EB Research Partnership (EBRP) announces the second annual Venture Into Cures, an inspiring, virtual fundraising and awareness event airing November 18, 2021 at 8:00 p.m. ET/ 5:00 p.m. PT.
Hosted by actor Tom Holland, the show will feature moving stories about individuals and families living with Epidermolysis Bullosa (EB), alongside appearances and performances from a lineup of celebrity supporters, to educate viewers about EB and raise critical funds to support 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.
“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 one-hour show will bring together world-renowned speakers and inspiring performers to help raise awareness and funds towards finding a cure for EB. Produced by EBRP and Door Knocker Media, with artist booking by one twenty eight, Venture Into Cures will stream globally for free via an exclusive virtual event experience through the official streaming partner Brandlive, at www.ventureintocures.org. A full list of other streaming sites can be found further below. The event’s Title Sponsors include ELONGATE Cryptocurrency and Amazon Web Services (AWS).
The initial list of appearances and performances, announced to date, includes:
Host: Tom Holland.
Appearances: Fred Armisen, Mayim Bialik, Jack Black, Carrie Brownstein, Pete Davidson, Lily Hevesh, Selena Gomez, Gonzo from The Muppets, Jim Jefferies, The Jonas Brothers, Bill Maher, Gaten Matarazzo, Lamorne Morris, Catherine O’Hara, Ed O’Neill, Martin Short, Scott Van Pelt, Jill and Eddie Vedder and more.
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 along with Jill and Eddie Vedder, EBRP is the largest global organization supporting EB research, having raised $40 million to fund 94 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 to EB to the horizon.
“Now is a critical moment in time when life-saving EB therapies are becoming not an ‘if’, but a ‘when’,” said Michael Hund, CEO of EBRP. “With the current momentum, adequate financial resources, and our innovative venture philanthropy model, we are putting speed into delivering treatments and cures for those living with EB. In the process, we are pioneering a model to accelerate treatments and cures for EB and the 7,000 rare diseases that affect 10 percent of the global population.”
Last year’s inaugural Venture Into Cures virtual event attracted over 500,000 viewers and raised more than $2 million to fund EB research.