RARE Daily

Jill and Eddie Vedder Raise More than $5 Million to Benefit EB Research

November 15, 2023

Pearl Jam frontman Eddie Vedder played two concerts in his hometown of Seattle to raise more than $5 million to support EB Research Partnership, a nonprofit founded in 2010 by a group of parents including Jill and Eddie Vedder to fund research aimed at finding a cure for the rare, connective tissue disorder epidermolysis bullosa.

Since inception, EBRP has raised more than $50 million and funded more than 120 research projects around the world, transforming the clinical trial landscape by 20X and helping fund the first ever FDA approved treatment for EB.

“I am extremely humbled and grateful to be able to stand next to these heroic patients, parents, researchers, and doctors as we work together to find a cure for EB,” said Vedder. Sharing this mission and message with people around the world has filled me with extreme pride and hope. My wife and I have been working on this cause for over a decade and it is amazing to reflect on the progress that has been made. We can find a cure – the promise is real.”

The concerts were part of a series of events kicked off early on the morning of October 22 at Benaroya Hall for the Venture Into Cures Summit. Patients, leading researchers, and industry experts shared a vision for a future where there is a cure for EB, collaboration across institutions and support systems for any family battling a rare disease.

“The team at EBRP has been dreaming up this event for a very long time. The goal was to raise awareness, foster meaningful connections, and create a platform for the leading doctors, researchers, biotech companies, patients, and advocates to collaborate and be celebrated and heard,” said Michael Hund, CEO of EBRP. “For many, it served as a catalyst to reimagine what’s possible, to join us on this journey, to get involved with curing rare diseases.”

Photo: Eddie Vedder with Fine artist Deanna Molinaro during the event. Molinaro died from Recessive Dystrophic EB on November 9, 2023.

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