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NF2-SWN Accelerator Meetup: Make NF Research Visible with Vanessa Merker, PhD, and Frank Buono, PhD

In this NF2-SWN Meetup, Vanessa Merker, PhD, and Frank Buono, PhD presented updates on their most recent project. This NF2-SWN Meetup took place live on May 22, 2024, and live captioning was included. To enable Closed Captions on this recording, please click the CC button. Their project aims to develop a new patient-reported quality of life measure in people with NF2-related schwannomatosis that can capture the full range of symptoms that matter to patients. To do this, they will conduct interviews and surveys with a wide range of adolescents and adults with NF2-related schwannomatosis and consult expert NF2-SWN clinicians. Once validated, the new measure can be used in clinical trials like INTUITT-NF2 to provide key evidence to the Food and Drug Administration (FDA) that new treatments for NF2-SWN improve how patients feel and function. With funding provided by CTF, this project aims to incorporate the important perspective of those living with NF2-SWN. What is the Children's Tumor Foundation? Founded in 1978, the Children’s Tumor Foundation (CTF) began as the first grassroots organization solely dedicated to finding treatments for NF. Today, CTF is a highly recognized global nonprofit foundation, the leading force in the fight to end NF, and a model for other innovative research endeavors. Visit our website at https://www.ctf.org/ Donate today at https://www.ctf.org/ways-to-give/ Follow us on our social media platforms: Facebook -   / childrenstumor   Instagram -   / childrenstumor   Twitter -   / childrenstumor   LinkedIn -   / children's-tumor-foundation