The Children's Tumor Foundation
11/03/2026 | Press release | Distributed by Public on 11/03/2026 13:22
NF1 Optic Pathway Gliomas: Webinar Recap
For families of children living with neurofibromatosis type 1 (NF1), an optic pathway glioma diagnosis can bring difficult questions. Will the tumor affect their child's vision? Will treatment be necessary? And how can doctors determine the best approach to care?
These questions were the focus of a recent Children's Tumor Foundation (CTF) webinar: NF1 Optic Pathway Gliomas: Study Progress, Findings, and What Lies Ahead. The session highlighted progress from a long-term research study designed to understand these tumors better and help doctors make more informed treatment decisions.
Hosted by Jamie Balhon, CTF's Senior Major Gifts Officer, the webinar featured:
CTF Chief Executive Officer Annette Bakker, PhD
Michael Fisher, MD, Children's Hospital of Philadelphia (CHOP)
Robert Avery, DO, MSCE, Children's Hospital of Philadelphia (CHOP)
Supported by CTF and the Gilbert Family Foundation, the study brings together researchers and clinicians to understand which children with NF1-associated optic pathway gliomas are most likely to experience vision loss and which may not require treatment.
What Was Covered
Optic pathway gliomas (OPGs) are typically low-grade tumors that develop along the visual pathway, which carries information from the eyes to the brain. Approximately 15% to 20% of children with NF1 develop these tumors, most commonly during early childhood. However, many children with OPGs never experience vision loss or require treatment.
Why the study matters: Treatment decisions for children with OPGs have historically varied among healthcare providers. Some children may need treatment to protect their vision, while others can be safely monitored. The study aims to identify reliable factors that help doctors determine the most appropriate approach, reducing unnecessary treatment while protecting children at risk of vision loss.
Launched in 2016, the international natural history study has enrolled 323 children across participating research centers, with an expanded enrollment goal of 500. Researchers collect information from routine eye examinations, MRI scans, and clinical visits to better understand how tumors and vision change over time.
CTF is grateful to the participating families, research teams, and the Gilbert Family Foundation for their continued commitment to this important work.
Explore our website to learn more about NF1 research, educational resources, and opportunities to support progress for the NF community.
The Children's Tumor Foundation published this content on November 03, 2026, and is solely responsible for the information contained herein. Distributed via Public Technologies (PUBT), unedited and unaltered, on November 03, 2026 at 19:22 UTC. If you believe the information included in the content is inaccurate or outdated and requires editing or removal, please contact us at [email protected]