The Extraordinary Ensemble United in the Epic Race to Save the Butterfly Children
L to R: Michael Hund, Jill Vedder, and Eddie Vedder of Pearl Jam
Never before has such a diverse community of supporters banded together, propelled by a single, urgent mission. From music, sports, and film stars to big tech, biotech, and business leaders; hedge funds and venture capitalists to philanthropists, academia, entrepreneurs, and millions of people across the globe, this extraordinary ensemble’s unified mission has grown into a worldwide anthem: To save the Butterfly Children.
Led by Michael Hund, the CEO of EB Research Partnership (EBRP), it’s an anthem fueled by innovation, philanthropy, and the unyielding spirit of humanity carried by the momentum of a symphony of voices from concert halls to boardrooms, from Main Street to Wall Street, together in a race to find a cure for Epidermolysis Bullosa (EB), a rare, life-threatening, and heart-wrenching pediatric skin disorder that affects 500,000 people—mostly children—that causes the skin to blister and tear easily. They are called "Butterfly Children" because their skin is as fragile as a butterfly's wings. They are little dreamers with boundless imaginations. They are inquisitive, they are loving, they are kindhearted. They are the bravest little warriors on the planet who endure unfathomable pain—and they are the center of a global effort to give them a chance to fly.
Founded in 2010 by a group of dedicated parents along with Jill and Eddie Vedder (Pearl Jam), EBRP is the largest global funder of innovative Epidermolysis Bullosa (EB) research and development with a mission to rapidly accelerate treatments and achieve a cure by 2030. Their list of supporters reads like a roll call of the world’s most recognized names who know it is not a question of “if” a cure for EB will be found, it’s only a matter of “when.” The hope of “when” just rang out louder than ever with a monumental breakthrough.
L to R: Actor, Tom Holland with Michael Hund
A Historic High Note of Hope: First-ever FDA-approved treatment for EB, hope for all rare diseases
In May 2023, Krystal Biotech's VYJUVEK™, the world's first-ever therapy for the treatment of Dystrophic Epidermolysis Bullosa (DEB), a rare and severe form of EB, secured FDA approval. This is not only the first-ever FDA-approved treatment for those battling DEB, but also the first FDA-approved topical, redosable gene therapy—and watershed moment that marks not only a groundbreaking a scientific achievement but the power of EBRP’s innovative venture philanthropy business model. “More than 300 million people around the world are affected by a rare disease, yet 95% of rare diseases lack an FDA-approved treatment. Now, with an FDA-approval, EB warriors and our community proudly cross into the 5%,” says Michael, who has spent his career dedicated to transforming health care for those battling disease, previously serving at the Multiple Myeloma Research Foundation and the actor Paul Newman’s Hole in the Wall Gang Camp. “Having worked in service to the patient community for 20 years, these are the wins that we relentlessly fight for every day. And tomorrow, we will get up and continue fighting until there is a treatment for every patient and we achieve our goal of a cure” he adds.
Venture Philanthropy—Redefining the Score of Medical Research
EBRP’s Venture Philanthropy business model has been highlighted for its leadership by Harvard Business School, Yale University, and MIT in helping to fast-track not only a cure for EB but therapies that could affect thousands of other rare diseases. 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. Since inception, EBRP has raised over $50M, funded over 120 EB projects and contributed to an astounding 20-fold growth in EB clinical trials.
EBRP invested in Krystal Biotech in 2017, shortly after Krystal Biotech’s initial public offering of common stock. The investment was made via a private placement of Krystal Biotech’s common stock, and as part of the stock purchase agreement, Krystal Biotech committed to commence a Phase I clinical trial of VYJUVEK. The funding followed the highly competitive application and screening process overseen by EBRP’s Scientific Advisory Board (SAB), which is composed of leading scientists and physicians. EBRP was able to generate a more than double return on its investment and reinvest that capital back into more EB projects. But their goal extends beyond EB. “A rising tide lifts all boats, and we feel a responsibility to take what we've learned and share it with the rare disease community to accelerate their goals to deliver hope and healing for the communities they serve,” Michael shares.
Venture Into Cures—3 Events, 3 Years, over $6M Raised by a Symphony of Supporters Committed to Finding a Cure
Over the past three years, a constellation of celebrities has joined together in this inspiring digital event that has raised incredible awareness and funds for EB: Eddie and Jill Vedder, Billie Eilish, Will Ferrell, Tom Holland, John Legend, Chris Pratt, Keanu Reeves, Olivia Rodrigo, Emma Watson, Red Hot Chili Peppers and more. But the rhythm didn’t stop there, with support carried by forward by philanthropic giants and foundations like the Deshe Family, Helmsley Charitable Trust, Hearst Foundations; biotech heavyweights Krystal Biotech, Abeona, and Amryt; and corporate titans like Amazon Web Services, CIBC Innovation Banking, Jefferies, and Deloitte. “Through the ongoing support of the Venture Into Cures' audience, donors and the patient and medical communities, we will continue to fund the most innovative and impactful global research, and we will not rest until we find a cure for EB and beyond,” says Michael.
CEO — EB Research Partnership