Webinar: How to Tell a Child about an NF1 Diagnosis?

Have you struggled with how to talk to your child about their diagnosis of neurofibromatosis type 1 (NF1)? Or how to answer their questions about NF1?

This webinar from the Children's Tumor Foundation shares two new resources to help parents who need help disclosing an NF diagnosis to their child. These resources were developed in partnership with Ashley Cannon, PhD, MS, CGC. Dr. Cannon is a Clinical Program Manager at InformedDNA and the Research Project Coordinator for the University of Alabama at Birmingham (UAB) Genetic Counseling Program.

In this webinar, hosted on September 25, 2024, Dr. Cannon is joined by Madeleine Franchi, MS, LCGC, and resource author Ryan Brown-Ezell, MS, CGC.

About the resources:

"Talking to Your Child About NF1" is a comprehensive guide that helps caregivers decide what and how to share with their child about their condition. It can be used on its own or together with the children's resource designed to complement it.

Link for Parent Resource - https://www.ctf.org/wp-content/upload...

"Super Emerson" is a children’s book that introduces NF1 through the story of a young child with the condition. Before sharing it, caregivers should review the content to ensure it feels appropriate for their child. The book features engaging sections like "Sparx Facts" and "More from Moxie," which provide additional insights and activities for kids.

Link for Super Emerson - https://www.ctf.org/wp-content/upload...

The Children’s Tumor Foundation (CTF) began as the first grassroots organization solely dedicated to finding treatments for NF. Today, CTF is a highly recognized global nonprofit foundation, the leading force in the fight to end NF, and a model for other innovative research endeavors.

NF refers to genetic conditions that cause tumors to grow on nerves throughout the body. NF includes all forms of neurofibromatosis and schwannomatosis and affects about 4 million people worldwide. Anyone can be born with NF, and it affects everyone differently. There is no cure yet.

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