News, Events, and Happenings in the Fibrolamellar Community

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...

Quarterly Newsletter: Winter/Spring 2024

Read our entire Winter/Spring 2024 newsletter. Winter-2024-Quarterly-NewsletterDownload

Winter/Spring Message & Updates from the Founder

Fibrolamellar patients and families are receiving better support and options than ever before!...

I Believe (Robert’s Story) by Sarah Pine

Written by Sarah Pine, fibro fighter. She is currently a journalism student at University of...

Fibro Fighting in the UK by Suzanne Vickery

Daniel has always been a daredevil; an adrenaline junky, doing everything fast and breaking a fair...

RUQ: Causes for Hope

This winter and throughout last year we an inordinate amount of suffering in the fibrolamellar...

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...

Quarterly Newsletter: Fall 2023

Fall-2023-Quarterly-Newsletter-FibroFightersDownload

FibroFighters Fall Message from the Founder

Greetings Fighters, Caregivers, Clinicians and Donors, We hope you all enjoyed your summer and are...

A Mother’s Heart by Sadia Siddiqui

Receiving the devastating news that your child has cancer is something that no one can truly...

News

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...

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...

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Happenings

FightingFibro Etsy Shop

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...

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#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...

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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.

Winter/Spring Message & Updates from the Founder

Fibrolamellar patients and families are receiving better support and options than ever before! FibroFighters Foundation is committed to improving care and patient outcomes for those battling Fibrolamellar Hepatocellular Carcinoma (FLC). We are proud to have helped dozens of stage IV FLC patients, many of whom were in hospice. These patients underwent surgical or interventional procedures after receiving neo-adjuvant chemotherapy, and continue to receive an effective adjuvant treatment, giving...

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I Believe (Robert’s Story) by Sarah Pine

Written by Sarah Pine, fibro fighter. She is currently a journalism student at University of Pittsburgh, and wrote this piece for a class assignment. Sarah Pine Robert Stockwell I.           Preface   I was diagnosed with Fibrolamellar Hepatocellular Carcinoma, a rare liver cancer occurring in 1 in 5 million people, in July of 2023, but at that point the cancer was already gone. As confusing as it sounds, I only found out that the...

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Fibro Fighting in the UK by Suzanne Vickery

Daniel has always been a daredevil; an adrenaline junky, doing everything fast and breaking a fair few collar bones along the way. Last winter saw him in Canada training to be a snowboarding instructor and enjoying life to the full. One day he crashed against a post at high speed with abdominal impact, so it didn’t surprise him that he had an ache there over the next few weeks – to be honest everything ached really. He’d also noticed that he was a bit breathless climbing the stairs, he assumed...

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RUQ: Causes for Hope

This winter and throughout last year we an inordinate amount of suffering in the fibrolamellar community. It has been unimaginably hard for so many parents, partners, caregivers, siblings, and children. It’s hard for your doctors also. It can leave many to wonder, is there any reason for hope? I am here to remind you, and even myself, that there is indeed cause for hope, based in facts. FibroFighters has now seen 186 different patients from twenty-seven countries. The survival of our patients...

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FibroFighters Fall Message from the Founder

Greetings Fighters, Caregivers, Clinicians and Donors, We hope you all enjoyed your summer and are looking forward to a healthy and happy fall season. As we move through Liver Cancer Awareness Month, a month we promote and recognize as “Fibrolamellar Cancer Awareness Month,”  we continue our primary mission supporting patients all around the world. Part of this support is educating clinicians about the unique characteristics of this disease. We have found many clinicians continue to treat...

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A Mother’s Heart by Sadia Siddiqui

Receiving the devastating news that your child has cancer is something that no one can truly prepare for. It's a heavy blow that knocks the wind out of you, and just as you begin to process the weight of that statement, you're hit with the harsh reality that it's an incredibly rare form of cancer, with no known cure.  When Jansher was diagnosed, I couldn't help but feel an overwhelming sense of disbelief. After going through my father's cancer journey, which took him at only 47,  and my...

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RUQ: Differences Between FLC and HCC

This October is Liver Cancer Awareness Month. Fibrolamellar is a type of liver cancer, but it is very different from Hepatocellular Carcinoma in many important ways. It is critically important for doctors to understand and appreciate the differences and distinctions between these two diseases. Otherwise, doctors are not treating the right illness. Patients with fibrolamellar carcinoma (FLC) have long suffered and even died, and continued to, from being treated like they have hepatocellular...

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