Eddie Vedder lends his support to 1st Venture Into Cures Summit

Pearl Jam's lead vocalist to perform 2 concerts for EBRP Oct. 23-24 in Seattle

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by Mary Chapman |

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Eddie Vedder of the rock band Pearl Jam will perform two concerts to support EB Research Partnership (EBRP) following its inaugural Venture Into Cures Summit and Dinner, set for Oct. 22 in Seattle, Washington.

The organization funds research into treatments for epidermolysis bullosa (EB), a group of rare skin disorders estimated to affect about 500,000 people worldwide. The disorders result in fragile skin that easily blisters and tears.

Vedder, a Seattle native and an EBRP founder, will play exclusive shows on Oct. 23-24 at Benaroya Hall. Concert sponsorships, which also provide summit access, start at $5,000.

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Summit will take place at Benaroya Hall in Seattle

The summit, which also takes place at Benaroya Hall, will bring together the patient community and innovative leaders across research, technology, and other fields globally to discuss how to accelerate treatments and cures for rare diseases, specifically for EB. The event will be followed by an awards dinner at Chihuly Garden and Glass museum.

EBRP uses a sustainability-based venture philanthropy model, which allows it to generate revenue for additional EB research, helping to fast-track treatment development. Current epidermolysis bullosa treatments focus on preventing blisters or managing wounds caused by the condition. The organization seeks to find an EB cure by 2030.

“We’re making extraordinary progress and in the process, our model is pioneering a path for the hundreds of millions battling rare diseases worldwide,” Michael Hund, EB Research Partnership CEO, said in a press release. “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.”

The EBRP was founded 13 years ago by Vedder and his wife, Jill, along with their childhood friend Ryan Fullmer, whose son was born with EB. Since then, more than $50 million has been raised for research, contributing to an increase in EB clinical trials by 20 times.

Over the last three years, the organization’s flagship Venture Into Cures digital event has raised more than $6 million for EB research.

“Since EBRP was founded in 2010, there’s been incredible impact both for awareness of the disease and the viability of a cure,” said Jill Vedder. “It has been beautiful to see so many people around the world rally around this cause through our Venture Into Cures events.”

“In hosting events like this, our goal is to inspire people to take action and raise awareness and funds for life-saving research. Most importantly, we want to celebrate the bravery of people living with EB and the brilliant research being done in this space,” she added.

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EBRP-funded research helped lead to federally approved gene therapy Vyjuvek

EBRP-funded research helped lead to Vyjuvek (beremagene geperpavec), the first gene therapy federally approved for the treatment of wounds in those with dystrophic epidermolysis bullosa.

“The speed and scientific judgment of EBRP allowed for funding of a first-of-its-kind topical gene therapy for EB that was approved by the FDA [Food and Drug Administration] in May 2023. It is also the first redosable gene therapy, and the first to be applied directly to the skin,” said Greg Licholai, MD, chief medical and innovation officer at ICON, a multinational clinical research organization, and an EBRP board member.

“This is a masterclass in Venture Philanthropy — how patient groups can lead with strong business strategy and bring together a diverse array of stakeholder in healthcare around a singular mission,” Licholai added. “It is exactly the kind of innovation, collaboration, and impact we hope to see more of in the rare disease space.”