The documentary “Matter of Time” shines a light on the rare genetic disorder Epidermolysis Bullosa (EB) and showcases the power of community, love, and determination in the fight for a cure. The film opens with a captivating scene at Seattle’s Benaroya Hall, where musician Eddie Vedder performs for an audience energized by the music and inspired by the stories behind it. Among the audience is Eli, a young boy battling EB, introduced by Vedder as the night is dedicated to him and others who face this challenging condition.
Epidermolysis Bullosa affects approximately 500,000 people globally and is characterized by the skin’s vulnerability, leading to painful blisters and tears. The most severe forms can drastically shorten life expectancy, often leaving families grappling with despair due to the lack of a cure and limited awareness surrounding the disease.
However, the Vedders, through their nonprofit EB Research Partnership (EBR), have been pivotal in changing this narrative. Their initiative aims to raise awareness and fund critical research for EB. “Matter of Time” chronicles not only the challenges but also the progress made through the diligence of scientists, doctors, and families fighting to find solutions.
This documentary serves multiple purposes: it educates viewers on EB, uplifts spirits through the stories of resilient individuals and families, and includes an intimate glimpse of Eddie Vedder’s charity concerts, which have been significant in ensuring hope remains alive for those affected.
Since its inception, EB Research Partnership has successfully raised over $80 million, which has facilitated the development of three FDA-approved treatments and more than 25 clinical trials. The relentless commitment of the Vedders and the community showcases how collective effort can drive impactful change.
“Matter of Time” is a stirring testament to human strength and camaraderie, leaving viewers with a strong sense of hope and a call to join the movement for a cure. By sharing these stories, the documentary not only highlights the urgent need for awareness and treatment but also inspires individuals to contribute to this meaningful cause.