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.

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.

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 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 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 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.

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.

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.

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.”