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

The 3rd annual Rafi’s Run will take place on March 9, 2014 at 10 a.m. in Riverside Park at West 103rd Street, NYC. Join us! You can make a difference today!

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Sign up for Rafi’s Run 5K or the Kids Fun Run and Create Your Own Fundraising Page.

Make a Donation!
Find and Support One of Rafi’s Run Participants.

Volunteer your time on race day and help us get closer to a cure.

Rafi’s Run was created because there is NO CURE or TREATMENT for Rafi, a 6 year old girl from New York City who lives in pain. Rafaella Lily was born with a severe form of a rare genetic disorder called Epidermolysis Bullosa (EB). This disorder causes her skin to be so fragile that simply scratching an itch results in her tearing her own skin. EB has many complications and the list of harships Rafi endures is endless. Learn more about Rafi here. The fact that she smiles at all is inspirational.

Knowing this, a group of friends got together to make a difference. Rafi’s Run was started to raise money to fund research for a cure for EB, the “worst disease you’ve never heard of.” Please join us this year as we continue the fight.

Even if you registered for and participated in last year’s run, we need you to to register again this year. Please click on the “Fundraise” button at the top of this page to register for the 2014 Rafi’s Run and Kids Fun Run, and start fundraising today!

Jakub Tolar, MD, PhD receiving a $200,000 donation for EB research

Last Year We Raised $175,000

Our second annual Rafi’s Run was a huge success! It was a beautiful March day in Riverside Park, and we welcomed over 400 runners for the 5k and over 100 kids for the Fun Run. Even Rafi herself got to join in the Fun Run! Throughout the morning, there was such exuberant energy among the community, and we were all thrilled with the outcome.

The Rafi’s Run Committee and Rafi’s parents would like to thank everyone for their support last year. Whether you participated as a runner, a volunteer or a sponsor, we couldn’t have done it without you. And we can’t wait to see you again this year! We would especially like to thank our Corporate Sponsors, those who donated goods and services and those who donated their time to make all of this possible.

All $200,000 we raised last year will go directly to researchers who are finding a cure for EB. If you have not seen all of the amazing press that Rafi’s Run received over the past two years, please click here to read all about it!

Thank you again! We look forward to seeing you all on March 9, 2014 for the Third Annual Rafi’s Run!

See video from the First Annual Rafi’s Run