By Abby Schultz

A nonprofit organization aiming to find a cure for a group of rare genetic skin disorders known as Epidermolysis Bullosa before the end of the decade is gaining ground on its goal by acting like a venture-capital firm instead of a charity.

The Epidermolysis Bullosa Research Project, co-founded by Pearl Jam's lead singer Eddie Vedder and his wife, Jill, can boast about contributing to three FDA-approved treatments for the disease -- often called by its acronym EB -- to 189 research projects, and to contributing to a 25-times growth rate in clinical trials for the rare disease.

Two of the FDA-approved treatments, Krystal Biotech's Vyjuvek (a topical gene therapy), and Abeona Therapeutics' Zevaskyn, (a cell-based gene therapy developed at Stanford University) were directly funded by EBRP's venture model, in which the organization expects a financial return that it can plow back into more research toward treatment and a cure before the end of the decade.

The urgency of finding not just treatments, but a cure for this devastating set of diseases is palpable. EB deprives people of proteins that bind the skin's two layers, leading to painful, disfiguring wounds on the skin and potentially internal organs. Those afflicted with the disease may not live past age 30.

What this disease is about, and the urgency of finding a cure, is getting wider recognition with Netflix's Feb. 9 release of Matter of Time, an award-winning documentary about the community of EB advocates and supporters that features two sold-out Seattle shows by Vedder in October 2023. Jill Vedder has a close friend whose son was born with the disease.

The film, directed by Matt Finlin, made its debut at New York's Tribeca Film Festival in October 2025 and later picked up awards at the Nashville Film Festival and the San Diego International Film Festival, before a 40-theater release late last year. It's already raised $4 million for the nonprofit, a 10-times return on its $400,000 investment, Michael Hund, EBRP's CEO said in an interview. "It exceeded our most ambitious expectations," Hund says.

Although EBRP acts as a venture capital investor, a more appropriate description is venture philanthropy.

"The biggest problem in medical research and arguably even more so in rare diseases is what we call the valley of death -- most medical research will not get out of a university or lab into a clinical setting, i.e. a phase one clinical trial," Hund says.

"We see our role almost as an angel or early seed investor of de-risking early stage investments to get them into the clinic and let the market, meaning a larger commercial party, carry it forward to something like an FDA approval," he says.

EBRP came to this strategy after seeing some of its early investments reap commercial returns for others, or seeing projects they invested in sit on the shelf at a biotech or pharmaceutical company. Now "every penny that we put out the door is under a venture capital or a venture philanthropy agreement," Hund says.

The organization has also gone beyond a pure venture philanthropy model to "take the lead in forming companies, putting management teams in place, and taking equity stakes," according to a fact sheet from the group. It also has an investment fund.

For donor Jeff Heddles, a retired chiropractor, this model at the center of EBRP's approach has become an exciting way to give back and see results. "Every dollar is worth more than a dollar," Heddles said in an interview.

Heddles first became aware of EB after seeing a child of about seven-years old, bandaged to protect his skin and playing tambourine along with Pearl Jam on stage at a California concert in 2021. When he got home and researched why the child was there, Heddles began to learn about the disease and the Vedders' efforts to cure it. He then asked his philanthropic advisor at William Blair Private Wealth Management to look into EBRP.

"What was exciting is everything is laser-focused on research and finding a cure -- there's no fluff," Heddles says.

EBRP's venture approach is among innovative models more public charities are pursuing, which not only attracts types of capital to their mission, it can get more donors involved, Laura Coy, head of philanthropy and sustainability at William Blair, said in an interview.

These are models that "can pull on the intellectual capital as well as the financial capital of its donors," says Coy, who recently wrote a paper on venture philanthropy for the firm, calling it, "a New Era of Innovative Giving."

Other models have been put forward by Blood Cancer United, which has a therapeutic accelerator program that makes for-profit investments in medical research, she says. There are also smaller organizations such as LiftUp, which has both a for-profit enterprise and a nonprofit, focused on creating livable jobs and career opportunities. It's a strategy used in climate philanthropy, too.

"We've got this perfect match of clients who by nature are more risk oriented or should be more innovatively oriented, and now the public charities have risen to the occasion to say, listen, we have the infrastructure, we are sophisticated in how we're approaching these social problems," Coy says. "There's a great match to be made there."

Venture philanthropy is particularly suited to rare diseases such as EBRP, Hund says. Because they receive so little government funding, the nonprofit's dollars into universities and companies engaged in research gives them leverage to negotiate "really good deals," he says. "Every dollar matters when the return comes back to the foundation to fund more science."

Will they find a cure by 2030? "We believe in ambitious goals," Hund says. But he points to the progress already made and says the organization currently has "multiple shots on goal," through research into gene editing, gene therapy, stem cell therapy and immune therapy, among other avenues.

EB afflicts about 500,000 individuals globally, but the nonprofit's research has the potential to help about 400 million people suffering from various rare diseases some of which, like EB, are the result of one gene mutation. Other examples of monogenic diseases include Cystic fibrosis, sickle cell disease, and Duchenne muscular dystrophy.

Heddles, who knew no one afflicted with EB before getting involved in the organization, has donated $1.5 million so far, including two campaigns where he matched donations to EBRP up to $250,000 each that brought in donors outside the EB community.

For a Pearl Jam fan, it has been "awesome" to meet Eddie Vedder and his family, but "when you put it in the context of EB, it takes the celebrity shine off, because we're all there for the same reason -- to help cure this disease," Heddles says.

Write to Abby Schultz at abby.schultz@barrons.com

This content was created by Barron's, which is operated by Dow Jones & Co. Barron's is published independently from Dow Jones Newswires and The Wall Street Journal.

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February 14, 2026 05:00 ET (10:00 GMT)

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