Greetings Patients, Caregivers, Friends, and valued Donors,
We hope our summer edition finds you well and enjoying the summer. It seems to always go by far too quickly.
I would be remiss not to recognize the many incredible young people we have lost to this relentless and unjust cancer this year. Each loss profoundly affects their loving families, whose lives were forever changed. These patients and families have become dear to me, sharing their highest highs and darkest moments. I hold them close to my heart as I recommit myself and our team to building an advocacy group dedicated to making as positive an impact for our Fighters and their families as possible. As my deep sadness transforms into resolve, I am reminded of the families still actively dealing with Fibrolamellar, relying on our team along with the many dedicated clinicians and researchers working to improve outcomes.
Our goal is to provide better care today through new treatments, innovative procedures, and testing, recommending the best designed clinical trials, and supporting the many ongoing long-term research projects working tirelessly in the background.
In early June, our Medical Director Dr. Paul Kent, Laura Golian, Corey Robison, and I attended the Patient Research Summit in Greenwich, Connecticut sponsored by the FCF. The day-and-a-half event was fast-paced, and while some questions were answered, many more remained open or unexplored. Highlights of the first evening were the mental health presentations and the open Q & A that followed. During day two Dr. Kents presentation on FibroFighters treatment approach and the trials currently available at Johns Hopkins seemed to glean the most interest. FibroFighters remains optimistic that the silo mentality exhibited by many well-known institutions attending will eventually become more inclusive and give way to a more congenial and open-minded approach.
The week before Dr. Kent and Laura Golian attended the ASCO 2024 Cancer Conference where we had two abstracts published. Meeting with our partners was productive, and we are excited to transform these ideas into the clinic providing better care for our FLC community.
During the past three months we began discussing new ways to introduce the metabolic drug compound KAT-101 into the patient community. We completed 75 Fibrolamellar BostonGene patient portraits and completed our work on an FLC specific cohort using a customized gene profile internally comparing samples with other FLC patients, an HCC -cohort along with a pan cancer group (multiple cancer types.) (See Dr. Kents Upper Right Quadrant to learn more) Additionally, our collaborators at xCures have collected over 125 real-time, evidence-based patient-derived records used to power our real-time FLC dashboard. The A.I. (artificial intelligence) and the machine learning portion of our partnership with xCures will be “kicking into high gear” as the platform becomes more intuitive at helping clinicians and patients navigate their care.
Earlier this year our Foundation held our first two official board meetings and elected our new officers to serve to the following two years. During these meetings, important initiatives and ideas were discussed by our diverse group of board members and advocates. Below we are proud to introduce the 2024-26 newly elected board members.
Joy Funkhouser and Mary Mitchell – Co-Chairs
Corrine Carlson- Secretary
Elise McKenna – Treasurer
Tom Stockwell – Executive Director
Dr. Paul Kent – Medical Director
Our advocacy work thrives because of your unwavering support! Every single dollar you contribute directly fuels patient-driven initiatives such as Nagourney Functional Profile Testing, BostonGene Analysis, xCures Platform, a metabolic drug to be used in a clinical environment and our unique FLC Specific Tumor Board, as well as maintaining our crucial Medical Director position. Administrative costs are covered by Tom and Carrie Stockwell so 100 % of your donations go entirely towards these life-changing efforts. Your continued support is more vital than ever. Thank you for making a difference!