Make Neurofibromatosis Visible: Michelle's Story
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Make Neurofibromatosis Visible: Michelle's Story
4.5K viewsMar 27, 2023
TikTokchildrenstumor
Big ideas. Bold science. Real impact. 🌟 Explore the 2025 NF Conference Highlights Report and see how innovative discoveries are driving clinical trials, accelerating treatments, and shaping the future of NF research. https://go.ctf.org/conferencehighlights2025 #EndNF | Children's Tumor Foundation
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Big ideas. Bold science. Real impact. 🌟 Explore the 2025 NF Conference Highlights Report and see how innovative discoveries are driving clinical trials, accelerating treatments, and shaping the future of NF research. https://go.ctf.org/conferencehighlights2025 #EndNF | Children's Tumor Foundation
242 views8 months ago
FacebookChildren's Tumor Foundation
Meet others with NF and learn about recent research advancements. The NF Summit is your opportunity to immerse yourself in the NF community. | Children's Tumor Foundation
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Meet others with NF and learn about recent research advancements. The NF Summit is your opportunity to immerse yourself in the NF community. | Children's Tumor Foundation
461 viewsFeb 16, 2023
FacebookChildren's Tumor Foundation
🎥 Step inside the leading global event for NF research and care! The NF Conference is where scientists, clinicians, and experts from around the world come together to push boundaries, share breakthroughs, and collaborate on new ways to improve the lives of people with NF1 and all forms of schwannomatosis, including NF2-related schwannomatosis (NF2-SWN). Hosted by the Children’s Tumor Foundation, this annual event sparks innovation across basic, translational, and clinical research — and its imp
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🎥 Step inside the leading global event for NF research and care! The NF Conference is where scientists, clinicians, and experts from around the world come together to push boundaries, share breakthroughs, and collaborate on new ways to improve the lives of people with NF1 and all forms of schwannomatosis, including NF2-related schwannomatosis (NF2-SWN). Hosted by the Children’s Tumor Foundation, this annual event sparks innovation across basic, translational, and clinical research — and its imp
1.3K views9 months ago
FacebookChildren's Tumor Foundation
At the Children’s Tumor Foundation, everything we do drives treatments for people living with NF1, NF2-SWN, and SWN. The NF field is entering a powerful new moment—one where we have the potential to truly end NF. These CTF milestones show that bold ideas can become real solutions for every form of NF. The Future Starts Here. 🌟 A Second FDA-Approved NF1 Drug Gomekli (mirdametinib) won FDA approval — only the second drug ever approved for NF1 and the first for adults. The first FDA approved NF1 d
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At the Children’s Tumor Foundation, everything we do drives treatments for people living with NF1, NF2-SWN, and SWN. The NF field is entering a powerful new moment—one where we have the potential to truly end NF. These CTF milestones show that bold ideas can become real solutions for every form of NF. The Future Starts Here. 🌟 A Second FDA-Approved NF1 Drug Gomekli (mirdametinib) won FDA approval — only the second drug ever approved for NF1 and the first for adults. The first FDA approved NF1 d
1.3K views5 months ago
FacebookChildren's Tumor Foundation
Have you ever wondered: What is NF1? It's short for neurofibromatosis type 1, but what IS it? You’re not alone — and we’re here to help. In the Big Questions about NF series, Kate Kelts, RN, BSN, breaks down key questions and concerns that NF patients and families ask most often. Missed the previous episodes? Check out our YouTube channel! 🎥 www.youtube.com/childrenstumor | Children's Tumor Foundation
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Have you ever wondered: What is NF1? It's short for neurofibromatosis type 1, but what IS it? You’re not alone — and we’re here to help. In the Big Questions about NF series, Kate Kelts, RN, BSN, breaks down key questions and concerns that NF patients and families ask most often. Missed the previous episodes? Check out our YouTube channel! 🎥 www.youtube.com/childrenstumor | Children's Tumor Foundation
7.5K views5 months ago
FacebookChildren's Tumor Foundation
