Children's Tumor Foundation

Exciting news from Paris today!!! NF1 Hero Nélia Barbosa of France has won the SILVER MEDAL at the 2024 Paralympic Games!! Congratulations to both Nélia and Thomas Young of Great Britain for their remarkable performances and inspiring determination at this year's Games. We are incredibly proud of Nélia for her outstanding achievement today, representing the NF community with courage and strength. This is truly her moment to shine! #EndNF #MakeNFVisible. Watch some of the celebration here: https://lnkd.in/eE5CacyR

Have you struggled with how to talk to your child about their diagnosis of NF1? Or how to answer their questions about NF1? CTF is excited to announce the upcoming release of two new resources for families: 📖 Super Emerson – An activity book about NF1 for kids 👩👧 Talking to Your Child about NF1 – A companion guide for parents September 25, 2024 | 3:00 p.m. EST Join us for a live webinar with Ashley Cannon, PhD, MS, CGC and her colleagues to learn more about the research behind these resources, designed to help families navigate important conversations about NF1. As a bonus, everyone who registers will be the first to receive digital copies of both resources. 🔗 Register here: go.ctf.org/talktoyourchild Live captions will be available. #EndNF #NF1 #makeNFvisible

MASTERCLASSES IN NF is a series of online educational lectures for medical professionals by leading NF experts. Sep 12, 2024 | 11:00 AM ET (5:00 PM CET) Treatment Strategies for Vestibular Schwannomas: When to Treat? How to Treat? Lecturer: Michel Kalamarides, MD, PhD Pitié-Salpêtrière Hospital; Sorbonne University, Paris, France https://lnkd.in/gJ9seqbe Classes will be conducted in English only. #endnf #nfawareness #nfresearch #makeNFvisible

There's still time to submit your abstract to the #NFYIF24! This December, we're partnering with Creative Educational Concepts for the Neurofibromatosis Young Investigators' Forum. This research forum aims to encourage, promote, and empower Young Investigators to forge collegial connections and acquire the necessary skills and relationships to increase their research productivity and catalyze their career trajectory in neurofibromatosis. Submit your abstract for the chance to present your research amongst your peers and gain impactful mentorship: https://lnkd.in/gRPixf6f. #NF #EndNF #MedTwitter #MedEd

*** FDA Grants Priority Review to SpringWorks Therapeutics' New Drug for NF1 Patients *** The Children’s Tumor Foundation is thrilled to announce that our long-term partner, SpringWorks Therapeutics, has received FDA Priority Review for mirdametinib, a potential new treatment for NF1-associated plexiform neurofibromas. This marks a significant milestone for NF patients, particularly adults who currently lack approved therapies. CTF played a key role in the formation of SpringWorks and in driving the drug repositioning strategy that led to this promising development. We are committed to accelerating new treatments and are excited to see this therapy move closer to approval in the U.S. and Europe. “Plexiform neurofibromas may sit next to or surround vital organs and can cause serious medical complications for patients. While progress has been made, there remains a pressing need for more treatment options, particularly for adults who currently have no approved therapy,” said Annette Bakker, PhD, Chief Executive Officer of the Children’s Tumor Foundation (CTF) and Board Chair of CTF Europe. “CTF is dedicated to deploying its time, talent and funding towards accelerating the development of new treatments. We congratulate our long-term partner SpringWorks and are very excited to see the first drug repositioning program come so far for NF. We are thrilled that patients in the United States and Europe could soon have a new therapy available to them.” Congratulations to SpringWorks, and here's to continued progress in our fight against NF! Read the complete press release here: https://lnkd.in/e4uAFKMy

Time for our next Paralympic NF Hero spotlight! Meet Thomas Young from Great Britain, a sprinter in the T38 100m! Diagnosed with NF as a child, Thomas has defied the odds with his incredible speed and determination, proving nothing can slow him down! We're cheering on both Thomas Young and Nélia Barbosa as they compete at the highest level in Paris. Their drive and spirit are truly inspiring! Stay tuned for updates, and let's support them as they go for gold! #EndNF #paralympics #paris2024 #goforgold #makenfvisible https://lnkd.in/ermUvrnA

Get ready to cheer!!! The Paralympic Games kick off tomorrow in Paris, and we're excited to follow two incredible NF Heroes competing on the world stage: Nélia Barbosa of France and Thomas Young of Great Britain! Nelia, a canoeist, was diagnosed with NF, which led to the amputation of her leg. But she didn't let that stop her - she embraced a prosthetic limb and continued her passion! Check out this inspiring video of Nelia sharing her journey and determination. Stay tuned - we'll be posting about Thomas, a sprinter, and his story too! Let's support Nelia and Thomas and celebrate their strength and resilience as they go for the gold! #EndNF #paralympics #paris2024 #goforgold #makenfvisible https://lnkd.in/ew5iwYtC

Thank you Innovative Health Initiative (IHI) for shining a light on NF! We are honored to be recognized as part of your #IHISummerOfScience. Your commitment to advancing science and innovation, especially in the realm of rare diseases, is making a tremendous difference for patients worldwide. We're proud to be advancing platform trials from our collaboration with the IMI project EU-PEARL for all forms of neurofibromatosis and schwannomatosis. We deeply appreciate your partnership and dedication to pushing the boundaries of what’s possible in patient care and treatment development. #IHITransformingHealth #HorizonEU #ClinicalTrials #EndNF https://lnkd.in/eQgfZfU9

📣 Attention Patients: Do you have a confirmed clinical diagnosis of NF1 and the ability to travel to Baltimore once yearly for 5 years? The cNF Natural History Study is still recruiting in two age groups: 10-19 and 40-50. (*other age groups have been filled) ✏️ Study Summary: A study of the natural history of cutaneous neurofibromas (cNFs) across all age groups to define windows of opportunity for early interventions, identify people most likely to benefit from treatments, and study the optimal methods for monitoring and assessing change over time in cNFs. 🌐 Visit this page to learn more: https://lnkd.in/gujdAhBr (all questions about the study can be directed to the contact listed on this page) #endnf

The defining moment for Madeleine in her journey with NF1 came while working at the hospital when she met a mother and her daughter, the latter of whom shared the same diagnosis as Madeleine. "(I was fortunate) to talk about my diagnosis with someone who could understand." 💙💚 Read Madeleine's Story of NF: https://lnkd.in/gmnNdcYP Click here to submit your own Story of NF: ctf.org/tellyourstory #EndNF #MakeNFVisible #NFHero #NFAwareness