Greetings again from the darkness. Epidermolysis bullosa (EB) has been labeled as “the worst disease you’ve never heard of.” After watching this documentary from Matt Finlin, it’s safe to say EB is now one of the worst diseases I have heard of. Watching anyone suffer is torturous, and when those suffering are young and simply drew a short straw in genetics, the difficulty is even greater. The excruciating disease causes the blistering of skin and is typically visually apparent to all, requiring delicate and frequent bandaging to minimize further damage.
Rock star Eddie Vedder and his wife Jill founded EB Research Partnership, and the film covers a couple of 2023 mostly acoustic concerts Eddie gave at Seatle’s Benaroya Hall to raise money and awareness of the disease. Vedder is well-known for his work (since 1990) with Pearl Jam (originally Mookie Blaylock), a band synonymous with Seattle’s grunge rock. His musical numbers here act as a framing device around the education we receive on the disease and the interviews with the families and individuals touched 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 very strong and diligent despite the enormous challenges – both emotionally and physically. We spend time with 31-year-old Deanna, a remarkable lady with an incredible life attitude she describes as “quality over quantity”. Her artistic ability is as exceptional as her approach to each day. EB robbed her of her ability to walk, and it took the limbs she once used to paint. However, she has not allowed the blisters and fragility of life to stop her from painting. Deanna is but one of the courageous folks we meet here, and the film ends with an unfortunate update on her.
Eddie Vedder comes across as very humble and committed to helping in the cause. The proceeds for the concerts and the film go to the EB Research Partnership. Periodically joined on stage by a string quartet, his music is welcomed between segments with the community. We learn the significance of “Come and Say Hi” … an invitation from those who might be a little different, and Vedder ends the show with a touching and fitting version of Tom Petty’s “I Won’t Back Down”.
For more information on EB: https://www.ebresearch.org/
Prior to a theatrical release, the film will have a one week run in Seattle beginning November 7, 2025
Movie Reviews from the Dark 