nf-logo
nf-logo

Webinars

Webinars have proven to be an effective way to educate the NF community about managing medical care and living with NF. To learn more, visit the NF Network YouTube channel. You can use the search function under the NF Network description to find topics you’d like to learn more about.
The NF Network does not endorse the content or opinions expressed by speakers at our events (or in our webinars). Rather we provide a platform for the exchange of ideas. The views expressed by speakers are their own and do not necessarily reflect the official position of the organization. Consult an NF specialist for personalized medical advice.
 

Stronger Together: Navigating NF as a Mom

Caring for a child with neurofibromatosis (NF) comes with unique challenges—and you don’t have to face them alone. This webinar is designed specifically for moms who are balancing the emotional, medical, and day-to-day realities of raising a child with NF. Attendees will hear from fellow mothers and experts about managing care, advocating for your child, and finding moments of strength along the way. The session will also create space for connection, shared experiences, and practical strategies that can make the journey feel more manageable and supported.

Unraveling the Impact of Extra Chromosome 8 on MPNSTs in NF1

Join Dr. Angela Hirbe as she presents her research on how an extra copy of chromosome 8 affects malignant peripheral nerve sheath tumors (MPNSTs), which impact individuals with NF1. The goal is to identify new targeted therapies to improve patient survival. Afterward, Dr. Paul Moots will discuss "Recent Trends in NF Research and How You Can Influence Them."

Bringing Clinical Trials to You

Join Dr. Paul Moots, Dr. Vanessa Merker, and the NF Network as they explore clinical trials and discuss how you can contribute from home to help shape the future of neurofibromatosis (NF). Paul Moots, M.D. Resources available for people with neurofibromatosis to find research opportunities near and far from home This talk will highlight ways to lower the barriers to participating in research

ADHD, Learning Differences, and Autism in NF1

Dr. Green is a physician-scientist and a child psychiatrist who works primarily with children with known genetic conditions and “neurogenetic syndromes” such as Noonan syndrome and other Rasopathies. Her presentation focuses on neurodevelopmental conditions in NF1. Dr. Green covers the presentation of these conditions in the context of NF1, findings from recent studies in NF1, and approaches to treatment.

Breakthroughs in NF2 Research - NF2 BioSolutions

John and Linda Manth led their first of two Virtual Day of iNFormation 2020 presentations. John and Linda begin by sharing their journey with NF2 and their inspiration behind their work - their daughter Leah. The dynamic duo then shares how they got involved with NF2 BioSolutions and what "advocating for a cure" means in the science community.

Neurofibromatosis Parent Panel, a Q&A session

When parents first hear the word "neurofibromatosis," thousands of thoughts and questions begin to race through their heads. As parents of the NF community, our panelists bring together different backgrounds of NF. Whether you are an NF2 parent, a multi-generational NF parent, or an NF1 parent, these parents will share their journeys, challenges, and insight to their worlds of NF.

A Surgeon's Approach to Schwannomas and Neurofibromas

Dr. Wilson reviews the types of benign nerve sheath tumors, namely schwannomas and neurofibromas. Learn more about your condition, when to be worried about your tumors, and the surgical options available for your treatment. Dr. Wilson's insight is from a surgeon’s perspective, with a focus on the challenges that are present in making decisions with patients who have multiple tumors.

Bullying vs. Teasing, an educational webinar

Bullying has become an epidemic. In this webinar, Corrina Chang, M.S., CCC/SLP and founder of Kids First Speech and Language Intervention, discusses bullying versus teasing. She also discusses the tools and the resources she uses with her school-aged and adolescent patients. Corrina shares her own personal experience regarding bullying and how it shaped her to the person she is today.

Lifehack Your NF, an educational webinar

Dr. Kaleb Yohay, Associate Professor of Neurology and Pediatrics and Director of the Comprehensive NF Center at NYU Langone Health, discusses a number of “lifehacks;” tips, tricks and ideas that he has learned from working with the NF community over the last 20 years. For a transcription of this webinar, contact the NF Network at 630-510-1115 or admin@nfnetwork.org.