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.

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.

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.

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.

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. ”

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.

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 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.

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.