Duke University Research Conversation and Facilities Tour
The Fibrolamellar Cancer Foundation cordially invites you to a VIP Research event hosted by Dr. Anna Mae Diehl, Professor, Department of Medicine at Duke University and by Dr. Cynthia Guy, Associate Professor, Department of Pathology at Duke University Medical Center, on Monday, October 29, 2018,12:00p.m. – 2:30 p.m. The event will showcase the important fibrolamellar research work being conducted […]
FCF Scientific Director
Mark Furth, PhD, has joined FCF as Scientific Director. Having a full time scientific director adds a new realm of professionalism. Dr. Furth was educated at Harvard and University of Wisconsin. His research credentials include working at National Institute of Health, Memorial Sloan Kettering, Cold Spring Harbor Laboratories, Glaxo Smith Kline and Wake Forest University.
Social Security Agency Expands Compassionate Allowance List
Nancy A. Berryhill, Acting Commissioner of Social Security, announced five new Compassionate Allowance conditions: Fibrolamellar Cancer, Megacystis Microcolon Intestinal Hypoperistalsis Syndrome (MMIHS), Megalencephaly Capillary Malformation Syndrome (MCAP), Superficial Siderosis of the Central Nervous System, and Tetrasomy 18p. Compassionate Allowances is a program to quickly identify medical conditions and serious diseases that meet Social Security’s standards for […]
Advocates and scientists connect during Fibrolamellar Cancer Foundation visit to Cornell University
The Fibrolamellar Cancer Foundation (FCF) recently held a research event at Cornell University hosted by Praveen Sethupathy, Ph.D ’03, Associate Professor of Biomedical Sciences, who presented to fellow researchers, Foundation board members, and a patient and his family. Dr. Sethupathy reviewed his current research toward finding therapeutic targets to fight fibrolamellar cancer. Cornell University issued […]
A Great Opportunity to Get Involved in the Fibrolamellar Fight!
The Department of Defense (DOD) is seeking 2018 PATIENT & CAREGIVER grant reviewers for three cancer categories appropriate for the Fibro community: 1) Cancer in children, adolescents and young adults (New Category); 2) Liver cancer; 3) Immunotherapy (New Category). Friends from this fibrolamellar community have been very active participants over the past three years and the […]
A Parent’s Journey with Fibrolamellar
Fbrolamellar(FLC) caregiver Tom Stockwell shares his journey with son Robert. This three-part video series discusses the following: – Initial response to diagnosis – Creating a game plan to begin the fight – Important tips for FLC caregivers and patients Note, MJ Hennessey has produced these informative interviews via Cure Connections (https://www.curetoday.com/advocacy/fibrofoundation) – a leading oncology magazine and Rare […]
2018 Patient and Family Gathering
Friday Sept 7 – Sunday Sept 9, 2018, Lake Mansfield Trout Club, Stowe, Vermont – SAVE THE DATE! The Lake Mansfield Trout Club in Stowe, Vermont is a cozy, rustic lodge with plenty of spaces for conversation, walking trails and hearty fare. The gathering will start with cocktails and dinner Friday evening at 5:00 and […]
Statistics do not control outcomes
FCF’s former patient navigator, Tom Stockwell, talks about how statistics do not predict an individual patient’s journey with fibrolamellar.
2017 Highlights for FCF
RESEARCH Research Summit – FCF hosted its 2nd fibrolamellar (FLC) research conference in November. With incredible collaboration and information-sharing amongst the 20+ institutions represented, we came up with a “roadmap” for future FLC research. 2018 will see FCF put that “roadmap” into effect. FCF Summit 2017 Attendees Blueprint Medicine […]
Fibrolamellar Research Collaboration Travel Fund
The Fibrolamellar Research Collaboration Travel Fund has officially launched, following the second international fibrolamellar (FLC) research summit hosted by the FCF. The summit fostered an amazing amount of data sharing and collaborative brainstorming amongst some of the world’s greatest researchers. It was suggested by the attendees that “face-to-face” meetings are significant catalysts to facilitate ongoing […]