NF California Webinar: NF Studies and Clinical Trials in California

Please join NF California for this special opportunity to hear representatives of California hospitals, clinics and companies conducting research on different conditions associated with Neurofibromatosis.

Anxiety with Neurofibromatosis

When it comes to anxiety, coping is good. Prevention is better. Brandon Tessers (LCPC) of Effective Artistry speaks about anxiety, executive functioning and the struggles that come from being different. Brandon also shares useful ways to think of anxiety, coping techniques, and frameworks that can help locate the source of the anxiety so you can prevent it altogether.

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.

SpringWorks Therapeutics and the ReNeu Trial

SpringWorks is a biopharmaceutical company whose mission is to develop life-changing medicines for patients with severe rare diseases and cancer. They are conducting a Phase 2b clinical trial (“ReNeu”) with their investigational MEK inhibitor called mirdametinib in children and adults with plexiform neurofibromas. Hear Dr. Mary Smith and her team present on an overview of NF and their ReNeu trial.

NF Care in California - Meet Your Providers

NF California presents an educational opportunity to connect the California NF community with experienced NF physicians, doctors, and specialists in regions across the state. Speakers informed the attendees of locations available to them for their NF care, introduced them to their team members, and shared clinical trial opportunities conducted at their sites.

NF Central Plains' Night of Magic

NF Central Plains and the NF Network host Keith Leff, "The Magically Memorable Magician," as we celebrate NF Awareness Month with a virtual magic show alongside members of our NF community. Friends, families, and supporters joined us from across the U.S. and Canada to enjoy a fun and entertaining evening.

Neurofibromatosis Parent Panel - Day of iNFormation

During the final presentation for NF Central Plains Virtual Day of iNFormation 2020, Dr. Keely Fitzgerald, Kaymee Phillips, Linda Yew, and Sharon Loftspring answer your questions about neurofibromatosis and share their insight as parents to children with NF. Hear their journeys, stories, and experiences with their children and patients.

Clinical Trials from a Pharmaceutical's Perspective

Dr. Uche Iloeje, Vice President of Medical Affairs at SpringWorks Therapeutics, presents on the subject of clinical trials during NF Central Plain's Virtual Day of iNFormation. Dr. Iloeje specifically highlights what clinical trials are, what SpringWorks Therapeutics is currently working on, and what trials are available for neurofibromatosis patients.

Pain Management Strategies for Those with NF

NF Central Plains' Virtual Day of iNFormation 2020 continued with a presentation from Dr. Frank Buono on the subject of pain management. Dr. Buono explains what chronic pain is and how our NF community can cope with their chronic pain, both from a clinical standpoint and from other alternative-based approaches.

Use of Service Dogs in Neurofibromatosis

During their second presentation of NF Central Plains' Virtual Day of iNFormation, John and Linda Manth continue to share their experience with service dogs. Dasher has positively impacted their life and the life of Leah, and John and Linda are excited to share their journey to get Dasher and how service dogs can also be of benefit to the NF community in general.

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.

Clinical Challenges and Advancements in PNs & MPNSTs

NF Central Plains' Virtual Day of iNFormation begins with a warm welcome from members of our NF community before Dr. Angela Hirbe shares an overview of NF, how patients are diagnosed, what plexiform neurofibromas and malignant peripheral nerve-sheath tumors (MPNSTs) are, and the exciting research and newly approved treatments for these tumors.

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.

"Is There Any Hope?" - There Sure Is!, a webinar on mindfulness

Gabriel Halpern presents a "dharma talk:" a philosophical exposition by a veteran Yoga teacher explaining how wisdom helps one face life. After 50 years of continuous study, Gabriel articulates the theory behind why practice is essential to the direct experience of clarity and peace of mind, and how theory and practice dovetail into healthy lifestyle choices.

Developmental Strategies to Cope During COVID-19 Social Distancing

In this webinar, Rachel Sakofs, M.S. CCC-SLP discusses the shift in roles due to stay-at-home orders, reviews developmental challenges with children with neurofibromatosis, and shares helpful resources for working through these challenges. Rachel also reinforces the idea of radical self-acceptance as a parent to a child with 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

Chronic Pain & Illness, an educational webinar

Dr. Rachel Zoffness, pain psychologist and Assistant Clinical Professor at UCSF, provides accessible techniques for pain management; an explanation of how pain works in the brain, and how thoughts and emotions affect 100% of physical pain; and the basics of Cognitive Behavioral Therapy (CBT). Please note that this was a conversational webinar, so you will not see a video and you will hear audio only.

Tips to Improve Handwriting 3.26.18

Please join Maria Acosta, M.D., a neurologist who specializes in Neurofibromatosis Type 1 (NF1), for bimonthly webinars discussing practical topics that will help you and your child! The purpose of this webinar series is to present on topics that are important to families of children with NF1.

Intro to Webinar and Review of NF1 Resources with Dr. Maria Acosta 1.29.18

Please join Maria Acosta, M.D., a neurologist who specializes in Neurofibromatosis Type 1 (NF1), for bimonthly webinars discussing practical topics that will help you and your child! The purpose of this webinar series is to present on topics that are important to families of children with NF1.

Using apps to help with NF-related learning disabilities

In this webinar, you will learn how certain apps can be used to help with executive functioning challenges. We will demonstrate and answer questions about apps that focus on note-taking, organization, energy management, and goal-setting. Presented by Michelle Ranae Wild, President/CEO of Brain Education Strategies and Technology, Inc.