For 45 years, the Children's Tumor Foundation has steered the trajectory of NF research and clinical care toward astounding advancement, including the first FDA-approved NF treatment, with more on the horizon. This progress is a testament to CTF’s early trailblazers’ enduring spirit and perseverance. We were proud to celebrate this progress at this year’s Gala and honored at the generosity of our supporters who contributed over $2.7 million to advance NF research. Please enjoy this look back at
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For 45 years, the Children's Tumor Foundation has steered the trajectory of NF research and clinical care toward astounding advancement, including the first FDA-approved NF treatment, with more on the horizon. This progress is a testament to CTF’s early trailblazers’ enduring spirit and perseverance. We were proud to celebrate this progress at this year’s Gala and honored at the generosity of our supporters who contributed over $2.7 million to advance NF research. Please enjoy this look back at
869 viewsNov 16, 2023
FacebookChildren's Tumor Foundation
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Dive into our latest newsletter! In this issue, you will find: ⭐️ “Make NF Research Visible” Unveiling ⭐️ CTF Preclinical Hub ⭐️ Blood Test to Predict Cancer Risk ⭐️ NF Awareness Month ⭐️ Extraordinary Spirit: Patti Ptasznik ⭐️ And so much more! https://www.ctf.org/news/nf-news-spring-2024-is-available-now/ | Children's Tumor Foundation
324 viewsMay 6, 2024
FacebookChildren's Tumor Foundation
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Make NF Visible: Laura and Ken
2.1K viewsMar 25, 2021
YouTubeChildrens Tumor Foundation
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⏱️🌟 THE TIME IS NOW: A major turning point for NF research occurred in 2020, with the announcement of the FDA approval of selumetinib (Koselugo), the first approved drug for NF. At that time we shared a story you might remember: that of Philip Moss. At the tender age of 6, Philip’s neck began to swell, which set off alarms for his parents. Despite medical intervention, the swelling persisted, prompting surgery to investigate further. The revelation was life-altering: an inoperable plexiform tum
4.1K viewsNov 28, 2023
FacebookChildren's Tumor Foundation
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New progress in NF2 gene therapy ✨ CTF research published promising early steps toward a personalized gene therapy approach for NF2-related schwannomatosis—starting with patient-derived cells and advancing into more advanced tumor-like models. This research is still early, but it represents meaningful momentum for families living with NF2-SWN. Read what this progress could mean for the future: 🔗 https://www.ctf.org/news/nf2-gene-therapy-ctf-research-advances-a-promising-personalized-approach/ #
2K views5 months ago
FacebookChildren's Tumor Foundation
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At the Children’s Tumor Foundation we BELIEVE in ending NF. | Children's Tumor Foundation
9.5K viewsDec 9, 2022
FacebookChildren's Tumor Foundation
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El Registro NF es un sitio web seguro que permite a las personas que viven con todas las formas de NF desempeñar un papel activo en la búsqueda de mejores tratamientos. | Children's Tumor Foundation
135.8K viewsJul 9, 2024
FacebookChildren's Tumor Foundation
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Patient Story: Aidan | Pediatric Neurofibromatosis
4.4K viewsMay 23, 2012
YouTubeMontefiore Health System
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NF Summit 2024: NF1 Through the Lifespan
608 viewsApr 19, 2024
YouTubeChildrens Tumor Foundation
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We're thrilled to announce that the Children’s Tumor Foundation's short documentary "My Superpower" will be premiering at the 14th annual New Hope Film Festival in New Hope, Pennsylvania. "My Superpower" gives a glimpse into Catalya Castanon's journey with neurofibromatosis type 1, showcasing her strength through vision loss, chemotherapy, and pain. Don't miss this inspiring film about resilience and family love. More information about the documentary, the festival and the screening → https://ww
1.3K viewsMar 11, 2024
FacebookChildren's Tumor Foundation
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For over 70 years, Marcia has faced the challenges of NF1. As a child, Marcia has endured surgeries for disfiguring plexiform neurofibromas. As a young woman, she faced stares, isolation, and misunderstanding. Everything changed in her 30s when she found the NF community: “It was the first time I met others who looked like me.” Marcia turned her struggles into action—raising awareness and advocating for research. But for adults like her, treatment options have been heartbreakingly limited. Today
