2017 Highlights for FCF


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
UT Southwestern

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.

Patient Support

  • 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.