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 …
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 …
Please join FCF and your fibrolamellar family and friends on December 21, 2020 at 7:30 pm EST to spread some holiday cheer! All fibrolamellar patients and caregivers are welcome to stop by to say hello to your friends and listen to music featuring Glenn and Oria Alexander. Enjoy a hot cocoa, or cocktail, and wear …
FCF would like to extend a special thank you to Jenny Carroll, Ben Saksa, and Linda Spink who participated in the 2020 Department of Defense grant review process this fall. Each of these members of our community volunteered to be a consumer advocate for the Congressionally Directed Medical Research Programs’ (CDMRP) Peer Reviewed Cancer Research …
Many of us shop at Amazon for a wide range of products. Did you know that the Fibrolamellar Cancer Foundation can benefit from each purchase you make at no additional charge to you? AmazonSmile is a simple and automatic way for you to support FCF when you shop on Amazon this holiday season or any …
We thank everyone in the fibrolamellar community who participated in our “Virtual Fall Gathering”, the replacement for our 8th annual Patient and Family Gathering that was cancelled due to the coronavirus crisis. We hope you found the experience useful and informative. Video recordings of the public portions of each session are now viewable on FCF’s …