"That's the day the world changed."

Sharon was 7 years old when her sister, Nancy, was diagnosed with FOP.

"That’s the day the world changed for her and everyone in our family," Sharon says.

The two sisters shared the same family and childhood, yet their experiences with FOP were unique. Even though Sharon was not the one personally facing a rare disease, she still experienced grief and trauma.

At the IFOPA, we know that FOP impacts the entire family yet designated space and support to help siblings process their emotions wasn’t offered.

That’s why we introduced a sibling-centric workshop at the 2023 Family Gathering. Expert facilitator Alicia Maples guided participants through exercises and discussions. And, for many siblings, it was the first time they felt truly acknowledged and supported. They finally had someone sitting across from them who could say, "Me too."

As an organization that serves individuals impacted by FOP, we want to provide those "me too" moments for everyone touched by this disease — from caregivers and siblings to individuals with FOP.

Our 2024 programming covers a wide range of topics and offers support for your journey with FOP. We hope you’ll review our offerings planned for 2024 to find something that resonates with you, whether you’re a parent, individual with FOP or caregiver. 

At the Family Gathering workshop for siblings, our facilitator Alicia noted that the IFOPA "is in touch with the 360-degree needs of the family."

That goal drives our desire to provide programming that addresses your holistic needs. By participating in one of the programs planned for 2024 you can benefit as well as contribute to our mission to support the whole family and the whole person. 

We're grateful for each of you who participated in our community in 2023 and look forward to continuing to see you in 2024!

Make a Difference

Donate Connect Fundraise

Already a Member? Sign In

Sign Up for FOP Connection, Our Monthly eNewsletter