Announcements

A Parent’s Journey with Fibrolamellar

Patient Navigator and fibrolamellar(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 (www.cureconnecdtions.com) – a leading oncology […]

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 […]

Message from FCF Patient Navigator

FCF’s 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 […]

FCF’s Second Scientific Summit

FCF is excited to report that collaboration and sharing was the key mantra at the 2017 Summit. The presenters, researchers and physicians, shared both their published and unpublished scientific findings. After each presentation there was time for questions and answers prompting significant discussion. The wrap-up session was a round-table discussion entitled Roadmap to a Cure. […]

Shop AmazonSmile to benefit FCF

AmazonSmile is a simple and automatic way for you to support FCF every time you shop, at no cost to you. When you shop at smile.amazon.com, you’ll find the exact same low prices, vast selection and convenient shopping experience as Amazon.com, with the added bonus that Amazon will donate a portion of the purchase price to […]

The Fibrolamellar Foundation is pleased to announce the appointment of our first Patient Navigator – Tom Stockwell

Tom Stockwell has accepted a role within the Fibro Foundation team as Patient Navigator, effective July, 2017. Tom has acquired a tremendous understanding of fibrolamellar from many different perspectives and it is those combinations that make his addition to FCF a great fit. Tom’s son Robert was diagnosed with Fibrolamellar in 2013 at the age of […]

FCF and GI Cancers Alliance

FCF was selected to join GI Cancers Alliance, sponsored by Georgetown’s Lombardi Comprehensive Cancer Center. The GI Cancers Alliance was founded as a national organization in 2015 by The Ruesch Center for the Cure of Gastrointestinal Cancers  as a way to bring together the various GI cancer advocacy groups. The alliances’ mission is to work together […]

Test to diagnose fibrolamellar

The Mayo Clinic just announced a test to diagnose fibrolamallar which appears to have 100% accuracy.