreaking gene therapy. Jill Vedder. EBRP CEO Michael Hund. A young patient named Rowan and her mother, Kate.
Rowan, wide-eyed and beaming, stole the room with one line: “We need the cure, I’ve been waiting eight years!” she said. “But thank you for your science stuff.” There wasn’t a dry eye left in the theater.
As the crew reset for the acoustic set, Vedder stepped back under the spotlight but didn’t try to steal it. “I’ll take a backseat to rock star Jean Tang any day,” he said a little bit later. “It wasn’t quite as loud as the ovation that science got and I couldn’t be happier about that.”
The crowd included familiar faces. Legendary lens master, Danny Clinch, a couple rows up. Meg Ryan sat nearby, quietly taking it all in. In the mix, the writer of this piece — press ticket in pocket, but no photo pass. No pro gear on this night. Only a handheld camera and the need to capture moments that mattered. Scrappy. Discreet. There to feel it, absorb it and try to put it into words.
What followed was one of the most raw and vulnerable sets Vedder’s ever given. He opened with Warren Zevon’s “Keep Me in Your Heart,” as a slow stream of EB children lit the screen behind him. Fragile, radiant, unbreakable. Then came a surprise.
“I’m gonna play one I didn’t think I was gonna play,” he said, easing into Tom Waits’ “Picture in a Frame” after asking the crowd’s permission. They clapped. “If I f–k it up,” he smiled, “you don’t really have to tell anybody.”
Eddie was joined on stage for Glen Hansard’s, “Song of Good Hope,” handing over guitar duties, so he could focus on the lyrics. Then came “Porch,” where Vedder fumbled a transition and laughed. “I think I just messed that up!” Nobody cared. The crowd was invested.
“This is a wave,” Vedder said. “You gave us a way to ride the surfboard of hope.” That wave is what the film is really about. Yes, there are Pearl Jam songs like “River Cross” and “Better Man,” but the emotional epicenter is a boy named Eli. Vedder called him his “friend, teacher and hero.” The song he wrote for him, Say Hi, lands harder than any riff.
Jill Vedder didn’t hold back during the panel. “There was nothing then. Today, there are three FDA-approved treatments. It really feels like a cure can happen in our lifetime.” She turned to the families and said, “Thank you for trusting us. We asked a lot, and you gave everything.”
Vedder closed with “Last Kiss” and “I Won’t Back Down,” the Tom Petty anthem threaded throughout the film. The final standing ovation wasn’t just for him. It was for the science. For the stories. For the kids. It was for the hope that refuses to die. “Much love,” Vedder said quietly, and walked offstage.
This wasn’t just a film premiere, nor was it just a concert. It was proof, that music can amplify what the world tries not to see. That science can catch up to love. That when the spotlight lands where it’s needed most, invisible pain doesn’t stay invisible for long. Because for kids with butterfly skin, there’s no time to wait.
Setlist: Keep Me in your Heart (Warren Zevon cover), Picture in a Frame (Tom Waits cover), Song of Good Hope (Glen Hansard cover), Porch, Last Kiss (Wayne Cochran cover), I Won’t Back Down (Tom Petty cover)
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