For those who've passed
what's fibrolamellar? what's max's foundation?
Fibrolamellar hepatocellular carcinoma (sometimes referred to as FHC or FHCC) is a rare, malignant liver tumor. The tumor is typically characterized by fibrous bands in a unique “lamellar” pattern under the microscope. It is primarily diagnosed in patients from their young teens to late twenties. It was first described in 1956 as a variant of hepatocellular carcinoma (HCC), a primary malignancy of the liver that occurs predominantly in patients with underlying chronic liver disease, alcohol abuse (cirrhosis) and infection by hepatitis B or C. Fibrolamellar accounts for only 1% to 5% of all cases of classic HCC.
Currently, there are no known causes of fibrolamellar, and it is very difficult to diagnose because its symptoms can be attributed to many things, such as abdominal pain and fatigue. Unlike HCC, there is no blood test available to raise a doctor’s suspicion that the symptoms may be caused by something other than the flu. For most patients with fibrolamellar, the diagnosis is made after a CT-scan or MRI of the abdomen is performed, long after all other tests are completed and other causes ruled out. At that point, the images often reveal a large liver mass.
Surgery to remove the tumor and the surrounding lymph nodes is the standard treatment for fibrolamellar. There are no well-studied chemotherapy or other surgical alternatives. Without surgery, the average survival rate is 12 months. Max was never a surgical candidate, yet he managed to survive close to two years after his diagnosis.
In February 2016, the Max Burdette Fibrolamellar Cancer Research Foundation was founded and in April 2016 it was granted tax-exempt status as a 501(c)(3) organization; therefore, all donations are tax deductible. The original purpose for establishing the Foundation was a selfish one: I wanted to keep Max’s memory alive. But then I began to think about some of the things that were very important to Max. Two things stood out: St. Jude Children’s Research Hospital and finding a cure for fibrolamellar.
The stated purpose of the Foundation is to raise awareness of fibrolamellar and to provide support to those affected by this form of cancer. It will engage in fundraising events throughout the year that involve the community to provide financial support for research leading to the eradication of FHC. Specifically, however, we want to raise the necessary funds to establish a fibrolamellar research clinic at St. Jude Children’s Research Hospital.
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