Pearl Jam frontman Eddie Vedder is embarking on a new project, one that pulls the heartstrings even more than any music he or his band have produced. At Sunday night’s show at Xcel Energy Center in St. Paul, Minnesota, Vedder turned the spotlight on a heartbreaking genetic disorder, epidermolysis bullosa (EB), inviting a leading researcher onstage to discuss the condition and the work being done to treat it.
While Pearl Jam’s members have both collectively and individually taken on a number of notable causes and activism platforms, EB stands alone in its severity. The debilitating condition prevents layers of a person’s skin from meshing together the way they should, resulting in painful blistering from which disfiguring scar tissue forms. Informed of the condition, Vedder and PJ guitarist Stone Gossard were given a tour of the university’s facilities, and the duo were moved by the experience enough to get more involved.
During the show, Vedder introduced the Dr. Jakub Tolar, a University of Minnesota doctor who leads the university’s research into rare genetic disorders, including EB. The university’s Stem Cell Institute, led by Tolar, has made great strides in treating the condition, but is still badly in need of funds. Vedder also reportedly changed the lyrics of PJ’s classic track “Corduroy” to reflect the need to aid the EB efforts, and went out of his way to honor a 7-year-old EB patient named Mikey Fullmer, who made a wristband out of his gauze bandages and gave it to the singer. Inspired, the band’s WishList Foundation distributed similar wristbands to concertgoers in a successful attempt to raise EB awareness.
The University of Minnesota Masonic Children’s Hospital tweeted a photo of Vedder visiting with young patients:
What really matters
We expect to be entertained and enthralled by our musical heroes, and most of us are understandably reluctant to have the fun impeded by a “cause” or some kind of plea for action that requires personal investment, whether by funds or focus. But less than a minute into this 3-minute clip, it’s painfully obvious why PJ’s efforts with EB are a desperate exception to the rule.
Mikey Fullmer is one of three individuals living with EB depicted in the video, in which Vedder explains his personal investment in the cause. “It’s about the most insane skin disorder you could imagine,” Eddie says. “And when you realize it also affects the internal organs, you see it as diabolical.”
“Listen, guys, you should all give money so we can cure EB forever,” Fullmer says in the clip, with enough tender vulnerability to make your heart explode. “And please do, or else EB won’t be cured forever.” Then his face brightens and he says “cut!” as tears stream down an untold number of cheeks on the other side of the screen.
If you’re able, if you’re up for it, every little bit helps. EBresearch.org
