Children's Tumor Foundation

This past spring, six patient representatives from the NF1 community met virtually with the FDA to share their experiences with cutaneous neurofibromas (cNFs). During the session, patient advocates emphasized the need for the medical community to understand that these are not merely cosmetic concerns. The FDA staff – who are experts in their fields and among the best science has to offer – listened attentively to the shared experiences of these brave NF patients, experiences that are not captured in medical charts or scans. This meeting, coordinated by the Children's Tumor Foundation, is a crucial step in ensuring the voices of those living with NF1 are heard and considered in future FDA evaluations. Read the summary report here --> https://lnkd.in/g2eaB6xV #endnf #makenfvisible #patientengagement #patientadvocacy #fdalisteningsession

Always Connected. Always Committed. Always On to #EndNF ! (No IT Outage Knocks Us Out!)

When doctors told Leanna that she would never dance again, she refused to accept that. After all, she was a dancer. In this talk, Leanna shared her journey from a surgery that left her paralyzed to crossing the finish line at the NYC Marathon. As a young adult living with NF2-SWN, Leanna has made it her mission to raise funds through the NF Endurance program and use her NF journey as a platform on social media to raise awareness. She inspires everyone and is always ready to make NF Visible through the good, the bad, and the not-so-glamorous moments. https://lnkd.in/gxXzyBcK

Exemplifying collaboration and innovation, the 2024 Global NF Conference brought together 1,000 brilliant minds across numerous disciplines to pave the way for advancements in neurofibromatosis and schwannomatosis research. Hosted by Children’s Tumor Foundation Europe, this annual gathering illuminated a unified pursuit for better patient outcomes and speedier drug development. A fitting tribute to the relentless spirit of the NF community. Learn more at nfconference.org and ctf.org #EndNF #NFCon24 #makenfvisible

🇺🇸 Happy 4th of July from the Children's Tumor Foundation! 🇺🇸 Wishing everyone a safe and joyous holiday weekend! 💙 💚 #EndNF

It is with sorrow that we inform the NF community of the passing of Dr. Vincent Riccardi, known to most as Vic. His contributions to our community and the field of NF have been immeasurable, and his legacy will continue to inspire us all. Our heartfelt condolences go out to his family, friends, and colleagues. Please read our tribute to Vic Riccardi, which we share with deep respect and sincere appreciation: https://lnkd.in/eWyyZEJf #EndNF

Why NF as a career path? "There is money, there is mentors, and it’s an extremely interesting topic because it’s complex, so we need courageous clinicians and researchers that are willing to put their teeth into this very difficult problem, but I tell you, rewarding it is.” – Annette Bakker, PhD, President, Children’s Tumor Foundation; Chair, Children’s Tumor Foundation Europe Check out this video for even more reasons to join the NF field and contribute to a better future for NF patients! #endnf

Leading experts from around the world gathered in Brussels for the 2024 Global NF Conference, hosted by Children’s Tumor Foundation (CTF) Europe. The conference brought together nearly 1,000 participants to discuss advancements in neurofibromatosis and schwannomatosis research and care. Highlights included: 💡 **Gene Therapy**: Breakthroughs aimed at correcting genetic mutations responsible for NF. 💡 **Comprehensive Care Models**: Emphasis on holistic approaches to improve patient outcomes. 💡 **Novel Therapeutics**: Promising new drug candidates targeting NF-related tumors. 💡 **Artificial Intelligence**: AI applications accelerating drug discovery and diagnostics. 💡 **Biomarker Discovery**: Advances paving the way for better disease monitoring and treatment. The conference underscored the necessity of continued investment and collaboration. Together, we are redefining the future of NF research to built a better future for NF patients worldwide! Read the full summary announcement here: https://lnkd.in/g3J_W-Y4 #endnf #makenfvisible

Rozalinda was just 21 when her world changed drastically. She went in for an MRI for hearing issues and discovered two acoustic neuromas and two spinal cord tumors. Six months later, ten more tumors were found, leading to significant life changes including hearing loss, balance issues, and tinnitus. Despite being thrown into the unknown of a NF2-related schwannomatosis diagnosis, Rozalinda holds onto her passions, dreams, and humor. Read more about her inspiring journey from fear to resilience, and beyond. 💙💚 Rozalinda's Story of NF: https://lnkd.in/g_2hUwyA Click here to submit your own Story of NF: ctf.org/tellyourstory #EndNF #MakeNFVisible #NFHero #NFAwareness

As we step into a future full of potential, this look back at NF Awareness Month serves as a beautiful reminder of our collective resilience and dedication. Please enjoy and share this look back at an incredible May 2024, a month dedicated to making NF visible, driving awareness, educating the broader public, and raising money to support research that will lead to effective treatments. (More about NF Awareness month at makenfvisible.org) #endnf #makenfvisible