On November 18, EB Research Partnership (EBRP) presented Venture Into Cures, an inspiring virtual event featuring moving stories about individuals and families living with Epidermolysis Bullosa (EB).

Host Tom Holland joined EBRP co-founders Jill and Eddie Vedder and a lineup of celebrity friends, helping to raise over $2.4 million for EBRP, moving the organization closer to finding a cure for EB and leading the way for other rare diseases.

More than 150,000 people tuned in to watch the special that included appearances by Fred Armisen, James Arthur, Kristen Bell, Mayim Bialik, Jack Black, Carrie Brownstein, Brandi Carlile, Sofia Carson, ChoirChoir!, Pete Davidson, Robert Downey Jr, The Finns, Selena Gomez, Gonzo from The Muppets, Lily Hevesh, Tom Holland, Jim Jefferies, Jack Johnson, The Jonas Brothers, Charlotte Lawrence, Bill Maher, Gaten Matarazzo, Lamorne Morris, Pearl Jam, Catherine O’Hara, Ed O’Neill, Ed Sheeran, Martin Short, Scott Van Pelt, Jill and Eddie Vedder, Zendaya, and more.

The one hour virtual show was produced by EBRP and Door Knocker Media, with artist booking by one twenty eight. Venture Into Cures streamed globally through official streaming partner Brandlive and is available for replay on EBRP’s YouTube channel. The event’s Title Sponsors included ELONGATE Cryptocurrency and Amazon Web Services (AWS).

“I have never seen resilience and bravery like I’ve seen in the stories of those living with EB,” said Tom Holland, actor and host of Venture Into Cures. “I play a superhero in movies, but these kids and families are the true superheroes – they face impossible hardships every day, yet they keep pushing forward. We owe it to them to continue the race toward finding a cure for EB and other rare diseases.” The Holland family’s foundation, The Brothers Trust, has dedicated time, resources, and funding to help children and families battling EB.

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 treatment or 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.

Co-Founded by a dedicated group of parents, the Silver and Fullmer families, along with Jill and Eddie Vedder, EBRP is the largest global organization supporting EB research, having raised $40 million to fund 100 projects, helping transform the EB landscape from two clinical trials in 2010 to more than 32 in 2021. This progress includes four Phase III clinical trials, the final phase before approval by the FDA, bringing the possibility of the first approved treatment for EB to the horizon.

“Our team is accelerating the trailblazing advances in the lab directly to the bedsides of patients living with EB, at the speed of light. Curing EB is not an “if”, it’s a “when”. Together, we will heal EB and in the process, pioneer a new model for all rare diseases. The support from Venture into Cures will be put to immediate use to fund the most innovative and impactful research across the globe," says Michael Hund, CEO of EBRP.

Learn more about the life-changing work of EBRP at www.ebresearch.org.

comments powered by Disqus

Latest news

Playing For Change Foundation Announces Playing for Frances Iconic Artist Charity Auction

Playing For Change Foundation Announces Playing for Frances Iconic Artist Charity Auction Feb 29, 2024

Playing For Change Foundation (PFCF), esteemed for amplifying local impact zones through music and community support, is rallying behind 12-year-old Frances Gourley. More
More news