Doctor Thomas Wilson's Research on identifying pain sources in individuals with NF/SWN

Author: NF Network

Published On: 6/05/2025

On May 20, the NF Network presented an important educational webinar featuring Dr. Thomas J. Wilson, who shared groundbreaking insights into a new imaging technique aimed at improving the identification of pain sources in Neurofibromatosis and Schwannomatosis.

Dr. Wilson emphasized that pain is a prevalent issue for individuals with LZTR1, SMARCB1, and other forms of schwannomatosis. While targeted interventions such as surgical removal of offending schwannomas or nerve blocks can significantly reduce discomfort, pinpointing which specific schwannomas are causing pain remains difficult, especially when multiple tumors are present. The need for accurate diagnostics has never been more crucial; by distinguishing these tumors effectively, we can enhance pain management and minimize unnecessary surgeries. You can watch the full webinar here.

This innovative research is supported by the NF Network's Project Dream grant program, launched in 2023 to fund early-stage, high-potential NF research. Our initial study has already produced exciting results, but the urgency has intensified.

With the recent reduction of essential funding for NF research, the very scientific momentum and clinical trial infrastructure that countless families rely on are at risk.

We urge you to join us in supporting Project Dream. Your generosity can bring us closer to vital breakthroughs in neurofibromatosis research. To learn more about how you can make a difference, please visit http://weblink.donorperfect.com/project-dream.