The 2nd Annual Rafi's Run to Benefit EpidermolysisBullosa Research

by - 1/18/2013 11:05:00 AM

I'm posting this in support of my friend Wendy Stetson, who blogs at Babies Gotta Have It and volunteers on the planning committee for Rafi's Run - Onica

The Second Annual Rafi's Run will take place in Riverside Park on Sunday March 10th 2013. It's a 5k run/walk with a Children's Fun Run to benefit research into a disease called EpidermolysisBullosa or EB. EB is sometimes referred to as the "worst disease you've never heard of." It's a rare and painful genetic disorder that causes the outer layer of the skin not to bind to the under layer--as a result children with EB are often called Butterfly Children. Their skin is as delicate as butterflies' wings.

Rafi's Run

Rafi Kopelan lives with EB. Rafi is an inspiration. She deserves every chance in the world. You can learn all about Rafi and the stem cell transplant that she underwent at the age of two on the About Rafi page of the Rafi's Run site

The first annual Rafi's Run was held last year, when a group of Moms from Rafi’s preschool got together and decided to make a difference. Upper West Side Assemblywoman Linda Rosenthal was also in attendance, and she proclaimed March 11, 2012 Butterfly Awareness Day, in honor of Rafi.

Here is a video of last year's event

It's hoped that the second Rafi's Run will be even bigger than the first. All the proceeds go to DebRAof America - the premier nonprofit organization for research into treatments for EB. Runners are beginning to sign up, but also needed are donors to support teams and corporate sponsors to contribute to the run.

To learn more visit -

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