EB Research Partnership raises more than $5M in October

Since its founding in 2010, EBRP has brought in more than $50M for research

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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EB Research Partnership (EBRP), an organization dedicated to funding research into treatments for epidermolysis bullosa (EB), has raised more than $5 million through a three-day series of events in October.

The outcome is “beyond what we could have ever imagined,” Michael Hund, CEO of EBRP, said in a press release.

EBRP hosted its inaugural Venture Into Cures Summit and Dinner on Oct. 22, bringing together EB patients, researchers, and others to discuss the vision of one day finding a cure, and to share resources and support for people living with EB. The event also featured a private viewing of the Chihuly Garden and Glass exhibit, a live auction, impromptu karaoke, and comedy.

“The team at EBRP has been dreaming up this event for a very long time,” Hund said. “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.”

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The following two days, Eddie Vedder, the lead singer of the rock band Pearl Jam, hosted concerts to fundraise for the organization in his hometown of Seattle. Vedder co-founded EBRP in 2010 with his wife, Jill, and a group of dedicated parents.

“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,” Vedder said. “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.”

“There is power in people coming together for a good cause,” added Jill Vedder, co-founder and chairwoman of EBRP. “I feel more confident than ever — we can cure EB. We can make an impact for the millions out there battling a rare disease.”

Since its inception, EBRP has raised more than $50 million and funded more than 120 research projects to help improve care and treatments for EB. The events in October drew nearly 5,000 people in total, and Hund said it “is just the beginning.”

“For the patient community, Venture Into Cures has brought them new information, created new friendships and support networks, and reinvigorated their hope for the future,” he said. “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. We’re very thankful for Jill and Eddie’s leadership to unite our community in Seattle as we continue on our venture into cures, for EB and beyond.”