Children's Tumor Foundation

10/07/2026

The recording of The State of NF in Texas and Beyond is now available to watch. This virtual discussion brought together two organizations working toward the same goal and showed how national research and local support connect to move things forward for the NF community.

Watch the recording here: https://youtu.be/3BIlKCHWtQI

10/07/2026

October is Breast Cancer Awareness Month.

Women with NF1 have a five times greater chance of developing breast cancer before age 50. These cards can help you start a conversation with your healthcare provider about when to begin screening, which screenings may be recommended, and what questions to ask.

Save them to your phone or share them with someone who may need them.

This breast cancer risk and screening information is specific to people with NF1 and should not be assumed to apply to NF2-related schwannomatosis or other forms of schwannomatosis.

This resource is for educational purposes and does not replace medical advice. Please talk with your healthcare provider about your individual health and screening needs.

10/07/2026

Need something fun to look forward to this winter?

Cupid's Undie Run is a brief run, a big party, and one unforgettable way to help fund NF research. Run, walk, dance, or just join the fun—pants optional.

Registration is now open! Find a Cupid’s Undie Run near you: cupids.org

10/06/2026

Teens living with NF1: This webinar was created with you in mind.

Join us Tuesday, October 13, at 7:00 p.m. ET for A Teen’s Guide to NF1. Genetic counselor Kara Anstett, MS, CGC, will share practical information for navigating NF1 during the teen years, and we’ll introduce CTF’s new resource, Living with NF1: A Guide for Teens.

The conversation will explore school, friendships, medical appointments, becoming more independent with NF care, and the questions teens most want answered.

Register and submit your questions: https://ctf.zoom.us/webinar/register/WN_cYqbTVwnQYecqXFyw8mszA

Live captions will be provided.

10/05/2026

Thad was just a few days old when he underwent his first eye surgery. Five more followed. Diagnosed with NF1 at age one, Thad continued to experience complications from an optic glioma until, at age seven, his eye was removed.

It was an extraordinarily difficult decision—but one that changed his life. “Once that eye was gone, Thad was able to thrive,” says his mom, Jess.

Thad’s experiences with NF inspired Jess to write Courageous, a children’s book about facing difficult moments with strength.

🔗 Read more about Thad’s story of NF here: www.ctf.org/news/story-of-nf-courageous-thad/

10/02/2026

"I’m hoping that research can find a way to shrink our schwannomas so we don’t have to deal with the pain anymore. Until then, I will continue to serve, protect, and live my life."

David was 26 when the pain started — sciatica that turned out to be a tumor on his spine. Years and several surgeries later, he was diagnosed with schwannomatosis.

David built a career in the police force and tried to keep NF in the background. Then in 2016, severe headaches revealed a brain tumor that had grown dramatically, but he was able to get it surgically removed.

For years, David only knew others with schwannomatosis online. Meeting them face to face at the NF Summit changed that. "To realize that I'm not alone was an exhilarating experience."

Read more about David’s story of NF here: https://www.ctf.org/news/a-police-officers-story-of-strength-surgery-and-hope/

09/30/2026

What does “quality of life” really measure in science?

Shruti Shah is a high school student working with Frank Buono, PhD, at Yale School of Medicine — and a young person living with NF2-related schwannomatosis (NF2-SWN).

In a new perspective piece for CTF, Shruti brings those worlds together, looking at what research tells us about quality of life in NF2-SWN and what traditional measures can miss: changes in identity, relationships, independence, communication and plans for the future.

She also points to an important gap: much of the existing research focuses on adults, leaving questions about how NF2-SWN intersects with adolescence, including school transitions, social development and identity formation.

By bringing research and lived experience together, Shruti makes the case for research that better reflects the full complexity of living with NF2-SWN.

Read Shruti’s perspective: https://www.ctf.org/news/a-young-persons-perspective-on-nf2-swn/

09/28/2026

For decades, Dr. Robert “Bob” Listernick has paired deep clinical expertise with the warmth, humor, and steady presence that families remember long after an appointment ends.

This year, we're proud to honor the longtime Clinic Director of the Neurofibromatosis Program at Ann & Robert H. Lurie Children's Hospital of Chicago with the Heart of Healing Award.

Dr. Listernick helped establish one of the country's first dedicated NF clinics in 1985 and has spent his career caring for children and families, advancing NF care, and mentoring the next generation of clinicians. In 2027, he will continue that commitment as a co-chair of the CTF NF Summit in Chicago.

Please join us in congratulating Dr. Listernick and celebrating his extraordinary impact on the NF community.

https://www.ctf.org/news/dr-robert-listernick-honored-with-ctfs-heart-of-healing-award/

09/25/2026

09/25/2026

AI-driven drug discovery is identifying promising possibilities for NF2-related schwannomatosis.

With funding from the Children’s Tumor Foundation, Cristina Fernández-Valle, PhD, at the University of Central Florida and collaborators at Sage Bionetworks used an AI-powered platform to identify 198 existing drugs that could potentially be repurposed for schwannomas. They narrowed the list to 10 candidates, with three emerging as especially promising.

Those candidates are now being tested in patient-derived schwannoma cells to determine effective doses and understand how they affect tumor growth.

Because these drugs already have safety data, repurposing them could shorten the path toward clinical development. It’s part of CTF’s strategy to create more shots on goal—and move more potential treatments forward for people living with NF2-SWN.

🔗 Read more: www.ctf.org/news/ctf-funds-ai-driven-drug-discovery-for-nf2

University of Central Florida