Greetings again from the darkness. Epidermolysis bullosa (EB) has been dubbed "the worst disease you'll ever hear about." After watching this documentary by Matt Finlin, I can safely say that EB is now one of the worst diseases I've ever heard of. Watching someone suffer is torture, and when those affected are young and simply got the worst genetic hand, the difficulty is even greater. This painful disease causes blisters on the skin and is usually visible to everyone, requiring delicate and frequent bandaging to minimize the damage.
Rock star Eddie Vedder and his wife Jill founded the EB Research Partnership, and the documentary features a couple of mostly acoustic concerts that Eddie performed in 2023 at Benaroya Hall in Seattle to raise funds and awareness for the disease. Vedder is best known for his work (since 1990) with Pearl Jam (originally Mookie Blaylock), an iconic Seattle grunge rock band.
Director: Matt Finlin
Writer: Karen Barzilay
Stars: Eddie Vedder
Their musical numbers serve as a backdrop for the education we receive about the disease and the interviews with families and individuals affected by EB. This also includes the doctors and researchers dedicated to finding not just a treatment, but a cure.
The families and this community are incredibly strong and diligent despite the enormous challenges, both emotional and physical. We spend time with 31-year-old Deanna, an extraordinary woman with an incredible attitude towards life, which she describes as "quality over quantity." Her artistic ability is as exceptional as her approach to each day. EB robbed her of the ability to walk and the limbs she once used to paint. However, she hasn't allowed blisters and the fragility of life to stop her from painting. Deanna is just one of the courageous people we meet here, and the film ends with sad news about her.
Eddie Vedder is very humble and committed to the cause. The proceeds from the concerts and the film go to the EB Research Association. With a string quartet joining them on stage periodically, their music is enthusiastically received by the community between segments. We discover the meaning of "Come and Say Hi," an invitation from those who might be a little different, and Vedder closes the show with a poignant and fitting rendition of Tom Petty's "I Won't Back Down."
Before its theatrical release, the film will screen for one week in Seattle beginning November 7, 2025.
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