After learning about FOP by chance, 14-year-old donor is spreading awareness and hope

Carrie Hoberg, 14, doesn’t have FOP. Nor does anyone she loves or even knows. Instead, she learned about the disease by watching “The Girl Whose Muscles Are Turning to Bone,” a documentary about Luciana Wulkan, a seven-year-old girl with FOP. Carrie was moved by what she saw.

“It was the first time I learned how extreme some conditions can be,” she said. “Watching Luciana struggle made me incredibly sad for her and other people with FOP.”

Carrie, who was just eight years old at the time, was determined to help.

“It really made an impact on Carrie,” her mother Yurie said. “She immediately told me she wanted to donate to support FOP patients and asked me how she could do that. That’s how I found the IFOPA.”

Since 2017, Carrie has been a loyal IFOPA donor. In addition to other gifts, she uses money she receives as birthday and Christmas presents to make annual donations, in large part, to help spread awareness.

“I felt passionate about showing my support since hardly anyone knows about FOP,” Carrie said. “I think it’s important for people to support causes that they don’t have a direct connection to because people with rare diseases like FOP can’t rely on donations from relatives alone. It simply wouldn’t be enough.”

Carrie has also given a presentation about FOP at her school to teach and inspire her classmates to act even if, like her, they don’t know anyone with FOP.

“At the end of the day, everyone must help each other to make the world a better place. Whether that is by donating or volunteering, it’s important to remember that even the smallest gesture can help,” she said.

Carrie says that her involvement with the IFOPA has opened her eyes to other people’s conditions and struggles and helped her realize how she can make a positive impact in their lives.

We’re so glad to have Carrie as a member of the FOP community. We connected with her after she completed a recent donor survey and won a gift card for her participation. It has been a joy to learn why she cares about our mission and how she is doing her part to spread awareness and hope as we work toward treatments and a cure together.

Every gift moves us one step closer to a cure. If you’d like to join Carrie in spreading awareness and hope, you can give today by visiting ifopa.org/donate_to_the_ifopa