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 three options for patients to donate tumor:
- Store My Tumor (SMT) The Foundation works with StoreMyTumor to bank tissue for research and for patient use. SMT has kits which surgeons are familiar with so the tissue is taken live from the operating room and transported safely into storage. SMT has an FAQ page which covers both the reasons to bank tissue and goes over their procedures and routines. Patients interested in banking tissue with StoreMyTumor should contact FCF as the Foundation covers many of the initial costs. Patients can request their tissue at any point for personal use.
- 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 and other approved institutions who have received authorization from their respective Institutional Review Boards. 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 – with StoreMyTumor for personal use and with Rockefeller University and Broad Institute for research purposes. In all three options, the Foundation is happy to connect you with the appropriate facilitator who can answer questions, and guide you on how to make your donation as easy as possible.
Meet two young patient scientists who explain the urgent need for fibrolamellar tissue.