The University of Colorado Cancer Center recently published the inspiring story of how Ella Neal beat stage IV fibrolamellar carcinoma (FLC). Many thanks to Ella for sharing this account of her fibrolamellar journey and for donating tumor tissue to the FCF BioBank to support research into new FLC treatments. Hopefully, efforts like Ella’s to build …
An announcement by the Princess Máxima Center for pediatric oncology, a center that brings together the complex care and research for children with cancer in the Netherlands, describes a new research effort supported by FCF. In this new study, Benedetta Artegiani will apply her experience researching organoids to determine the role BAP1 plays in fibrolamellar …
Fibrolamellar patients are encouraged to participate in the Natural History Study of Rare Solid Tumors, currently underway at the National Cancer Institute (NCI) in Bethesda, Maryland. The purpose of this study is to better understand how rare solid tumors develop and grow. Natural history studies like this will help researchers learn more about fibrolamellar carcinoma …
Congratulations to Jessica Ellison of Rush University Medical Center in Chicago who was recently named a finalist by the CURE Media Group for their 2021 Extraordinary Healer® Award for Oncology Nursing. This award honors outstanding nurses for their compassion and contributions to oncology care. Jessica Ellison, MSN, RN, CNL is a transplant coordinator at Rush …
In the following article, published by the Greenwich Sentinel on March 19, Marna Davis shares the story of the Fibrolamellar Cancer Foundation. In it, she outlines her son Tucker’s experience with fibrolamellar carcinoma, explains the history and mission of the foundation, and expresses her optimism about the progress that is being made against the disease. …
The Department of Defense (DOD) is seeking 2021 PATIENT & CAREGIVER grant reviewers for two cancer categories appropriate for the Fibro community: Over the last several years, friends from the fibrolamellar community have been very active participants in the DOD’s Peer Reviewed Cancer Research Program (PRCRP), working alongside prominent scientists to provide input on how the DOD’s research funds …
Fibrolamellar fighter Mark Carles described his fight with FLC and the challenges he has faced over the last year at a “Rare Disease Day” event held in Greenwich, Connecticut on February 26, 2021. Carles, a former triathlete and graduate student, was diagnosed in October 2018 at the age of 24. In his remarks, Mark said that …
When childhood cancer strikes, it has a devastating impact on the patients and their families. The cost of treatment can lead to long-term financial challenges, including questions of how to afford higher education. Below is a story about Adam Gregg, a fibrolamellar fighter, and his family that was posted on the web media channel Romper …
A new clinical trial for fibrolamellar carcinoma (FLC) is now recruiting subjects at the University of Texas M.D. Anderson Cancer Center in Houston, Texas. This phase I/II trial studies the safety, tolerability, and effectiveness of a combination of nivolumab, 5-fluorouracil (5-FU), and interferon alpha-2b (IFN-α2b) for the treatment of fibrolamellar cancer that cannot be removed …