Aug 21, 2015
Conquer Cancer Foundation Donor Spotlight: Fibrolamellar Cancer Foundation
When Tucker Davis was diagnosed with fibrolamellar hepatocellular carcinoma (FL-HCC) in 2008, there was very little information available about this very rare cancer and, as Tucker would soon discover, even fewer treatment options. An annoying cough and sharp pain radiating down the back of his leg eventually prompted him to see his physician. After a few tests, he was shocked to learn that he had a very rare form of liver cancer that is only correctly diagnosed in an estimated 200 people each year worldwide. Upon realizing the lack of information about FL-HCC and nonexistent patient community, Tucker, his girlfriend, and two friends started the Fibrolamellar Cancer Foundation (FCF).
Tucker passed away in 2010 at only 28 years old. According to Marna Davis, Tucker’s mother and President of FCF, “The last 18 months of his life were his finest hour. We saw courage in him that we had never seen before. He was funny, sweet, kind, goofy, never got depressed, and just had an attitude to live.” Tucker once said, “Mom, I know there is a cure out there and I hope we find it in my lifetime, but if we don’t you have to find it.” Tucker’s legacy lives on in the foundation he founded and established to help other patients and families affected by FL-HCC.
The mission of FCF is three-fold: find a cure and treatment options, raise awareness of this disease, and connect and support the community of patients with FL-HCC and their families. According to John Hopper, Executive Director of FCF, one major challenge is that very little government research is being funded in this area, since there are such low incidence rates of the disease.
One way that FCF has addressed this challenge is by supporting the creation of the Fibrolamellar-Hepatocellular Carcinoma Consortium, which brings together academic medical centers and universities to cooperate and share information about FL-HCC. FCF is aggressively supporting research in this area and has funded the Tucker Davis Fibrolamellar Research Facility, the first tissue bank for fibrolamellar samples, which is maintained at the Rockefeller University. It is also funding efforts to create mouse models to replicate tumors so physicians and scientists can investigate different therapies.
In 2016, FCF is generously supporting a Conquer Cancer Foundation of ASCO Young Investigator Award (YIA) in FL-HCC. The Conquer Cancer Foundation is currently accepting YIA applications and encourages eligible physicians conducting research on FL-HCC to submit an application. The submission deadline is September 24, 2015. Eligibility criteria and application instructions are available online.
“To encourage someone early in their career to learn about FL-HCC, focus on it, and give them the opportunity to collaborate with a senior researcher at that organization is a great starting point,” said Mr. Hopper of the FCF-supported YIA. He urges young investigators to take a “deep look” at FL-HCC, and hopes that young minds coming out of medical and fellowship programs may see this as a way to make a difference in people’s lives. FCF is especially pleased to be working with the Conquer Cancer Foundation and ASCO to generate additional awareness about this disease through the YIA program, which reaches a very large global population.
“While fibrolamellar hepatocellular carcinoma is rare, it is relatively simple, with few mutations noted, occurring in apparently healthy young people with a generally predictable natural history, so many of the typical confounders are not present,” said Alan P. Venook, MD, of the University of California, San Francisco, an ASCO member who serves on the FCF Scientific Advisory Board. “The bonus is that it is not unlikely that a discovery in a rare cancer may open up other areas of exploration in common cancers."
FCF is focused on motivating research and encouraging collaboration in the scientific community. In 2014, FCF convened its first scientific conference in Greenwich, CT, where approximately 30 U.S. and international physicians and scientists who are studying FL-HCC, treating patients with FL-HCC, or expanding their understanding of the disease all gathered to learn from one another and engage in collaborative efforts.
Creating a community for patients and their families was of unparalleled importance to Tucker Davis. FCF maintains an active dialogue with its stakeholders through social media and on its website. Since 2012, FCF has hosted a yearly gathering in Stowe, VT, for over 100 people from around the country who have been affected by FL-HCC. There is no agenda, program, or scheduled sessions during this retreat. It is simply a wonderful opportunity for patients, families, and caregivers to meet others who have been affected by this disease, to create connections, and to promote bonding amongst this community.
With obvious passion and conviction, Mr. Hopper explained that FL-HCC is the most interesting puzzle he has faced in more than 35 years in the business world. “All the pieces are out there. Energetic minds want to research this. Passionate oncologists want a cure for this. What we have needed is someone to be able to put these pieces together and see the big picture. Strategic collaboration will allow us to extend people’s lives and hopefully find a cure for this disease,” he said.