Thank you to team Addgene who ran the Superhero 5K in Cambridge, Massachusetts in honor of AJ! 

Meeting the needs of the global FOP community

In honor of ten-year-old Lincoln Wheelock, the 7th Annual Lincoln’s Legacy Run was held October 16, in Des Moines, Iowa 

“In Honor Of” fundraising increases impact of grassroots campaigns

Second Drug Development Forum 

Connecting researchers to advance therapy and drug development for FOP

The IFOPA is very pleased to share with you the first annual report to participants from the FOP Registry

Lori Henrotay shares advice on the service dog experience

“I would love it if everyone who has FOP would have an assistance dog by their side,” says Lori Henrotay. Her daughter Carli was diagnosed with FOP at five years old and has had service dogs since she was in the third grade.

Thank you to the Pullano family for hosting an incredibly successful Physical Freedom Festival in Middletown, CT 

New document is intended to define a preferred partnership approach and ensure IFOPA’s independence as a patient organization