News, Events, and Happenings in the Fibrolamellar Community

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...

New Collaboration with Pangea Biomed

As part of “Fibrolamellar Cancer Awareness” month as we recognize it, FibroFighters is proud to...

A Mother’s Heart by Sadia Siddiqui

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

RUQ: Differences Between FLC and HCC

This October is Liver Cancer Awareness Month. Fibrolamellar is a type of liver cancer, but it is...

FibroFighters Annual Golf Tournament 2023

On October 1st FibroFighters hosted its 3rd annual golf tournament to raise funds to help finance...

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...

News

New Collaboration with Pangea Biomed

As part of “Fibrolamellar Cancer Awareness” month as we recognize it, FibroFighters is proud to announce our partnership with Pangea adding yet another critical tool providing better insights into clinical care for Fibrolamellar patients while continuing to gather...

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

New Collaboration with Pangea Biomed

As part of “Fibrolamellar Cancer Awareness” month as we recognize it, FibroFighters is proud to announce our partnership with Pangea adding yet another critical tool providing better insights into clinical care for Fibrolamellar patients while continuing to gather...

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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.

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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New Collaboration with Pangea Biomed

As part of “Fibrolamellar Cancer Awareness” month as we recognize it, FibroFighters is proud to announce our partnership with Pangea adding yet another critical tool providing better insights into clinical care for Fibrolamellar patients while continuing to gather important clinical data. We are looking forward to working closely with our friends at Pangea. Check out the press release about the new collaboration here: https://www.webwire.com/ViewPressRel.asp?aId=312660

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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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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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