Evelyn Mann “Can do this…”

“Reaching out for support and meeting others with FOP is simultaneously hopeful and terrifying. It’s scary to see what FOP can be for some people, but it’s encouraging to see what people are doing – having fulfilling careers, relationships, and just going about their lives the best they can.”

Evelyn Mann, 29, from Pennsylvania, works in nonprofit management at the Pittsburgh Center for Creative Reuse. She holds bachelor’s degrees in Chemistry and Civil Engineering, as well as a master's degree in Sustainability. She says her experiences as a child with FOP caused her to seek a career serving others. 

At the Pittsburgh Center for Creative Reuse, Evelyn works with artists and teachers to repurpose materials for artistic projects. 

Born with the characteristic toe deformity, Evelyn noticed weird things happening as a child, but “never enough to think anything was really wrong.” 

“I had a very active childhood. I took ice skating lessons – we were in no way cautious about avoiding trauma.”

 After a flare up in her shoulder at 15, Evelyn and her parents sought out a specialist and received the FOP diagnosis. They’ve been part of the IFOPA community ever since. Evelyn has traveled with her family to gatherings in Orlando and Saint Louis, and regularly corresponds with friends on social media. 

“The best thing about the gatherings is the information and updates. It’s so great to be face-to-face with clinicians and scientists.” 

Evelyn had always chosen to be very private about her FOP diagnosis, but after mentioning it on Facebook and sharing with friends and co-workers, she realizes how necessary it is to speak openly. 

“More awareness is needed. I want to continue to speak more, and advocate for myself and the entire FOP community.”

Editor’s Note: Evelyn’s best friend, Liz Wolensky, recently participated in a bike tour to raise money for FOP research and support. Learn more about Liz's bike tour here. Way to go, Liz!