IFOPA

👉 Reminder: Join the Peer Support Group for Adults with FOP 🗓️ Tuesday, May 12 | ⏰ 12 PM EDT / 18:00 CEST A chance to connect and share facilitated by Dr. Al Freedman (@amf41), a psychologist & rare disease parent. 🔗 Register: ifopa.org/may-2026-fop-p… Participants should be comfortable speaking and understanding English. #FOPawareness #RareDisease

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-b… Participants should be comfortable speaking and understanding English.

Today, May 6, 2026, @mirumpharma announced to its investors that it has licensed the drug zilurgisertib, an ALK2 kinase inhibitor, currently being developed by @Incyte for FOP (PROGRESS Phase 2 trial, NCT 05090891). And in even more exciting news, we now know that data from Part 1 of the PROGRESS trial (patients aged 12 and up) has been filed with the US Food and Drug Administration (FDA) through a New Drug Application (NDA). The NDA has been accepted and has Priority Review, with an expected Prescription Drug User Fee Act (PDUFA) (i.e., decision) date of September 26, 2026. As of this announcement, the PROGRESS trial data have not yet been published or presented at a major medical conference, so there is no publicly available data on safety or effectiveness in individuals with FOP aged 12 and up. We hope that this data will become available this summer and will also be presented at the FOP Drug Development Forum in late August 2026. Learn more here: ifopa.org/zilurgisertib-…

It was an incredible month celebrating the 20th anniversary of the FOP gene discovery announcement—and we cannot end without honoring the woman who started it all 💚 Jeannie Peeper founded the IFOPA because she refused to let people with FOP face this disease alone. She laid the cornerstone that became the foundation for everything—the community, the research, the gene discovery, and every advance that has followed. As we saw throughout Journey to Discovery, none of it would have happened without her. And she has never stopped fighting for the future this community deserves. Thank you, Jeannie 💚 #FOPawareness #cureFOP #JourneytoDiscovery

The Ability Toolbox Homemade Tools Contest is Now Open! 🧰🏆 We're excited to celebrate the creativity and innovation of the FOP community by recognizing homemade tools that support independent living! 🙌 Homemade tools are so important because they can be customized to meet a person's specific needs and may be more accessible for people in areas without a lot of retail options. 🏆 Prizes will be awarded in two categories: 💡 Most Creative Homemade Tool 🛠️ Most Useful Homemade Tool Submissions will be open until May 31, 2026, and all tools will be featured in the Homemade Tools section of the Ability Toolbox Online Guidebook—helping others find inspiration and solutions that work for them ✨ 📌 Learn more about the contest and submission rules via 🔗 link in bio ☝️ or comment HOMEMADE for a DM with the link 💬 ❓ Questions? Email Melissa Davis, IFOPA Family Services Coordinator, at melissa.davis@ifopa.org or contact her via text or WhatsApp at +1 (605) 877-5289 Thanks to the Radiant Hope Foundation for their generous financial support of this contest! 👏 #AbilityToolbox #HomemadeTools

Journey to Discovery: A Breakthrough Built on Hope celebrates a breakthrough that belongs to an entire community—including those who are no longer with us to see how far we have come. 💚 We honor them today, and every day. Their courage, their contributions, and their lives are woven into every frame of this series and into every advance that has followed. We remember you. We carry you forward. 💚 #cureFOP #FOPawareness #JourneytoDiscovery

Today is the final day of our Global FOP Awareness Day campaign 💙 We're so close to our goal ... but we need your help to cross the finish line. This April, you've heard stories from Brooke & Ethan, Joe, Jordyn, and Nadine (@NadineGromann3)—stories that show what becomes possible when people with FOP have the support, resources, and community they need to thrive. Your gift today creates more of these moments. By midnight tonight, we will finish strong—but only with your support. 👉 Make your most generous gift today: ifopa.org/give-ad-2026 Thank you for showing up for the FOP community ✨ #FOPawareness #cureFOP

✨ We are overflowing with gratitude. ✨ This project would not exist without the incredible generosity of our sponsors and donors, and we want to shout every single one of them out. 🙌 💛 A very special thank you to our Leader Sponsor: @Regeneron Pharmaceuticals 💙 And to our Friend Sponsor: Ipsen Thank you to the FOP community organizations Joshua's Future of Promises, @FOPFriends, and FOP Germany for your meaningful gifts in support of this important story. We are grateful to Donna Martucci Segal & Gary Segal, and @MichelleDavisKC & Chris Wallingford, for your heartfelt contributions to the project. And for the generosity of current and former IFOPA Board Members who helped bring this project across the 🏁 finish line: The Brinkman-Madan Family • Maureen & Paul Brinkman • Robin Davis • Gretty & John Emmerich • Robin & Mark Gambaiana • @NadineGromann3 • Marilyn Hair & Richard Steele • Melissa & @kohleebree3d • Joe & Diane Martucci • Abbie & Gary McGuire • Karen Munro • Malcolm & Helen Munro • @HaydensHope4FOP • Sara Olsen & Paul Miltenberger • Molly Rhodes & David Skiff • Manuel Robert • Hollie Schmidt Thank you for believing in this story. 💛 #FOPawareness #cureFOP #JourneytoDiscovery

