Craig and Suzanne presented at the annual NIH/NCI TFCC program at the NIH campus in Bethesda Maryland on September 18, 2026. TFCC, or Targeting Fusion Oncoproteins in Childhood Cancers, is a network of highly collaborative researchers funded through the NIH to advance our understanding of fusion oncoprotein cancers affecting children and young adults.
Our presentation provided a framework for how we, as patient advocates, can be an operational resource for TFCC investigators - not just a voice at the table. Our framework consists of three critical ways patient advocates can be operational resources for researchers:
Shaping Clinical Trial Design Early
Brokering Access to Promising Drugs and Compounds
Building a Fusion-Oncoprotein Coalition
Our presentation was well-received and spurred productive conversations with the world-class researchers working on NUT carcinoma and other fusion oncoprotein cancers, increasing our collaboration with these dedicated researchers.
We left energized and committed to continuing our work supporting the work of developing a treatment for NUT carcinoma.