EB Research Partnership and Jill and Eddie Vedder raised over $5M to benefit life-saving rare disease research

News provided by

Nov 14, 2023, 07:00 ET

EB Research Partnership hosted the Venture Into Cures Summit alongside two Eddie Vedder shows in Seattle to support their mission of curing EB and other rare diseases.

NEW YORK, Nov. 14, 2023 /PRNewswire/ -- Eddie Vedder played two intimate concerts in his hometown of Seattle at Benaroya Hall on October 23rd and 24th to bring support to a cause that is near to his heart – EB Research Partnership (EBRP). Alongside the emotional shows, EBRP hosted its first in-person Venture Into Cures Summit and Dinner.

Update: Deanna Molinaro, pictured above, passed away from Recessive Dystrophic EB on November 9, 2023. Unfortunately, loss is a reality for those in the Epidermolysis Bullosa community, which continues to reaffirm EB Research Partnership’s urgent goal to cure EB by 2030.

Founded in 2010 by a group of dedicated parents, Jill Vedder, and Eddie Vedder of Pearl Jam, EB Research Partnership (EBRP) is the largest 501(c)(3) nonprofit funding research aimed at finding a cure for Epidermolysis Bullosa (EB). Since inception, EBRP has raised over $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.

Over 3 days, Eddie Vedder and EBRP gathered nearly 5,000 people and raised over $5 million to fund life-saving research focused on accelerating treatments and cures for EB and beyond.

"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. 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," says Eddie Vedder, Pearl Jam lead singer and Co-Founder of EBRP.

The events kicked off early on the morning of October 22nd 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. Panels featured visionaries in the patient community alongside industry leaders including Nicholas Christakis, MD, PhD, MPH, social scientist and physician at Yale University, Eric Hargan, Former Secretary of the U.S. Department of Health and Human Services (HSS), Greg Licholai, MD, Chief Medical & Innovation Officer and President of Symphony Health at ICON plc., Eleni Linos MD, MPH, DrPH, Director of the Center for Digital Health at Stanford University, and Dan Sheeran, Director, Health Care and Life Sciences at AWS.

"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. This was achieved beyond what we could have ever imagined. We're inspired because this event 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. 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," says Michael Hund, Chief Executive Officer of EBRP.

On the evening of October 22nd, the patients, families, medical experts and supporters were invited to the Chihuly Garden & Glass to enjoy art, comedy, a live auction, and more. The Venture Into Cures Dinner was not short on special moments; guests were welcomed by none other than "The Mayor" of Major League Baseball, Sean Casey, and enjoyed some comedy by the Roastmaster General, Jeff Ross. They also got to enjoy a private viewing of the museum, participate in a live auction, and even experienced an impromptu karaoke moment featuring leading EB researcher, clinician and recipient of the EBRP Butterfly Leadership award, Dr. Jean Tang along with Eddie Vedder.

After hours of learning, connection, and fun at the Venture Into Cures Summit & Dinner, the group continued on to raise awareness and funds for EBRP at two Eddie Vedder shows at the iconic Benaroya Hall. Eddie Vedder beautifully weaved compelling stories and information about the cause throughout the shows including video content, speeches, and shout outs. The legendary singer dedicated a special rendition of "Imagine" after fans requested it during the show and "Won't Back Down" to the brave EB community. He also screened educational EB patient stories and played "Say Hi" which was inspired by Eli Meyer, a young boy living with EB, who was in the crowd.

"Seeing our community come together in person has filled me with such pride, joy, gratitude and most importantly hope. The EB community showed up in an epic way. The patient warriors, doctors, scientists, professors, biotech geniuses, artists, comedians, and families navigating this disease were all shining bright in Seattle! There is power in people coming together for a good cause. So, thank you to everyone who has stood by us and believed in us. I feel more confident than ever – we can cure EB. We can make an impact for the millions out there battling a rare disease," said Jill Vedder, Co-Founder and Chairwoman at EBRP.

For more information on how to donate, support the cause and get involved, visit ebresearch.org

You can follow @ebresesarch on Instagram, Facebook, LinkedIn and Twitter.

About EB Research Partnership

Founded in 2010 by a dedicated group of parents and Jill and Eddie Vedder, EB Research Partnership (EBRP) is the largest global nonprofit dedicated to funding research aimed at treating and ultimately curing Epidermolysis Bullosa (EB), a group of devastating and life-threatening skin disorders that affect children from birth.

Working around the clock with offices in the US and Australia, EBRP utilizes an innovative Venture Philanthropy business model. When making a grant to a research project, they retain the added upside of generating a recurring revenue stream if the therapy or product is commercially successful, then use the return on investment to fund additional EB research until a cure is found.

To learn more, visit www.ebresearch.org

SOURCE EB Research Partnership