Current FCF Research Projects

Fibrolamellar Consortium

FCF has funded the creation of The Fibrolamellar Consortium. This is a collaborative effort by Memorial Sloan- Kettering (NYC), Johns Hopkins (Baltimore), University of California/San Francisco, University of Texas Southwestern Medical Center, Dallas, Texas, and Dana Farber (Boston). The consortium’s mission is to:

  •  promote awareness about FLC within the oncology community
  •  develop new therapies for FLC
  •  pool information on FLC patients in order to document trends in diagnosis, treatment and survival.      

The consortium opened a clinical trial in July 2012 testing a novel treatment designed specifically for FLC. The treatment targeted certain cell-signaling pathways that appear to be overactive in this disease. This was the first clinical trial dedicated to patients with advanced FLC that cannot be treated with surgery. This clinical trial is no longer taking new patients.

The Consortium meets twice a year at the ASCO (American Society of Clinical Oncology) converntions. The Consortium had a poster presentation at the ASCO convention in Chicago, June 2011. This generated a lot of interest and queries about fibrolamellar research.


The following initiatives were funded since 2010.  We have listed the most recent grants first but many of the others are ongoing.

Yale School of Medicine, New Haven, CT

Iodine Transporter Research: FCF is funding a researcher at Yale School of Medicine to analyze FLC cells to discover whether they can be effectively targeted by radioactive iodine. Radioactive iodine has a long history as a safe and effective treatment for thyroid cancer. Research has indicated that fibrolamellar cells may have pathways similar to those of thyroid cancer cells.

Johns Hopkins University, Baltimore, MD

Transplant/Immunotherapy Trial: FCF, in collaboration with Johns Hopkins University, is funding a trial involving liver and bone marrow transplants from a patients' relative, for FLC patients where the disease has not spread outside the liver yet is too advanced to be treated by conventional surgery or transplant . This procedure is intended to remove visible tumor and prevent recurrence by getting the body's immune system to fight the cancer with the new bone marrow. Information about this trial is available from Dr. Ephriam Fuchs at Johns Hopkins. This trial is now recruiting patients.

Dr. Michael Torbenson while at Johns Hopkins (he is now at Mayo Clinic in Rochester, MN) wrote the first paper on blood markers for fibrolamellar which was published in the journal, Modern Pathology, in late 2010. The article recognized FCF for their financial support.  While at Johns Hopkins Dr. Torbenson was studying the microRNA of fibrolamellar cells and his laboratory was working on a genetic sequencing study of fibrolamellar to determine if there are genetic mutations unique to fibrolamellar cells. 

Rockefeller University, New York

FCF funding to Rockefeller University resulted in a potentially game-changing discovery of
a unique genetic mutation common to all fibrolamellar tissues studied, a chimera. This research was conducted at the Tucker Davis Research Facility at Rockefeller University.  Dr. Sandy Simon is head of that facility and his daughter Elana, who is a fibrolamellar patient, was a lead researcher. The results were published in the preeminent medical journal, Science and reported in The Wall Street Journal, US News and World Report, AP, The Today Show, NBC Nightly News, and presented to President Obama. 

The Foundation granted Dr. Sandy Simon funds to study immunotherapy and fibrolamellar. Rockefeller University has put their full support behind Dr. Simon and charges no administrative fees for this research. Rockefeller University has provided Dr. Simon with a dedicated  space exclusively for fibrolamellar research, The Tucker Davis Fibrolamellar Research Facility. FCF provided a freezer for fibrolamellar tissue samples. Dr. Simon's goal is finding a cure - total eradication from the body. He feels this path is through the immune system using the patients' own antibodies to track and kill the cancer cells. His research also includes melanoma and breast cancer cells.

Dr. Simon has already discovered a way to extract antibodies from a patient, mark them, and re-introduce them into the body. The marked antibodies can attach to the smallest of cancer cells which will help surgeons and pathologists determine, during surgery, whether all the cancer has been removed.

Memorial Sloan-Kettering Cancer Center, New York

FCF funded the first clinical trial of drugs aimed specifically at fibrolamellar liver cancer.  This trial was coordinated by Dr. Ghassan Abou-Alfa at Memorial Sloan Kettering Cancer Center (MSKCC).  The trial was also at other consortium members, the University of California San Francisco, Johns Hopkins, and Dana Farber. Two major pharmaceutical companies are donating the drugs.  While the trial is ongoing for exisiting patients no new patients are being accepted.

MSKCC is sequencing the exome of the fibrolamellar genome.

MSKCC is the coordinator of the Fibrolamellar Consortium.

University of North Carolina, Chapel Hill, North Carolina

Dr. Lola Reid is working with Tucker's cancer cells to determine where these cells start within the stem cells of the biliary tree. Dr. Reid has found a way to culture Tucker's cells and grow them to provide more cells for other labs' research. She is presently giving Tucker's cancer cells to immunosuppresed mice with the hope that a specific treatment option will result from her work. Dr. Reid has shared Tucker's cells with the National Institute of Health and Dr. Malcolm Moore at MSKCC.

British Columbia Cancer Center, British Columbia

Dr. Y.Z. Wang published his findings on the microRNA research he is doing on cancer. He has thanked FCF for supporting his effort. His findings will help other microRNA researchers who are studying other cancers, ie. Dr. Torbenson at Johns Hopkins University who is studying microRNA of fibrolamellar. Dr. Wang's paper sets an important precedent in cancer research in that it reports discrete molecular (microRNA) differences between tumors which metastasize and perfectly matched tumors that do not. These findings may have diagnostic, prognostic and most important of all, therapeutic implications.