FIBROLAMELLAR CANCER FOUNDATION

The principal purpose of the Fibrolamellar Cancer Foundation is to encourage, drive and fund research that will substantially improve outcomes for fibrolamellar carcinoma (FLC) patients. We envision a world where all people with FLC will be diagnosed early, treated effectively and hopefully cured.

FCF is pursuing several key strategies to accelerate the development of effective therapies for FLC. We:

• Review and fund FLC-specific grant proposals that will advance our understanding of the disease, identify possible treatment options, and eventually improve diagnosis and patient outcomes.

• Assemble fibrolamellar carcinoma researchers worldwide to participate in our summits and working groups to help accelerate research progress and support rapid information sharing.

• Develop and distribute repositories of biospecimen, cell-lines and disease models that are critical to support cutting-edge research into the disease

• Encourage patients and caregivers to become actively involved in FLC research efforts, and develop programs and capabilities to support that involvement.

FCF's efforts are made possible by the generosity and actions of a committed community of donors, patients, caregivers and researchers. We have an extremely small, but motivated team of staff and volunteers that are committed to the fight. We have a strong research network consisting of over 25 highly respected institutions with experienced researchers that are recognized as experts in their fields. We have a motivated patient and caregiver community that recognizes the need to fund and drive innovative research to discover effective treatments for the disease. In addition, thanks to Charles and Marna Davis Foundation which funds the operating costs of the Foundation, 100% of every dollar donated directly supports high-impact research efforts.

When the foundation was started in 2008, little information was available about the disease. Today, thanks to the generosity of our donors and the efforts of capable researchers, that situation has changed considerably. Important milestones achieved include:
(1) Over $12 million in research funding has been invested in over two dozen research institutions;
(2) A genetic mutation common to almost all fibrolamellar tumors, has been discovered and it proves to be the
driver mutation of this cancer;
(3) Several important pathways critical to disease development and growth have been identified;
(4) A large and incredibly talented team of dedicated researchers are collaborating with others on this cancer;
(5) The disease has gotten recognition and incremental funding from major players in rare disease research, including the National Institutes of Health (NIH) and the Chan Zuckerberg Initiative;
(6) Four clinical trials specific to fibrolamellar carcinoma have been developed and launched;
(7) A centralized biobank has been established to store and distribute critical biospecimens to research teams;
(8) A few cell-line and PDX models have been established and made available to the research community.

We are highly encouraged by the progress and momentum established since the Foundation was established. However, much critical work remains to be done. Surgery is still the only treatment that is clinically-proven to improve life expectancy. No standard-of-care exists for the disease. Patients are still suffering.

We are committed to pressing forward the search for effective treatments of this devastating disease.