The NF Network Releases Volume 22 of The Network Edge

Author: NF Network and Vanessa Merker, PhD
Published On: 08/21/2023

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 22: Spring, 2023. You can read the review here. This volume's highlights include: 

  • NF1 MPNSTs: Researchers discover genomic signatures of MPNSTs that could hopefully be used one day to predict an individual's prognosis and response to treatment using only a blood test.
  • ​​​​​​​NF1 Learning Disabilities: Certain executive functioning skills are linked with academic performance over time in children with NF1.​​​​​​​
  • ​​​​​​​NF1 Clinical Management: Free papers share European clinical guidelines for NF1-related tumor surveillance and resources for adolescents transitioning from pediatric to adult care settings.
  • NF1 Biology: Combining MEK inhibitors like selumetinib and mirdametinib with other medications may lead to more effective treatment options for plexiform neurofibromas and MPNSTs.
  • NF2 Clinical Trials: Using a lower dose of bevacizumab for long-term maintenance treatment is effective at controlling tumor size and preserving hearing, and safer than standard doses.
  • NF2 Biology: Ubiquitin proteasome pathway inhibitor medications such as ixazomib show promising preclinical testing results against schwannomas and meningiomas.
  • Schwannomatosis: New mouse model of schwannomatosis using patient tumor tissue shows that blocking IL-6 can reduces pain, supporting a soon-to-launch clinical trial testing siltuximab and other medications for treatment of schwannomatosis-related pain.
  • Quality of Life: A review of previously published papers summarizes psychological and social difficulties of NF1, as well as protective factors and coping strategies used by people with NF1.

View, read, and download Volume 22 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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