The Worst Disease You’ve Never Heard of and How you can Help

rafi runkids Imagine having a child whose skin is so sensitive that even the clothing they wear rubbing against their skin can cause abrasions so severe they may never heal.  Imagine if hugging your child causes them to feel pain.  Imagine a child unable to avoid constant cuts, wounds and abrasions both externally and internally, and you can begin to imagine life with EB.

My friend Wendy’s friend, Rafaella Lily, was born with a severe form of a rare genetic disorder called Epidermolysis Bullosa (EB).  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.  Their skin is as delicate as a butterfly’s wings.

Knowing this, a group of moms from Rafi’s preschool got together to make a difference.  They began Rafi’s Run two years ago to raise money to fund research for a cure for EB, and thanks to the amazing generosity of family, friends, and businesses, have collected $400,000 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 a host of other children with similar disorders and beyond.  Information about Rafi, EB and EB research can all be found on their website:

rafis run logoOver the past two years the run has elicited a tremendous outpouring of community involvement and national attention. You can help make the Third Annual Rafi’s Run 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 am with a Children’s Fun Run at 11 for kids ages 12 and under.  We’ll have a raffle and snacks, a musician and a big green dinosaur, and everyone goes home with a super 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.
Right now they are looking for runners and walkers to participate, donors to support runners, corporate sponsors, donations for the raffle, and media to preview and/or cover the event.  Can you help the Butterfly Children spread their wings?

Click here for more information on how you can make a difference for Rafi and all of the children who suffer from EB.

Enhanced by Zemanta


  1. says

    This is heartbreaking. I just had a baby girl and I cannot imagine her feeling that kind of pain or my not being able to hug her as much as I do each day. I am a Stylist for a jewelry and accessories company called Stella & Dot. I would love to do a fundraiser for the organization by hosting an online trunk show with 20% of sales donated towards this cause. If you’re interested, you can visit my site at or e-mail me at Thanks for sharing!

Leave a Reply to Wendy Cancel reply

Your email address will not be published. Required fields are marked *