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. 

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