Celebrity Virtual Event Raises $2.4M for EB Research
The “Venture into Cures” virtual event raised more than $2.4 million to benefit the EB Research Partnership (EBRP), an organization dedicated to funding research into treatments and ultimately a cure for epidermolysis bullosa (EB).
This second annual event, hosted by actor Tom Holland on Nov. 18, featured a celebrity lineup, and stories about individuals and families living with EB.
“I have never seen resilience and bravery like I’ve seen in the stories of those living with EB,” Holland, who has been playing Spiderman, said in a press release. “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.”
EB affects approximately a half-million people globally. This group of rare skin disorders leads to extraordinarily fragile skin that blisters and tears easily. As a result, patients experience pain, open external and internal wounds, and daily use of dressings. Children with EB are called “Butterfly Children” because their skin is as fragile and delicate as butterflies’ wings.
EBRP was co-founded in 2010 by a group of dedicated parents, the Silver and Fullmer families, along with Jill and Eddie Vedder. Having heard that her friend, Ryan Fullmer, had a child with EB, Jill Vedder brought her husband on board, whose fame as the lead singer of the rock band Pearl Jam and celebrity connections have been instrumental in supporting research for this genetic disease.
Since its inception, ERBP has raised $40 million to fund 100 projects, starting with two clinical trials in 2010 to now more than 32. This progress includes four Phase 3 clinical trials seeking the first approved EB treatment.
Holland and his family’s own nonprofit, The Brothers Trust, has dedicated time and resources to help raise money and awareness for a variety of organizations, including EBRP.
This year’s one-hour event, produced by EBRP and Door Knocker Media, drew more than 150,000 viewers, and included appearances by Fred Armisen, James Arthur, Kristen Bell, Mayim Bialik, Jack Black, Carrie Brownstein, Brandi Carlile, Sofia Carson, Choir!Choir!Choir!, Pete Davidson, and Robert Downey Jr.
Other celebrity participants included Selena Gomez, Gonzo from The Muppets, The Jonas Brothers, Bill Maher, Gaten Matarazzo, Pearl Jam, Catherine O’Hara, Ed Sheeran, Martin Short, Zendaya. and Vedder, who debuted new songs at the event.
The event streamed live through Brandlive and is now available for replay on EBRP’s YouTube channel.
Some of the highlights included a bad joke challenge, #EBIsNoJoke, featuring Kristen Bell, Jack Black, The Jonas Brothers, and others. Another highlight was Ed Sheeran performing a song called “Overpass Graffiti” from from his new album “=”.
Mayim Bialik interviewed Andrew South, PhD, and Jean Tang, MD, PhD, two scientists working on developing EB therapies. Jackson Silver, an EB patient, also shared a virtual adventure with Gaten Matarazzo, who plays Dustin Henderson on the television series Stranger Things. Selena Gomez shared the challenges and views of Mary Haddad, a young woman with EB.
In a recent video interview with Epidermolysis Bullosa News, Michael Hund, CEO of EBRP, said the success of the first virtual event last year warranted future virtual or hybrid events.
“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,” Hund said.
“The support from Venture into Cures will be put to immediate use to fund the most innovative and impactful research across the globe,” Hund said.
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