Wednesday, November 17, 2010

Running to Win

Tonight I am going to give a short talk about my marathon training, and more specifically our cause, raising money for FOP research here.

Mike McKenna of the Charleston Running Club (CRC) contacted me via Twitter about this a couple of weeks ago. I was quite moved by the offer that the club could help raise some donations for our cause. In years past we have been occasional invisible members of the CRC, supporting it with dues but not attending any meetings. 

Having given a talk to the nurses at Roper St. Francis Bon Secours hospital, I don't feel quite as anxious about speaking to a group this time. These will be athletes, my compatriots in running, and there will be familiar faces in the crowd.

Ashley Kurpiel
I plan to give a short history of my amputation journey, my marathon training, and let them see how a running prosthesis works and answer any questions as best I can. I want to explain how I came to be running for Fibrodysplasia Ossificans Progressiva (FOP) research in honor of my friend Ashley and everyone affected by this rare disease. This is something that can be cured, the gene defect is now known, and the researchers are in search of the drug that will turn off the mechanism that turns connecting tissue into solid bone. We can win this race.

Ashley will be at the Charleston Marathon with her parents on January 15. Jennifer will be doing the half and I will be running my first marathon as an amputee runner. Please come say "hi" to this remarkable young woman, and know you can help stop this disease in its tracks.

We are counting on you.


  1. good luck with the talk! what a wonderful cause to run for

  2. The 8 weeks seems like tomorrow in many ways mm.

    If there is any good thing to this disease it's that it can be cured. AFAIK the researchers have to find what will turn the switch to "off." Not that it is simple, but the target is not a mutating one.

    - Richard