Rafi’s Run was created because there is NO CURE or TREATMENT for Rafi, a 5 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 scratching an itch results in her tearing her own skin. EB has many complications and the list of things 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 for the research for a cure for “worst disease you’ve never heard of.” Please join us this year as we continue the fight.

This 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 there were over 400 runners for the 5k and over 100 kids for the Fun Run. Even Rafi herself got to run in the Fun Run! Congratulations to Jeffrey Arbeit who won the 5k. Throughout the morning, there was such great, positive and happy 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 this year. Whether you participated as a runner, a volunteer or a sponsor, we couldn’t have done it without you, and we cannot thank you enough. 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.