Normally, red carpet events are filled with actors, performers, and celebrities. This summer, however, a documentary premier 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. The film also weaves in the stories of young people living with EB, physicians, and researchers.
“We are so grateful to the music community, and the entire team who made these concerts and this film possible,” Vedder told CNN. “This is a story of hope, resilience, and the power of community.”
From the clinic to the big screen
Feinstein has been treating children with EB for more than 15 years, but it’s only been in the last two years that there have been major treatment breakthroughs. His work began alongside Stephen Berman, MD, a professor of pediatrics at the CU School of Medicine 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.”
Jamie Feinstein, MD, MPH, left, poses for a photo with musician Eddie Vedder, and researchers Igor Kogut, PhD, middle, and Ganna Bilousova, PhD.
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, the team of as many as 25 clinicians who help treat various aspects of the disease, see four to six patients with EB.
In the documentary, Feinstein shares a bit of his experience as a physician caring for children, including Rowan, and how the treatment landscape has evolved during his career.
“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. “Until recently, we’ve had no medicines to address the underlying disease. 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.”
The documentary itself is an ode to what it takes to move the needle in rare disease research.
“This film brings EB to the world stage,” Feinstein says. “It’s a call to action for the medical community, but also for advocates, fundraisers, thought leaders, and anyone else who wants to be part of our EB community—these incredible children and families deserve all the positive energy in this world. I think the EB community is in the best position it’s ever been to push forward toward more treatments and, ultimately, a cure.”
“’Matter of Time’ is a stunning showcase of team science at its best,” Feinstein continues. “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. We’ve gone from having no treatments to truly believing that a breakthrough is within reach, thanks to the unyielding strength and hope of our EB community.”
