Rock star Eddie Vedder talks about young people who suffer from the rare genetic disease epidermolysis bullosa.Supplied
Matter of Time
Directed by Matt Finlin
Written by Karen Barzilay
Starring Eddie Vedder, Deanna Molinaro, Dr. Jean Tang
Classification N/A; 105 minutes
Releases on Netflix Feb. 9
Critic’s Pick
In the soulful documentary Matter of Time, rock star Eddie Vedder talks about young people who suffer from the rare genetic disease epidermolysis bullosa and those who have rallied to help them.
“This community, you’re immediately taken by the amount of strength and dedication on a daily basis to overcome obstacles we can’t even imagine. When you see the intense pain that these kids go through, and imagine what it must do to the hearts of the parents, there does become a timeline …”
Epidermolysis bullosa (EB) appears at birth or infancy. It causes extremely fragile skin − as delicate as a butterfly’s wings − that painfully blisters at the slightest friction. Life expectancy is short. No cure exists; treatments are literally Band-Aid solutions.
The music-driven documentary by Canadian director Matt Finlin chronicles the slow race to solve the disease. His cameras focus on doctors, researchers, patients and their families, as well as Pearl Jam singer-songwriter Vedder and his wife Jill Vedder, co-founders of EB Research Partnership. Jill’s childhood friend Ryan Fullmer, another co-founder of the partnership, has a son who was born with EB.
On Oct. 23 and 24, 2023, Vedder performed a pair of solo benefit shows at Seattle’s 2,500-seat Benaroya Hall. Concert footage is threaded with scenes of parents caring for their children. (Bandaging is an hours-long ordeal.) The 61-year-old Vedder serves as a kind of emcee in the film: Whether singing or speaking, onstage or off, he is a comforting, baritone presence.
One of the film’s subjects is Deanna Molinaro, an artist and patient advocate from Hamilton who has one of the most severe forms of EB.
Finlin’s previous film was 2024’s The Movie Man, about an eccentric owner of a small independent movie theatre in Ontario determined to keep it running in an era when film houses are in peril. Globe film critic Barry Hertz described it as a charming and humble documentary that “should embolden already hardcore cinephiles to keep fighting the good fight.”
Epidermolysis bullosa appears at birth or infancy. It causes extremely fragile skin − as delicate as a butterfly’s wings − that painfully blisters at the slightest friction.Supplied
The fight in Matter of Time is far more severe. We watch as children with EB are hugged delicately so as to not damage their skin. Similarly, Finlin documents the pain and dignity of the young patients with a light, careful touch. The emotion of the original score by Canadian indie-rock band Broken Social Scene is gentle.
Not all the patients in the film survive. Though there is a sense of quiet urgency to the documentary, a Greek proverb, about old men planting trees whose shade they know they shall never sit in, comes to mind.
The film ends with a cover version of Tom Petty’s defiant I Won’t Back Down. Vedder’s title song plays over the closing credits: “You got the cure, I got the fight, just a matter of time.”