Netflix Documentary Featuring Darboy Family Sheds Light on Rare Disorder Cure

The heartwarming Netflix documentary “Matter of Time” released on February 9, 2026, tells the inspiring story of a Darboy family in Northeast Wisconsin who are living with Epidermolysis Bullosa (EB), a rare genetic skin disorder. Charlie Knuth, the young boy at the center of the film, has been embraced by his community since he was born with EB.

Charlie’s mom, Trisha Knuth, recalls the uncertainty and worry she felt when Charlie was just a tiny newborn, bandaged up and covered in Vaseline. However, as Charlie continued to thrive, the science behind EB research started to progress. This progress received a significant boost from Eddie Vedder, the lead singer of Pearl Jam, and his wife, Jill, who founded the EB Research Partnership to raise awareness and funds for finding a cure for EB.

The documentary “Matter of Time” not only highlights the struggles of families like the Knuths but also showcases the incredible work being done by the EB Research Partnership. Eddie Vedder himself expresses hope in the documentary, stating that with increased funding and awareness, finding a cure for EB feels like it’s just a matter of time.

Director Matt Finlin, who worked on the film, emphasizes the privilege of getting to know these families and researchers, playing a small part in moving the needle towards a cure for EB. Trisha Knuth shares the positive impact of the EB Research Partnership, noting that before their involvement, there was minimal research being done. Now, thanks to their efforts, there are FDA-approved treatments available and ongoing clinical trials for EB.

The documentary serves as a beacon of hope for those affected by EB, like Charlie and his sister Meili, who also has the disorder. Meili expresses her excitement that the documentary is on Netflix, allowing more people to learn about EB and support the cause. Through the combined efforts of families, researchers, and advocates like Eddie Vedder and the EB Research Partnership, the dream of finding a cure for EB is becoming more attainable.