Media timeline

Greenwich Sentinel
Greenwich Sentinel
Fibro fighter Mark Carles shares his story and talks about the impact of the pandemic on his treatment at a February 26, 2021 Rare Disease Day event. Details are in this article by the Greenwich Sentinel.
GI Cancers Alliance Video
Ghassan Abou-Alfa, M.D., a medical oncologist at Memorial Sloan Kettering Cancer Center, discusses the basics of clinical trials, and why participation in them is important
NORD Summit
At the National Organization of Rare Diseases’ Summit (NORD Summit), John Hopper, president of FCF discusses what is next for the rare cancer community. He explains how the NORD meeting serves as a meeting place for providers, patients, and pharmaceutical companies to catch-up on the latest advances being made in the rare disease space, advances that could not have been made without communication and collaboration across the board.
AP News
Doctors explore lifting barriers to living organ donation: Fibrolamellar patient receives partial liver transplant from a friend. Both patient and friend are doing well.
Peoria Times
A young boy is currently cancer free thanks to a liver transplant from his Dad. An appreciative grandmother planned a wonderful cowboy themed event which happened in the Phoenix area April 2019 and raised funds for FCF. Details are in this news coverage from Peoria Times.
Cure Connections Video
In this CURE Connections® program, leaders of the GI Cancers Alliance, including John Hopper, Executive Director of FCF are interviewed
NBCNews.com
Teen Makes Genetic Discovery of Own Rare Cancer: News report on scientific discovery led by 18 year old patient, Elana Simon. The report includes a video from an NBC Nightly News segment with Anne Curry interviewing Elana
Science Magazine
Article on genetic mutation in fibrolamellar tissue
This prestigious journal printed an article on significant research findings made in the Tucker Davis Research Facility at Rockefeller University headed by Dr. Sandy Simon. The research is that highlighted in the NBC video posted above. The article itself is not currently available on line.
New Yorker
Open Sourcing a Treatment for Cancer – February 2014
This article reports on the Science Magazine research article and Elana Simon’s role in the research
Wall Street Journal
Teen Helped Research Her Own Disease – Rare Cancer May Be Linked to Gene Mutation
This article reported on a scientific breakthrough in fibrolamellar research made at the Tucker Davis Research Facility at Rockefeller University. Dr. Sandy Simon is head of the lab and his daughter Elana, a fibrolamellar patient, conducted much of the research. The article is not currently available on line.
Josh Panda – “The Light Inside”
Fibrolamellar Liver Cancer Research Video
Features two patients researching their own disease and focuses on the need for fibrolamellar tissue for research.
Wall Street Journal
Tucker Davis’ parents were interviewed and their work with FCF was covered in this feature which appears regularly in the Journal, called Donor of the Day. Click here to download the article.
Fibrolamellar Cancer Foundation Official Video
Tells the story of the Foundation, the disease and the doctors working on research.