🚨 Just $21K left to meet our $50K match by April 30! Meet Nadine (@NadineGromann3), our IFOPA Board Chair living with FOP in Germany. In 2017, the IFOPA invited her to speak on a patient panel. "The sense of belonging was immediate and profound." That connection changed everything. She joined committees, then the Board. This January, she became our first Board Chair with FOP—and first international Board Chair. From isolation to belonging. From participant to leader. This is what your support creates: pathways for people with FOP to find their voice and purpose through advocacy resources, independence grants, mental health support, research funding, and healthcare provider education. Help unlock the final $21K by April 30. ✅ Every gift DOUBLED ✅ Monthly gifts matched for 1 year ✅ Increases to monthly gifts also matched Don't let this match expire 💙 👉 ifopa.org/give-ad-2026 #FOPawareness #cureFOP

🧡 Caring for someone with FOP is a unique journey—you don’t have to do it alone. Join our Caregiver Support Group on May 19 from 12–1 PM EDT / 18:00–19:00 CEST to connect, share, and support one another. 🧬 Led by psychologist Dr. Al Freedman (@amf41) 🔗 ifopa.org/may-2026-fop-c… #CaregiverSupport #CaregivingHappens #caregiver #FOPawareness #RareDisease

Contest Opens This Friday! 🧰 Ability Toolbox "Homemade Tools" 🏆 Contest We are excited for our second year recognizing community members for their creativity and usefulness in developing homemade tools to support independent living with FOP! 🙌 This contest will also help grow the Homemade Tools section of the Ability Toolbox Online Guidebook, allowing us to showcase the ongoing 🎨 creativity of our community. Homemade tools are important because they can be customized to meet a person's specific needs and may be more accessible for people in areas without many retail options. 💵 Cash prizes will be awarded to the winners in two categories: 💡 Most Creative Homemade Tool 🛠️ Most Useful Homemade Tool 🗓️ The Homemade Tool Contest opens this Friday, May 1 and runs through May 31! Start planning your submission(s) now! ✨ More details in comments 👇 Thanks to the Radiant Hope Foundation for their generous financial support of this contest! 👏 #AbilityToolbox #AdaptiveTools

Wishing our friends at Ethan's Walk an amazing event this Sunday! 🚶‍♂️💙 The 3rd Annual Ethan's Walk, a 5K in honor of Ethan Krisman, is happening Sunday, April 26 at 10 am ET at Route 18 Park in Centreville, Maryland! 🎉 Registrations accepted through April 26. Registration Details: 💛 $50 for a family of 4 💛 $25 for adults 💛 $10 for children Can't join in person? Your donation will still support this special event! 🙌 📧 For more information, contact Kimberly Schultes at Kimberly.schultes3@gmail.com 👉 Register or donate here: ifopa.salsalabs.org/EthansWalk2026 Good luck to the Krisman family and everyone participating this Sunday! We're cheering you on! 💙🙏 #FOPawareness #cureFOP

For the dreamers who started this—and the dreamers who will finish it 💚 👉 All 12 episodes of Journey to Discovery: A Breakthrough Built on Hope are now available to watch, share, and revisit anytime at ifopa.org/journeytodisco…. This series was made possible by the 💙 generosity of our donors, the 🎥dedication of our filmmakers at Trailhead Films, and 🎤 every single person who sat down in front of the camera and shared their story. To the researchers who dedicated their careers, the families who gave everything they had, and every person in between who contributed something to this community along the way—this series is for you ✨ And a very special thank you to @Regeneron Pharmaceuticals for their generous support of this project. We are so grateful 👏 🦋 We hope Journey to Discovery continues to travel far and wide—raising awareness for FOP and standing as a lasting testament to the extraordinary resilience of this community for generations to come. Stay tuned—later this year, we will be releasing a full-length cut of all 12 episodes together. The story isn't going anywhere 💚 #FOPawareness #cureFOP #JourneytoDiscovery

