Pearl Jam frontman Eddie Vedder has offered his support for the EB Research Partnership, a non-profit dedicated to eradicating a rare skin disease called Epidermolysis Bullosa (“EB”), which leaves children with fragile skin that can be sheared off the body with even slight contact. In the above video, Vedder encourages viewers to donate their time and money to the cause, which researchers hope will produce a cure through the scientific process of gene editing.
“When I first heard about it, it was quite hard to grasp the intensity of the condition,” Vedder says in the above video campaign. “It’s about the most insane skin disorder you could imagine. And when you realize it also affects the internal organs, you see it as diabolical. It’s very hard to describe until you meet the young folks with it, and they make you realize how much you take for granted. You also realize that these are some of the strongest, coolest, most admirable people on the face of the Earth.”
Individuals with EB often struggle with debilitating pain and infections, treating wounds with intensive bandaging. There is currently no cure for the disease, but doctors at the University of Minnesota are exploring genomic mapping techniques that could be used to fix a child’s DNA before birth – and, if successful, be applied to 5,000 rare diseases and help cure up to 10% of the U.S. population. Vedder says finding a cure is “something that not only we can do – we just have to.”
For more information, and to donate to EBRP, visit the non-profit’s website.