The NF Network Releases Volume 20 of The Network Edge

Author: NF Network and Vanessa Merker, PhD
Published On: 12/08/2021

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 20: Fall, 2021. You can read the review here. This volume's highlights include: 

  • NF1 Clinical Trials: L-carnitine supplements were safe and well-tolerated by children with NF1 in a small clinical trial; future trials will confirm whether these supplements can improve children’s muscle strength and endurance.
  • NF1 Learning Disabilities: Initial testing shows that MEK inhibitors like selumetinib and computer training games like Cogmed might improve cognitive functioning in children with NF1.
  • NF1 MPNSTs: A new blood test analyzing cell-free DNA from tumors that floats in our bloodstream holds exciting promise for early detection and monitoring of MPNSTs.
  • NF1 Optic Pathway Gliomas: Treating mice with MEK inhibitors like mirdametinib shortly after birth may prevent optic pathway gliomas from forming.
  • NF2 Clinical Trials: Analyzing resected tumors from NF2 patients taking everolimus helps uncover why the drug was not as effective as hoped in shrinking vestibular schwannomas.
  • NF2 Biology: Two FDA-approved drugs - brigatinib and losartan – hold promise for being repurposed to treat vestibular schwannomas and other NF2-related tumors.
  • Quality of Life: Treating depression may help buffer the impact of pain on people’s everyday lives; similarly, building resiliency may help reduce the impact of stress on people’s quality of life.   
  • REiNS Update: A new series of articles highlights NF clinical trial recommendations, including how NF patients and their family members have contributed to REiNS research.

View, read, and download Volume 20 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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