Eddie Vedder’s Quest to Help Cure a Rare Disease Subject of New Documentary
(Image from YouTube courtesy of EBRP)
Famous Pearl Jam frontman Eddie Vedder has decided to lend his star power to efforts to cure a rare skin disease.
Inspired to take action after a family friend’s child was born with the malady, Vedder’s work leveraging the fame and draw of his shows for curing epidermolysis bullosa (EB) has been turned into a “powerful” upcoming documentary set to debut at Tribeca Film Festival in June.
Called Matter of Time, a string of 2023 benefit gigs in Seattle are the backdrop to the film which focuses on EB Research Partnership (EBRP) and its work in finding a cure for this disease that affects just 10 children out of 1 million.
Children with EB are often called “butterfly children” or are said to have the “butterfly skin disease,” referring to the delicateness of their skin membrane. Living with EB leads to large skin blistering, erosions, and ulceration, leading to increased risk of infection, rampant scarring, and skin cancer, and is a strong cause of infant and child mortality.
According to the NIH, 16 genes have been implicated in underpinning at least 30 observed epidermolysis bullosa subtypes. Each subtype features varying phenotypic severity and risk of morbitity and death, but Vedder believes a cure can be found.
“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.”
According to that news release, Matter of Time “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.”
“It’s amazing to witness how far we’ve come,” said Jill Vedder, Eddie’s wife. “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.”
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Debuting at Tribeca in June, the proceeds of the concerts were donated to EBRP, the CEO of which is confident that with the help of people like Vedder and other “venture philanthropists,” cultural forces like film and music can be the engine that drives forward the search for a cure.
“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,” CEO Michael Hund told CNN.
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The so-called venture philanthropy model has allowed EBRP to increase the number of clinical trials in progress from 2 to 50, as the organization looks for ways to create an effective treatment or cure: potentially through gene therapy.
WATCH the story of EB’s mission… (NOTE: Video May be Too Sad for Sensitive Souls.)
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