Help Support the 5th Annual Rafi's Run!
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 me in my 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? I joined the committee for Rafi's Run to help make a difference in Rafi's life and other children who suffer from EB. That's why we count on the support of people just like you: Because the cost of doing nothing is too great.
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