Princess Máxima Center Announces FCF Support of Research Effort

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 …

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Fibrolamellar patient participation requested in National Cancer Institute (NCI) study

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 …

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Jessica Ellison named finalist for 2021 Extraordinary Healer Award for Oncology Nursing

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 …

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Greenwich Sentinel interviews Marna Davis

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 ongoing research into the disease. Click here to read …

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A Great Opportunity to Get Involved in the Fibrolamellar Fight!

The Department of Defense (DOD) is seeking 2021 PATIENT & CAREGIVER grant reviewers for two cancer categories appropriate for the Fibro community: Liver Cancer, and Pediatric, Adolescent And Young Adult Cancers. 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 …

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Mark Carles shares his story with Rare Disease Day audience

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 …

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The Gregg family and the Northwestern Mutual scholarship opportunity

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 …

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New clinical trial testing nivolumab, 5-FU, and interferon alpha-2b now open

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 …

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FCF launches new series of research-focused virtual events

This month, FCF is hosting the first of a series of research-oriented Virtual Open Houses and expert panel discussions focused on the evolution of research and clinical care in FLC. These events are designed to highlight the breadth of fibrolamellar research activity currently underway at leading academic medical centers throughout the country, and to discuss …

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