A few mothers of Rafi’s friends at school who were inspired by Rafaella Lily Kopelan decided that they should raise money to find a cure for the disease Rafi suffers from.  Rafi was diagnosed at birth with a severe form of a rare, genetic disorder called Epidermolysis Bullosa, or EB for short.  It’s a terrible disease that makes her life uncomfortable and stressful.  Please take a moment to read about the disease by clicking the tab, “About EB”.  No child or person should have to live with this disease.  Unfortunately, as of today, there is no cure or treatment.  We are hoping to change that.

Two years ago, Rafi was the 8th child in the world to undergo a stem cell transplant in the hopes of treating EB.  It was a difficult time, but Rafi is now producing the protein she was unable to before the procedure.  You can read about her experience through the transplant and what it entailed at www.RafisWorld.com.

Rafi is now 4 years old, lives on the Upper West Side of Manhattan and attends an incredibly supportive school called Montclare Childrens School.  Although Rafi is often in pretty severe discomfort, she constantly has a smile on her face and a twinkle in her eye.

The way in which Rafi has handled her journey is awe inspiring and we need to find a cure for EB

The cost of doing nothing is too great
Because success is in the doing, we organized Rafi’s Run, a 5k Run/Walk

The event is Sunday, March 11, 2012 10:00am in Riverside Park  @ 103rd Street
RAIN OR SHINE!!!!!

Please sign up to run or walk the 5k by clicking the link above

We ask that all participants try to raise at least $500

If you can’t participate, please consider becoming a sponsor or making a donation to our cause
Proceeds from Rafi’s Run are restricted for the use of supporting the research for a cure

All donations will be collected and research funds will be distributed by:
The Dystrophic Epidermolysis Bullosa Research Association of America
DebRA of America is a registered 501(c)(3)
All Donations are tax deductible to the fullest extent of the law

Contact the Rafi’s Run Event Committee at 646-449-9804

Rafi’s Run Event Committee
Jacqueline Kopelan, Jamie Granet Bederman, Jill Pallad, Jennifer Zuckerman, Wendy Schwartz,
Suzanne Norris, Kate Paster, Jennifer Maulsby, Heather Chaet, Alyson Johnson and Elisha Glazer