Those with epidermolysis bullosa can tear their fragile skin by brushing their teeth, eating or partaking in other everyday acts. The rare genetic disease leaves skin as fragile as “butterly wings,” forcing patients to wear and change bandages multiple times a day.
Epidermolysis bullosa, or EB, is the subject of “Matter of Time,” a feature coming to the St. Louis International Film Festival this weekend that blends rock-doc concert footage from Pearl Jam’s Eddie Vedder with a more traditional medical documentary.
Throughout the film, director Matt Finlin intersperses footage from two EB benefit concerts with stories of families affected by the disease and doctors researching treatments and cures.
“We took the classic sort of rock doc form and tried to turn it on its head a little bit, and it happened in just kind of an organic way,” Finlin said. “Having [Vedder’s] concerts as the backdrop lightened the situation in many respects and showed his dedication to these families and researchers.”
Those with EB lack a protein that holds skin together, which means everyday activities can cause blisters, lesions or tears that don’t heal easily.
Finlin acknowledges the subject matter can be difficult. EB mostly affects children, and many of the documentary’s subjects are young kids. In addition to affecting the skin, the disease can also damage internal organs and create digestive and cardiac problems.
Rowan Holler, a bright 10-year-old from Denver with EB who is featured in the film, has become a pro at describing the condition.
“You could think of it as grass, but without the dirt,” she said. “You could just pull the grass right out. Because we don't have any epidermis to hold the skin down to the body, it can come off.”
Rowan hopes one day she won’t have to explain the disease at all — that people will simply know what EB is and that a cure will exist.
“I think Jill Vedder says in the film that EB used to be the worst disease you've never heard of,” Finlin said. “We want it to be the worst disease we're finding a cure for. And in order to do that, people need to know what it is.”
Rock star takes action
Vedder became involved in EB research when he met a friend’s child living with the disease.
The massively popular musician, his wife, Jill, and parents of EB patients founded the Epidermolysis Bullosa Research Partnership in 2010. Since then, the organization has raised millions of dollars through a “venture philanthropy” model that directs money to the most promising research breakthroughs, according to its website.
In 2023, Vedder mounted two shows in Seattle to benefit that research. Those shows create the backdrop of “Matter of Time,” where acoustic performances are interwoven with scenes of Rowan and other patients.
Rowan likes cats, singing and drawing. During a recent video chat, she wore a Pearl Jam shirt but admitted she mostly listens to Billie Eilish and the alt-electro artist Dutch Melrose.
Rowan was in the balcony for one of Vedder’s Seattle concerts featured in the film.
“I felt emotional. I felt pride,” Rowan said. “I couldn't be more happier. And I'm hoping some day we will have a cure, or at least something to minimize our wounds.”
Rowan’s dad, Jason Holler, had a similarly emotional experience when he watched the movie for the first time. Around him, he could hear audience members laughing and weeping.
“Listening to them reacting to the film, reacting to essentially your life, was really quite something,” he said. “There's a lot of serious stuff in this film, but it's not just a film of sadness. It's a film of laughter, and it's a film of optimism.”
Holler’s name may sound familiar to those in the St. Louis region. Holler, who grew up in Quincy and later lived in St. Louis, was the lead singer of the country-punk band Kentucky Knife Fight.
The Hollers are traveling from Colorado to St. Louis for this weekend’s screening, and Jason is excited to share the film with family and friends who live in the area.
And the film’s music roots run even deeper: The Canadian band Broken Social Scene, whose members are also advocates for EB research, wrote the “Matter of Time” score.
Finlin said so many musicians’ work has been a boon for raising awareness about and supporting patients with the condition.
“The EB research partnership is sort of a rock and roll culture in their approach, because it's very unconventional,” he said. “They're a small but mighty team. They're using venture philanthropy as a way to fund therapies, prospective therapies and treatments. And they've refused to take no for an answer.”
Encouraging research
Scientists have been finding new ways to treat EB symptoms. Earlier this year, researchers at Stanford published clinical findings that showed skin grafts engineered from a patients’ own skin cells could help heal persistent wounds.
And because EB is caused by a genetic mutation, emerging gene editing technologies such as CRISPR show some promise for treating kids with EB.
Finlan said it was important to show how devastating the disease could be, but he also wanted to make room in the documentary to show resilience and hope.
“You'll see in the film that Rowan is receiving what was the first FDA-approved treatment for the disease,” he said. “And that was a monumental moment.”
Washington University’s Brown Hall Auditorium is hosting a free screening “Matter of Time” on Saturday as part of the St. Louis International Film Festival. Finlin, along with Rowan and Jason Holler, will host a panel discussion after the movie.
