Aisyah Khan, age 19, who lives with FOP in Malaysia, recently participated in the "More Than You Can Imagine" event hosted by Lancome and the Malaysian Rare Disorders Society. She joined other rare disease community members and their families to share their journeys and shine on stage in adaptive fashion—proving that beauty, innovation, and dignity know no boundaries. 🌟 Thank you, Aisyah, for showing the world what's possible and for representing the FOP community with such grace and courage! 💙 #FOPCommunity #AdaptiveFashion

Coming up Tuesday: Gaming and FOP Webinar 🎮💙 Join Drew Redepenning from Gaming Readapted, and FOP community members Justin Henke and Joe Suchanek as they discuss the role video and computer games play in their lives, share tips and tricks for adaptive gaming solutions, and answer your questions. 🙌 📅 Tuesday, June 16, 2026 ⏰ 12:00–1:00 PM EDT / 18:00–19:00 CEST AI translation available in 60 languages! 🌍 👉 Register here: us02web.zoom.us/webinar/regi…

📊 Incyte and Mirum Announce PROGRESS Trial Data at ENDO 2026 @Incyte and Mirum (@mirumpharma) have announced that data from the PROGRESS trial (Cohort 1, ages 12 and up, only) will be presented at ENDO 2026, the leading global meeting on endocrinology research and clinical care hosted by the Endocrine Society. 💡 This will be the first opportunity to hear data on the safety and effectiveness of zilurgisertib. 📍 ENDO 2026 runs June 13-16 The IFOPA will attend ENDO and share what we learn with the FOP community following the presentation. Learn more: ir.mirumpharma.com/news/news…

💡🦼 Did you know a wheelchair could do that? Check out how Nicolas, who lives with FOP in 🇫🇷 France, uses his Permobil F5 Corpus VS chair and the features that make a difference for him! 🙌✨ We're spotlighting members of the FOP community and the unique ways they use their wheelchairs to support independence and daily life. Every wheelchair setup is different—and each one tells a story about problem-solving, customization, and independence. 💙 🦼 Want to learn more about wheelchair safety? Check out our wheelchair safety resources at ifopa.org/wheelchair_safety 👉 Want to share your wheelchair or a favorite adaptive tool? Click "Suggest a Tool" at guidebook.ifopa.org or reach out to Melissa Davis, OTR/L, for personalized guidance at melissa.davis@ifopa.org or 1 605-877-5289. #accessibility #AbilityToolbox

📊 Regeneron to Present OPTIMA Trial Data at ENDO 2026 @Regeneron has announced that data from the OPTIMA trial will be presented at ENDO 2026, the leading global meeting on endocrinology research and clinical care hosted by the Endocrine Society. 💡 This presentation will include additional data beyond the top-line results released in September 2025, providing the FOP community with further insights into the ongoing development of this therapeutic approach. 📍 ENDO 2026 runs June 13-16 The IFOPA will attend ENDO and share what we learn with the FOP community following the presentation. Learn more: investor.regeneron.com/news-…

Nadine (@NadineGromann3) is the first person living with FOP & first international community member to serve as Board Chair. Based in Germany, she brings lived experience & global perspective to IFOPA's leadership. Watch her full interview: youtube.com/watch?v=fGBAFzp4… #FOPCommunity #NonprofitLeaders

🎉 Celebrating 38 Years! 🎉 What started 38 years ago has grown into a global movement—one that connects families across continents, advances research, and transforms what it means to live with FOP. And we're just getting started. Thank you for being part of this journey. Thank you for believing that rare does not mean invisible. Thank you for helping us turn possibility into reality. Here's to 38 years, and to the years ahead 💙 #FOPCommunity

👉 Reminder: Join the Peer Support Group for Adults with FOP 🗓️ Monday, June 8 | ⏰ 12 PM EDT / 18:00 CEST Please note: This month's session is on a Monday instead of our usual Tuesday. A chance to connect and share facilitated by Dr. Al Freedman (@amf41), a psychologist & rare disease parent. 🔗 Register: ifopa.org/june-2026-fop-peer… Participants should be comfortable speaking and understanding English. #FOPawareness #RareDisease

Help shape the 2027 FOP Family Gathering! 🎉 June 24–26 in Philadelphia, PA — we want to hear YOUR ideas for sessions & topics. Interested in contributing or joining the planning group? Fill out the interest form: ifopa.formstack.com/forms/20… #2027FOPGathering #FOPCommunity

Next Tuesday's webinar with Drew Redepenning, Justin Heneke & Joe Suchanek explores how gaming brings joy, connection & purpose to their lives. Tips, tricks & your questions answered LIVE! 📅 June 16 | 12–1 PM EDT / 18:00–19:00 CEST 🌍 60 languages available Register: ifopa.org/gaming-and-fop-adv… Part of our 2026 Advocacy Series: Hobbies & Recreation. Learn more at ifopa.org/advocacy_series #AdaptiveGaming #AdaptiveHobbies

Thank You, Ethan's Walk 2026! 💙 The 3rd Annual Ethan's Walk raised nearly $6,500—the best event ever! 🎉 Special thanks to Kimberly Schultes, who organizes the walk in honor of Ethan. Your dedication means so much! 🙌 Ethan's Walk returns in 2027! 🚶‍♂️ #cureFOP

