Jill and Ed knew they had to take action when a childhood friend’s son was born with EB. They combined their commitment to catalyzing global change with Ed’s powerful platform of being the singer-songwriter for one of the world’s biggest rock bands: Pearl Jam. Together, they are not only co-founders of EBRP USA but also leading ambassadors, sharing the mission of curing EB with the world.
“It’s about the most insane skin disorder you can imagine. And when you realize it also affects the internal organs, then you see it as diabolical.”