The NF Network Releases Volume 18 of The Network Edge

Author: NF Network, Breanna Bronowski-Stutsman

Published On: 12/9/2020

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 18: Autumn, 2020. You can read the review here. This volume’s highlights include:

• NF1 Clinical Trials: Selumetinib shrank plexiform neurofibromas in 68% of children and improved pain, motor function, appearance, and quality of life for many participants, leading to FDA approval of Selumetinib for kids with NF1 and symptomatic plexiform neurofibromas.
• NF1 Clinical Trials: Selumetinib and everolimus are both promising treatments for low-grade gliomas that did not respond to prior chemotherapy in children and young adults with NF1.
• NF1 Translational Science: Minipigs can mimic NF1 symptoms and be used to test new treatments; dietary supplements with L-carnitine improve muscle function in mice with NF1.
• Cutaneous Neurofibromas: European adults with NF1 say #1 treatment priority for cutaneous neurofibromas is developing a new cream, pill, or implant to block their continued growth.
• NF2 Clinical Trials: Higher doses of bevacizumab are no more effective than standard doses in treating vestibular schwannomas.
• Schwannomatosis Update: Damage to small nerve fibers called C-fibers may play a role in causing schwannomatosis pain.​​​​​​​
• Quality of Life: A small-group, live-video intervention teaching resiliency and coping skills successfully improves the quality of life of teenagers with NF1 and NF2.

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