Meet Carli

Carli Henrotay was diagnosed with fibrodysplasia ossificans progressiva (FOP) at the age of 5. Despite living with this diagnosis for most of her life, FOP doesn't define her. 

She's a girlfriend, a fur mom, a friend, a daughter and an introverted homebody. "FOP will consume every aspect of my life, but it is not — and will never be — who I am," Carli says. 

In her lifetime, she's witnessed incredible progress in FOP research — from the discovery of the FOP gene when she was 10 years old to the launch of the FOP Registry where she could participate in ongoing FOP research from the convenience of home to the ability to participate in clinical trials. She's also witnessed the launch of gene therapy research, the approval of the first drug to treat FOP, and the relentless search for multiple treatments and, one day, a cure. 

What she's experienced and witnessed inspired her to get involved with this year’s In Pursuit of a Cure Day of Giving on September 17. As an In Pursuit of a Cure ambassador, she played a pivotal role in spreading the word about our inaugural Day of Giving and explaining the importance of funding research. 

"I don’t want the future generations to suffer from the effects of FOP," she says. "When I was first diagnosed in 2001, there was hope for a cure, but we didn’t think we would get there in my lifetime. But to be this close and only 23 years later is amazing, and I know I will see a cure in the next 23 years."

Thanks to Carli's efforts as a Day of Giving ambassador, more people around the world learned about the reality of living with FOP every day. 

Every dollar she helped raise will go directly to mission-critical research that will pave the way for a brighter future for Carli and everyone impacted by this rare disease. 

"Awareness and research are so important to me because I don't want the future generations to have to experience FOP," Carli says. "The anxiety of the unknown with FOP never stops, and I want the never-ending question of 'what will I lose next' to end."

If you've already contributed to the In Pursuit of a Cure Day of Giving, THANK YOU! Your generosity is moving the needle for FOP research. If you haven't given and want to join us, there's still time! Through the end of September, every gift will support critical research.

We're grateful to Carli for her tireless advocacy and thankful for every member of our community who is with us in the pursuit of a cure!