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CURE Media Group.
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Cure Media Group, LLC. All Rights Reserved.
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Fibrolamellar Cancer Foundation

In 2008, when Tucker Davis was diagnosed with fibrolamellar hepatocellular carcinoma (FHC), he founded the Fibrolamellar Cancer Foundation (FCF) with his good friends Alisha Sternenberger, Charles Beermann and Derek Gilchrist. It was their hope to find a cure for this disease, which is often fatal. Because the incidence of FHC was so rare, little research had been conducted at that time. FCF has helped change that.
The Chan Zuckerberg Initiative (CZI) announced that the Fibrolamellar Cancer Foundation (FCF) is among a select group of patient-led rare disease organizations, including rare cancer foundations, to receive the first CZI Rare As One Network grant.
Craig Lustig and Martha Raymond remark on the impact of the GI Cancer Alliance’s partnerships with advocates and healthcare professionals that support patients with GI cancers and discuss the role of the coalition’s new advisory committee.
Craig Lustig and Martha Raymond discuss the global vision of the GI Cancers Alliance and highlight the types of members who help to form its growing coalition of support provided to those affected by a gastrointestinal cancer.
Reflecting back on what he learned as a caregiver for his son, Tom Stockwell discusses how he provides assistance to others as a patient navigator for the Fibrolamellar Cancer Foundation. Stockwell further explains why advocacy and research are so important in rare diseases.
Tom Stockwell, whose son was diagnosed with advanced fibrolamellar hepatocellular carcinoma, and John Hopper, president of the Fibrolamellar Cancer Foundation and co-chair of the GI Cancers Alliance, remark on the importance of taking a proactive role when making treatment decisions with healthcare professionals and emphasize the value in establishing a survivorship care plan.
Tom Stockwell explains how he found information and resources following the diagnosis of his son’s advanced fibrolamellar hepatocellular carcinoma, an ultra-rare liver cancer.
In this CURE Connections® program, Philippa Cheetham, MD, interviews key thought leaders of the GI Cancers Alliance, a coalition of organizations that have joined together to raise awareness, provide education, and accelerate the research and development of treatments in the area of gastrointestinal cancers. Craig Lustig (The Ruesch Center for the Cure of GI Cancers), Martha Raymond (Michael’s Mission, The Raymond Foundation), and John Hopper (Fibrolamellar Cancer Foundation) highlight services and resources that are provided through the alliance to help patients and loved ones better navigate through gastrointestinal cancer.
In this special CURE Connections® program, broadcast live at The Ruesch Center for the Cure of GI Cancers, Philippa Cheetham, MD, Martha Raymond (Michael’s Mission, The Raymond Foundation), Craig Lustig (The Ruesch Center for the Cure of GI Cancers), and Paula Rothenberg (Hope Connections for Cancer Support) discuss results of a brief survey, conducted by the GI Cancers Alliance, that have helped advocates to better understand the unmet needs of gastrointestinal cancer patients and survivors. The panelists highlight some of the most critical issues that need to be addressed, and remark on the importance of establishing survivorship-care plans that are unique to the patient. Members of the audience also have an opportunity to share personal encounters, provide insight, and ask questions to the expert panelists.

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