IFOPA

Incredible work, Team Care for Rare! 🏊‍♀️💙 Katiana and the Care for Rare Swim Challenge 2026 raised $5,033 at their March 1 event at Metro Life Time Fitness in Florham Park, New Jersey! 🎉🙌 They're well on their way to their $10,000 goal, and they're not done yet! 🌊✨ Next up: An event at Newark Academy in April featuring alumnus Ian Cali as a guest speaker! Can't attend but want to support their efforts? You can still donate! See link in comments👇 💛 Thank you to Katiana and everyone making waves for the FOP community! 🙏💙 #cureFOP #FundraiserForFOP #Fundraising

La esperanza no tiene fronteras. 💙 L'espoir n'a pas de frontières. Our FOP Awareness Day collection is now available in English, Spanish & French—with shipping to Mexico & Canada! 🌎 ICYMI: NEW items added! Shop by April 1 for guaranteed delivery: ifopa.org/shop NOTE: Live outside of North America? Check with your local FOP organization, as they may offer a way to purchase shirts locally. #FOPawareness #cureFOP

Join Joshua's Future Of Promises for their 18th Annual Bingo For A Cure! 🎉💙 📅 Sunday, March 22, 2026 📍 Allentown Fairgrounds, PA 🎟️ $35 advance | $40 at door Wishing them an amazing event! 🙌 Register: joshuasfop.com/events #cureFOP #FundraiserForFOP #Fundraising

Final Reminder: ACT for FOP Grant LOI Due Monday, March 23 Last chance to submit your Letter of Intent for FOP research funding! 💰 Up to $100,000 over 2 years 🎯 Multiple grants in 2026 Apply NOW: ifopa.org/act-for-fop-gr… #cureFOP #RareDiseaseResearch #ACTFORFOP #FOPResearch #HeterotopicOssification #RareBoneDisease #FibrodysplasiaOssificansProgressiva #TranslationalResearch #HeterotopicBone #ACVR1

What an incredible night! 🎉💙 The 3rd Annual Krisman Family Bingo Night raised $45,000 for IFOPA on Rare Disease Day! Hosted in honor of Ethan, who lives with FOP, this event shows the power of community fundraising. 🙌 Thank you to the Krisman family & the Annapolis Knights of Columbus Council 1384! 💛 #cureFOP #FundraiserForFOP #Fundraising

Call for Abstracts: 7th FOP Drug Development Forum Submit your unpublished or newly published FOP research for oral presentations & posters. 📅 Deadline: April 6 📍 Toronto | Aug 27-30, 2026 Submit: ifopa.formstack.com/forms/2026_ddf… Details: ifopa.org/2026-fop-ddf #cureFOP #RareDiseaseResearch #ACTFORFOP #FOPResearch #HeterotopicOssification #RareBoneDisease #FibrodysplasiaOssificansProgressiva #TranslationalResearch #HeterotopicBone #ACVR1

One-Week Reminder! Join us for a Research Fireside Chat with Dr. Juli Simon @penn_state 🔬 What if ultrasound could detect & interrupt abnormal bone growth in FOP? 📅 March 26 | Noon EDT / 17:00 CET Learn about her ACT for FOP-funded research & ask questions! Register: ifopa.formstack.com/forms/research…

Your feedback = real changes. 💙 We updated the Awareness Day store with 2 new women's v-necks, a 12% spandex option (Coolcore® Essential Tee), and a new tee with more coordinating colors (Port & Company® Core Cotton Tee). All styles available in English, Spanish & French. ⏰ Closes April 1 → ifopa.org/shop NOTE: Live outside of North America? Check with your local FOP organization, as they may offer a way to purchase shirts locally. #FOPawareness #cureFOP

FOP Awareness Day is coming up in April! 💙 FOP Awareness Kits are the perfect tool to share your FOP journey with teachers, coaches & your community. Each kit includes bracelets, awareness cards, emergency cards, stickers & more! 🙌 Order today: ifopa.org/order-awarenes… 💜 @RootToRise #FOPawareness #cureFOP #RareDisease

Join us at the 7th FOP Drug Development Forum: The premier biennial conference advancing safe & effective FOP therapeutics. 📍 Toronto, Canada 📅 Aug 27-30, 2026 A unique opportunity to share research, collaborate & network with leading experts. Open exclusively to researchers, clinicians, pharmaceutical/biotech employees, and regulatory agency representatives. Registration open: ifopa.org/2026-fop-ddf #cureFOP #RareDiseaseResearch #ACTFORFOP #FOPResearch #HeterotopicOssification #RareBoneDisease #FibrodysplasiaOssificansProgressiva #TranslationalResearch #HeterotopicBone #ACVR1

📌 FINAL Reminder: Join our FOP Caregiver Support Group on Tuesday, March 17, at 12 PM EDT / 17:00 CET 💬❤️ Caring for someone with FOP is a journey filled with love, challenges, and strength. You deserve a community that gets it. Led by Dr. Al Freedman (@amf41) 👉 Register: ifopa.org/march-2026-fop… #CaregiverSupport #FOPawareness #RareDisease

