Eddie Vedder's Seattle Concerts Raise Over $5M for Rare Disease Research

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The documentary 'Matter of Time' follows Pearl Jam's Eddie Vedder as he organizes a series of intimate solo concerts at Seattle's Benaroya Hall in 2023 to raise funds and awareness for Epidermolysis Bullosa (EB), a rare and debilitating genetic disorder. The film interweaves footage from the emotional performances with raw interviews from EB patients and their families, as well as researchers working to find a cure. Vedder's dedication to the cause is highlighted, including the approval of the first gene therapy for EB in 2023.

Why it matters

The documentary shines a spotlight on the challenges of securing funding and attention for rare diseases that affect relatively small populations. By highlighting Vedder's advocacy work for EB, 'Matter of Time' aims to inspire greater investment in research for all rare diseases and foster a sense of collective responsibility for addressing these often-overlooked medical needs.

The details

The Benaroya Hall concerts, which raised over $5 million, were specifically designed by Vedder to directly appeal for funding and demonstrate his unwavering dedication to finding a cure for EB. The documentary interweaves footage from these intimate acoustic performances with candid interviews from EB patients and their families, as well as researchers working tirelessly on groundbreaking treatments. This juxtaposition creates a powerful emotional core, grounding the scientific advancements in the lived experiences of those who stand to benefit most.

• The Benaroya Hall concerts took place in 2023.
• The first gene therapy for EB was approved in 2023.

What’s next

The documentary's release is expected to inspire others to become involved in the fight against rare diseases and champion causes they believe in.