Kurt Losert 
The EveryLife Foundation has announced a scholarship opportunity for rare disease patients. If you are 17 or older and a resident of the United States who has been diagnosed as having any form of rare disease, you are invited to apply for the #RAREis Scholarship Fund. Under this program, the EveryLife Foundation plans to award up to seventy …
A new study, recently published in Nature Precision Oncology, indicates that the incidence rate of fibrolamellar carcinoma (FLC) may be significantly higher than commonly cited statistics for the disease. The study, led by Dr. Travis Zack, Dr. John Gordan and Kurt Losert, combined a detailed analysis of electronic medical records (EMR) from a healthcare system …
February 28th is Rare Disease Day — a worldwide event hoping to improve the lives of the 300 million people worldwide who are living with rare diseases by raising awareness about the impact of rare diseases among policy makers, the scientific community and the general public. It was launched in 2008 by EURODIS and takes place on the …
A new study, recently published in eLife by Dr. John Gordan of UCSF, elaborates some of the downstream effects of protein kinase A (PKA) in certain cancers, including fibrolamellar. Genetic alterations that activate PKA are found in many cancer types (such as the DNAJB1-PRKACA fusion in FLC), but how that signalling leads to cancer formation …
Amara Strande, a FLC patient, and her family have joined legislators in Minnesota to advocate for changes to protect communities from toxic chemicals. “2022 is the year my cancer became unstoppable,” 20-year-old Amara Strande said in her presentation to the committee. “They can’t do surgery this time. There are no more treatments to try,” Strande …
FCF is pleased to announce that we have awarded Dr. Venu Pillarisetty of the University of Washington a two-year grant entitled “Therapeutic modulation of tumor-infiltrating T cell function in fibrolamellar carcinoma (FLC)”. Immunotherapy – harnessing patients’ immune systems to attack tumor cells – has become established as an exceptionally promising approach for cancer treatment. Prior …
FCF has recently awarded John Gordan, MD, PhD of University of California San Francisco (UCSF) a one-year grant to study “Selective translational inhibition as a treatment strategy for fibrolamellar liver cancer.”This proof-of-concept proposal will focus on testing for activity of an investigational drug zotatifin (eFT226) against human FLC tumors grown in mice. Previously, Gordan’s work …
Unfortunately, Amazon has announced that their AmazonSmile charitable donation program is being discontinued as of February 20, 2023. Until that date, 0.5% of customer purchases made via AmazonSmile will continue to be directed towards a user’s choice of charity. We appreciate the support that this Amazon program has provided FCF over the last several years, …
FCF is pleased to announce a new one-year grant award to Mark Yarchoan of Johns Hopkins University in Baltimore, MD to support the development of a protocol for a potential clinical trial. In 2020, the Johns Hopkins team began a phase I clinical trial of an experimental vaccine containing a peptide (small segment of a …