Early Registration Deadline: May 31 ⏰ 7th FOP Drug Development Forum—Toronto, Aug 27-30 Share research, network & collaborate with experts advancing FOP therapies. In-person & virtual options available. Register by May 31 for significant discounts! ifopa.org/2026-fop-ddf #cureFOP #RareDiseaseResearch #ACTFORFOP #FOPResearch #HeterotopicOssification #RareBoneDisease #FibrodysplasiaOssificansProgressiva #TranslationalResearch #HeterotopicBone #ACVR1

🧡 Caring for someone with FOP is a unique journey—you don’t have to do it alone. Join our Caregiver Support Group on Thursday, June 18, from 12–1 PM ET / 18:00–19:00 CET to connect, share, and support one another. Please note: This month's session is on a Thursday instead of our usual Tuesday. 🧬 Led by psychologist Dr. Al Freedman (@amf41) 🔗 ifopa.org/june-2026-fop-care… #CaregiverSupport #CaregivingHappens #caregiver #FOPawareness #RareDisease

Deadline TOMORROW to Submit Your Late-Breaking Abstracts for the 7th FOP Drug Development Forum (Due Friday, May 29) Topics include: • HO Disorders • Clinical Trials • FOP Biology • Drug Discovery • Gene Therapy 👉 Submission Deadline for Late-Breaking Data (unpublished data or data published after January 1, 2026): May 29, 2026 📅 Notification: June 12 📍 DDF will be held in Toronto | Aug 27-30 Submit: ifopa.formstack.com/forms/20… #cureFOP #RareDiseaseResearch #ACTFORFOP #FOPResearch #HeterotopicOssification #RareBoneDisease #FibrodysplasiaOssificansProgressiva #TranslationalResearch #HeterotopicBone #ACVR1

Save the Date! Gaming and FOP Webinar 🎮💙 📅 June 16 | 12–1 PM EDT / 18:00–19:00 CEST Hear from Drew Redepenning (Gaming Readapted), Justin Henke & Joe Suchanek about adaptive gaming solutions & how video games bring joy to their lives. AI translation in 60 languages! 🌍 Register here: ifopa.org/gaming-and-fop-adv… #AdaptiveGaming #FOPawareness

Join us at the 7th FOP Drug Development Forum! Share research, collaborate & network with experts advancing FOP therapies. 📍 Toronto | Aug 27-30, 2026 💻 In-person & virtual options 📋 Agenda: events.bizzabo.com/807369/pa… 🎟️ Register by May 31 for discounts: ifopa.org/2026-fop-ddf #cureFOP #RareDiseaseResearch #ACTFORFOP #FOPResearch #HeterotopicOssification #RareBoneDisease #FibrodysplasiaOssificansProgressiva #TranslationalResearch #HeterotopicBone #ACVR1

👉 Final Reminder: Join our May Bereaved Families Virtual Meeting on Thursday, May 28, at 8 pm ET 💙 Led by bereaved FOP mom Marilyn Hair (@marhair), the group is an opportunity for those who have lost a friend or loved one to FOP to come together virtually to support each other 🕯️ 🔗 Register: ifopa.org/may-2026-fop-berea… Participants should be comfortable speaking and understanding English.

Mirum Pharmaceuticals recently announced that some individuals living with FOP may be able to access zilurgisertib through a new Compassionate Use Program opened by Mirum and Incyte. What does this mean? If you would like to try zilurgisertib, you must meet ALL of these criteria: 🇺🇸 Live in the United States 🔬 Not currently participating in the PROGRESS clinical trial ✨ 12 years of age or older If you meet ALL of these criteria, your doctor can request the drug for you, but access is not guaranteed. Important to know: 📈 There is no published data available yet on how effective the drug is. How can I request the drug? 🩺 Speak to your doctor. A licensed doctor may request access to zilurgisertib for a patient through the Compassionate Use Program at mirumpharma.com/our-science/… (see the "Expanded Access/Compassionate Use" section at the bottom of the page). Mirum reserves the right to revise this policy at any time. 💚 @mirumpharma, @Incyte

One Week Remains to Submit Your Late-Breaking Abstracts for the 7th FOP Drug Development Forum (Due Friday, May 29) Topics include: • HO Disorders • Clinical Trials • FOP Biology • Drug Discovery • Gene Therapy 👉 Submission Deadline for Late-Breaking Data (unpublished data or data published after January 1, 2026): May 29, 2026 📅 Notification: June 12 📍 Toronto | Aug 27-30 Submit: ifopa.formstack.com/forms/20… #cureFOP #RareDiseaseResearch #ACTFORFOP #FOPResearch #HeterotopicOssification #RareBoneDisease #FibrodysplasiaOssificansProgressiva #TranslationalResearch #HeterotopicBone #ACVR1

Our FOP community members are always up to really cool things, and we love celebrating your accomplishments! IFOPA Board Member Manuel Robert, who lives with FOP in Argentina, recently defended his graduate thesis and earned his graduate degree in Mathematics. Congrats, Manuel! 🎓🎉 Want to shout out someone with FOP or share something you've been up to? Send an email to melissa.davis@ifopa.org 💙 #FOPawareness #FOPCommunity