For Global FOP Awareness Day, IFOPA Board Member and FOP mom Tiffanie Williams gathers a group of mothers featured in Journey to Discovery: A Breakthrough Built on Hope for an extended conversation that is equal parts history, gratitude, grief, and hope. Watch now: youtu.be/oZYBIox4xjg Featuring FOP moms Amanda Cali, Marilyn Hair, Carol Kurpiel, Moira Liljesthröm, Megan Olsen, and Victoria Richwine. Journey to Discovery: A Breakthrough Built on Hope is IFOPA's 12-part video series chronicling the remarkable journey to discover the gene that causes FOP and honoring the extraordinary community that made it possible. Watch the full series at ifopa.org/journeytodisco…. Thank you to @Regeneron Pharmaceuticals for their generous support of this special project. 💚 @marhair, @1armbandit, @HaydensHope4FOP #FOPawareness #cureFOP #JourneytoDiscovery

Happy Global FOP Awareness Day! 🌟 Meet Jordyn, who lives with FOP. After attending Family Gathering, she brought us an idea: Community Voices—a blog series for authentic FOP stories. “The IFOPA gave me a place where my creativity served a bigger purpose. Now I get to help tell our community’s stories – they are real, powerful, and ours.” Today, Jordyn leads our awareness campaigns. That’s what happens when we create space for people with FOP to tell their own stories. On this Global FOP Awareness Day, your gift can help more families access advocacy tools, educational resources, and community support, creating more pathways for people like Jordyn living with FOP to thrive. Every gift made today through April 30 is DOUBLED up to $50,000 ✨ New monthly donors: your gifts are matched for an entire year. Already giving monthly? We'll match any increase to your gift for a full year, too 💙 👉 Double your impact today: ifopa.org/give-ad-2026 #FOPawareness #cureFOP

It’s Global FOP Awareness Day—and we want to see how you’re celebrating! 🌍💚 Wearing your FOP awareness gear? Hosting an event? Rocking green or blue at school or work? Share a photo in the comments or tag us on social media with #FOPawareness ✨

"We were the generation of the dreamers." ✨ The final episode of Journey to Discovery honors everything the early families fought for—and everything the next generation now inherits. In honor of Global FOP Awareness Day, today we conclude 🧬 Journey to Discovery: A Breakthrough Built on Hope—a 12-part video series chronicling the remarkable journey to discover the gene that causes FOP, and the extraordinary people who refused to stop until they found it. Episode 12 is live now: ifopa.org/episode-12 All 12 episodes are now available. Watch the full series at ifopa.org/journeytodisco… 🌍💚 🎬 Produced by the IFOPA, in collaboration with Trailhead Films Thank you to @Regeneron Pharmaceuticals for their generous support of this special project 👏 #FOPawareness #cureFOP #JourneytoDiscovery

Where were you when you heard the FOP gene had been discovered? For FOP mom Marie Fahlberg of Svenska FOP-föreningen, the 🇸🇪 Swedish FOP organization, it started with a phone call just after midnight—and by the next evening, she and her son Hugo, who lives with FOP, were on Sweden's national news. ✍️ Read more from Marie in her blog post from 2006: fopsverige.se/17arpa17dagar-… Marie's story is just one of many from around the world. The final episode of the Journey to Discovery video series about the FOP gene discovery drops tomorrow, April 23, on Global FOP Awareness Day. Watch all episodes at ifopa.org/journeytodisco… 🧬 #cureFOP #FOPawareness #JourneytoDiscovery

The Journey to Discovery video series tells the story of the multigenerational FOP families whose DNA was essential to the gene discovery—but they were not the only ones who contributed 🔬 To every individual and family who donated biospecimens in support of FOP research: your contribution mattered deeply. Once researchers identified ACVR1 as the gene mutation causing FOP through those multigenerational families, they confirmed the same mutation across the broader FOP community—including those with spontaneous mutations 🧬 That confirmation was only possible because of you. The full picture of the discovery would not have been complete without your generosity. Thank you. 💚 Watch Journey to Discovery: A Breakthrough Built on Hope—11 episodes available now at ifopa.org/journeytodisco…. Episode 12 releases tomorrow, April 23, for Global FOP Awareness Day 🌍 #FOPawareness #cureFOP #JourneytoDiscovery

A heartfelt thank you to FOP Germany for their support of Journey to Discovery: A Breakthrough Built on Hope. 🇩🇪💚 Germany holds a very special place in this story. Episode 8 takes us to a farmhouse kitchen in rural Bavaria, where the Seidl family—a multigenerational FOP family whose DNA helped make the gene discovery possible—welcomed researchers in for cake and apple strudel. And IFOPA Board Chair Nadine Großmann (@NadineGromann3), who lives with FOP in Berlin, travels to meet them in one of the most moving moments of the entire series. The final episode drops tomorrow, April 23, for Global FOP Awareness Day. 11 episodes are available now at ifopa.org/journeytodisco… 🧬 #cureFOP #FOPawareness #JourneytoDiscovery