Tuesday, Feb. 20, 2024 | 2 a.m.
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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 and advocacy. Ultimately, it led our family to found the Cholangiocarcinoma Foundation.
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, the Cholangiocarcinoma Foundation has worked toward 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 we have made significant strides thanks to the support of our growing community.
During the month of February, we observe Cholangiocarcinoma Awareness Month, which includes World Cholangiocarcinoma Day on Feb. 15. We celebrate progress, which looks like brilliant minds coming together to collaborate on better diagnostics, treatment options, early detection and cures. This past year, the Cholangiocarcinoma Foundation awarded 10 $50,000 grants to early-career investigators, fostering innovative research proposals.
The foundation’s collaborations with global health care institutions and industry leaders have been instrumental in accelerating this progress. Together, we’ve achieved six Food and Drug Administration approvals in the past 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.
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 one another through the Cholangiocarcinoma Foundation’s community, and their shared experiences help them become stronger. The funding our foundation 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.
Stacie Lindsey is a founding member of the Cholangiocarcinoma Foundation and has served on the board of directors since its inception. She wrote this for The Sacramento Bee.
