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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 Dad

Raising a child with neurofibromatosis (NF) comes with challenges that can impact every part of family life—and you don’t have to navigate them alone. This webinar is created for dads and father figures who are supporting a child with NF while balancing caregiving, work, family responsibilities, advocacy, and the emotional weight that can come with it all. Attendees will hear from other fathers and experts about the many ways dads support their families—from helping manage appointments and daily care to caring for siblings, researching treatment options, fundraising, and being a steady source of support at home. The session will also create space for honest conversation, connection, and practical strategies to help you feel more supported, understood, and confident along the way.

Identifying Pain Sources for NF and Overcoming Barriers to Research Participation

Watch Dr. Thomas J. Wilson for a presentation on his Project Dream grant, which focuses on identifying pain sources in individuals with Neurofibromatosis/Schwannomatosis. Topic: New Imaging Method for Identifying Pain Sources Presented by Thomas J. Wilson, MD, MPH, FAANS Pain is a common issue for those with LZTR1, SMARCB1, and other forms of schwannomatosis. Targeted therapies, such as surgical removal of pain-causing schwannomas or nerve blocks, can alleviate discomfort. However, identifying which schwannomas are pain-generating is crucial yet challenging due to multiple tumors being present. Accurate diagnostics are urgently needed to distinguish these tumors, optimizing pain management and minimizing unnecessary surgeries. Dr. Wilson will share updates on research into a new imaging technique aimed at improving pain source identification. Dr. Thomas J. Wilson earned his MD with distinction from the University of Nebraska and completed his residency at the University of Michigan, followed by a fellowship at the Mayo Clinic. He currently serves as a Clinical Associate Professor at Stanford University, focusing on nerve outcomes, clinical trials, and advanced imaging techniques. Dr. Wilson's talk is followed by "Overcoming Barriers to Research Participation" Presented by Dr. Paul Moots Dr. Paul Moots, M.D., President of the Board of NF Tennessee, will discuss ways to lower barriers to research participation. With 34 years of experience, he has been an investigator in 38 clinical trials focused on gliomas and nervous system tumors.

Advancing NF Care Through Research and Clinical Trials

Join us for an engaging and informative webinar that explores how groundbreaking research and clinical trials are transforming the future of care for individuals with Neurofibromatosis Type 1 (NF1). Dr. Colleen Niswender of Vanderbilt University and the Warren Center for Neuroscience Drug Discovery will present current NF1 research from her lab, outlining the drug discovery process—from compound identification and screening to clinical development—and how these efforts are advancing a broader treatment pipeline. Her work includes collaborations with Neumora Therapeutics, Acadia Pharmaceuticals, Boehringer Ingelheim, the William K. Warren Foundation, and the National Institutes of Health, with six programs reaching clinical trials. She is also leading efforts to develop new treatments for Rett syndrome, Pitt Hopkins syndrome, and NF1. The webinar will also feature Dr. Paul Moots, President of the Board of NF Tennessee and Board Member of the NF Network. A neurologist and neuro-oncologist, and former Director of the Neurofibromatosis Clinic at Vanderbilt University Medical Center, Dr. Moots will discuss current research trends and strategies to reduce barriers to clinical trial participation. Over his 34-year career, he has served as an investigator on 38 clinical trials focused on gliomas and other nervous system tumors, including MEK inhibitor trials for plexiform neurofibromas. To wrap up the session, Mike Sager, Patient Education Manager at Alexion, will deliver a valuable talk on "Productive Conversations with Healthcare Providers," equipping you with essential tools for effective communication in your healthcare journey. Don’t miss this unique opportunity to learn how cutting-edge research is driving progress and how you can be an integral part of this transformative movement!

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.