My Story

Fibrodysplasia ossificans progressiva (FOP) is an ultra rare genetic condition, affecting approximately 1 in 1 million people, with very few people having even heard of it, even within the medical community. I am lucky to be in a job where we are helping to raise awareness of the condition and drive improved care for people living with it. 

Over the past few years I have been fortunate enough to have met many members of the FOP community through this work. Despite the rarity and devasting effects of the condition, those living with it (and their caregivers) are some of the most positive and charismatic people I have had the pleasure of meeting. 

Funding for both care and research is limited. I want to help in my own little way to contribute not just in the "professional" work I'm doing, but by putting myself through a half marathon to raise as much money as I can to support this inspirational community.