IFOPA
@ifopa
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Fund research to find a cure for FOP while supporting individuals and families through education, public awareness and advocacy.
Global
Joined January 2011
📅 One month to go! Sept 16 is In Pursuit of a Cure Day of Giving 💚. Join us to:.🎉 Celebrate 35 years of progress.🌟 Look ahead to the future.🤝 Honor the generosity of the FOP community. 🧬 Learn more: #InPursuitOfACure #FOPResearch #cureFOP
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💊 Clinical trials turn science into potential treatments for FOP. With IFOPA’s support:.✅ 8 trials launched.✅ 3 completed.✅ 5 active.✅ 1 treatment approved. “Clinical trials are a bold step into the future […] Together, we will get there. That is our hope.” — Dr. Fred
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From golf tournaments to coffee bars to bingo nights 🎯. 📽️ Hear the inspiring stories of FOP families raising funds for a brighter future: FOP families have raised millions to fuel research & programs — and now it’s your turn. Big or small, every
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💚 “Please consider supporting the IFOPA, so that families like ours can have hope for the future. So that we can have a cure in our son’s lifetime.” .— Wendy and Ben Russell. Join us Sept 16 for In Pursuit of a Cure Day of Giving and help advance research for more treatments & a
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🌟 Heading to Minneapolis for the 2025 #FOPFamilyGathering?. Just 15 minutes from our hotel is the Mall of America—520+ stores, Nickelodeon Universe, SEA LIFE Aquarium, and more!. No sales tax on clothes & shoes = fun and shopping after the Gathering 💙🛍️. 📌 Register now:
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🌟 Meet Bernadette, our 2025 In Pursuit of a Cure Campaign Ambassador! 🌟. “Being an ambassador means giving back and showing others they’re not alone," said Bernadette, who lives with FOP. Join us to advance critical FOP research! 🧬.#InPursuitOfACure
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🐾🦉💨 Fun Zone at Family Gathering is going wild this year!. 🌿 Minnesota Zoo (@mnzoo): Meet 3 amazing animal ambassadors up close 🐢🦉🐍. 💨 The Works Museum (@theworksmuseum): Experiment with wind & build a sail car to take home 🚗✨. Learning + laughter = the perfect combo!
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🎒 Back-to-school can bring extra challenges for FOP families — but the right adaptive tools can make all the difference ❤️. From slant boards to rolling backpacks, explore ideas in the Ability Toolbox 🧰 > School & Childhood. Need help? Contact Melissa
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💚 “We wouldn’t have the progress we have without the IFOPA.” — Ben Russell. When their son Cade was diagnosed with fibrodysplasia ossificans progressiva (FOP) at just 2 ½ years old, Ben and Wendy faced an uncertain future. 🎥 Watch the Russell's story here:
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🎶 Last year, the FOP community shared the songs that keep them going — and the result was an incredible In Pursuit of a Cure playlist full of strength, hope, and heart. 🎧 Listen anytime ➡️ P.S. > It’s still growing, and your song belongs on it. 💙.Drop
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“It was shattering to learn that our little boy had such a rare condition… But in the midst of that fear, we found hope.”. The Krisman family is honoring 35 years of FOP research by helping lead the way forward 🔬🙌. 🎥 Watch and share their story:
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In 2006, a team of researchers—funded by the FOP community—discovered that a mutation in the ACVR1 gene causes #FOP. That single breakthrough made everything possible, and it was funded in part by the IFOPA. It’s the first step in the journey from discovery to approved therapy.
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At just 4 months old, Victoria’s son was diagnosed with FOP. “It’s really isolating when you don’t know anyone in the same ship as you,” she says. Watch more: The FOP Family Gathering helped her find connection, guidance—and hope. 📌 Register now:
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“Our son, Ethan, is an amazing, energetic five-year-old. But when he was two and a half, our lives changed forever.”. Meet the Krisman family — this year’s 🧬 In Pursuit of a Cure campaign chairs — and hear why they’re helping lead the charge toward a future free of FOP 💚. 🎥
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🎒📚 Back-to-school season is here—and for FOP families, that can bring extra challenges. We’ve got you covered with resources to help make the transition smoother:.👉 Need extra support? Contact our Family Support Coordinator, Melissa Davis (contact
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Dr. Bob Pignolo, FOP expert and researcher at Mayo Clinic, has been in this fight for 25 years. Now, he’s calling on you. 🔬Watch his story: Join us September 16 for In Pursuit of a Cure Day of Giving. 🧬 Learn more at
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⚾️ What a year for Strike Out FOP!. Huge applause to Griffin Rizzi & the whole Rizzi team (shoutout to manager Shawna Rizzi!) for making this year’s Wiffle Ball tourney in Pittsford, New York a record-breaking success 💙. 🙌 16 teams.🌎 Players from New York, Pennsylvania,
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