Welcome to Jackie Kopelan's Personal Page for the 5th Annual Rafi's Run
I am the proud mother of Rafi and I thank you so much for coming to my page. We have made so much progress in treatments for EB but we still need a cure. No child should have to grow up with pain as a way of life. There is so much to this condition but the pain - the pain is the worst. I want my child pain free and I want every child and every adult with EB to not have to think about this pain or the bandages or the medicines or anything but what we all think about - the good stuff - fun, family, friends and laughter.
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