Eddie Vedder’s first solo tour without Pearl Jam was a trial filled with doubts and on-stage mistakes. The turning point came from advice by Bruce Springsteen, who said that vulnerability while performing is not a weakness but a strength that can be harnessed. Nearly two decades later, Vedder applied that lesson at two sold-out benefit concerts in 2023 held in Seattle, the city that played a key role in shaping Pearl Jam’s sound and identity as part of the 1990s grunge movement. Those emotional performances took place at Benaroya Hall, known for its acoustics and frequent use for charity events, and were dedicated to finding a cure for a rare genetic skin disease — bullous epidermolysis (BE) — which forms the basis of the new Netflix documentary Matter of Time.
Bullous epidermolysis makes the skin so fragile that even light friction causes painful blisters and open wounds. In severe cases it can lead to serious complications, including skin cancer. There is no cure. It was to fund research and support patients that Eddie and his wife Jill founded the EB Research Partnership in 2010. The foundation collaborates with research institutes around the world, including institutions in Seattle and Washington state such as the Fred Hutchinson Cancer Center. “These kids feel seen and understood,” Vedder says. “They realize they don’t have to be feared.”
For Jill Vedder, who leads the foundation, the mission is deeply personal. She has attended funerals for children lost to the disease. The impetus for starting the organization came when she learned that the son of a childhood friend and co-founder of the foundation had been diagnosed with BE. “Every time I speak with these families I cry, because you can’t stay indifferent,” Jill shares.
Eddie Vedder has long been known for his philanthropic work. For example, he spent 15 years fighting for the release of wrongfully convicted teenagers known as the West Memphis Three. “Back then I thought we’d solve it in a couple of years, but it took patience,” the musician recalls. “Now we’re applying that patience again in our work with the foundation. You learn not only the science but the scientists, their dedication to the cause.”
The foundation’s CEO compares their progress to a butterfly effect: one small but powerful action can create a “monsoon” of change on the other side of the world. The documentary Matter of Time aims to be such an action, combining the power of Vedder’s music with personal stories of families to draw global attention to BE.
Despite active philanthropy, Eddie Vedder confirms that Pearl Jam, for whom Seattle remains a spiritual home, will continue making new music. “Right now we’re tighter as a band than ever,” he said. Thus, his artistic vulnerability on stage and undying hope in the fight against the disease continue hand in hand, inspiring fans around the world.
Based on: Eddie Vedder turns solo vulnerability into a powerful plea in Netflix’s ‘Matter of Time’