News Release 

Good news for NF patients with low grade glioma (LGG)

Investments in LGG research to transform patient care: Congratulations to Gilbert Family Foundation for sponsoring first-rate consensus workshop and gratitude to Synodos LGG donors

Children's Tumor Foundation


IMAGE: NF1 Low Grade Glioma Team view more 

Credit: CTF

A paper published in the academic journal Neuro-Oncology by NF experts has demonstrated an increased understanding of low grade gliomas (LGG) occurring in children and adults with NF1. While the biology of LGG has become better known over the past decade, the complexities of these tumors have inhibited practical application of this knowledge to NF1 related LGGs, which can potentially impact close to a third of NF1 patients. According to Dr. Roger Packer, the Gilbert Family Foundation consensus conference held last year with NF1 and LGG experts was aimed at pulling together NF and low grade glioma experts to assess whether new therapeutic strategies could be developed for patients with LGG.

The paper can be accessed here:

In response to the timing of the meeting, Dr. Packer said that "the LGG Synodos teams, funded by CTF had collaborated to analyze for the first time in NF history a large enough number of specimens to draw some important conclusions which probably will have implications in how LGG patients will be treated going forward."


For the full interview with Dr. Packer - please click here:

We would like to thank all the donors to the Synodos for LGG project, with special thanks to the lead funders Jim Bob & Laurée Moffett, Flashes of Hope and Cure NF with Jack. They believed in our audacious global collaborative projects and stepped up to fund this effort.

And, thanks to the Synodos teams who relentlessly work together to generate the data that will help NF patients, and who have made all data openly available on the CTF-funded NF Data Portal.

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