Eddie Vedder uses two emotional solo concerts and a new Netflix film to push for a cure for epidermolysis bullosa.
Vedder described Springsteen’s advice as a North Star that stuck with him. Nearly two decades later, he leaned into it when he took the stage for two sold-out solo shows in October 2023 at Seattle’s Benaroya Hall.
“I remember kind of swimming through it and almost having a psychedelic experience,” he said. “I was so emotional, but I had to keep it together just to play properly.” The emotional performances were part of a fundraiser to find a cure for epidermolysis bullosa, a rare and debilitating genetic skin disorder. A new Netflix documentary “Recently, Vedder and his wife, Jill, spoke to The Associated Press about the documentary and thethat they started in 2010 to bring awareness and financial support to finding a cure. The rare genetic disorder makes the skin so fragile that even minor friction can cause painful blisters and open wounds. In severe cases, ongoing damage can lead to serious complications, including skin cancer. There is no cure, but groups such as the EB Research Partnership fund research and work to develop effective treatments and awareness. “The kids are feeling seen and understood,” Vedder said. “They realize they’re not something to fear, and that they’re not contagious. The only thing contagious about these kids is their hope." During the shows, Vedder primarily accompanying himself on acoustic guitar, but he also shifted at times to electric guitar and piano, adding texture and range to the set. While he performed many Pearl Jam favorites, including “Better Man,” “Porch” and “Wishlist,” it was “Just Breathe” that seemed to expose his vulnerability as it carried the deepest emotional resonance of the set. For Jill Vedder, chairwoman of the EB Research Partnership, the mission is not just professional but deeply personal. She has attended funerals for children lost to the disorder and holds space for both grief and hope. “Every time I spend time with these families, I end up in tears because it’s hard to keep it together,” she said. Jill Vedder became the driving force behind the foundation after learning that her childhood friend and co-founder, Ryan Fullmer, had a son born with EB. What started as a deeply personal effort soon evolved into a mission with global impact. Eddie joined to help elevate the cause. Eddie Vedder, long committed to philanthropy, has supported a wide range of social and charitable causes throughout his 35-year career with Pearl Jam.West Memphis Three,“I thought we could solve it in a few years," Vedder said,"but it took patience to get three men out, one on death row.”“Now we’re using that patience once again... You learn about the science, but also about the scientists, their drive, devotion, and the toll it takes. It’s more than passion; it’s a commitment to care and persevere," Vedder said. According to the foundation’s CEO, Michael Hund, who joined in 2017, their progress reflects the butterfly effect: “One small but powerful action, like a butterfly flapping its wings, can build enough force to create a monsoon halfway around the world. That’s the journey of this organization.” Toward the end of the performances in the film, Eddie Vedder noted that 33 years to the day earlier, the band that would become Pearl Jam played its first show just down the street at The Off Ramp.As for what's next, Vedder said there will be more Pearl Jam music. “We really are more of a group now than ever,” he said. Copyright 2026 The Associated Press. All rights reserved. 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