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.
Doctors explore lifting barriers to living organ donation: Fibrolamellar patient receives partial liver transplant from a friend. Both patient and friend are doing well.
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.
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
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 singer/songwriter who wrote and dedicated The Light Inside to FCF speaks about his need to make a difference. This was filmed in October 2013, just prior to a fundraiser for FCF at the Skinny Pancake restaurant in Josh’s hometown Burlington, VT. The Light Inside is the theme music on the Official FCF video listed below and it is available on Apple Music – search under Josh Panda.
Features two patients researching their own disease and focuses on the need for fibrolamellar tissue for research.
Tells the story of the Foundation, the disease and the doctors working on research.