5th Annual Rafi's Run

Our family participating in Rafi's Run 2015
Our family participating in Rafi's Run 2015

The Glazer Family

Five years ago at Joshua's preschool, we met a spunky, courageous little girl named Rafi who was suffering from The Worst Disease You've Never Heard Of. She is referred to as a "Butterfly Child" since her skin is as sensitive as a butterfly's wings and will rip and tear at the slightest touch. Her entire body is covered in bandages and although she suffers daily, her spirit and smile make her inspiring to all. At this point there is no cure for the disease. 

Thank you for supporting us in our efforts to raise money and awareness for the EB community! Please click the button on the right of the page to complete your donation. Every little bit helps us get closer to a cure. Did you know that of those born with EB in 2014, 22% are no longer with us? That's why we count on the support of people just like you: Because the cost of doing nothing is too great.

View More