The NF Network Releases Volume 19 of The Network Edge

Author: NF Network, Breanna Bronowski-Stutsman

Published On: 07/06/2021

The Neurofibromatosis Network is delighted to bring you our science column, The Network Edge, written by science writer Vanessa L. Merker, PhD. This periodic research review presents a summary of recent highlights from NF research and clinical trials.  The NF Network, through the NF Network Advocacy Program on Capitol Hill as well as direct funding of neurofibromatosis research, plays a central role in progressing toward a cure.

The goal of The Network Edge is to keep you abreast of advancements in treatment and clinical care for all forms of NF. The information is presented in bite-sized pieces, allowing you to easily find and focus on the topics of most interest to you. Whether it is NF1 learning disabilities studies, NF2 clinical trial updates, or schwannomatosis pain research, each new volume provides you the latest research news as compiled by science writer, Vanessa L. Merker, PhD. 

We are happy to announce the newest edition of The Network Edge, Volume 19: Spring, 2021. You can read the review here. This volume’s highlights include:

• NF1 Clinical Trials: In Phase II clinical trials, both mirdametinib and cabozantinib shrunk plexiform neurofibromas in 42% of participants (all ages 16+) and seem to have improved participants’ tumor-related pain.
• NF1 Basic Science: Disrupting RAC1 gene function helps prevent plexiform neurofibromas from forming in mice, and treatment with mebendazole and celecoxib may help prevent malignant peripheral nerve sheath tumors (MPNSTs) from forming in mice.
• Clinical Management of NF: The COVID-19 pandemic delayed appointments and clinical trial enrollment in U.S. NF clinics, but also radically increased the use of telehealth for NF care. 
• NF2 Update: Researchers determine safe dose of AR-42 (also called REC-2282) for use in future clinical trials; researchers review the signaling pathways affected by NF2 mutations and how different drugs target these pathways.
• Schwannomatosis Update: People being diagnosed with schwannomatosis benefit from education, psychosocial support, and a collaborative relationship with their doctor. Researchers find molecular differences in schwannomas from people with and without schwannomatosis. 
• Quality of Life: A brief psychosocial intervention delivered over the phone by other people with rare diseases may improve coping skills in adults with NF.  Researchers develop a new measure of quality of life specifically for adults with plexiform neurofibromas.

View, read, and download The Network Edge here. To view previous editions of The Network Edge, please visit this page on our website.