Founder & CEO Profile
Steve Holmes
Steve Holmes, CEO of Cholangiocarcinoma Foundation Australia, leads patient-led survival systems that improve cholangiocarcinoma response, navigation, and earlier patient action.
Founder and CEO
Steve is Founder and CEO of Cholangiocarcinoma Foundation Australia, a patient-led organisation helping people diagnosed with bile duct cancer, also known as cholangiocarcinoma, understand earlier, avoid preventable mistakes, and keep survival options open while they still exist.
His role spans leadership, strategy, patient response, biological intelligence, and execution. The purpose is clear: build systems that help patients and families move from confusion to action before critical opportunities close.
Steve is also a late-stage cholangiocarcinoma survivor who achieved a complete response through the KEYNOTE-158 clinical trial after reaching a stage four metastatic setting. That lived experience became the foundation for his work: improving today’s patient survival by turning understanding into earlier action, better decisions, stronger responses, and more opportunities for survival.
Leadership Stack
Steve’s work is built across four connected layers:
Biological intelligence explains what is driving the disease.
Patient response turns that understanding into better decisions.
Community execution makes sure the knowledge reaches patients in time.
The Cure Is In The Cause moves the work upstream toward prevention, earlier intervention, and better survival.
This is the operating model behind his leadership.
Role at the Foundation
As Founder and CEO, Steve leads the Foundation’s strategic direction, patient response frameworks, community culture, and survival-focused programs.
His work centres on turning complex cancer information into practical understanding that patients, caregivers, and clinicians can use earlier in the disease pathway.
This includes patient navigation, genomic profiling awareness, second opinion pathways, patient-led education, community response systems, and biological mapping of cholangiocarcinoma and related bile-driven cancers.
The Foundation’s work is built around one practical truth:
When understanding comes too late, patients lose options.
When understanding comes earlier, survival options can be preserved.
Patient-Led Survival Systems
The Foundation’s patient-led survival systems connect biological intelligence, patient response, and community execution.
Through Cholangio.org, Steve focuses on biological intelligence: mapping the biological sequence from cause to disease progression, and translating the relationship between biology, physiology, and patient decision-making into clearer understanding.
Through the Foundation, he builds patient response systems focused on navigation, genomic understanding, second opinions, process-led decision-making, and earlier patient action.
Through community execution, the Foundation turns lived experience into a culture that functions as a survival system.
Patients, caregivers, mentors, clinicians, researchers, and supporters are organised around one purpose: helping today’s patients understand earlier, avoid preventable mistakes, keep options open, and act before critical opportunities close.
Together, these layers create an end-to-end response model designed to help patients move from diagnosis to action before options are lost.
The Cure Is In The Cause
The Cure Is In The Cause is the upstream layer of Steve’s leadership work.
It turns biological understanding into prevention, earlier intervention, and better response.
It asks one core question:
What biological sequence made this disease possible, and where did that sequence fail?
The operating principle is simple: map the sequence, find where biology fails, and turn that understanding into earlier patient action.
Where the sequence fails, the cause is revealed.
Where the cause is understood, prevention, response, and survival can improve.
This is why Steve’s leadership connects biology, patient response, and community execution. The goal is not only to help patients respond better after diagnosis, but to move upstream toward earlier detection, prevention, and cause-led intervention.
Why This Work Matters
Cholangiocarcinoma moves fast, is often diagnosed late, and remains poorly understood by many patients at the point where decisions matter most.
A newly diagnosed patient does not know what they do not know.
Yet they must.
And as quickly as possible.
Steve’s work is designed to close that gap.
The aim is to help patients understand what matters now, what comes next, which mistakes to avoid, and which questions may preserve treatment opportunities.
This is not traditional advocacy.
It is the execution of Today’s Patient Survival, Today.
System Work and Contributions
Steve’s work includes leadership and contribution across patient response, cholangiocarcinoma education, biological mapping, clinical guideline development, and international collaboration.
- Co-Founder and CEO, Cholangiocarcinoma Foundation Australia.
- Founder, Cholangio.org.
- Architect of the OPR operating framework for cholangiocarcinoma and related GI cancers.
(OPR = Optimal Patient Response) - Co-author, Australian Clinical Guidelines for Cholangiocarcinoma.
- Contributor to patient response frameworks, genomic profiling initiatives, and clinical education resources.
- Advisory and member roles across global cholangiocarcinoma alliances, research prioritisation, early access funding, and patient-led cancer response initiatives.
- Author, The Book of Cholangio.
- Author, Patient Navigator Series
Related Foundation Work
Learn more about the Foundation’s patient-led response work through the following pages:
