Rafi’s Run and Helping Butterfly Children

Last year I met a very cool mom, writer, and actress named Wendy Stetson at a blogging event. Because we share a very cool name, we had a lot to chat about. It turns out that Wendy and I have a few friends in common–and I learned that Wendy and these friends are committed to helping a brave, strong, and adorable six-year-old girl named Rafi, who lives her life in constant unimaginable pain.

Rafaella Lily was born with a severe form of a rare genetic disorder called Epidermolysis Bullosa (EB). Two years ago, a group of moms from Rafi’s preschool got together to make a difference for Rafi, and children like her. Rafi’s Run was created because there is currently no cure for EB. There is not even a treatment to minimize the pain.

Often referred to as “The worst disease you’ve never heard of,” EB is a devastating disorder which causes children’s skin to be so fragile that simply scratching an itch results in blisters and tears. Kids with EB are known as Butterfly Children, because their skin is as delicate as a butterfly’s wings.


Rafi’s Run raises money to fund research for a cure for EB; thanks to the generosity of family, friends, and businesses, $400,000 has been collected for the cause. Every penny donated to Rafi’s Run goes directly to researchers who are already making amazing discoveries that will benefit not only kids with EB, but also children with similar disorders.

The run has elicited a tremendous outpouring of community involvement and national attention. The Third Annual Rafi’s Run Should be even bigger than the first two. The 2014 5K Run/Walk will take place in Riverside Park at West 103rd Street on Sunday March 9th, at 10:00 a.m., with a Children’s Fun Run at 11:00 a.m., for kids ages 12 and under. There will be a raffle and snacks, a musician, and a big green dinosaur; and everyone goes home with a very cool tee shirt. All donations are fully tax deductible and go directly to researchers via DebRAof America–the premier nonprofit organization for research into treatments for EB.

Please be a part in helping to find treatment and a cure for EB. Visit Rafi’s Run to learn how you can volunteer, participate, and support this really wonderful event.

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This entry was posted in Event, Family Life, New York City Living and Coping, Parenting Moments and tagged , , , . Bookmark the permalink.

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