Twenty years ago, the Cholangiocarcinoma Foundation began not as an organization but as a family’s response to silence.
In October 2005, my brother Mark was diagnosed with cholangiocarcinoma, a rare and aggressive cancer of the bile duct, at just 38 years old. Like so many families facing a rare cancer, we quickly learned how little information existed, how few effective treatment options were available and how isolating the journey could be. In the 15 months between Mark’s diagnosis and his passing, our family became caregivers, advocates and researchers out of necessity.
Before he died, Mark made one simple request with a strong vision behind it: Do something with what you’ve learned. That promise became the Cholangiocarcinoma Foundation, dedicated to advocating for patients and families, advancing research, developing resources, and making connections that help the journey feel less isolating.
As we enter our 20th year, I am filled with gratitude for the community that has grown from Mark’s vision and with clarity about what comes next. What began as a family’s determination has become a global movement grounded in believing that strength in community fuels hope in research.
Over the past two decades, we have seen what happens when collaboration replaces isolation and when funding meets scientific potential. In the last three years alone, seven treatments have received FDA approval for biliary tract cancers, progress that once felt unimaginable. This past year, the Cholangiocarcinoma Foundation awarded 11 $85,000 grants to early-career investigators, helping launch innovative ideas and attract new scientific talent to this field. Global partnerships with researchers, clinicians and industry leaders are accelerating discoveries in diagnostics, treatment and early detection.
These advances did not happen by chance. They happened because patients shared their data and experiences, caregivers raised their voices, researchers pursued bold ideas and supporters chose to invest even when the disease was rare and the path uncertain.
But we are not at the finish line; research is still our future. It is how we move from awareness to action, from questions to answers and from devastating diagnoses to real options. And in our 20th year, the need for bold, sustained investment in research has never been more urgent.
Cholangiocarcinoma remains aggressive and is often diagnosed late. Too many patients still face limited options, and too many promising ideas remain underfunded. If we want to shorten the distance between discovery and a cure, we need to accelerate progress. This moment calls for courage from all of us who believe rare cancers deserve urgency.
February is Cholangiocarcinoma Awareness Month, a time to shine a light on this disease and the people it affects. Every conversation started, every resource shared and every building greenlit create space for research to advance and for patients to be seen sooner. This Awareness Month, in our 20th year, we recommit to promoting critical research, strengthening global collaboration and ensuring that reliable, accessible information reaches every family facing this disease. We recommit to advocating for patient-first clinical trials, increased research funding and innovation. With this community, nothing is impossible.
Mark’s story is why we began. The thousands of patients and families we serve today are why we continue. Together, through investing in research and building a stronger community, we can change the future.