Eddie Vedder, the renowned musician and activist, has dedicated his efforts to a noble cause: saving children's lives. Through his partnership with his wife, Jill, and their charity, the EB Research Partnership (EBRP), they are making significant strides in curing a rare and devastating genetic skin disorder called Epidermolysis Bullosa (EB).
The couple's journey began in 2010 when they learned about EB through a nephew of Jill's childhood best friend. The disease, which affects the skin and internal organs, causes severe pain and suffering for those affected. With no treatments available at the time, the Vedders decided to take action.
The documentary Matter of Time showcases their efforts, combining concert footage from Eddie's solo shows with the story of their charity work. The film highlights the daily struggles of families living with EB, including bandage-changing, bleach baths, and constant anxiety. However, it also emphasizes the resilience and courage of the children affected by the disease.
Since its launch, EBRP has raised over $80 million, funding 180 research projects. The charity operates on a 'venture philanthropy' model, where it receives a percentage of profits from commercial treatments to invest back into further studies. Angel donors cover all administrative costs, ensuring that 100% of donations go directly to research.
One of the most recent successes came in April 2025 with the FDA approval of Zevaskyn, a cell-based gene therapy for the most severe form of EB. This breakthrough was made possible by the research funded by EBRP and the dedication of scientists and researchers.
Eddie's performances in the film are intense, with the lyrics of his songs taking on added power. His emotional delivery touches the hearts of viewers, making them want to help. The primary way to contribute, according to the Vedders, is through donations, and the documentary encourages viewers to join the team and find their place in the fight against EB.
Despite the pain and suffering witnessed, Eddie remains hopeful, believing in the power of science and music. He sees the documentary as a reminder of the importance of scientific research and its ability to make a difference in people's lives.
