Stronger Together in Schwannomatosis
January 27, 2026 @ 6:30 pm - 8:00 pm
NF Northeast is hosting a three-part miniseries that delves into topics related to our schwannomatosis (SWN) community. SWN experts will shed light on the importance of well-being, pain management, and understanding in-depth genetics for individuals living with schwannomatosis. Join us for one or all of these engaging discussions.
Session 1: Tuesday, January 27th, 6:30-8:00 pm EST
Living Well with Schwannomatosis, Amanda Bergner, MS, LCGC
Amanda will discuss the importance of well-being and mental/emotional health when living with a rare genetic condition such as SWN. The focus will be on coping with the diagnostic odyssey that often occurs with SWN. Discussions will focus on monitoring well-being, relationships, and quality of life.
Session 2: Tuesday, February 3rd, 6:30-8:00 pm EST
Understanding Pain and Coping Strategies in SWN, Frank Buono, PhD
Dr. Buono’s session will be geared towards pain management in schwannomatosis. One of the top concerns of most individuals living with SWN is their pain. Join us for this interactive session with an expert and your peers to learn more about pain management guidelines and strategies.
Session 3: Thursday, March 5th, 6:30-8:00 pm EST
In-depth Schwannomatosis Genetics, Alicia Gomes, MS, CGS
Alicia will discuss the basics of genetics in schwannomatosis, inheritance, and the different variants. Receiving a diagnosis of schwannomatosis (SWN) and/or managing a complication from SWN can result in a range of emotions and medical interventions. Tune in to learn more about the genetics involved.