5.4K viewsDec 16, 2024
FacebookChildren's Tumor Foundation
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Brianna Worden, Children's Tumor Foundation 2020 National Ambassador
2.9K viewsNov 21, 2019
YouTubeChildrens Tumor Foundation
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Make NF Visible with the Children's Tumor Foundation
4.6K viewsMar 16, 2021
YouTubeChildrens Tumor Foundation
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A heartfelt THANK YOU to each and every one of you who made our Gala last night a spectacular success - a $2.7 MILLION DOLLAR Success! 🌈✨ Your support is the backbone of our cause, and your generosity is illuminating the path for positive change. 🙏💖 🌟 Your belief in our vision fuels our determination to develop treatments for all children and adults living with NF, and one day, End NF. The time, indeed, IS NOW 🌐🌺 ✨ This video about our 2024 NF Ambassador Kevin Martin premiered last night -
1.2K viewsNov 14, 2023
FacebookChildren's Tumor Foundation
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These Facts about NF are MUST KNOW! #endnf #neurofibromatosis #nf1 #nf2 #nf2swn #swn
2.4K viewsApr 30, 2025
YouTubeChildrens Tumor Foundation
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Children's Hospital of Richmond establishes biobank to tackle rare brain tumors
Apr 17, 2025
MSNWTVR Richmond,VA
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With unwavering commitment, we are honored to share this letter on Rare Disease Day from Annette Bakker, PhD, CEO, Children’s Tumor Foundation and Chair, CTF Europe: "This has been a February to remember! In just a few weeks, a new drug was approved for NF1, a biotech launched to develop next-generation NF treatments, and the first patient was dosed in a clinical trial for an AI-powered NF drug. This is what momentum looks like. But none of this happened by chance. Each of these breakthroughs—Go
3.2K viewsFeb 28, 2025
FacebookChildren's Tumor Foundation
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Visionary leadership. Global impact. Heartfelt dedication. Dr. Richard Soll has spent his career advancing drug discovery across the world — leading teams at WuXi AppTec, helping bring life-changing therapies to patients, and shaping biomedical innovation through partnerships that span continents. Now, the Children’s Tumor Foundation is proud to honor Dr. Soll with the Cloud Carrier Award at the 2025 National Gala, recognizing his groundbreaking work and deep commitment to the NF community. From
1.5K views7 months ago
FacebookChildren's Tumor Foundation
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The Children’s Tumor Foundation is proud to announce that Alexandra Norton will serve as our 2026 National Ambassador! Diagnosed with NF1 as a baby, Alexandra has faced surgeries, challenges, and triumphs with strength and purpose. Today, she’s turning her story into action—leading the Dallas Cupid's Undie Run, raising critical funds for research, and inspiring visibility and connection for the NF community. Join us in celebrating Alexandra's leadership and advocacy at this year’s National Gala!
2.5K views6 months ago
FacebookChildren's Tumor Foundation
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Driving treatments for people living with NF1, NF2-related schwannomatosis, and schwannomatosis is at the heart of this work. Your support helps move science forward and brings answers closer. Give at go.ctf.org/donate and your impact will be doubled. Thanks to Pat Spencer, a dedicated supporter for over 29 years, who is matching donations up to $50,000 in honor of her son and grandson, who live with NF. Offline gifts (checks, DAFs, wire and stock transfers) will be matched once received and ver
2.6K views5 months ago
FacebookChildren's Tumor Foundation
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NF Knowledge Series: New FDA Approved Treatment for NF1
1.8K viewsFeb 24, 2025
YouTubeChildrens Tumor Foundation
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What is NF? #nf #endnf #nf1 #nf2 #nf2swn #swn #childrenstumor #neurofibromatosis #schwannomatosis
1.5K viewsMay 1, 2025
YouTubeChildrens Tumor Foundation
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Connecting the Unconnected to End NF
756 viewsFeb 16, 2021
YouTubeChildrens Tumor Foundation
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Ask Kate! Can taking supplements impact NF1 tumor growth?
3K viewsMay 28, 2019
YouTubeChildrens Tumor Foundation
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