Synodos for NF1 is Changing the World for Low Grade Glioma Patients

Mar 13, 2019, Posted in Video, Collaborations, NF1

Roger Packer, MD, from Children’s National Hospital in Washington, DC, organized an NF1 Low-Grade Glioma (LGG) meeting in Bethesda, MD, on Feb 19-20, 2019. NF1 LGG are brain tumors that 25-30% of NF1 patients, especially in the pediatric population, are at risk of developing.

The scope of the meeting was to gather experts in the NF1 LGG field and look at new data emerging from initiatives like the Children’s Tumor Foundation Synodos LGG projects among others. CTF initiated two Synodos projects in the glioma space back in 2015, one project led by Antonio Iavarone, MD, (Columbia University) that looked at both adult and pediatric population, and one co-led by David Gutmann, MD (Washington University), and Michael Fisher, MD (Children's Hospital of Philadelphia), who looked specifically at a pediatric cohort of NF1 LGG. New data and insights into the molecular mechanisms of these newly characterized tumors are now suggesting ideas to use combination therapy, immunotherapy, or a mix of approaches, especially in the adult population that currently has the worst outcome. The meeting served to share ideas and make sure clinicians could translate information into new treatments as soon as possible.  

Inspiring post-meeting remarks from Dr. Packer can be viewed in the video below.

The results of the NF 1 Synodos projects have been made possible in part by the generosity of Laurée and Jim Bob Moffett and Flashes of Hope.