Research Summit – FCF hosted its 2nd fibrolamellar (FLC) research conference in November. With incredible collaboration and information-sharing amongst the 20+ institutions represented, we came up with a “roadmap” for future FLC research. 2018 will see FCF put that “roadmap” into effect.
FCF Summit 2017 Attendees
Blueprint Medicine Cancer Research Institute
CASI Pharmaceuticals Cellaria Biosciences
Cornell University CURE
Duke University Harvard
Johns Hopkins Medicine Massachusetts General Hospital Research Institute
Mayo Clinic Memorial Sloan Kettering Cancer Center
NIH Phoenix Songs Biologicals
Puma Biotechnology Rare Disease Communications
Seattle Children’s Hospital Research Foundation St. Jude Children’s Research Hospital
Stanford University Target Cancer Foundation
The Bili Project Foundation University of Texas MD Anderson Center
University of California San Francisco University of Copenhagen
University of North Carolina Chapel Hill University of Vermont
University of Washington University of Wisconsin
Two independent studies were published in 2017 confirming that the chimera fusion (the gene mutation common to all FLC patients and discovered with FCF funding) is the driver mutation for FLC and that it can be reproduced in mice for research- a much needed piece to the FLC research puzzle.
Research has been robust in 2017 ranging from basic to translational, and includes such exciting areas as immunotherapy, new drug therapies, single cell RNA sequencing and stem/progenitor cell signaling pathways including YAP and hedgehog.
- Launch of “Keep on Tuckin’” Newsletter – this periodical will help to keep the FLC community abreast of FLC news.
- MJ Hennessey, a major healthcare/media company partnered with FCF and, pro-bono, is creating educational messaging on FLC. This effort is aimed at the scientific, medical and patient communities…helping to build awareness and communicate important developments.
- FCF welcomes Tom Stockwell as the Foundation’s first patient navigator. As the parent of an FLC patient, Tom brings an important depth of understanding to our community.
- With FCF’s urging, The National Cancer Institute committed to offering high quality treatment and counsel to FLC patients at minimum costs to the patient.
- For the 3rd consecutive year, the FLC community was chosen as peer reviewers for the Department of Defense’s (DOD) $50 million cancer grant fund. 2017 marks the first year a fibrolamellar grant was submitted to the DOD, and the first-year adolescent and young adult cancers are officially part of its grant-giving program.