University of Minnesota Masonic Children’s Hospital welcomed special visitors last weekend when Eddie Vedder of Pearl Jam and Alex Silver from EB Research Partnership stopped by to visit patients and families fighting epidermolysis bullosa (EB).
Vedder has become a public supporter of EB Research Partnership, a non-profit dedicated to eradicating EB—a rare disease that leaves children with fragile skin that can be sheared off the body with even slight contact.
In a video (below) produced by EB Research Partnership, Vedder is featured along with Jakub Tolar, MD, a pediatric hematologist/oncololgist and stem cell researcher at University of Minnesota Masonic Children’s Hospital.
“When I first heard about it, it was quite hard to grasp the intensity of the condition,” Vedder says in the video. “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.”
Children who have EB face infections and debilitating pain. Skin often must be bandaged to reduce damage and prevent infection. Although there is no cure, University of Minnesota researchers are exploring genomic mapping techniques that might allow them to fix a child’s DNA before birth. The techniques could then potentially be applied to other rare diseases.
We are grateful to have the support of Eddie Vedder and EB Research Partnership. Enjoy photos (courtesy of Jim Bovin Photography) and news coverage from this special visit!