Eddie Vedder and Deanna Molinaro in Matter of Time
With the way medical science has been warped, weaponized, demonized, and discounted in the past year, Matt Finlin’s new documentary Matter of Time serves as a powerful reminder of the amazing, almost miraculous things that medical research can achieve when given the proper support.
The topic in question here is epidermolysis bullosa (EB), a genetic skin disorder that prevents the layers of a person’s skin from binding together properly, causing the skin to constantly blister or fall off. Children with EB, who are called “butterfly children” because their skin is as fragile as butterfly wings, begin experiencing symptoms immediately after birth. There is no cure and, until recently (more on that in a moment) there was no treatment, so all that could be done was to treat the symptoms, keeping the child wrapped from head to toe in gauze to protect the skin and prevent infections or certain types of cancer that kids with EB are prone to. Many don’t make it to adulthood. It’s an awful disease, and seeing the suffering that these innocent kids have to endure is heartbreaking.
But there’s hope: with support from a charity called the EB Research Partnership, a treatment was recently developed for certain forms of EB that is able to treat the disease, correcting the faulty DNA sequence that causes it and letting portions of the skin repair itself. It’s not a cure, but it’s a gamechanger, and something that could potentially be applied to other diseases that can be linked to a single gene, such as Parkinson’s or Alzheimer’s. After an eternity of “nothing can be done,” now it’s not outrageous to think there could be a cure as soon as 2030.
In Matter of Time, director Finlin lets us get to know several children with EB along with their families, giving us a view into what life is like with the disease. What comes through in these sequences isn’t their suffering, though: it’s their hope, and courage, and resilience, their innate desire to just be normal kids and how they still manage it despite all they have to go through on a daily basis. The backdrop for all this is the first ever nationwide EB Research Partnership convention, an event planned by EB Research Partnership founder Jill Vedder to bring children with the disease, their families, research scientists, and donors all together in one place to explore the science, make connections, and break new ground. And the centerpiece of the convention is a fundraiser concert at Seattle’s famed Benaroya Hall featuring Jill’s husband, Pearl Jam singer Eddie Vedder.
Eddie Vedder’s concert set, songs from which are scattered throughout the documentary, is the spoonful of sugar that helps the medicine go down—it’s what hopefully gets the eyeballs onto the documentary so that the stories of the kids and of the scientific researchers involved in the breakthrough treatment can be seen. And the concert scenes are truly effective: EB research is clearly not just a charity that Vedder tosses money at; he has become intimately involved in it, he has forged personal connections with some of the children and their families, and he brings even more raw emotion and intensity to his performance than he usually does, which is really saying something.
But as great as the music is, the kids’ stories are what will stick with you. Rowan Holler is one in particular, a precocious blonde 10-year-old whose family used to live in St. Louis before she was born—her dad, Jason, was in the 2000s St. Louis band Kentucky Knife Fight. (St. Louis Magazine’s Sarah Fenske profiled the family over the summer ahead of the film’s debut; you can read that here.) Seeing everything she has to go through on a day-to-day basis, then to see her at the conference, realizing that she’s not alone, and getting to just be a kid on vacation, will warm your heart.
Ultimately, Matter of Time is both an affecting tribute to the resilience of these kids and a paean to the potentials of scientific research, of what dedication and adequate resources can achieve. Finlin keeps the film engaging throughout with excellent pacing and very human storytelling, not being afraid to let the film be almost unbearably sad in certain moments yet making sure the underlying hope is never far behind, and framing it all with a powerful and affecting musical performance. A must-see. | Jason Green
Matter of Time will screen at the Brown Hall Auditorium on the campus of Washington University (Centennial Greenway, near the corner of Forsyth Blvd. and Skinker Blvd.) on Saturday, November 15 at 7:00 pm as part of the St. Louis International Film Festival 2025. The screening will be followed by a Q&A with director Matt Finlin. Admission is free. The film is also showing at Ronnie’s Cinema (5230 S. Lindbergh Blvd.) on Thursday, November 13. Further information about the SLIFF screening is available here, and more information about the film can be found on the official website.
