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 commitment that we have some control to deliver results.
Providing the promises listed below emboldens our team, personally, emotionally, and ethically to be responsible and committed to following through.
- Most importantly and based upon our founding principles we will continue and expand our commitment to advocate for each patient and caregiver who reaches out to us for support. As part of this promise, we provide education to patients and the medical community regarding updated treatment options and the many specific nuances of fibrolamellar.
- Continue our work on “The FibroProject” at the Nagourney Cancer Institute (A CLIA-approved lab so results may be shared with your medical team and insurance companies) by offering functional profiling of patient’s tumor tissue samples utilizing the patients viable tumor’s cells as part of a customized drug assay designed by FibroFighters and Dr. Nagourney.
- Expand the collaboration efforts already established between xCures and FibroFighters by now supporting our International Tumor Board, Link to tumor board sharing patient data in one easy-to-read format for quick review by the team of FLC experts allowing for a consensus outlining the next treatment steps. Second begin to report on the real-world evidence we have been collecting and share its findings with the community on an ongoing and timely basis covering topics of real time patient interest such as which treatments are showing the most and least promise. xCures will help us develop expanded access trials and key N of One local clinical trials, additionally they will help support researchers and pharma relating to FLC.
- Continue to recruit and strengthen our bench finding the most qualified doctors and researchers around the globe who share our passion for our patients and community by learning new ideas, thinking out of the box, and not conforming with the status quo.
- Leverage reporting from BostonGene and Natera to provide CLIA-approved results providing your team with more tools allowing them to offer you a greater number of options. If you enrolled in xCures we can add these reports into your xINFORM profile for further analysis.
- Continue to help move a clinical trial forward (Already FDA approved) utilizing a small molecule that has shown promising results in our FibroProject at the Nagourney Lab.
- Perhaps our most important promise is never giving up on you! I know how committed our Medical Director Dr. Kent and I are in finding answers for even the most difficult cases that everyone else have given up on. We will use every tool at our disposal currently and continue to find new paths forward. Contact Dr. Kent paulkentmd@fibrofighters.org