@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: • Visit the IFOPA Website • The New York Times | These Patients Struggle With Runaway Bones. Finally There’s Hope. • 🎤 Holly LaPrade shares her FOP journey in People Magazine • IFOPA Community Voices: "I didn't think we would be that one in a million" • IFOPA Registry Report 2025 • Register: November 11 FOP Peer Support Group • Register: November 16 FOP Transitions in Care Fireside Chat • Register: November 17 FOP Caregiver Support Group • Register: December 3 FOP Bereaved Families Virtual Meeting • Register: December 8 FOP Peer Support Group • Dr. Hsiao Research Study: Anti-IL1 Medications for FOP 🧬 and more • Mirum Pharmaceuticals and Incyte Announce Pivotal Late-Breaking Results for Zilurgisertib in Fibrodysplasia Ossificans Progressiva Accepted for Presentation at ENDO 2026 • Important Announcements about Zilurgisertib Clinical Trial - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • FALKON Trial Closing (December 19, 2025) • Preliminary Results: OPTIMA Trial (September 17, 2025) • International Clinical Council on FOP Releases Updated Editorial on Clinical Trials for FOP - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Clinical Trials Locations Map • FAQs: Drug Development & Clinical Trials • Watch: Patient Perspectives on Clinical Trial Participation • Lymphatic Drainage Resources • Navigating Kindergarten with FOP • New Resource: Understanding FOP's Impact on Hearing, Speech & Swallowing • 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 • Plan Now, Make an Impact Later - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Turn your car into hope: One mother’s story behind her vehicle donation - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • A Lasting Gift that Costs Nothing Today: Planned Giving • Become a Monthly Donor • Donate Your Unwanted Vehicle • Fundraising Ideas • ICC's FOP Medical Guidelines Published in JBMRPlus • Consider Rare: Suspecting and Diagnosing Fibrodysplasia Ossificans Progressiva (FOP) • Help us Invite Your Local Doctor to Our FOP Community • Earn CMEs: Navigating the Challenges of Managing HO • 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 • Episode 6: The Connections | Journey to Discovery • Episode 7: The Determination | Journey to Discovery • Episode 8: The Present Meets the Past | Journey to Discovery: A Breakthrough Built on Hope • Episode 9: The Collaboration | Journey to Discovery: A Breakthrough Built on Hope • Episode 10: The Double Peaks | Journey to Discovery • Episode 11: The Reveal | Journey to Discovery • Episode 12: The Impact | Journey to Discovery • Meet Nadine Groẞmann | IFOPA Board Chair • Meet Sue Kahn | IFOPA Board Vice Chair • Meet Manuel Robert | IFOPA Board of Directors • Meet Tiffanie Williams | IFOPA Board of Directors • Meet Jamal Porter | IFOPA Board Treasurer • Meet Hollie Schmidt | IFOPA Board of Directors Executive Committee Member-at-Large • Meet Jon Krisman | IFOPA Board of Directors • Donate | 2026 In Pursuit of a Cure: Journey to the Future • 🚀 YOUTUBE PLAYLIST: In Pursuit of a Cure 2026 • Support ☕️ Cade's Coffee Bar for FOP Research 🩵 • From Hope to Action: The Evolution of the FOP Drug Development Forum • A Mouse Model Moving FOP Research Forward - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Journey to the Future: How Your Support is Fueling the Next FOP Research Breakthrough - 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 • Meet our Launch Crew | In Pursuit of a Cure 2026: Journey to the Future • Regeneron Shares 84-Week Results from the OPTIMA Trial at ASBMR 2026 Annual Meeting - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Regeneron's OPTIMA Trial Results Published in The Lancet - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • U.S. FDA Approves Regeneron pharmaceutical’s garetosmab as a Treatment for FOP - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • pasatru.com • Healthcare Provider Resource | pasatruhcp.com • Her muscles are slowly turning to bone. She was the only American in a trial that might stop it. - Vanderbilt Health News • Mirum Announces 24-Week Results from Cohort 2 in the PROGRESS Clinical Trial - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • U.S. FDA Approves Mirum Pharmaceuticals' Zilurgisertib as a Treatment for FOP - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • ATEBRIOZ™ (zilurgisertib tablets 25mg) | Official Patient Site • ATEBRIOZ™ (zilurgisertib tablets 25mg) | Official HCP Site • 2027 Advocacy Series: School Support & Advocacy Interest Form • Quick Guides, Checklists, & Other Materials - Triage Health • Register Now | FOP and Nutrition Webinar with Staffan Berglund, MD, PhD • ãshibio Shares Preliminary Efficacy Data from the ANDECAL Clinical Trial at ASBMR 2026 Annual Meeting - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Register Now | 2027 Family Gathering Information Session • College, Careers and Vocations - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Donor-Advised Funds: Getting Your Charitable Dollars to Work - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Jack Fegan's 2027 Calendars to benefit FOP Australia • From Hope to Action: The Evolution of the FOP Drug Development Forum - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • FOP and Kidney Stones - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Recommendations for Flu Season • NEW: Mindfulness for the FOP Community (Interest Form) • Monthly Caregiver Support Group • Mental Health Exercises Created with Give an Hour • NORD Rare Caregiver Respite Program • Raregivers Emotional Journey Map • Listen: Empowering the Caregiver • Listen: Supporting the Caregiver • 2027 Family Gathering | June 24-26, 2027 in Philadelphia, Pennsylvania • 2027 Family Gathering Travel and Lodging Stipend | Apply by January 10 • 2027 Sample Budget • Listen: Strengthening Your Support Network • Watch: Navigating Immunizations and FOP • Read: March FOP Connection • Register: April Peer Support Group for Adults with FOP • Register: April Caregiver Support Group • Urgent Action Required: Federal Funding Pause Threatens Caregiver Services | Caregiver Nation Network • Take the Global Patient Insights Survey by March 31 • Healthy Smile Loading: Dental and Oral Health Resources from the IFOPA • Register for the Driving and FOP Webinar • ANDECAL Trial Now Enrolling Children 12 and Up and Adults at UPenn • 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 • IFOPA Ability Toolbox Homemade Tool Contest • Register: May 19 Caregiver Support Group • Register: May 12 Peer Support Group for Adults with FOP • Register: May 28 FOP Bereaved Families Virtual Meeting • 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 • 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 • In Pursuit of a Cure 2026 Community Fundraising - IFOPA - International Fibrodysplasia Ossificans Progressiva Association • Register: September 8 Adults with FOP Support Group • Register: September 10 FOP Bereaved Families Virtual Meeting • Register: October 20 FOP Caregiver Support Group • Register: October 13 FOP Peer Support Group • Schedule: 2026 Day of Giving • Register: October 22 FOP Bereaved Families Virtual Meeting • IFOPA Committee Interest Form Survey • Meeting Registration - Zoom • Register: November 13 Family Gathering Info Session