Eddie Vedder, the iconic frontman of Pearl Jam, is at the center of the new documentary Matter of Time, set to premiere on Netflix this Monday, February 9. However, the film does not revolve around his legendary career with the band. Instead, it focuses on Vedder’s solo performances in Seattle in October 2023, which were organized as a fundraiser for clinical research into a rare and devastating genetic skin disorder known as Epidermolysis Bullosa (EB).
Epidermolysis Bullosa is a life-threatening condition that primarily affects children. It causes the skin to be extremely fragile, leading to blisters and wounds from even minor friction or trauma. Those affected are often referred to as “butterfly children” due to the delicacy of their skin, which is likened to that of a butterfly’s wing.
The disorder occurs when individuals lack essential proteins that hold the layers of their skin together. Without these proteins, the skin can tear apart easily, resulting in severe pain, disfigurement, and both internal and external wounds. It is estimated that around 500,000 people worldwide live with EB. In its most severe forms, the condition can significantly shorten life expectancy, with some patients living only until early infancy or their 30s.
Vedder and his wife, Jill, first learned about EB through a close family friend whose child was born with the condition. In 2010, the couple co-founded the EB Research Partnership alongside other families affected by the disease. This charity has since become the largest organization funding research into EB, with a goal of finding a cure by 2030.
Matter of Time takes its name from the belief that a cure is within reach. The documentary blends footage of Vedder’s concerts with real-life stories from patients, families, and researchers impacted by EB. It also features a score by the indie rock band Broken Social Scene.
In a statement, Eddie Vedder shared: “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, CEO of the 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. 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 filmmaker Matt Finlin, who noted: “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 personal experiences with the condition and how actor Colin Farrell has offered his support.
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