Affordable Health Care Act

Cheryl Fish Parcham is Deputy Director of Health Policy at Families USA, a national non-profit, non-partisan organization dedicated to the achievement of high-quality, affordable health care for all Americans. Here you will learn more about the new options for coverage and how to qualify for assistance.

Techniques to Cope w/Pain

Many individuals with NF have chronic pain that can interfere with their daily lives.While medications sometimes help, they often offer only partial relief and they can have significant side effects. In recent years, more and more people are turning to psychological techniques to help them deal with physical pain.

NF Needs Your Local Voice

Kim Bischoff, Executive Director of the NF Network and Katie Vanlandingham, from Van Scoyoc Associates, share their knowledge to help you advocate for funding for NF research to your local representatives.

Genetics of NF2

"The Genetics of NF2", presented by renowned UK Geneticist, Dr. Gareth Evans. Dr. Evans practices at St. Mary's Children's Hospital in Manchester, where he is also is the head of the NF2 Clinic. He has a wealth of experience with NF2 and currently see's most of the NF2 patients in the UK. He has published numerous articles on his research on the Genetics of NF2.

Research Advances in NF2

"Research Advances in NF2", presented by Ashok R. Asthagiri, M.D., Principal Investigator at the National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health. Dr. Asthagiri will speak about the NF2 natural history study and findings to date, as well as the NF2 program at the National Institute of Health (NIH).

NF1 & School Issues

"NF1 and School Issues", presented by James Tonsgard, MD, Director, University of Chicago Ambulatory Program for NF discusses the spectrum and diagnosis of learning disabilities and cognitive issues that can be associated with NF1.

10 Things to Know About NF1

"10 Things Everyone Should Know About Their NF1" presented by Doug Stewart, MD, Investigator, Clinical Genetics Branch Division of Cancer Epidemiology and Genetics National Cancer Institute. Dr. Stewart will offer practical advice to people living with NF1, especially in working with doctors to get the best care possible.

When to Worry About Cancer in NF1

Dr. Gutmann is an internationally recognized expert in NF, and was a member of the research group that identified the entire NF1 gene. He has twenty years of experience in the care of children and adults with NF, and directs a large basic science research laboratory working on NF.

Use of Technology

Vestibular schwannomas can cause hearing loss, which in turn can create significant communication problems for people with NF2. Technology exists to assist with communication for people with NF2 and works on devices that are already in use in the NF2 community.This captioned webinar will explore work that is ongoing using apps and iPads to help support communication for people with NF2

Update on Schwannomatosis

Scott Plotkin, MD of Massachusetts General Hospital Harvard NF Clinic presents the latest information on schwannomatosis.

Understanding Seizures in NF1

James Tonsgard, MD, Associate Professor of Pediatrics and Neurology, Director, University of Chicago Ambulatory Program for Neurofibromatosis, discusses seizures in NF1.

Talk to Your Congressman About NF Research

Your voice is critical to obtain federal funding for NF research. Each year it is necessary to contact Congress to secure federal funding for NF research. You can help us advocate for federal funds by scheduling meetings and writing to your Senators and Representatives.

Social Emotional Webinar

Social and Emotional Development in Children with NF.

Patient Centered Research

Over the past few years, researchers and policymakers have realized that incorporating the patient’s and family members’ preferences and ideas into research leads to more important and more useful discoveries.

Optic Gliomas in NF1

Robert Listernick, MD, NF Clinic Director, Children's Memorial Hospital in Chicago, IL is one of the foremost physicians on the management and treatment of optic gliomas in children with NF1.

NF Advocacy Network Orientation

2016 Advocacy Training Video

NF2 with Dr. William Slattery

Dr. William H. Slattery heads the Department of Clinical Studies at the House Research Institute in California. Dr. Slattery's presentation will focus on Auditory Brain Implant (ABI) and Cochlear Implant (CI) advancements.

NF1 and Aging

Join the NF Network with John J. Mulvihill, MD, Dept. of Genetics, Oklahoma University Medical Center for an all new webinar on NF1 and aging. Dr. Mulvihill has extensively studied the effects of NF1, aging, and how NF changes during the aging process.

Learn from a Leading Expert in NF2

Dr. Asthagiri will address questions previously submitted by members of the NF2 community.

iPad for Education & Productivity

"Using the iPad for Education and Productivity" presented by Occupational Therapist Nicole Weckherlin, with St. Louis Children's Hospital, discusses apps and resources that benefit children with NF1.

Hearing Preservation

Hearing preservation or restoration is a major goal in the management of Neurofibromatosis Type 2. This discussion describes the management of patients with NF2 to prolong or restore useful hearing.

Faces of NF

CDMRP NF Research

Neurofibromatosis 1 Tumor Suppressor research funded through the Congressionally Directed Medical Research Program.

Behavior Management for Parents

Behavior Management for Parents Harnessing the Power of Reinforcement


Susan Fitzsimonds is the author of the book "The Hero in Me," which she uses as the cornerstone of her anti-bullying presentations. In this webinar, Fitzsimonds will define the aggressive behavior of a bully, and offers students methods of dealing with bullies. She empowers students to have the tools when someone exhibits aggression towards them.