News, Events, and Happenings in the Fibrolamellar Community

FibroFighters Annual Golf Tournament 2023

FibroFighters is proud to announce our 3rd annual Golf Tournament in San Marcos California Sunday...

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:...

Quarterly Newsletter: Summer 2023

Summer-2023-FibroFighters-Quarterly-NewsletterDownload

Finding Strength and Resilience by Ella Neal

A great many things can happen while walking 150 miles. Clearing rocks from my shoes more times...

The Neal Family Walk for FibroFighters

In early June, Dennis, Denise, and Ella Neal (their “Fibrofighter” daughter) walked 150 miles on...

FibroFighters Summer Message from the Founder

All of us at  Fibrofighters hope you and your families are enjoying the summer...

Presenting FLC Posters at ASCO 2023

FibroFighters had a great opportunity to show off our research at the largest and most important...

Quarterly Newsletter: Spring 2023

Spring-Newsletter-2023-2Download

Welcome from the Founder

Welcome Fibro family to our introductory seasonal newsletter.  My name is Tom Stockwell,...

When Hope is All You Have by Terra Goudge

When I was diagnosed with Fibrolamellar in 2001 I remember thinking life as I knew it would never...

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...

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:...

Events

FibroFighters Annual Golf Tournament 2023

FibroFighters is proud to announce our 3rd annual Golf Tournament in San Marcos California Sunday Oct 1st. It will be held at The Links at the Lakehouse in San Marcos, California. A gorgeous location perfect for playing a few holes and supporting the efforts of...

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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.

Finding Strength and Resilience by Ella Neal

A great many things can happen while walking 150 miles. Clearing rocks from my shoes more times than I could count, getting into deep talks with friends and strangers alike, seeing incessant warnings of poop in the road, visits to Dr. Blister (dad), finding Band-Aid splints for my malformed toes, eating Pulpo (octopus) and other vaguely odd looking seafood. However, I did not expect self discovery to be on this list. To be honest, I was not sure that I could even make it to Santiago, the...

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The Neal Family Walk for FibroFighters

In early June, Dennis, Denise, and Ella Neal (their “Fibrofighter” daughter) walked 150 miles on the Portuguese Camino trail accompanied by a small group of supporters. The Camino is an ancient pilgrimage dating back to the 11th century and ends in Santiago de Compostela, Spain. The group walked from the city of Porto in Portugal all the way to Santiago as a FibroFighters fundraiser, in addition to raising awareness about this rare cancer. Though not without challenges, this Camino...

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FibroFighters Summer Message from the Founder

All of us at  Fibrofighters hope you and your families are enjoying the summer holidays.  We continue to work hard on behalf of all our FLC patients and families, and want to share some updates and examples with you. We began our collaboration with xCures over two years ago, and we now have close to 100 participants offering real world data to be used by any research organization.  Patients do not have to spend valuable time self-reporting it is all performed seamlessly for...

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Presenting FLC Posters at ASCO 2023

FibroFighters had a great opportunity to show off our research at the largest and most important oncology meeting in the world: the 2023 American Society of Clinical Oncology (ASCO) Annual Meeting. It was held this year in Chicago from June 2-6. Of the 5,760 Abstracts, posters, and papers accepted, only five were about Fibrolamellar Hepatocellular Carcinoma. Of those five, four were from FibroFighters and one was from MD Anderson (describing the 3 patients on their clinical trial for FLC who...

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Welcome from the Founder

Welcome Fibro family to our introductory seasonal newsletter.  My name is Tom Stockwell, Executive Director of FibroFighters Foundation.  During the past six years I have had the opportunity to meet so many extraordinary patients and their loving resolute families.  Being inspired by Robert and all our past and present FibroFighters we continue our unwavering support by assisting patients and families affected by fibrolamellar.   I am incredibly proud of our volunteer...

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When Hope is All You Have by Terra Goudge

When I was diagnosed with Fibrolamellar in 2001 I remember thinking life as I knew it would never be the same. My future seemed uncertain and my mind swirled with thoughts of how to navigate what seemed to be the scariest most unknown cancer diagnosis I would ever encounter. I quickly learned that my doctors knew very little if anything about how to help me and so began my lonely journey of learning as much as I could and advocating to save my life. Today, some 22 years later, I have...

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Healing Through Connection by Amanda Adams

Hi, my name is Amanda, and my partner, Paris, has been a FibroFighter for a little over a year. When Paris first got diagnosed with Stage IV Fibrolamellar Hepatocellular Carcinoma it felt like my life came to a complete halt. It stopped, got shaken up, and got turned completely upside down, and it remained that way for a year. Every day I would wake up more devastated than the previous day, I couldn’t stop grieving the life we used to have and I couldn’t get a grip on the anxieties I had for...

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Welcome from Medical Director Dr. Paul Kent

Welcome to the First edition of FibroFighters Quarterly Newsletter. My name is Dr. Paul Kent, but you can call me Paul. You can read about my background here. You might remember being asked about the "Right Upper Quadrant" or seeing RUQ in your healthcare provider's notes: this is where the liver lives in your abdomen. I am going to use this as a place to respond to Frequently Asked Questions and also to highlight work in Fibrolamellar Carcinoma Medicine. You can submit questions by email at...

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