Our FOP Awareness Day store is OPEN—and this year, it's bigger than ever! Shop our brand-new Built on Hope tees (2 designs!), hoodies, sweatshirts, hats, tumblers, totes, bags, and #cureFOP merch. 🛍️ ✨ NEW this year: Everything is available in English, Spanish, AND French. We ship to 🇲🇽 Mexico and 🇨🇦 Canada! A portion of every purchase supports the IFOPA and our mission to cure FOP. ⏰ Store closes April 1. Order now for guaranteed delivery by FOP Awareness Day! 🔗 ifopa.org/shop #cureFOP #FOPawareness

Deadline Extended: ACT for FOP Grant LOI Now Due March 23 More time to submit your Letter of Intent for FOP research funding! 💰 Up to $100,000 over 2 years 🎯 Multiple grants in 2026 Apply: ifopa.org/act-for-fop-gr… #cureFOP #RareDiseaseResearch #ACTFORFOP #FOPResearch #HeterotopicOssification #RareBoneDisease #FibrodysplasiaOssificansProgressiva #TranslationalResearch #HeterotopicBone #ACVR1

Call for Abstracts: 7th FOP Drug Development Forum Submit your unpublished or newly published FOP research for oral presentations & posters. 📅 Deadline: April 6 📍 Toronto | Aug 27-30, 2026 Submit: ifopa.formstack.com/forms/2026_ddf…: ifopa.org/2026-fop-ddf #cureFOP #RareDiseaseResearch #ACTFORFOP #FOPResearch #HeterotopicOssification #RareBoneDisease #FibrodysplasiaOssificansProgressiva #TranslationalResearch #HeterotopicBone #ACVR1

One-Week Reminder: ACT for FOP Grants Letters of Intent Due March 16 There's still time to submit your Letter of Intent for the IFOPA's ACT for FOP Grant Program. Deadline: Monday, March 16, 2026 Funding: Up to $100,000 over 2 years ($50,000/year) Awards: Multiple grants anticipated in 2026 Research Focus: • Novel research into FOP biology • Early detection and monitoring of physiological events preceding heterotopic bone formation • Novel therapeutic approaches for disease control and symptom management The ACT for FOP Grant Program supports translational research that advances the development of safe and transformative therapies for FOP. Learn more and apply: ifopa.org/act-for-fop-gr… #cureFOP #RareDiseaseResearch #ACTFORFOP #FOPResearch #HeterotopicOssification #RareBoneDisease #FibrodysplasiaOssificansProgressiva #TranslationalResearch #HeterotopicBone #ACVR1

📌 FINAL Reminder: Join our FOP Caregiver Support Group on Tuesday, March 10, at 12 PM ET / 18:00 CET 💬❤️ Caring for someone with FOP is a journey filled with love, challenges, and strength. You deserve a community that gets it. Led by Dr. Al Freedman (@amf41) 👉 Register: ifopa.org/march-2026-fop… #FOPawareness #RareDisease

Registration now open for the 7th FOP Drug Development Forum! 📍 Toronto, Canada 📅 August 27-30, 2026 The premier biennial conference advancing safe & effective FOP therapeutics. A unique opportunity to share research, collaborate & network with leading experts in the field. Learn more and register: ifopa.org/2026-fop-ddf #cureFOP #RareDiseaseResearch #ACTFORFOP #FOPResearch #HeterotopicOssification #RareBoneDisease #FibrodysplasiaOssificansProgressiva #TranslationalResearch #HeterotopicBone #ACVR1

ACT for FOP Grant Program Now Open | Letters of Intent Due March 16 The IFOPA is accepting applications for the Accelerating Cures and Treatments for FOP (ACT for FOP) Grant Program to enable translational research and advance the development of safe and transformative therapies for FOP. Funding Details: • Up to $100,000 over 2 years ($50,000/year) per grant • Multiple grants anticipated in 2026 Research Focus Areas: • Novel research into FOP biology • Early detection and monitoring of physiological events preceding heterotopic bone formation • Novel therapeutic approaches for disease control and symptom management Timeline: Letters of Intent due Monday, March 16, 2026 Learn more and apply: ifopa.org/act-for-fop-gr… We look forward to supporting the next generation of breakthrough FOP research. #cureFOP #RareDiseaseResearch #ACTFORFOP #FOPResearch #HeterotopicOssification #RareBoneDisease #FibrodysplasiaOssificansProgressiva #TranslationalResearch #HeterotopicBone #ACVR1

👉 Final Reminder: Join our March Bereaved Families Virtual Meeting on Thursday, March 5, at 8 pm ET 💙 A virtual space for those who’ve lost loved ones to FOP to support one another. Email Marilyn Hair (@marhair) at marhair1@frontier.com to sign up or share thoughts. Participants should be comfortable speaking and understanding English.

Wishing our friends at Metro Life Time Fitness in Florham Park, NJ an amazing day at the Care for Rare Swim Challenge 2026! 🏊‍♀️💙 Shout-out to Katiana Matlosz for leading this 5th annual event! Goal: $10K for FOP Research 🔬 Support them: ifopa.salsalabs.org/CareforRareSwi… 💛 #cureFOP #FundraiserForFOP #Fundraising