Children's Tumor Foundation

08/24/2026

The INSPIRE-NF1 study is still recruiting participants ages 12–15.

We’re pleased to bring forward this research opportunity: Healx is recruiting participants age 12+ in the U.S. with NF1 and plexiform neurofibromas (PNs) for the INSPIRE-NF1 (NF119) study.

The study will evaluate whether the investigational drug HLX-1502 can shrink PNs or stop them from growing and assess its effects on quality of life and pain.

To participate, you must:
- Have a diagnosis of NF1
- Have a plexiform neurofibroma
- Be 12 years or older
- Live in the United States

Participants attend clinic visits, undergo MRI and safety evaluations, and take the study medication three times daily.

Medication is provided at no cost, and Healx will reimburse part of travel expenses to clinic sites.

To learn more, visit https://clinicaltrials.gov/study/NCT06541847

08/20/2026

Back-to-school season brings new routines, new teachers, and for families living with NF…sometimes new worries.

A little preparation can make all the difference. Check out our guide that walks parents through the practical steps that set the stage for a confident start:

-Reviewing and updating your child's IEP or 504 Plan
-Building strong, early communication with teachers
-Organizing a portable advocacy folder that travels with your child
-Easing the transition with predictable routines
-Preparing for social questions and encouraging peer inclusion

You don't have to navigate this alone. You can also explore the full NF Parent Guidebook (available in six languages!) at our blog post. 🔗 Learn more at www.ctf.org/news/back-to-school-with-nf-tips-to-help-your-child-start-strong/.

And there’s more back-to-school support coming: our September NF Knowledge Webinar will take a deeper dive into navigating the school year with NF. Stay tuned for details!

08/19/2026

The Children’s Tumor Foundation NF Clinic Network (NFCN) is growing! Six new clinics have joined the network, bringing the total to 87 across the United States and Canada.

Finding healthcare providers who truly understand NF can make a meaningful difference for people living with NF and their families. These newest clinics bring expertise in pediatric and adult care, support through the transition to adult care, and comprehensive care across different stages of life — while extending the reach of specialized NF care to more communities.

Please join us in welcoming:

🔵 Corewell Health - Helen DeVos Children’s Hospital, Grand Rapids, Michigan — the first primarily pediatric NFCN clinic recognized in Michigan

🔵 The Hospital for Sick Children (SickKids), Toronto, Ontario, Canada

🔵 Loma Linda University Children’s Hospital, San Bernardino, California

🔵 Mayo Clinic Florida, Jacksonville, Florida

🔵 Sanford Health, Sioux Falls, South Dakota — the first NFCN clinic recognized in South Dakota

🔵 University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania

Learn more about the newest clinics joining the NF Clinic Network: https://www.ctf.org/news/six-new-clinics-join-the-nf-clinic-network/

08/18/2026

There's still time to register for this Thursday’s NF Knowledge Series webinar! We’re tackling one of the most common questions in the NF community: skin bumps.

Join internationally recognized NF expert Rebecca Brown, MD, for an easy-to-understand discussion of the skin tumors and bumps associated with NF1 and some forms of schwannomatosis.

You'll learn what causes them, current treatment options, and how to better understand the information you find online.

📅 Thursday, August 20, 2026
🕒 3:00 PM ET
💻 Live captioning provided

Register today: https://ctf.zoom.us/webinar/register/WN_ObXF-sGSTACzCRd1gj83jw

UAB - The University of Alabama at Birmingham

08/18/2026

Behind every person living with NF is a network of family members whose lives are shaped by the journey, too.

As the sister of someone living with NF1 and an advocate with Penny's Flight Foundation, Alivia Hill has seen the impact of NF from a unique perspective. This summer, a sponsorship from the Children's Tumor Foundation Junior Board brought her to her first NF Summit.

There, hearing from patients, researchers, clinicians, and advocates deepened her understanding of the broader NF community—and strengthened her commitment to advocating alongside her sister and others affected by NF.

Read Alivia's reflection on family, advocacy, and the message she couldn't wait to bring home to her sister: https://www.ctf.org/news/standing-beside-my-sister-reflections-from-my-first-nf-summit/

08/17/2026

Attention and ADHD-like symptoms are among the many ways that NF1 can affect daily life. CTF is funding research that digs into what drives these cognitive challenges.

Zoe Cappel is investigating how changes in dopamine signaling and brain circuitry may contribute to attention and ADHD-like symptoms in NF1. Through CTF's Young Investigator Award (YIA) program, her research aims to identify the brain pathways involved and inform future therapies aimed at improving cognitive function and quality of life.

CTF’s YIA program provides two-year salary support to early-career NF researchers, helping them pursue bold, innovative projects. Supporting these scientists moves the field closer to better treatments and real impact for the NF community.

Read our Q&A with Zoe: https://www.ctf.org/news/young-investigator-qa-with-zoe-cappel-on-understanding-attention-and-adhd-like-symptoms-in-nf1/

Cincinnati Children's

08/14/2026

Diagnosed with NF1 at three months old, Spencer has faced a childhood neuroblastoma, hearing loss, and surgery that meant relearning how to walk. Through it all, he became a mentor to other kids facing the same fears.

But he'd rather talk about music, gaming, Green Day, and his legendary mullet.

"Spencer has spent his entire life proving that resilience is not a single moment of courage. It is thousands of quiet decisions to keep going."
- Spencer's mother Zoe

Read more about Spencer’s story of NF here: https://www.ctf.org/news/spencers-nf-story-more-than-a-mullet

To submit your own Story of NF, visit ctf.org/storiesofNF

08/13/2026

NF Walk season starts this weekend!

We’re kicking things off in Utah, where Kelly and Travis Carpenter joined KUTV's Fresh Living to share their family’s NF journey, the impact of the Children’s Tumor Foundation, and why they’ll be walking alongside the NF community.

Utah is just the beginning. In the weeks ahead, communities across the country will come together to take steps, raise critical funds, and move NF research forward.

Watch Kelly and Travis’s story, then find an NF Walk near you at nfwalk.org.

https://kutv.com/features/fresh-living/utah-mother-and-son-share-their-nf-journey-ahead-of-annual-walk

TheChildren's Tumor Foundation is an organization that aims to support medical research and provide educational resources to families with children with tumors

08/12/2026

A reminder for NF families: the NF Parent Guidebook is available as a free PDF.

Navigating a child's NF journey can feel overwhelming, but no parent should have to do it alone. The NF Parent Guidebook is a comprehensive resource designed to support parents, guardians, and caregivers every step of the way. The PDF is filled with practical tips, expert advice, and invaluable insights for meeting the challenges NF can bring.

Download your copy here: https://www.ctf.org/nf-parent-guidebook-pdf/.

08/10/2026

Questions about skin bumps are often high on the list of concerns for people living with NF and parents of children with NF.

Join internationally recognized NF expert Rebecca Brown, MD, for an easy-to-understand discussion about the skin tumors and bumps associated with NF1 and some forms of schwannomatosis. Learn what causes them, current treatment options, and how to better understand the information you find online.

📅 Thursday, August 20, 2026
🕒 3:00 PM ET
Register today: https://ctf.zoom.us/webinar/register/WN_ObXF-sGSTACzCRd1gj83jw

Live captioning will be provided.

UAB - The University of Alabama at Birmingham