Sunday, August 19, 2012

8 Months With A Purpose

It is now 8 months until the 2013 Boston Marathon. As I was thinking about that future event, I read the words below from Ashley's mom Carol on Facebook:


Ashley, Carol, and Emily
Yesterday proved to be quite an eye opener for me. As most of my friends know, Ashley is out and about collecting donations to raffle for her upcoming event...Dancing (Zumba) for a Cure .... This of course is not an easy task for a girl with no motion in one leg bent in a kneeling position, the other laboring in quiet pain trying to keep up with the other, her one arm permanently resting to her side while tucked underneath 2 inches of skillfully copied articles of her disease and announcements of the upcoming Zumba event, to show local merchants just what this is all about in order to solicit gift card donations; gift baskets or the like in order to make this event worthwhile.

Meanwhile as I lay on the sofa yesterday, exhausted from washing and folding laundry, the door opened and in she came dragging her sore, calloused foot and the other painfully arched on a 5 inch sole with papers tucked under her one arm, balancing on her cane, face beaded with sweat and her paper thin sundress pasted to her wet, bent frame. Her labored body screamed 'help' but her face held a smile as she dragged herself to her usual position on the chair and smiled with 'I did great.' Suddenly my laundry didn't look so bad and without going into detail of her accomplishments (which were award winning by the way), Ashley once again displayed her ambition and desire to serve others.

Her FOP body is pretty much taken over aside from the little movement she has and hopes and prays to keep at least that, but has shown to all of us how important it is to her to keep the research going as they are so close to the cure. There are still so many children and young adults who still have the chance to keep their legs and arms moving and have so much promise just to remain as a functioning human being.

I know how hard it is every day for Ashley to walk to the bathroom or kitchen. I know how hard it is for her to put her make-up on and to drive her golf cart with 5 fingers and cross her left leg over to a right foot pedal to drive it. But her unselfish desire to find the cure for not only herself but others and her labor of shuffling in painfully to each merchant to display herself as the visual aid as to how cruel this disease is and how important their donation is to her cause, gave me an awakening yesterday just how unselfish she really is.

Feeling quite thankful this morning I can sit here and type with two hands and then run to take my own shower, dry my own hair and fix my own breakfast. Better yet, off to Zumba to gear up for the upcoming event that will hopefully bring more to the financial table to keep the lab functioning so Ashley can keep her foot dragging and her one arm slightly moving. Functions she so desperately desires to keep while she continuously encourages and inspires others just by moving at all.


This same week again I was able to witness another one of those small miracles I have written about before. The AMP It Up 5k is a race that happens to be on the same weekend of my next visit to ProCare in Buford, GA. Although my training in being restarted after my leg infection, I felt I needed to do this race in support of the cause: helping kids with amputation and limb differences attend a camp that meets their needs.

Ashley is not only attending this race, but will be a participant in her first ever 5k! When I read this at work on Thursday, to say I was overwhelmed would be a severe understatement. Work worries dissolved into the mist and hope remained in the light. It was unbelievable. I spent some long moments looking out my window, reflecting on this amazing person, our friend, Ashley.

As if I needed any more fuel for my Boston fire, here it was set ablaze anew. Ashley is not sitting around waiting for the day to come when FOP is beaten, she is out there every day living with it, helping others understand it, and by god doing something about it.

You can too. Please help us here.


OMG! I always get an email alert when someone has made a donation to my FirstGiving page. I just went there to copy the link for the sentence above and saw where there were two more donations I was unaware of! I always write a note to our donors and feel terrible I missed these.

Mike Nice and Jen Price, THANK YOU so much for the donations. I know you two understand how much this means to us, as friends and as compassionate people of the first order. I am sorry I missed seeing your donations but know when I found them this morning it was a wonderful surprise! I am contacting FirstGiving about why I did not receive emails, and will keep closer tabs on the donations when they happen.

Thanks everyone who has helped and continue to support the cause to stop FOP. Jen and Mike, a special thanks for making the morning before my long run one that will have added inspiration...that of friends helping friends helping those we have not met yet.

I run for you all today.

Friday, August 3, 2012


Tiffany S. Linker
5/2/1989 - 7/26/2012
Our dear friend Ashley Kurpiel posted a message and video last week that will take your breath away. Ashley's mother Carol wrote this: "Another child lost to FOP...She and Ashley were two of the 8 original children to join the IFOPA....please view this dedicated video that was placed in Tiffany's honor. After viewing this, please understand why we have such urgency in raising funds to cure this (one of the world's most devastating) disease."

This is going to break your heart. It should. I know there are many devastating diseases that have no guilt taking the most innocent from us. 

*See the video here. *(Note: the video website is not functioning at this time and I could not locate another souce.)

This renewed my fire to do what I can in raising money to help put an end to this disease. I am running the Boston Marathon to benefit the IFOPA and I will be running the 5k at the Francis Marion Dirt Dash that benefits the IFOPA here. 

I would like to thank, once again and from the bottom of my heart, Barb and Geno Reich who have supported this cause multiple times over the years. They made the first donation for my Boston effort next year. We have had several people support us more than once and I deeply appreciate their belief in this cause.


We have less than 9 months to Boston. Many with fibrodysplasia ossificans progressiva (FOP) have less than that to live their lives. It must be understood FOP can be stopped; this is not a mutating disease with a moving target. When it is defeated other diseases like the arthritis that took my foot can see the end of their reigns of pain and destruction of limbs and lives.

You can help us here.

And know, when I run Boston next year and see Ashley at the finish line, that you will have helped give her and all those to come with FOP the hope that it will not rule their lives. 

Please help us. And know when you do what you have done. 

You can be - and are - heroes.