News, Events, and Happenings in the Fibrolamellar Community
News
Dr. Kent Interviews Dr. Jordan Tasse Interventional Radiology Director at Rush University in Chicago
During an interview conducted by Dr. Kent, Dr. Tasse emphasized the significance of educating the community about lesser-known therapies. At FibroFighters, our mission is to increase awareness about Fibrolamellar, and we strongly believe that this understanding can...
BostonGene and FibroFighters Collaborate to Revolutionize Clinical Care for Patients with Fibrolamellar Carcinomas
We are excited to announce the expansion of our collaboration with BostonGene. BostonGene is a leading provider of AI-driven molecular and immune profiling solutions. FibroFighters began working with this innovative company about a year and half ago. From the...
TARGET: Cancer Podcast featuring Dr. Paul Kent
Last week, our amazing Medical Director Dr. Paul Kent was a special guest on an episode of TARGET: Cancer Podcast with Dr. Sanjay Juneja, the "OncDoc." In the discussion, Dr. Kent sheds light on the unique challenges faced by patients with fibrolamellar carcinoma and...
Podcast Episode feat. Dr. Jordan Tasse
The Cardiovascular Learning Network recently featured Dr. Jordan Tasse in a conversation on their podcast. Check out the full conversation at the link here:...
xCures Partners with FibroFighters
https://xcures.com/xcures-partners-with-fibrofighters/
Father who lost son to cancer teams with prominent oncologist for research
A Temecula father who lost to his son to cancer has teamed with a prominent oncologist in Long Beach to find a cure or treatment for the extremely rare disease.
Events
FibroFighters Annual Golf Tournament 2023
On October 1st FibroFighters hosted its 3rd annual golf tournament to raise funds to help finance many of our patient-driven initiatives. We were so pleased to see nearly a 50% participation increase over the previous year and a fun day was had by all! Next year we...
Athletes Unlimited
Gianna’s Cheers for Hope – 5K Annual Run
FibroFighters Annual Golf Tournament 2022
Isaac Forever Car Show
Happenings
FightingFibro Etsy Shop
One of our incredible fighters and patient advocates, Paris, and his wife and caregiver advocate, Amanda, have put their creative talents together and designed apparel to raise money for the FibroFighters Foundation! Paris describes his design as “anime/streetwear...
#OurPromise4Fibro Campaign
FibroFighters Foundation does not underestimate the power of accountability and a public promise. Making these promises to our community is a meaningful way to hold ourselves accountable to reaching foundation goals. By making these promises we are making a...
Camino de Santiago Pilgrimage #Neals4Fibro Campaign
Welcome to our website!
We are thrilled to have lauched the FibroFighters Foundation website. Explore our content. We hope to connect soon.
Quarterly Newsletter
Each quarter (Spring, Summer, Fall, Winter) we release a newsletter to update our community about the initiatives we are working on as well as to highlight stories from fighters and those who love them! Check out our Newsletter content here.
Spring 2026 Newsletter: AYA Cancer Awareness Week!
April 2026 - April Newsletter AYA Awareness WeekDownload
Quarterly Newsletter: Autumn 2025
Autumn2025-OctoberQuarterlyNewsletterDownload
Right Upper Quadrant: New Understanding of Surgery and Fibrolamellar Carcinoma
Have you ever heard, “Only surgery or liver transplant can cure your Fibrolamellar Carcinoma?” Maybe you've been told “surgery must be done as soon as possible" because “there are no systemic therapies that are proven to work.” Worse still, have you been told "your Fibrolamellar Carcinoma s not resectable/transplantable, so you are not curable.” If you have, I am sorry. These statements are scary, out of date, and oversimplified. They do not reflect our current understanding and research on...
FibroFighters Autumn 2025: Message from the Founder
Dear FibroFighters Community, Every October, we unite for Fibrolamellar Cancer Awareness Month - a time to spotlight Fibrolamellar Carcinoma (FLC), a rare and oftentimes aggressive liver cancer that must be treated as its own entity, not grouped with other liver cancers. After years of working with patients, we’ve seen how late diagnoses and limited understanding impact lives. Awareness is more than a word, it drives research toward better treatments, empowers patients, and brings hope to...
Community Corner: Recognizing Fibrolamellar Awareness Month
October is Liver Cancer Awareness Month, and at FibroFighters Foundation we want to highlight Fibrolamellar Carcinoma during this important month. Since Fibrolamellar is such a rare type of liver cancer, it's important we consider it distinct from other liver cancers, like HCC. Here are some important distinctions and facts about fibrolamellar carcinoma: Rarity Fibrolamellar carcinoma (FLC) is a standalone cancer and should be diagnosed and treated as such! There are only between two to three...
Fighter Feature: Sending It In Chicago!
Send It Day Trip Participants posing together after an afternoon of climbing. Laura Golian pictured bottom middle.
Quarterly Newsletter: Summer 2024
Summer 2024 - Quarterly NewsletterDownload
Fighter Feature: Meet Taylor Epperson
Hello everybody, my name is Taylor. I am 24 years old. I am from Texas And I was diagnosed with fibrolemellar on April 10th, 2023 when I was 23 years old. I currently have taken 21 chemotherapy treatments. I still am continuing to do treatments. I will have my 22nd treatment tomorrow actually. FibroFighters has helped me from the very beginning of my journey with this disease. I was lost. I was unsure of where to start or who to go to and they had reached out to me and offered to help. And...
Community Resources: Patient Virtual Meet Ups
Laura is a fibrolamellar survivor and Patient Advocate with the FibroFighters Foundation. Laura in September 2019 after liver resection. I was diagnosed with Fibrolamellar Carcinoma in September 2019. After an initial resection, I was told things looked good and no treatment was needed, but scans were needed every three months. Things looked good at my 3 month, 6 month, 9 month, and year scans. I thought I was in the clear. Laura in August 2023 after completing over two years of...
FibroFighters Summer 2024 Message from the Founder
Greetings Patients, Caregivers, Friends, and valued Donors, We hope our summer edition finds you well and enjoying the summer. It seems to always go by far too quickly. I would be remiss not to recognize the many incredible young people we have lost to this relentless and unjust cancer this year. Each loss profoundly affects their loving families, whose lives were forever changed. These patients and families have become dear to me, sharing their highest highs and darkest moments. I hold them...