Donations are Critical and Easy to Do
Storing fibrolamellar cancer cells (tissue) for future research is crucial for finding a cure and treatment for FLC. It is one of the first questions asked by researchers before they are willing to delve into the fibrolamellar world…”Is there tissue?” It is also critically important that each patient reserve some of his own tissue for personal treatment. This is best accomplished at the time of a surgery or procedure as it can be difficult to access tissue after the fact. Genetic testing of tissue and treatment plans tailored to a patient’s cancer profile are becoming an important part of cancer therapy for individual patients. Therefore, any patient undergoing surgery, biopsy or other procedures where cancer cells are being removed (for example draining fluid, ascites) should have tissue saved.
Currently there are multiple options listed below for patients to donate tumor. FCF has recently established an FCF BioBank at University of North Carolina and encourages donations there as it will benefit multiple researchers. Click here for information about the FCF Biobank.
- FCF Biobank at UNC is the only place in the country which has shown in published works to have created a fully characterized model of a PDX (patient derived zenograph) for FLC. This was derived from FCF Founder Tucker Davis’ ascites fluid. The FCF Biobank has kits which surgeons are familiar with so the tissue is taken live from the operating room and transported safely into storage. Patients can request their tissue at any point for personal use. Please click here for FCF Biobank information including details on how to have biospecimens sent to UNC.
- Store My Tumor (SMT) The Foundation has worked with StoreMyTumor to bank tissue for research and for patient use and still has tissue stored there. Patients interested in banking tissue with StoreMyTumor should contact FCF.
- Tissue Repository at Tucker Davis Fibrolamellar Research Facility
This tissue bank at Rockefeller University (RU), managed by Dr. Sandy Simon, is for fibrolamellar research at RU. Donated tissue is not for individual patient therapeutic purposes. Click here for further information about donating tissue to RU.
- Broad Institute (Harvard/ MIT) via Pattern.org: Patients can donate tissue to a specific rare cancer cell line pilot program sponsored by Pattern.org and the Broad Institute, focused on creating fibrolamellar cell lines for genomic research available to all qualified research institutions. Tissue donated here is for research, not for patient use. For more information, contact pattern.org
Note that a patient can have tissue stored in multiple tissue banks. The Foundation is happy to connect you with patient navigator Tom Stockwell who can answer questions, and guide you on how to make your donation as easy as possible. The link here to FCF Biobank Fact Sheet will provide many answers.
Meet two young patient scientists who explain the urgent need for fibrolamellar tissue.