A Child's Struggle Inspires Drive For Cure

"Armed with nothing more than their personal e-mail accounts and their networks on Facebook, a group of NYC moms launched Rafi's Run, an annual 5K that raises money for EB research."

Rafi Kopelan and her Sesame Street Friends

"It's literally the worst disease you've never heard of," said father, Brett Kopelan.

"Rafi was born with a rare connective tissue disorder called epidermolysis bullosa (EB). The genetic disease causes her skin to break down in response to the slightest friction. Even minor contact -- the scratch of a fingernail, the tag on the back of her shirt -- causes her skin to tear or to erupt in blisters" Read more on CNN Health

Join the Rafi's Run Facebook Page

Facebook: RafisRun / Via Facebook: RafisRun

Rafi's Run raised $200,000 last year toward research for a cure!

Video of the First Rafi's Run in 2012!

Read more about how you can help no matter where you live!

"Sunday, March 10, 2013, the second annual Rafi’s Run 5K and children’s fun run will be held in New York’s Riverside Park.
Whether or not you’re in NYC next month, you can help Rafi, you can help all the Butterfly Children, by raising funds and raising awareness of EB. All proceeds will go directly to researchers at DebRA (Dystrophic Epidermolysis Bullosa Research Association of America), seeking a cure for the 1 in 50,000 Americans born with this genetic disease that doesn’t discriminate by gender, race, ethnicity, and can occur where “there is no family history… as the result of a spontaneous genetic mutation.”

Learn more about EB from Rafi herself

"On Friday, Feb 1st, Rafi and her mother spoke to the 6th, 7th and 8th graders of her school about EB and Rafi's Run. Enjoy the video and get to know Rafi a little better!"

A personal note, I have the Weber Cockayne simplex type of EB. It was hard growing up with it and is still a struggle to live with at times. But I know if that was hard, it is nothing compared to the type Rafi has and she is such a brave wonderful person! Thank you from me too, for any help and support given to find a cure for this terrible disease. CMerry