IFOPA

Fund research to find a cure for FOP while supporting individuals and families through education, public awareness and advocacy.

[IFOPA @ifopa]

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: https://t.co/KQoBgWpty8

Part of our 2026 Advocacy Series: Hobbies & Recreation. Learn more at https://t.co/7T11fHmhZ9 #AdaptiveGaming #AdaptiveHobbies

[IFOPA @ifopa]

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

[IFOPA @ifopa]

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!
https://t.co/SvgAKWOhvG #cureFOP #RareDiseaseResearch #ACTFORFOP #FOPResearch #HeterotopicOssification #RareBoneDisease #FibrodysplasiaOssificansProgressiva #TranslationalResearch #HeterotopicBone #ACVR1

[IFOPA @ifopa]

🧡 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)

🔗 https://t.co/3UETqV9b3Y #CaregiverSupport #CaregivingHappens #caregiver #FOPawareness #RareDisease

[IFOPA @ifopa]

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👉 Submission Deadline for Late-Breaking Data (unpublished data or data published after January 1, 2026): May 29, 2026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: https://t.co/uIoawxkDoF #cureFOP #RareDiseaseResearch #ACTFORFOP #FOPResearch #HeterotopicOssification #RareBoneDisease #FibrodysplasiaOssificansProgressiva #TranslationalResearch #HeterotopicBone #ACVR1

[IFOPA @ifopa]

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: https://t.co/KQoBgWpty8 #AdaptiveGaming #FOPawareness

[IFOPA @ifopa]

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: https://t.co/54Fbb0b5Tp
🎟️ Register by May 31 for discounts: https://t.co/SvgAKWOhvG #cureFOP #RareDiseaseResearch #ACTFORFOP #FOPResearch #HeterotopicOssification #RareBoneDisease #FibrodysplasiaOssificansProgressiva #TranslationalResearch #HeterotopicBone #ACVR1

[IFOPA @ifopa]

👉 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: https://t.co/xrvSK2coa5

Participants should be comfortable speaking and understanding English.

[IFOPA @ifopa]

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 https://t.co/fNtsOyZcQg (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

[IFOPA @ifopa]

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: https://t.co/uIoawxkDoF #cureFOP #RareDiseaseResearch #ACTFORFOP #FOPResearch #HeterotopicOssification #RareBoneDisease #FibrodysplasiaOssificansProgressiva #TranslationalResearch #HeterotopicBone #ACVR1

[IFOPA @ifopa]

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 [email protected] 💙 #FOPawareness #FOPCommunity

[IFOPA @ifopa]

Angel's Coral, the 🇨🇳 Chinese FOP association, has grown to 153 families in an online community. On April 25, 46 of these families, along with 19 expert doctors and researchers, met in person for the very first time. An additional 861 people watched the meeting online.

Michelle Davis (@MichelleDavisKC) and Hope Newport from the IFOPA attended the meeting, sharing the 🧰 Ability Toolbox and connecting with families to identify ways to improve access to IFOPA programs and services.

🎉 Congratulations to the meeting organizers, Frank Zhang, Steven Shi, and Teresa Ye, on an incredible first-time event.

🖥️ You can get a glimpse into what the meeting was like by watching this video: https://t.co/yYP23UbI5f #FOPawareness #FOPCommunity

[IFOPA @ifopa]

Join us for our first live event of the 2026 Advocacy Series: Gaming and FOP! 🎮

📅 June 16, 2026
⏰ 12:00–1:00 PM EDT / 18:00–19:00 CEST

Join Drew Redepenning from Gaming Readapted, and FOP community members Justin Heneke 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 community questions. 💡

AI translation available in 60+ languages! 🌍

👉 Learn more and register here: https://t.co/KQoBgWpty8

[IFOPA @ifopa]

Grant Opportunity Alert! 🎉

Laughing at My Nightmare's Tech-Cessibility Program is NOW OPEN!
Supplies assistive tech & adaptive equipment to people with ANY disability in the 🇺🇸 United States.

Applications close June 1 for Cycle 1.

Apply: https://t.co/tk6UC9v7Xy

💚 @LAMNightmare #AssistiveTech #AdaptiveTools

[IFOPA @ifopa]

👉 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: https://t.co/ngGsfewbN9

Participants should be comfortable speaking and understanding English. #FOPawareness #RareDisease

[IFOPA @ifopa]

Following Mirum Pharmaceuticals' recent announcement regarding the licensing of zilurgisertib from Incyte, and in light of questions about the PROGRESS trial, we wanted to provide the FOP community with helpful context.

These Frequently Asked Questions (FAQs) were developed with input from Mirum Pharmaceuticals and Incyte Corporation.

We know clinical trials and pharmaceutical developments can feel uncertain, and we're committed to keeping the FOP community informed every step of the way. 🙌

👉 Read the full FAQs: https://t.co/FUdhxVz5LK
Have additional questions? Contact us at [email protected], and we'll help connect you with the information you need.

💚 @mirumpharma, @Incyte

[IFOPA @ifopa]

📌 FINAL Reminder: Join our FOP Caregiver Support Group on Tuesday, May 19, at 12 PM EDT / 18:00 CEST 💬❤️

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: https://t.co/NX8qI2zKXx #CaregiverSupport #CaregivingHappens #caregiver #FOPawareness #RareDisease

[IFOPA @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: https://t.co/J8i82UqGuk

Participants should be comfortable speaking and understanding English. #FOPawareness #RareDisease

[IFOPA @ifopa]

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: https://t.co/xrvSK2coa5

Participants should be comfortable speaking and understanding English.

[IFOPA @ifopa]

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: https://t.co/cdyveKMZRB

[Mirum Pharmaceuticals @mirumpharma]

We’re expanding our commitment to the rare disease community.

Mirum has in-licensed exclusive worldwide rights to zilurgisertib, an investigational oral therapy in development for fibrodysplasia ossificans progressiva (FOP)—an ultra-rare genetic disease, from @Incyte.

The FDA has accepted the NDA for zilurgisertib and granted Priority Review, with a PDUFA date of September 26, 2026.

This moment reflects years of progress driven by the FOP community, and we’re honored to add our voice to that foundation.

For patients living with FOP and their families, new treatment options cannot come soon enough. We’re committed to working with urgency to bring this potential therapy forward.

#FOP #RareDisease