Canadian FOP Network

06/05/2026

Don’t forget to vote!

Vote Now! Ability Toolbox "Homemade Tools" Contest Voting is OPEN 🧰✨

It's time to celebrate the creativity of the FOP community! Cast your vote for your favorite homemade tools in two categories:

🏆 Most Creative Homemade Tool
1st Place: $200
2nd Place: $150
3rd Place: $100

🛠️ Most Useful Homemade Tool
1st Place: $200
2nd Place: $150
3rd Place: $100

Who can vote?
✅ Individuals with FOP
✅ Direct family members and caregivers of people with FOP

⏰ Voting closes June 30, 2026 — cast your vote soon!

👉 Vote here: https://forms.gle/XGiv8pEicbRtWewKA
Or visit: ifopa.org/ability_toolbox_homemade_tool_contest

These tools represent the incredible problem-solving and creativity of our community 💙

Questions? Contact Melissa Davis at [email protected] or +1 (605) 877-5289 (text or WhatsApp).

Thanks to The Radiant Hope Foundation for their generous support of this contest! 👏

05/28/2026

Only a few more days left before the contest closes.

🔔 Reminder: Show Off Your DIY Skills! 🔔

The 🧰 Ability Toolbox Homemade Tools Contest is still accepting entries—don’t miss your chance to spotlight the clever tool you’ve created to make daily life with FOP easier.

Why enter?
• 🏆 Cash prizes for Most Creative & Most Useful tools
• 🌟 Your idea could be featured in the Ability Toolbox Guidebook, helping others around the world
• 💙 Celebrate the innovation and resilience of our FOP community

🗓️ Deadline: May 31, 2026

📥 Submit & see contest details: ifopa.org/ability_toolbox_homemade_tool_contest

❓ Questions? Email Melissa Davis, IFOPA Family & Provider Support Coordinator, at [email protected] or contact her via text or WhatsApp at +1 (605) 877-5289

Show us what you’ve built—and inspire others to live more independently! 💪

The IFOPA would like to thank The Radiant Hope Foundation for their generous financial support of this contest 👏

05/20/2026

Don’t Miss Out! The Homemade Tools Contest with the IFOPA Closes May 31 🧰🏆

We’re celebrating the creativity and innovation of the FOP community by recognizing homemade tools that support independent living! 🙌

Have you created a tool that makes your daily life easier? Whether it’s for eating, reaching, gripping, or something entirely unique—we want to see it! 💡

🏆 Cash prizes will be awarded in two categories:
💡 Most Creative Homemade Tool
🛠️ Most Useful Homemade Tool

Submissions close May 31, 2026! All entries will be featured in the Ability Toolbox Online Guidebook to inspire others in the FOP community. ✨

Homemade tools are so important because they can be customized to meet your specific needs and may be more accessible if retail options are limited.

More details in comments 👇

Thanks to the Radiant Hope Foundation for their generous financial support of this contest! 👏

05/20/2026

Do you have a homemade tool that you would like to share? Enter the contest before it closes!

Don’t Miss Out! The Homemade Tools Contest Closes May 31 🧰🏆

We’re celebrating the creativity and innovation of the FOP community by recognizing homemade tools that support independent living! 🙌

Have you created a tool that makes your daily life easier? Whether it’s for eating, reaching, gripping, or something entirely unique—we want to see it! 💡

🏆 Cash prizes will be awarded in two categories:
💡 Most Creative Homemade Tool
🛠️ Most Useful Homemade Tool

Submissions close May 31, 2026! All entries will be featured in the Ability Toolbox Online Guidebook to inspire others in the FOP community. ✨

Homemade tools are so important because they can be customized to meet your specific needs and may be more accessible if retail options are limited.

More details in comments 👇

Thanks to the Radiant Hope Foundation for their generous financial support of this contest! 👏

05/19/2026

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 responses to 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: ifopa.org/mirum-fop-faqs

Have additional questions? Contact us at [email protected], and we'll help connect you with the information you need.

05/10/2026

Happy Mother's Day to all moms. May you have a relaxing day with your family. 💐

Bonne fête des Mères à toutes les mamans ! Passez une journée de détente en famille.

05/07/2026

This is exciting to hear. Hopefully Canada will not be too far behind.

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.

05/04/2026

Journey to Discovery: A Breakthrough Built on Hope would not exist without two people who believed in this story from the very beginning 🎬

Dana Garrett and Dave Butz of Trailhead Films have been part of the FOP family since Family Gathering 2017. Over the years, they have built something special with this community: deep trust, genuine relationships, and a shared commitment to telling the FOP story with care and integrity.

For Journey to Discovery, they brought extraordinary skill, creativity, and heart to every episode of this series—and donated a significant amount of their time to make it happen 🫶

From unscripted moments that stopped everyone in their tracks, to equipment stranded at Heathrow for three days, to a Covid scare right before the San Francisco shoot—they navigated every challenge with grace and never lost sight of what this story meant to the FOP community.

Dana says it best: “It’s been an honor, truly. Over time, these relationships have become very real. We’ve been welcomed into people’s homes and lives, and that’s something we never take lightly.”

Thank you, Dana and Dave, from the bottom of our hearts 💚

✨ Read Dana’s behind-the-scenes Q&A and see exclusive photos from the filming here: ifopa.org/journey-to-discovery-behind-the-scenes-dana-garrett

05/02/2026

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 💚