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What if the next breakthrough treatment for a rare disease is already sitting on a shelf? CTF CEO Annette Bakker, PhD, checked in with CheckRare about the growing opportunity to repurpose shelved drugs for rare disease treatment: ctf.org/news/repurpose… #EndNF

Diagnosed with NF2-SWN shortly after the birth of her third child, Brittany Iskula faced brain surgery and long-term health challenges. As a wife, mom of 3, school nurse, runner, and unstoppable #NFwarrior, she doesn’t let NF define her. 🔗ctf.org/news/brittanys…

“We didn’t know what those spots meant. We didn’t even know what questions to ask.” For many families, café au lait spots are the first sign of something more—often long before a diagnosis of NF or SWN. Learn what they could mean and what to do next: 👉ctf.org/cafeaulait

Your voice made an impact: $25M for NF research is included in the House's draft FY26 defense bill via CDMRP. Read more: ctf.org/news/25-millio… #EndNF

Living and now an amputee, Matthew Haas has never let NF define his limits. Now, he’s training for the 2025 Berlin Marathon with the NF Endurance Team—pushing for progress in NF research and inspiring others every mile of the way. ctf.org/news/nfe-athle… #EndNF #NFEndurance

Jenelle has lived with NF since she was a baby—from delayed milestones to chronic pain and physical fatigue. But she’s never let NF stop her from pursuing college and swimming competitively. Her persistence and strength make her an #NFHero. 🔗 ctf.org/news/story-of-… #EndNF

To every father, stepfather, grandfather, and father figure in the NF community—thank you. We see you. We honor you. And we’re grateful for your love, your strength, and everything you do. 💙💚 #FathersDay #EndNF #NFStrong #MakeNFVisible

🔍 Don’t miss “Regulatory Landscape in Rare Disease” at the NF Conference, a transatlantic convo w/ FDA & EMA exploring how agencies can support innovation in underserved conditions like NF nfconference.org #EndNF #nfcon25 #RareDisease #Neurofibromatosis #Schwannomatosis

Tomorrow at #BIO2025, CTF CEO Annette Bakker will speak on how we bring shelved drugs back to life—especially for #RareDisease like NF. Gomekli is proof: once deprioritized, now FDA-approved thanks to bold partnerships + persistence. SpringWorks go.ctf.org/3Zyf90i #endnf

“If you can get one drug approved, you can get more drugs approved.” CTF's bold and collaborative approach to advancing research and accelerating treatments for NF was recently spotlighted on #RareCast, the Global Genes podcast. ctf.org/news/listen-in… #EndNF

Have you ever wondered: What is NF2-related schwannomatosis? You’re not alone — and we’re here to help. Click here for the answer to a Big Question ➡️ youtube.com/shorts/38XTNzE… #EndNF #NF2 #NF2SWN #MakeNFVisible

At just 6 months old, Ivan was diagnosed with NF. It’s brought uncertainty, learning challenges, and some scary moments—but Ivan meets it all with joy, laughter, and resilience. 🔗 ctf.org/news/story-of-… 👉 Submit your own Story of NF: ctf.org/storiesofNF #EndNF

The results are in! We’re thrilled to share the 2025 I Know a Fighter Photo contest winner! 📸 Thank you to everyone who submitted photos. Every submission this year captured what it means to live boldly with NF. 💙💚 View the winner & finalists here: go.ctf.org/photocontest20….

5 years ago, the first treatment for NF1 tumors was approved by the FDA. It was just the beginning. 🔗 youtube.com/watch?v=cqLZyU… Since then: ✅ 2nd NF1 drug approved ✅ 60+ treatments in trials ✅ AI-discovered therapy in development ✅ 20+ companies in the fight #EndNF

Happy 4th of July from the Children’s Tumor Foundation! Wherever you are, we hope your day is full of joy, light, and love. 💙💚🇺🇸 #EndNF

What if your donation helped launch a scientist’s career—and a future cure for NF? It did for Dr. Stephanie Bouley. Read her story, then join us in funding the future of NF research. 🧬 ctf.org/news/a-decade-…

☀️ Looking for summer ideas that work for kids with NF? From backyard games to virtual zoo tours, check out our full guide of low-cost/free and customizable activities that support your child with NF. 🔗 go.ctf.org/summer #EndNF

How did an abandoned drug become a breakthrough for NF patients? PharmaVoice spoke with CTF CEO Annette Bakker about how drug repositioning—like the journey of Gomekli from @springworkstx—can change the game for NF. Read the full story: 🔗 ctf.org/news/abondoned… #EndNF

ICYMI, our latest NF Knowledge Series Webinar: “Understanding AI and its Impact on NF” is now available to watch on demand. 👉Check out our YouTube channel for this recording and more: youtu.be/KJ4UnF1EZD4 #EndNF

📸The photo albums are here! Take a look back at the powerful moments from the 2025 NF Summit & NF Conference: 👉#NFCon25: ctf.canto.com/v/nfconference… 👉#NFSummit25: ctf.canto.com/v/nfsummit/alb… Thank you to our amazing NF community for showing up with passion, purpose, and heart. 💙💚