Jamie Feinstein, MD, MPH, left, poses for a photo with musician Eddie Vedder, Igor Kogut, PhD, middle, Kogut’s son, right, and Ganna Bilousova, PhD. Photos courtesy of Jamie Feinstein
FROM THE CINIC TO THE BIG SCREEN
CU pediatrician shines a light on epidermolysis bullosa.
By Kara Mason
October 2025
Normally, red carpet events are filled with actors, performers, and celebrities. This summer, however, a documentary premiere at the Tribeca Film Festival, featured two different kinds of stars: 10-year-old Rowan Holler and her pediatrician Jamie Feinstein, MD, MPH, professor of pediatrics at the University of Colorado School of Medicine.
Rowan has epidermolysis bullosa (EB), a rare genetic condition that causes the skin to easily blister and develop wounds. Rowan, her family, and Feinstein took to the red carpet for the release of “Matter of Time,” a documentary that chronicles the efforts to find a cure for EB and musician Eddie Vedder’s dedication to the cause. Rowan and Feinstein both appear in the film, which premiered June 12 in New York City.
“The goal is treatments, the goal, ultimately, is a cure,” Vedder, famously known as the frontman of Pearl Jam, says in the documentary. “It brings a sense of hope and feels just like a matter of time.”
The documentary, directed by Matt Finlin, follows Vedder through two sold-out performances in Seattle in 2023 to raise funds for EB research. He and his wife Jill Vedder, founder and chairwoman of the EB Research Partnership, took an interest in finding a cure for the disease, which is often fatal, when a close family friend’s son was diagnosed with EB.
VITAL TREATMENT
Feinstein has been treating children with EB for over 15 years, but it’s only been in the last two that there have been major treatment breakthroughs. His work began alongside Stephen Berman, MD, a professor of pediatrics and founder of the Children’s Hospital Colorado EB clinic, who died in 2023, just a few months short of seeing the first treatment approved by the U.S. Food and Drug Administration.
“Children with this condition often spend hours a day being carefully wrapped in bandages by their parents,” Feinstein explains. “Any friction can cause their skin to blister, leading to incredible pain, anxiety, and the risk of infection. It’s a relentless condition that invades on every aspect of a child’s life — yet these are the strongest, most resilient, and wisest children I have ever met. My heroes.”
Considering the rarity of this disease, specialized multidisciplinary clinics like the one Feinstein co-directs with professor of pediatric dermatology Anna Bruckner, MD, MSCS, have become critical for the care of children and adults living with EB. Twice a month, a team of physicians sees four to six patients with EB.
In the documentary, Feinstein shares his experience as a physician caring for children, including Rowan, and how the treatment landscape has evolved.
“For so long, this has been a condition we’ve had to manage in a palliative manner—reactively treating wounds, pain, and infections as they arise,” he says. “With the FDA approval of three new treatments in the past two years, we are light-years ahead, but it’s still not enough.”
‘TEAM SCIENCE AT ITS BEST’
Even with these new treatments, the Vedders, EB Research Partnership, and the EB community remain laser-focused on improving patient outcomes, and, ultimately, finding a cure.
“Meaningful progress requires funding talented scientists across the world to do their best work,” Feinstein says. “That includes scientists right here on campus, like Dennis Roop, PhD, Igor Kogut ,PhD, and Ganna Bilousova, PhD, at the CU Gates Institute. The effort to raise global awareness ultimately helps accelerate research and, most importantly, offers real hope to patients and families who’ve been waiting for treatments for far too long.”
Eddie Vedder
The documentary itself is an ode to what it takes to move the needle in rare disease research.
“’Matter of Time’ is a stunning showcase of team science at its best,” Feinstein says. “And that scientific team includes the ever-so-humble, thoughtful, and dedicated Vedder family. It’s a beautiful reminder of what can happen when everyone comes together with a shared vision and uses their unique talents for good.”