Several years ago while working as an extra on a really awful movie, I met a lovely woman named Wendy Stetson. We survived the freezing cold set with a new friendship, but time marched on and we lost touch only to bump into each other at a blogging event – we’re still acting and have now added blogging (obviously) and motherhood to the mix. One of the things I love about blogging is the friends and contacts I’ve made – so many mothers ready to help with questions, advice, and general support.
Wendy reached out to me to help get the word out about a group of mothers coming together to help out a very special 6 year old girl named Rafaella Lily. Rafi 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.
There is currently no cure or treatment for Epidermolysis Bullosa, and 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: www.rafisrun.com.
Over the past two years 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 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 visit www.rafisrun.com to learn how you can help fund research to find treatment and a cure for this disease. Run or walk, donate to the cause, or volunteer your time – everything helps!