‘Stone man’ race brings awareness and funding to rare disease

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Bethany Walker never imagined that a prompting she received months ago would play itself out so smoothly.

The BYU Premed and Neuro clubs came together last Saturday to hold a 5K race in order to raise funds for¬†Fibrodysplasia Ossificans Progressiva (FOP), also known as the “Stone Man Syndrome.”

Danielle Coyne, a BYU student living with FOP, also played a major role in bringing the race together.

“It was more of a prompting I had last summer than my actual idea,” said Walker, BYU student and coordinator of the race. “I read an article called ‘The Girl who Turned to Bone,’ so when I got here our Neuro club started planning some kind of fundraiser for FOP, and that’s when we met Danie.”

FOP is a rare disorder, with roughly 800 reported cases worldwide. It causes soft tissue like muscles, tendons and ligaments to permanently transform into bone.

Cody Hickmott, a Utah resident living with FOP, said there is so little awareness about the disease that some doctors don’t even know it exists.

“I’ve had doctors tell me that I was mistaken and that it’s not possible,” Hickmott said. “I think spreading awareness will be a huge help and keep people from being misdiagnosed.”

The race drew in over 200 participants, exceeding the goal of the clubs. The funds raised by the race went directly to a non-profit FOP research organization called IFOPA.

 

 

 

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