Videos
Fibrolamellar Cancer Foundation Official Video
Tells the story of the Foundation, the disease and the doctors working on research. Filmed May 2012.
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.
Cure Connections Video
In this CURE Connections® program, leaders of the GI Cancers Alliance, including John Hopper, Executive Director of FCF are interviewed.
Make a Wish Foundation for a Fibro Fighter
Check out this story about a New Year’s wish to be in New York City
nbcnews.com – Teen Makes Genetic Discovery of Her 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.
Fibrolamellar Liver Cancer Research video
Features two patients researching their own disease and focuses on the need for fibrolamellar tissue for research. Filmed August 2013.
Josh Panda – The singer/songwriter who wrote and dedicated The Light Inside to FCFspeaks about his need to make a difference. Filmed October 2013.
Articles
Doctors explore lifting barriers to living organ donation
Fibrolamellar patient receives partial liver transplant from a friend. Both patient and friend are doing well.
DailyMail.com – Teenage Girl Told to ‘Stop Googling’ the cancer which killed her
This article chronicles a teenage fibrolamellar patient’s attempts to engage her care team in Great Britain. It is an example of how important it is for patients to be their own advocates and to find doctors who are aware of various treatments and new protocols for fibrolamellar. This story has also been picked up by multiple other UK newspapers as well as the NY Daily News, Fox News, and the Daily Beast in the U.S.
Science Magazine – Article on genetic mutation in fibrolamellar tissue – February 2014
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.
Wall Street Journal – Teen Helped Research Her Own Disease – Rare Cancer May Be Linked to Gene Mutation – February 2014
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.
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 – Donor of the Day – The Davis’ – April 2013
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.