Reflections as we celebrate the IFOPA's 30th birthday

“I can’t believe it has been 30 years. The IFOPA has truly come a long way,” Monica begins.

If someone would have told Monica Anderson thirty years ago that signing up for a pen pal group would turn into an organization which connects people worldwide, then she would not have believed it.

Based off a suggestion by Dr. Michael Zasloff, Monica was connected to Jeannie Peeper. Since then, the IFOPA community has been a constant in her life. “I have met so many wonderful people with the same disease and their families! It’s so great to meet and talk to other people with the same disease, learning new things, giving ideas, and so much more.”

Through the three decades filled with countless memories, two experiences have been the defining moments of her IFOPA journey. “My favorite memory was when they discovered the receptor gene that causes FOP. I was overjoyed. Second, when Glasko Smith Kline said yes to clinical trials after I spoke.”

Since the creation of the IFOPA, Monica’s hope has not changed — to finally achieve a cure. “My FOP progressed quickly when I was eight years old. I lost all my physical mobility at one time. I was devastated! I was concentrating on finding a cure so I could feed myself, bathe myself, run outside, lay on the bed or the floor.”

Living with FOP is filled with difficult days and no one knows this better than Monica. As new families continue to face the drastic life change of living with FOP, she has advice to make the transition a tad easier. “Stay positive even when you’re feeling depressed and discouraged. Especially the parents because it helps the kids, young adults and grown ups with FOP cope,” says Monica.

With the receptor gene already discovered and progress being made in clinical trials daily, she is hopeful. “I’m looking forward to the future,” Monica concludes.