Fibrolamellar hepatocarcinoma.
The Chan Zuckerberg Initiative (CZI) has chosen the Fibrolamellar Cancer Foundation (FCF) to join a select group of organizations fighting rare diseases as part of its Rare As One Network. UCSF oncologist, John Gordan, MD, PhD, will co-lead the rare-cancers initiative in partnership with the FCF.
CZI, founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015, is committing $13.5 million to its Rare As One Project to support and lift up the work patient communities are doing to accelerate research and drive progress in the fight against rare diseases, like fibrolamellar carcinoma (FLC). Fibrolamellar is an aggressive ultra-rare liver cancer affecting children and young adults, with no effective therapies. Patients with FLC typically do not survive longer than five years.
“No one is more committed to finding cures for rare diseases than the patients and families of those affected by these disorders,” said Priscilla Chan, Co-Founder & Co-CEO of CZI. “We are proud to support patient-led organizations as they pursue diagnoses, information, and treatment options in partnership with researchers and clinicians.”
“Our Foundation has grown tremendously over the past 10 years since it was founded by my son Tucker, before he lost his battle with this cancer,” said Marna Davis, Co-Chairman of FCF. “We’re confident that the CZI partnership will spread awareness and help FCF continue to pursue our mission of finding a cure for this disease.”
John Hopper, FCF President noted, “Recognition and partnership with CZI is an enormous game changer for the children and young adults fighting rare cancers, such as fibrolamellar, which are too often overlooked. CZI’s support will bring much needed global awareness of FLC, and significantly increase the power our patients will have to influence research across academia, industry and government. Our hope is this will accelerate discovery of curative therapies, which currently do not exist, giving our young cancer fighters a better chance to live, which they deserve.”
Gordan, an assistant professor in UCSF’s Division of Hematology-Oncology, has helped establish UCSF as a leader in fibrolamellar liver cancer research and related clinical trials. His work uses proteomics to find drug targets in fibrolamellar cancer based on its unusual genetics.
“This support from CZI is builds a bridge between the clinical and laboratory work here and the young patients with this cancer, most of whom are under 30, connecting them with doctors, research and a patient community.”
About the Fibrolamellar Cancer Foundation:
The Fibrolamellar Cancer Foundation, Inc. (FCF) was founded in 2009 by Tucker Davis and his close friends when he was diagnosed with fibrolamellar carcinoma (FLC). The purpose of the foundation is to help find a cure and treatment options for this often fatal disease, raise awareness, and connect and support the fibrolamellar community of patients and their families. 100% of net donations go towards research. For more information, please visit www.fibrofoundation.org
About the Chan Zuckerberg Initiative:
Founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015, the Chan Zuckerberg Initiative (CZI) is a new kind of philanthropy that’s leveraging technology to help solve some of the world’s toughest challenges — from eradicating disease, to improving education, to reforming the criminal justice system. Across three core Initiative focus areas of Science, Education, and Justice & Opportunity, we’re pairing engineering with grant-making, impact investing, and policy and advocacy work to help build an inclusive, just and healthy future for everyone. For more information, please visit www.chanzuckerberg.com.