NEW YORK--(BUSINESS WIRE)--Eddie Vedder will be playing 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). To support the cause and get access to the show(s), visit give.ebresearch.org/seattle
On October 22nd, ahead of these exclusive Eddie Vedder shows, EB Research Partnership will host the inaugural Venture Into Cures Summit and Dinner at Benaroya Hall and Chihuly Garden & Glass Museum. The Summit and Dinner will bring the patient community and world leading thinkers together to discuss how we can accelerate treatments and cures for EB and rare disease at large.
These immersive events will celebrate innovative leaders and inspire change makers to accelerate much needed treatments and cures for those battling EB – and the entire rare disease community.
EB is a life-threatening genetic disorder that affects approximately 500,000 people worldwide. Called “Butterfly Children” because their skin is as fragile as the wings of a butterfly, children with EB face severe pain, open external and internal wounds, and a grueling daily bandaging process. There is currently no cure for EB, however EBRP’s innovative Venture Philanthropy Model is helping to fast-track not only a cure for EB, but therapies that could affect thousands of other rare diseases.
“As an organization, we’re working relentlessly to deliver a cure for all families battling EB 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. 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, CEO of EB Research Partnership.
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 EBRP was founded in 2010, there’s been incredible impact both for awareness of the disease and the viability of a cure. 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,” says Jill Vedder, Co-Founder of EB Research Partnership.
Over the last 3 years, EBRP’s flagship Venture Into Cures digital event has reached millions and raised more than $6 million to fund EB research. Since 2010, EBRP has made remarkable strides, including…
- Raising $50M+ for life-saving research
- Contributing to a 20x growth in EB clinical trials
- Helping to fund the first-ever FDA approved treatment and topical gene therapy for EB families
“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 in May 2023. It is the first approved gene therapy for EB. It is also the first redosable gene therapy, and the first to be applied directly to the skin. This is a masterclass in Venture Philanthropy – how patient groups can lead with strong business strategy and bring together a diverse array of stakeholders in healthcare around a singular mission. It is exactly the kind of innovation, collaboration, and impact we hope to see more of in the rare disease space,” says Dr. Greg Licholai, who serves as Chief Medical & Innovation Officer at ICON, teaches at Yale University School of Management and is a Board Member at EB Research Partnership.
For more information on how to donate, secure tickets and get involved, visit give.ebresearch.org/seattle
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
