uch

At a recent Pearl Jam concert, Eddie Vedder spoke about EB. I had never heard on the condition before that. He was promoting Cause The Wave with the EB Research Partnership. He brought a young person with EB on stage and the two of them (Eddie and the child) waved to the crowd who went bananas waving back. I wasn't expecting a Pearl Jam concert to bring tears to my eyes, but man...onions. Anyway, you mentioned that your doctors had never heard of the disease and I hadn't either before that concert. My question is, what can the average person do to help? (Edit: I not reddit format good)

It's insane to me that this level of rigor is required to speak your mind while staying alive when dealing with real groups that still exist in 2015. You are more brave than I can express.