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 Fibrolamellar patients as typical liver cancer (HCC). This approach can be detrimental and can result in patients being prescribed ineffective treatments! For greater insights on this topic please read the Right Upper Quadrant section of this newsletter, where our Medical Director Dr. Paul Kent describes key differences between these two diseases.
Over the last few months FibroFighters has continued to work hard finding the best treatment options, clinical trials, and medical centers best equipped to care for our patients. Our reach around the world is increasing at a very fast pace and we are seeing progress globally. Recently, a patient from the U.K. was the first to receive a recommended treatment of ours in an adjuvant setting. This was a huge stride not only for this patient but perhaps for many others in the U.K. This treatment was driven by a special Mama Bear’s amazing attitude and her relentless pursuit of all options for her son. Finding an open-minded doctor who is willing to listen to our ideas can make a world of difference.
We are also expanding several programs with existing partners while developing new relationships. During this month, we signed an agreement with Pangea Biomed, an Israeli start up behind the innovative treatment response predictor, ENLIGHT. The press announcement is linked below to learn more about this relationship. This partnership will add another key tool in the box helping to determine the best treatment options for each individual Fighter. We strongly believe in the power of precision medicine and by combining our multi-faceted approach we are finding more effective solutions when combining all these CLIA labs reporting.
FibroFighters Foundation’s approach begins with initially connecting with the patient and family via Zoom learning about their unique set of circumstances. Then we use the following steps as a guideline to serve the patient:
- The Patient or their loved one signs up to the xCures Platform. (IRB Approved and Deidentified)
- Discuss case in International Tumor Board, inviting their treating team where a consensus of experts (Surgical, IR, Radiation, Systemic, holistic, etc…)
- Offer multiple key reports all from CLIA approved labs (important so results may be acted upon by clinicians if appropriate.)
- Nagourney Functional Profile Testing (If a surgical procedure or core biopsy is upcoming)
- Signatera by Natera (Circulating tumor DNA testing to monitor the level of disease between scans.)
- BostonGene tumor portrait analysis detailing the tumor microenvironment, genetic testing and complete RNA and DNA analysis of the tumor.
- Pangea Biomed will run all this data through their ENLIGHT advanced multi-therapy response predictor
We believe these steps provide our Fibrolamellar patients and families the greatest number of options for them and their local medical teams. We have witnessed some amazing success stories when expanding patient opportunities beyond what many thought would be possible. Simultaneously, we recognize and mourn the losses our community has experienced over the past year of amazing and brave Fighters we could not save. My heart, love and motivation remain with them all. They will never be forgotten as we work harder every day!
We support and applaud the fantastic work being accomplished by researchers and clinicians around the world. At FibroFighters our mission is focused on the here and now helping patients achieve their best possible outcome while this important work behind the scenes is being conducted. FibroFighters respectively asks for your help to continue this critical mission of making certain these patients have the opportunity to witness the discovery of a magic bullet soon.
Love, health, and peace to you all!