The NF Network Releases Volume 21 of The Network Edge

Author: NF Network and Vanessa Merker, PhD
Published On: 01/27/2023

The Neurofibromatosis Network and Neurofibromatosis Northeast are 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 21: Winter, 2022. You can read the review here. This volume's highlights include: 

  • NF1 Clinical Trials: Selumetinib, which is already approved to treat symptomatic plexiform neurofibromas in children with NF1, may also help prevent symptoms from ever developing in children with asymptomatic plexiform tumors in high-risk locations of the body.
  • NF1 MPNSTs: Research on a blood test to diagnose MPNSTs early expands, and a new, first-in-class REF1 inhibitor shows promising results in the lab to potentially treat MPNSTs.
  • NF1 Optic Pathway Gliomas: Treating mice with the antiseizure medication lamotrigine helped prevent optic pathway gliomas from forming and growing.
  • NF1 Clinical Management: Many internal neurofibromas may shrink over time without any treatment in adults with NF1.
  • NF1 Biology: First genetically engineered mouse model of cutaneous neurofibromas established.
  • NF2 Clinical Trials: A phase 2 clinical trial of icotinib shows modest success in shrinking/ stabilizing vestibular schwannomas and improving hearing over one year of treatment.
  • NF2 Biology: Researchers test multiple strategies for gene therapy in NF2, including a technique to correct the mutated NF2 gene in tumors so that cells can produce a functional NF2 protein.
  • Schwannomatosis: Two clinical trials to treat schwannomatosis-related pain are underway
  • Quality of Life and Other NF Updates: People with NF1, NF2, and schwannomatosis do not appear to be at increased risk of getting COVID-19 or being hospitalized with COVID-19.  

View, read, and download Volume 21 of The Network Edge here. To view previous editions of The Network Edge, please visit this page on our website.


Because of your support of the Neurofibromatosis Network Advocacy Program and your efforts in contacting your representatives, we are pleased to present The Network Edge, a periodic NF research review, which includes research done by the Neurofibromatosis Research Program (NFRP) funded through the Congressionally Directed Medical Research Program (CDMRP) and support language for Neurofibromatosis research at the National Institute of Health (NIH). The NF Network is thankful for our partnership with NF Northeast, which makes it possible to bring The Network Edge to you.

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