Imagine a world where a gentle hug could cause excruciating pain. This is the stark reality for children battling epidermolysis bullosa (EB), a rare genetic disorder that turns their skin as fragile as a butterfly's wing. In the powerful documentary Matter of Time, rock icon Eddie Vedder lends his voice—both literally and metaphorically—to shed light on this devastating condition and the tireless efforts to combat it. But here's where it gets even more compelling: Vedder isn't just a narrator; he's deeply invested in the cause, co-founding the EB Research Partnership alongside his wife, Jill, after a personal connection to the disease through a childhood friend's son.
Directed by Canadian filmmaker Matt Finlin and written by Karen Barzilay, this 105-minute film is a poignant blend of music, storytelling, and raw emotion. Released on Netflix on February 9, it follows doctors, researchers, patients, and their families in a race against time to find a cure for EB. The documentary doesn't shy away from the harsh realities—life expectancy is short, and treatments are little more than temporary fixes. Yet, it’s the resilience of the EB community that takes center stage. As Vedder reflects, “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.”
And this is the part most people miss: the film isn’t just about suffering; it’s about hope and action. Vedder’s solo benefit concerts at Seattle’s Benaroya Hall in October 2023 are woven into the narrative, his baritone voice a comforting presence as he performs and speaks both on and offstage. Concert footage is intercut with intimate scenes of parents spending hours bandaging their children’s wounds—a daily ritual that underscores the relentless nature of EB.
One of the film’s most moving subjects is Deanna Molinaro, an artist and patient advocate from Hamilton who lives with one of the most severe forms of EB. Her story, along with those of other patients, is documented by Finlin with a light yet respectful touch, capturing both their pain and their dignity. The original score by Canadian indie-rock band Broken Social Scene adds a layer of gentle emotion, complementing the film’s quiet urgency.
But here’s the controversial question: Is society doing enough to support research for rare diseases like EB? While the documentary highlights the progress made, it also reminds us of the long road ahead. Not all patients in the film survive, and the Greek proverb about old men planting trees whose shade they’ll never sit under feels particularly poignant here. The film closes with a defiant cover of Tom Petty’s I Won’t Back Down and Vedder’s title song, a rallying cry: “You got the cure, I got the fight, just a matter of time.”
Matter of Time isn’t just a documentary—it’s a call to action. It challenges us to consider the value of perseverance, the power of community, and the importance of fighting for those who can’t fight alone. What’s your take? Is enough being done to support rare disease research, or is this a fight that needs more attention? Share your thoughts in the comments—let’s keep this conversation going.
