Kurt Losert 
Deciding to participate in a clinical trial to access a new innovative treatment is an important decision for patients and their families. In a rare disease like FLC, trials specifically designed for the disease are typically offered at very few locations. Consequently, patients enrolling in clinical studies may have to spend many days or weeks …
Marina Baretti, MD of Johns Hopkins University recently provided an update on a clinical trial for fibrolamellar patients that intends to leverage the “glutamine addiction” of FLC tumors. The trial, “DRP-104 (Glutamine Antagonist) in Combination With Durvalumab in Patients With Advanced Stage Fibrolamellar Carcinoma”, is currently open for patient enrollment at the Sidney Kimmel Comprehensive …
We are pleased to announce that FCF has awarded Dr. Juliane Walz of the University Hospital Tübingen a grant to develop and launch a new clinical trial for FLC patients. This phase I study will assess the safety and efficacy of a peptide vaccine (Fusion-VAC-XS15) against FLC’s driver protein in a different clinical context than …
Thanks to the incredible generosity of Stone Point Capital (SPC), tournament sponsors, and participants, this year’s SPC Charity Golf Tournament raised over a million dollars to support fibrolamellar research! Over the years, this annual fundraiser has tremendously impacted FCF’s ability to fund critical research into the disease. At the event, Chuck and Marna Davis discussed …
A perspective on Rare Cancer Day. This year more than 600,000 lives in the US will be lost to cancer. The five most common malignancies account for half of these deaths. Most of the victims are elderly; fewer than 2% of cancer fatalities occur under age 40. Rarer cancers, especially those affecting youthful patients, receive …
Congratulations to Marina Baretti, MD who was installed as the inaugural recipient of the Jiasheng Professorship in Hepato-Biliary Cancer Research at the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center. Dr. Baretti has been actively involved in both FLC patient care and research. She has been instrumental to several path breaking research efforts for this disease, …
In a study funded by FCF, scientists at Cornell University analyzed the differences in the proteins and metabolites present in fibrolamellar carcinoma (FLC) and normal tissues to better understand the metabolism of the disease. Their findings, published in Cell Reports Medicine on August 28, offer deep insights into the metabolic alterations that occur in FLC, …
A new era in cancer therapy dawned in 2011 when the FDA approved ipilimumab (Yervoy) to treat metastatic melanoma. This was the first of a novel class of drugs called immune checkpoint inhibitors (ICIs), which “take the brakes off” the immune system’s ability to kill cancer cells. Today eleven different ICIs are available in the …
Here’s your chance to double your impact on fibrolamellar research! Thanks to the generosity of the Chuck & Marna Davis family …