“Family Gathering was renewing for my soul!”

The FOP community gathered in Denver for the 2024 Family Gathering

In November, over 150 individuals gathered in Denver, Colorado, for one of our most treasured events as a fibrodysplasia ossificans progressiva (FOP) community: the Family Gathering.

The Family Gathering is an invaluable opportunity for individuals with FOP, families, researchers, doctors and caregivers to all be in the same room together.


Holly LaPrade (far right) speaking on a panel

For Holly LaPrade, it was a special chance to share her own FOP story and reflect on this year’s theme, Transformation: The Power of Change. Holly was diagnosed with FOP 28 years ago at the age of 16. Before her diagnosis, she was naturally reserved and shy but as her symptoms have progressed, she’s grown bolder in advocating for herself and sharing her story.

“I have become a stronger and more resilient person because of the transitions that I have experienced throughout my journey with FOP,” she says. “FOP doesn’t define who I am overall, but it has provided me with invaluable life experiences that have strengthened my ability to adapt to change."


The Richwines at the 2024 Family Gathering

For the Richwines, Family Gathering brings needed community with other parents who understand life with FOP.

Our first Family Gathering was renewing for my soul after a whole year of facing this diagnosis alone with my husband and not having anyone who understands or could help me with processing,” says Victoria Richwine. “We really enjoyed meeting other families. We didn’t feel alone for once on this journey and got to meet the doctors and all the FOP members and families. We returned home with hope and sense of community.”

Thank you to everyone who joined us this year! As Holly said, “whether you are a first-timer or a longtime community member, there is no comparison to being face-to-face with others who can resonate with the FOP journey.”

If you weren’t able to join us in person, you can access recordings of sessions here, and we hope you’ll join us in Minneapolis, Minnesota, November 13-15 for the 2025 Family Gathering! Learn more

 

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