Eddie Vedder is at the heart of Matter of Time, which arrives on Netflix this Monday, February 9, but the new documentary does not focus on the singer’s storied exploits with his band Pearl Jam.
Instead, the film tells the story of Vedder’s solo concerts in Seattle in October 2023, organized to raise money for clinical research into Epidermolysis Bullosa.
Epidermolysis Bullosa is a rare, life-threatening genetic skin disorder that mostly affects children. The condition causes fragile, blistering skin, and those who have it are sometimes called “butterfly children” as their skin is considered as fragile and easy-to-break as a butterfly’s wing.
People born with EB lack critical proteins that bind the skin’s two layers together. Without these proteins, the skin tears apart easily, leading to severe pain, disfigurement, and internal and external wounds.
It is estimated that 500,000 people worldwide have EB. Those who have the most severe forms of EB can have a shortened life expectancy that ranges from early infancy to 30 years of age.
Vedder and his wife Jill became aware of the condition when a close friend of their family had a child born with it. In 2010, the couple co-founded the EB Research Partnership with a group of affected families. The charity has since become the largest organization funding research into EB, and they’ve set a goal of finding a cure for the disorder for 2030.
Matter of Time, named for the belief that a cure is on the way, combines footage of Vedder’s concerts with real-life stories of the patients, families and researchers who have been affected by EB. It also features a score by indie rock band Broken Social Scene.
In a statement, Eddie Vedder said: “We are so grateful to the music community, and the entire team who made these concerts and this film possible. This is a story of hope, resilience, and the power of community.”
Michael Hund, the CEO of EB Research Partnership, added: “This film celebrates our community of courageous patients and families, and highlights the real scientific progress that is happening right now.
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“We are showing the world how rare diseases like EB can be cured, and we hope to take our model to thousands of other rare diseases. Our goal is to raise the visibility of this urgent cause and to inspire others to join us in our mission to cure EB by 2030.”
The film was directed by Canadian documentary maker Matt Finlin, who said: “The concert wasn’t just about music; it was about amplifying the voices of a small but mighty community that refuses to let this disease define them. Through the Vedders’ dedication and the efforts of everyone involved, this documentary demonstrates to the world how, even against all odds, real change is within reach.”
Last month, Emma Fogarty, who was born with EB, spoke to The Independent about her own experiences with the condition, and how actor Colin Farrell has come to her support.
