Finding a support system
Thirty years have passed in a flash for Shay Williams. When the IFOPA was founded, he was 19 and attending the University of California, Berkeley. “My mom was the one who got involved at the beginning. Her goal was to find a way to help with research in addition to helping those living with the condition get the services and equipment they need to attend school whether it be elementary, middle or high school, even college since that is the age I was,” he recalls.
With the creation of the IFOPA, his family found their support system. “It was great for my mom to have some place to turn and learn of other families dealing with this rare condition. She became great friends with Jeannie and was also able to talk to other parents. It always helps to know others are dealing with similar things.”
When Shay thinks of the IFOPA, he recalls his favorite memory at the 2000 International Symposium in Philadelphia. “I was finally able to meet Jeannie in person. I also got to meet many different people with FOP. I had never seen so many people with the same condition I had,” he shares.
As the IFOPA continues to evolve, he is excited to see the organization dive into more research to help those living with the condition.
The IFOPA is so effective because of the widespread network of people with FOP and their families. Shay wants families facing the new reality of living with FOP to know they’re in this together. “Reach out to other families who have been dealing with living with this condition. It is helpful to know you aren’t completely alone and that there are others out there who may have answers to the questions you have been asking. FOP can be overwhelming, but remember to take it slow and steady, and face it together.”