FOP Marathon Update

 Ashley Kurpiel and Rajesh Durbal at the 2010 Getting2Tri National ParaTriathlon Camp

Last time I checked we had 3 people using FirstGiving to fund raise for FOP (Fibrodysplasia Ossificans Progressiva). 3 people, and I was late to the show. My fund raising site is here.

This made me think about fund raising and research in broad terms: what we do and how we do it. Let me explain.

There are many diseases that affect more lives than FOP. As Ashley Kurpiel mentioned in her video here, FOP is an orphaned cause. So why does anyone care? Millions live with, are transformed by, and die from cancer; we probably all know someone who has battled this dreaded monster. My grandfather, father, and brother have all succumbed to heart disease, why don't I fund raise for that?

I know people who do and have done fund raising for many causes; they have raised money to build facilities or to help offset costs to families. It is in many people's core nature to want to help others in need or distress. This bond helps define us as human beings.

So who do you try to help? How can you choose from an unending parade of causes, each one wrenching your heart when you see other people's pain and suffering? Why would you not want to help the cause that can affect the most people, like cancer research or heart disease?

Although we do help with these causes, I chose FOP because of my friend Ashley. It is an emotional calling, because I know she is one of the most courageous and kind people you could ever meet. Although her condition limits her mobility, it does not limit her love of life. She knows there are other Ashleys who will be born with FOP and strives to end this future for them. I run to help her make this dream possible.

There are a number of people I admire deeply for their fund raising love for their friends, including my step-daughter Becca Winn; my friend and coworker Betsy Ellingson; mighty Texan Joe Marruchella; a man making a difference, Christoper Wilno; and from across the pond, Ian Mountford. My wife Jennifer has raised money for MS research with the MS150 ride. There are many others, each of us know someone on a mission to help save lives or improve our human condition.

My fund raising efforts go directly to IFOPA through my FirstGiving site. This seemed to me to be the most efficient way to raise money with minimal overhead. My marathon is local, so I will not have to spend any money on travel or other expenses, and intend to make further donations to reflect those savings. Originally I had not put a goal amount on my FirstGiving site, but decided we all needed a target to shoot for and decided on $5000. It's an amount I think we should be able to raise that can offer some impact on this rare and debilitating disease.

Please help us help find a cure for this disease. Truly any amount is welcomed and appreciated. Each and every dollar counts, who knows which dollar will be the one that helps buy the researchers the time to say: WE HAVE FOUND THE CURE. Oh happy, happy day. 

As I think of my upcoming races and finally the marathon on January 15, 2011, I am humbled by the kind and noble spirit that is my friend Ashley Kurpiel and all those diagnosed with FOP. Their inspiration drives my heart forward, and you can help us all with your donation.

Thank you one and all.