Saturday, July 10, 2010

My Marathon for FOP

 Ashley Kurpiel and Jason Gunter at the Getting2Tri National ParaTriathlon Training Camp

I have not done any direct fundraising for my races. Most events are held to raise money for a cause, so simply by participating we gave to a large number of organizations and charities.

This past year has been different. Physically, I am a different me. Mentally, I am a changed me. Not so much changed as more aware I think, aware in an enlightened way only the physical change was able to germinate in my mind.

My first marathon as an amputee runner will be the inaugural Charleston Marathon on January 15, 2011, which I will run honoring my friend Ashley Kurpiel while raising money for the International Fibrodysplasia Ossificans Progressiva Association (IFOPA).

What is FOP? From the IFOPA website:

"One of the rarest, most disabling genetic conditions known to medicine, it causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another."

I have written a few posts about Ashley which I have linked to here:

How To Live A Life
Ashley Kurpiel - Please Nominate for Nobel Prize

and a mention of our meeting:

Here Be Eagles


Ashley was one of the first people to contact me after my operation to tell me about the Amputee Coalition of America (ACA). I did not know she had FOP - and her complete story - until later. I was taken by her caring nature and offer to help me find others who were amputee runners. Had I not had my amputation I likely would have never come to know her, another loss for me in this life.

I am asking that you help by donating any amount you can to help fund the research that will cure this disease. FOP is very rare and there is no specific treatment other than managing it's effects. You can make a difference in this life, and perhaps the next.

Please Help.

My FirstGiving website is here.

Here are some links to Ashley and her story:

Carol and Ashley Kurpiel discuss Fibrodysplasia Ossificans Progressiva

Mystery Diagnosis - FOP Part 1
Mystery Diagnosis - FOP Part 2
Mystery Diagnosis - FOP Part 3
Mystery Diagnosis - FOP Part 4

Thank you my friends.


  1. This is going to be the race of a lifetime! Brilliant stuff, and I know that you're going to make it. Ashley and her story are amazing, too. I really look forward to seeing your progress and admit it gives me a real lift when I see the things that you achieve on your journey. Keep going!

  2. Hi Ian,

    Thank you for the kind words and THANK YOU for the donation. I am moved by the support and outpouring for FOP research and Ashley. She is such a sweet and gentle person, and I feel a special honor of running this race for her and this cause.

    - Richard