On Sunday March 6th, HANIA by Anya Cole will be participating as a team in the 5th Annual 5K Rafi's Run taking place at Riverside Park, NYC.
All proceeds raised on the day will go directly to research that will help to find a cure for EB.
When we first heard about Rafi, like most people we had no idea what EB (Epidermolysis Bullosa) was. We learned that there are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. EB is always painful, is often pervasive and debilitating, and is in some cases lethal before the age of 30. There is no treatment or cure. Daily wound care, pain management and protective bandaging are the only options available.
As were learned more about this terrible disease and it's devastating affects the more we wanted to do something to help. As we have come to know Rafi and her family we have been overwhelmed by the courage and resilience of this brave little girl. HANIA by Anya Cole is proud to take part in Rafi's Run this year for the first time and hope that you can help to not only find a cure but also to help the families who live with EB.
You can access our team page here to donate or to join us.
Raffi's Run HANIA Team Page
You can learn more about Rafi and EB HERE