Strength in Community, Hope in Research: Creating a World Free of Cholangiocarcinoma

In October of 2005, my brother, Mark, was diagnosed with cholangiocarcinoma, a rare and aggressive cancer of the bile duct, at the age of 38. This set me on a path of relentless research, advocacy, and our family founding the Cholangiocarcinoma Foundation (CCF). Mark’s diagnosis ignited a fire within us to ensure that no one else would have to endure the heart-wrenching journey we experienced in the short 15 months from his diagnosis to his passing.

The initial days of research were daunting. Little to no information was available, and the journey ahead seemed like an uphill battle. As one of Mark’s caregivers, I witnessed the struggles of patients and their families in the face of rare, aggressive cancers. It became evident that we needed more than just hope – we needed tangible support, advocacy, and, most importantly, increased research funding to uncover breakthroughs.

Mark’s last request to me was clear: do something with the wealth of information and resources we had gathered. Thus, the Cholangiocarcinoma Foundation was born from a shared determination to empower others facing this complex and often misunderstood disease.

For the past 17 years, CCF has worked towards its vision of finding a cure for cholangiocarcinoma while offering support, advocating for patients, and educating those unfamiliar with the challenges of this disease. The journey has been challenging, but thanks to the support of our growing community, we have made significant strides.

During February, we observe Cholangiocarcinoma Awareness Month, which includes World Cholangiocarcinoma Day on February 15. We will be celebrating progress, which looks like brilliant minds coming together to collaborate on better diagnostics, treatment options, early detection, and cures. This past year, CCF awarded ten $50,000 grants to early-career investigators, fostering innovative research proposals.

CCF’s collaborations with global healthcare institutions and industry leaders have been instrumental in accelerating this progress. Together, we’ve achieved six FDA approvals in the last three years, an unparalleled feat that speaks to the power of collective effort. Dr. Juan Valle, our first Chief Medical Officer, brings a wealth of knowledge and dedication to the Foundation’s work.

As we stand on the precipice of significant research opportunities and advancements in treatment options, awareness is more crucial than ever. A better understanding of the disease helps us to continue our mission to find a cure, improve patient care, advocate for flexible clinical trials, and secure funding for groundbreaking research. Many of you reading this now know someone who has been affected by cholangiocarcinoma. I invite you all to discuss it, share awareness, and help us influence positive change.

During Cholangiocarcinoma Awareness Month, we recognize the strength within our community and find hope in ongoing research. The theme of Strength in Community and Hope in Research resonates deeply as we unite against rare, aggressive cancers like cholangiocarcinoma. In the face of challenges, unity becomes our greatest asset. Patients and caregivers rely on each other through the CCF community, and their shared experiences help them become stronger. The funding CCF advocates for and provides to the research community fuels hope through continued advancements.

Together, we can turn the tide and bring hope to those who need it most. Let us join hands, hearts, and resources in this collective endeavor for a future free from the grip of cholangiocarcinoma. We invite you to join us at curecca.org.