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Webinars

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

Anti-Bullying

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.