The Power of Community

At four months old, Victoria Richwine’s son was diagnosed with fibrodysplasia ossificans progressiva (FOP).

The diagnosis was overwhelming. With a husband in the Marines, Victoria had dreamed of her son possibly following in his father’s footsteps one day. All of her hopes for the future changed overnight when they received the diagnosis.

“It’s really isolating when you don’t know anyone in the same ship as you,” Victoria says. “It’s easy to feel like we’re all sinking and drowning when you’re by yourself.” 



Last year, the Richwines decided to attend the annual Family Gathering to meet other families with FOP. It was their first time meeting other children who had the same rare disease as their son. 

The experience was life-changing in their journey with FOP. Not only did they learn practical advice for supporting their son and have the chance to hear directly from leading doctors and researchers, but they also gained an incredible community of families who uniquely understand the FOP experience.  

“It’s nice to meet moms who have been in the drowning phase but they’re no longer sinking,” she says. “They’re doing better, and there’s hope.” 

The 2024 FOP Family Gathering will be held November 7-9 in Denver, Colorado. This two-day event is a powerful opportunity for individuals with FOP and their families to connect in person with each other and learn from experts in the FOP field.

The Richwines are joining us again this year — and we hope you will, too! It’s difficult to understate the power of community and the encouragement of hearing the words, “Me too!” 

Get more information and the link to register before the October 23 deadline >

We have families joining us from 17 different states, as well as one family traveling from Bangladesh. We look forward to gathering together as a community soon! 

Questions about the FOP Family Gathering? Email us at [email protected]

 

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