In 1989, Lynn and David Frohnmayer founded the Fanconi Anemia Research Fund (FARF), determined and desperate to find a cure for their three daughters diagnosed with Fanconi anemia (FA). Since then, their vision has grown into a vibrant community of FA families, researchers, clinicians, donors, fundraisers, staff, and volunteers, all dedicated to improving outcomes for people with FA.
Together, we’ve achieved remarkable milestones. Life expectancy for individuals with FA has more than doubled (!), and advancements in cell transplant procedures, driven by research supported by FARF, have transformed outcomes. Through our collective efforts, we’ve identified 23 FA genes, including the pivotal breast cancer genes, BRCA1 and BRCA2, linking our rare disease to broader cancer research.
Amidst our successes in addressing bone marrow failure, we recognize a sobering reality: FA is not just a blood disorder, but a cancer susceptibility syndrome. Faulty DNA repair due to FA mutations significantly elevates the risk of cancer, emerging as the most pressing challenge facing the FA community.
Acknowledging this evolving landscape, we are proud to unveil the next era of our organization: The Fanconi Cancer Foundation (FCF).
Photo: members of FCF leadership groups, the Board of Directors, Scientific Advisory Board, and FA Adult Council
“While the name of the disease remains unchanged, our approach must align with the most pressing challenges faced by the community living with it,” explains Isis Sroka, PhD, Chief Scientific Officer at FCF. “As the leading foundation dedicated to supporting research on this disease, we must intensify our focus on the urgent and currently unsolved problem of cancer to discover solutions.”
While our commitment to the FA community remains unwavering, our name change reflects a strategic increased focus on combating cancer within our community. The Fanconi Cancer Foundation is dedicated to preventing, detecting, and treating cancer in individuals with FA, recognizing that understanding FA-associated cancers can inform cancer treatment beyond our immediate community.
Our expanded mission does not diminish our dedication to addressing other facets of FA. FCF will continue to provide vital resources, education, and support, while deepening our understanding of the complexities of FA, including bone marrow failure, FA Neurological Syndrome, mental health, well-being, and other FA-related issues.
Central to our strategy is the cultivation of innovative partnerships. By collaborating with leading physician-scientists, industry partners, fellow patient-driven organizations, and funders, we aim to accelerate cancer research and ultimately transform outcomes for individuals with FA.
At the heart of our mission is community. It is our collective resolve, fueled by your unwavering support, that propels us forward.
We are immensely grateful for your enduring support, spanning the past, shaping our present, and guiding us toward a future in which everyone affected by FA lives a full life.
Join us as we embark on this new era with renewed energy and purpose.
