@cure_fop

@cure_fop has been a member of Linktree for 5 years and joined in September 2021. The social media accounts linked to from @cure_fop are: • Facebook • Instagram • YouTube • LinkedIn • X Besides social media accounts, ifopa has populated their site with: • Earn CMEs: Navigating the Challenges of Managing HO • Donate to Join the Pursuit of a Cure | 100% of Funds Go Directly to Research • FOP and School Resources • FOP Physical and Occupational Therapy Guide • Navigating Kindergarten • Isla’s journey with FOP - Changing Faces Campaign • Back to School Resources - Changing Faces Campaign • Register: April 21 Caregiver Support Group • Episode 1: The Unknown | Journey to Discovery • Episode 2: The Question | Journey to Discovery • Episode 3: The Catalyst | Journey to Discovery • Episode 4: The Chance Encounter | Journey to Discovery • Episode 5: The Technique | Journey to Discovery • IFOPA Ability Toolbox Homemade Tool Contest • Episode 6: The Connections | Journey to Discovery • Episode 7: The Determination | Journey to Discovery • Register: May 19 Caregiver Support Group • Register: May 12 Peer Support Group for Adults with FOP • Episode 9: The Collaboration | Journey to Discovery: A Breakthrough Built on Hope • Register: May 28 FOP Bereaved Families Virtual Meeting • Episode 11: The Reveal | Journey to Discovery • Register: June 8 Peer Support Group for Adults with FOP • Register: June 18 Caregiver Support Group • Register: June 16 Gaming and FOP | Advocacy Series Webinar • Meet Nadine Groẞmann | IFOPA Board Chair • Creativity, Curiosity and Connection: Hobbies in the FOP Community - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Children with FOP and Recreation - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Donate | 2026 In Pursuit of a Cure: Journey to the Future • Meet our Launch Crew | In Pursuit of a Cure 2026: Journey to the Future • In Pursuit of a Cure 2026 Community Fundraising - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • 🚀 YOUTUBE PLAYLIST: In Pursuit of a Cure 2026 • pasatru.com • Healthcare Provider Resource | pasatruhcp.com • Journey to the Future: How Your Support is Fueling the Next FOP Research Breakthrough - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Register: September 8 Adults with FOP Support Group • Register: September 10 FOP Bereaved Families Virtual Meeting • Register: October 13 FOP Peer Support Group • Schedule: 2026 Day of Giving • Register: October 22 FOP Bereaved Families Virtual Meeting • Support ☕️ Cade's Coffee Bar for FOP Research 🩵 • A Mouse Model Moving FOP Research Forward - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Meet Manuel Robert | IFOPA Board of Directors • Episode 12: The Impact | Journey to Discovery • Register: October 20 FOP Caregiver Support Group • Watch: Navigating Immunizations and FOP • Episode 8: The Present Meets the Past | Journey to Discovery: A Breakthrough Built on Hope • Episode 10: The Double Peaks | Journey to Discovery • Listen: Strengthening Your Support Network • Her muscles are slowly turning to bone. She was the only American in a trial that might stop it. - Vanderbilt Health News • U.S. FDA Approves Regeneron pharmaceutical’s garetosmab as a Treatment for FOP - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Behind the Scenes: How the Russell Family Runs Cade's Coffee Bar - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Join me on the Journey to the Future - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • From Hope to Action: The Evolution of the FOP Drug Development Forum • Help us Invite Your Local Doctor to Our FOP Community • Consider Rare: Suspecting and Diagnosing Fibrodysplasia Ossificans Progressiva (FOP) • Meet Sue Kahn | IFOPA Board Vice Chair • Read: March FOP Connection • Register: April Peer Support Group for Adults with FOP • A Lasting Gift that Costs Nothing Today: Planned Giving • Register: April Caregiver Support Group • Navigating Kindergarten with FOP • Recommendations for Flu Season • New Resource: Understanding FOP's Impact on Hearing, Speech & Swallowing • ANDECAL Trial Now Enrolling Children 12 and Up and Adults at UPenn • Turn your car into hope: One mother’s story behind her vehicle donation - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Healthy Smile Loading: Dental and Oral Health Resources from the IFOPA • Meet Tiffanie Williams | IFOPA Board of Directors • Register for the Driving and FOP Webinar • Take the Global Patient Insights Survey by March 31 • Urgent Action Required: Federal Funding Pause Threatens Caregiver Services | Caregiver Nation Network • International Clinical Council on FOP Releases Updated Editorial on Clinical Trials for FOP - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Lymphatic Drainage Resources • Plan Now, Make an Impact Later - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Visit the IFOPA Website • Important Announcements about Zilurgisertib Clinical Trial - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Mirum Pharmaceuticals and Incyte Announce Pivotal Late-Breaking Results for Zilurgisertib in Fibrodysplasia Ossificans Progressiva Accepted for Presentation at ENDO 2026 • IFOPA Community Voices: "I didn't think we would be that one in a million" • Dr. Hsiao Research Study: Anti-IL1 Medications for FOP 🧬 and more • 2027 Family Gathering Planning Committee Interest Form • FALKON Trial Closing (December 19, 2025) • Preliminary Results: OPTIMA Trial (September 17, 2025) • Clinical Trials Locations Map • FAQs: Drug Development & Clinical Trials • Watch: Patient Perspectives on Clinical Trial Participation • ICC's FOP Medical Guidelines Published in JBMRPlus • NEW and Improved FOP Oral Health Hub • Wheelchair Safety and FOP • ICC Statement on Off-Label Treatments (Updated) • Explaining FOP to Children • Ability Toolbox Online Guidebook • Become a Monthly Donor • Donate Your Unwanted Vehicle • Fundraising Ideas