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 them a better chance to beat this cancer and stay healthy for many years and decades to come. We aim to create a sustainable chronic disease environment for our patients until better and more permanent solutions become available. 

Still, we have lost too many individuals over the past 18 months. We remember each one of them and it only motivates us more to help improve outcomes for our fibro-fighters. With this in mind, we have started the new year with significant momentum; our Foundation is inspired to enhance our collaborative programs, offering patients and medical teams the most comprehensive tools for impactful treatment outcomes. Our tumor board discussions benefit from the wide range of relevant data supplied by CLIA-certified reports from labs and research organizations, such as Natera, BostonGene, xCures, Pangea, and the Nagourney Cancer Institute.  

Here are some of the recent projects and initiatives the Foundation has been working on:

  • NEW Fibrolamellar Dashboard Through our partnership with xCures and using their platform we have developed a patient friendly Fibrolamellar Dashboard that provides real-time updates. This link will be available 24/7 for patients, clinicians, and researchers. It is still in a beta version and will continue to be improved to be beneficial to the community. If you have not yet signed up for xCures and you would like to do so, follow this link now to contribute your data!
  • ASCO Conference 2024 Our team, led by Medical Director Dr. Kent, will attend and present at the American Society of Clinical Oncology (ASCO) Conference 2024. Dr. Kent will present an abstract which focuses on a large cohort of over 60 FLC patients and presents findings from a novel treatment combination.  Additionally, xCures and FibroFighters will also present a poster titled “A Nationwide patient-powered observational platform defines fibrolamellar carcinoma treatment and outcomes
  • Continued Collaboration with BostonGene After completing over 50 FLC tumor portrait cases, we have again expanded our project with BostonGene. Our goal is to enhance care options for our patients by leveraging BostonGene’s AI and molecular profiling technologies through a clinical and research partnership. We have developed a report tailored to your medical team’s needs, featuring specific genes related to FLC biomarkers and genes that show common expressions and pathways. By utilizing gene tracking, we aim to uncover the cause of varying responses to treatments. Our investigation now encompasses both the tumor microenvironment and the role of HLA types in deciding treatment options.  
  • All raw data reported by BostonGene will be shared with Pangea Biomed, using AI and machine learning to report on drug combinations that show the best response, including checkpoint inhibitors. 

FibroFighters is a small but rapidly growing 501c3 Foundation devoted to providing real-time support to our entire patient community. We applaud and continue supporting all long-term projects crucial in hopes of making a monumental discovery one day. FibroFighters daily focus continues to be helping patients in urgent need. Below we list some of the ways we can support patients and their caregivers, and we encourage you to contact FibroFighters to learn more about how we can help you or your loved one. 

  • We supply the patient, caregivers, and the medical team with critical reports from our collaborators.  
  • Our Medical Director, Dr. Paul Kent, facilitates peer-to-peer calls with insurance companies, aiding patients’ medical teams in procuring off-label drugs.  
  • We are sharing valuable knowledge and resources with patients and their medical teams, encouraging collaborative and multidisciplinary care.
  • Discuss your case with our diverse team of experts during FibroFighters International Tumor Board. 
  • Our patient advocates are available to speak with patients or caregivers about challenges they may be experiencing, including monthly zoom meet-ups for caregivers.
  • We recommend appropriate trials, experienced surgeons, interventional radiologists, and radiation oncologists using the latest techniques.  

We all want the same thing: a world without fibrolamellar. By joining hands, we can continue to drive innovative patient-driven initiatives and fund future projects to serve patients TODAY while a cure is in progress. Your support is crucial to making this happen. Let us work together to obtain better results and “Slay the Fibrolamellar Beast!” 

Thank you for reading!