Children's Tumor Foundation

🇺🇸 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

While in Brussels for the Global NF Conference, we had the privilege and the pleasure of launching a very special new essay collection called "Women in NF: A journey into the heart and history of NF basic and clinical research." This collection of essays showcases the invaluable perspectives and insights of some of the women who have dedicated a decade or more of their careers to advancing the NF field. Women are crucial pillars in healthcare and education, but often overlooked when it comes to leadership roles. May these essays be a beacon, inspiring, educating, empowering, and kindling newfound awareness and acknowledgment of women's instrumental role in driving NF research and treatment further. Learn more here: www.ctf.org/womeninnf #endnf #makenfvisible #nfcon24

Thank you to our sponsors for your support of the Global NF Conference. Your partnership is instrumental in advancing our mission against neurofibromatosis and schwannomatosis. Together, we are making significant strides in research, awareness, and support for those affected by NF. #nfcon24 #endnf Alexion Pharmaceuticals, Inc. SpringWorks Therapeutics Healx Recursion Neurofibromatosis Therapeutic Acceleration Program Boehringer Ingelheim NFlection Therapeutics

Wrapping Up the Global NF Conference with a Vision for the Future! What better way to conclude this final day in than by focusing on AI and novel technologies to accelerate scientific advancements? Today, our sessions are dedicated to exploring these transformative tools. We were privileged to hear a Keynote Presentation from Casey Greene, PhD, Chair and Professor in the Department of Biomedical Informatics at the University of Colorado School of Medicine. Dr. Greene, with his rich background in developing machine learning methods to integrate large-scale datasets, shared profound insights in his keynote titled, "Engineering Serendipity: AI’s Rapidly Expanding Role in Research and Care”, including applications to NF. Today also features cutting-edge discussions on: - The latest radiomics models and AI applications in diagnosing and differentiating NF1-associated tumors. - Machine learning and high-content imaging for modeling neurofibromin in Schwann cells. - AI-driven drug response prediction algorithms for NF1 tumors. - Exploration of exosomes as biomarkers and therapy indicators. - Multi-omics analysis and single-cell profiling to understand NF1-related tumors and predict malignant transformations. As we look forward to the future, today's discussions reaffirm that the future of research will include AI and innovative technologies, shaping a new era of possibilities in the NF field. #nfcon24 #endnf

What a fantastic fireside chat at the Global NF Conference with Niklas Blomberg, Executive Director of Innovative Health Initiative (IHI), and Magda Chlebus, Executive Director of Science Policy & Regulatory Affairs at EFPIA - European Federation of Pharmaceutical Industries and Associations, moderated by Annette Bakker, Chief Executive Officer of the Children's Tumor Foundation. The discussion emphasized the importance of collaboration and the systems, trust, and transparency needed to accelerate the journey from discovery to development. Key takeaways included the necessity of strong leadership and champions, bringing diverse expertise together to bridge the gap between research and practical application. The speakers highlighted that robust data and well-structured ecosystems are crucial to driving progress efficiently. They also emphasized that flexibility and early involvement of all parties are essential for setting priorities and defining impactful projects. Public-private partnerships demonstrate how we can get treatments to patients faster by working together every step of the way. A big thank you to our inspiring speakers for their insights and dedication to making a real difference. Together, we are transforming the journey from discovery to approved treatments for patients! #nfcon24 #endnf