BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
EVENT DATE: Nov 01, 2015
Dear Family and Friends,
On November 1, 2015, I'll be running the New York City Marathon in honor of Robert Twible. Robbie is my cousin Kathleen's son, and he suffers from epidermolyis bullosa (EB), a rare disease that causes severe blistering both internally and externally from the slightest friction, rubbing, or other contact. Since last year, Robbie has had three surgeries to open his esophagus and clear the blistering. Walking has become difficult for him, and the everyday things that we take for granted are major ordeals.
Through all the pain, bandaging, doctors visits and surgeries, Robbie somehow maintains an incredibly positive attitute. He is an inspiration to everyone that meets him. He's always quick with a smile, and he's a huge fan of Broadway, Justin Timberlake, and Ellen, to name just a few of his interests. It is this inspiration that will get me through the marathon this fall.
I'm privileged to be running with the EB Research Partnership team. Kathy and I have been doing our weekend long runs together, and we're up to 14 miles and right on track with our plan.
Please support me in my efforts to find a cure for EB. Your donation will help continue the research that will hopefully lead to a cure for this horrible disease.