Today we’d like to introduce you to Stacie Lindsey.
Stacie, we appreciate you taking the time to share your story with us today. Where does your story begin?
In October of 2005, my family gathered together at our brother’s request. Mark and his wife, Marianne, expecting their fourth child a few weeks later, told us that he had been diagnosed with inoperable, incurable cancer. Stunned silence was immediately followed by confused tears.
When my husband and I got home that night, I immediately got on the computer and began what would become 15 months of intense research, networking, and soul-searching. My family made a plan. Mark would look after his well-being; Marianne would take care of their newborn son, Lucas, and their other three children: Patrick, Chase, and Tessa. My mother, father, two sisters, and I would divide and conquer everything else.
Those first weeks and months of research were heart-wrenching as I realized there wasn’t much information to be found. Some of the information was buried in PubMed, but I realized that if I wanted to understand what was there, I would have to learn a new language, so I learned it.
Bit by bit, information was cobbled together from the dozens and dozens of conversations I had with physicians across the country willing to hear our story and take a look at Mark’s medical records. Pieces of information and additional research from other patients were assessed and integrated where applicable. False hope and miracle cures abounded, but we were willing to look at everything without restriction.
We worked long hours trying to provide hope for Mark, his family, and ourselves. In the end, my family did not receive what it had hoped and worked for, but we did receive comfort in answer to prayer, clear direction from above, and abundant love from the many patients and friends we had connected with in the process.
As heart-wrenching as this journey was for us, we were determined that no one else should have to invest the time and effort we did to gather information and surround themselves with an empathetic community. Somehow, we would find a way to endow others with hope and support. Out of this desire came The Cholangiocarcinoma Foundation.
This Foundation was born out of love, and every hour that has gone into it has been volunteered by board members each one having lost a loved one to cholangiocarcinoma or suffering from cholangiocarcinoma and surviving. Many others have volunteered their time and energy to filling a need. Our vision for the foundation expands every day, it is our hope to find a cure and in the meantime to provide support, to advocate for patients and to educate those who do not yet understand.
We are honoring our 20th year of building strength in community and hope in research. CCF has brought together the world’s leading experts in cholangiocarcinoma (bile duct cancer) to collaborate on and fund vital research. CCF also provides one-on-one support to patients and their caregivers helping them navigate every step and get access to the necessary resources. Twenty years ago, there was no FDA-approved drugs for this cancer and now there are seven. We have come a long way and still have a ways to go. We will continue unti there is a cure.
Alright, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
It has not been a smooth road, but we have had committed community members helping us every step of the way. Over the past 20 years, the Cholangiocarcinoma Foundation has faced many of the challenges common to rare cancers, such as limited awareness, fragmented resources, underfunded research, and a geographically dispersed patient population often searching for information and connection during some of the most difficult moments of their lives. As scientific understanding of cholangiocarcinoma rapidly evolved, patients and caregivers also needed help navigating increasingly complex treatment options, biomarker testing, and clinical trials.
CCF helped meet these challenges by building a global community centered on education, research, advocacy, and hope. Through investments in research fellowships, scientific collaboration, patient support programs, conferences, regional events, and accessible educational resources, the organization has helped accelerate progress in the field while ensuring patients and families feel informed and connected. As the organization has grown, CCF has remained grounded in our mission.
Thanks – so what else should our readers know about your work and what you’re currently focused on?
We are a non-profit dedicated to funding research and providing patient and caregiver support for those facing cholangiocarcinoma, a rare and aggressive bile duct cancer. The organization began in the Salt Lake City area but to ensure we were accessing expertise from around the nation and globe, we operate virtually. Every year, we host an annual conference in Salt Lake City. An event at which researchers can share their work, patients and caregivers can meet each other and provide unparalleled support to one another, and clinicians and patients can interact directly, opening dialogue about treatment.
Do you have any memories from childhood that you can share with us?
My siblings are so important to me, and growing up with them provides so many beautiful memories. The Foundation was born out of my brother Mark’s vision, and seeing his legacy help others is meaningful.
Pricing:
- Please refer those you know facing this disease to curecca.org so they can connect with a Patient Advocate.
- Patient and caregiver support is free and we offer no-cost resources to clinicians.
Contact Info:
- Website: https://curecca.org
- Instagram: https://instagram.com/cholangiocarcinoma
- Facebook: https://facebook.com/cholangiocarcinoma
- LinkedIn: https://linkedin.com/company/cholangiocarcinoma-foundation/
- Twitter: https://x.com/curecc
- Youtube: https://youtube.com/@CholangiocarcinomaFoundation
- Other: https://tiktok.com/@cholangiocarcinoma
