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Cholangiocarcinoma is formidable. So are we.
“To conquer cancer, we must first understand it.
Advocacy and the many charities that encircle it must be more than mere words—it must be a force forged at the forefront of this battle.
We are that force: Patient-led with hard-earned lived experience in cholangiocarcinoma. We empower and lead those who need us now, standing shoulder to shoulder with you in the trenches—lighting the path with our lived experience.
Cholangiocarcinoma requires more than treatment alone; it demands a structured, patient-centred response strategy and process.
We provide that process: Patient-led and results-driven, we act decisively. Less noise—more action—because that’s what a response to this cancer demands.
Our Guiding Light:
We Always Act In the Patient’s Best Interest.”
— Steve Holmes
We Connect:
- Patients with cholangiocarcinoma-current specific expertise, high-flow experience, and up-to-date knowledge.
- Clinicians and researchers to collaborate and bridge gaps caused by silos.
- Industry and government leaders to ensure active engagement at the frontline of our patient battle.
Our Key Initiatives Empowering a Better Response.
Without Innovation We Cannot Breakthrough. Good isn’t enough. We must be remarkable at what we do— because that’s what it takes.
Refining & Expanding OPR (Optimal Patient Response):
OPR is the backbone of our systems and processes—advancing how patients respond from the moment of diagnosis and beyond.
Navigator Journal Series:
The Patient Navigator Journal helps patients respond with clarity and confidence. It simplifies complexity and provides a clear, step-by-step roadmap—bridging science, medical care, and personal action.
Patient-Endorsed Medical Professionals Registry:
An AI-assisted system that accelerates access to clinicians with specific expertise and high-flow experience in cholangiocarcinoma.
Second Opinion Project:
A natural extension of our patient-endorsed registry, connecting patients directly to leading expertise and high-flow experience for second or third opinions—without pressure, delays, or barriers.
Next-Generation Sequencing (NGS) Integration:
Translating complex genomics into simplified, patient-friendly insights—making precision diagnostics and medicines more accessible, earlier in the journey.
Next Steps Program:
The first 30 minutes post-diagnosis can shape the next 72 hours. This program embeds patient navigation at the point of diagnosis to maximise early response capacity and engagement.
Patient & Caregiver Symposiums:
Creating space for shared learning and innovation between patients, clinicians, and researchers.
Research – Engineering the Optimal Cancer Pathway:
A published blueprint for increasing survival—designed to systemise and scale effective cancer response strategies.
University Scholarship Sponsorships:
Funding the next generation of cholangiocarcinoma researchers to carry this work forward.
By supporting these initiatives, you help engineer better outcomes and improve survival for cholangiocarcinoma patients.
Building a Movement: Awareness, Action & Impact
Transforming cancer response doesn’t happen in isolation—it happens through community, momentum, and collective action. Our initiatives don’t just raise funds; they ignite awareness, empower patients, and accelerate change.
Light Australia Green initiative (LAGi)
Illuminating Hope. Driving Awareness.
The Light Australia Green (LAGi) Initiative is a year-round national movement dedicated to raising awareness about bile-related cancers.
Throughout the year, LAGi engages communities through:
- Patient-Medical Symposiums: Connecting patients, healthcare professionals, and researchers to share stories, insights, and treatment advances.
- Major Awareness Events: Community gatherings, workshops, and campaigns promoting education and proactive health measures.
Culminating in World Cholangiocarcinoma Day—held annually on the third Thursday of February (next on 20 February 2025)—the campaign peaks with:
- Landmark Illuminations: Iconic structures across Australia lit in green to symbolise unity, remembrance, and hope.
By uniting patients, clinicians, researchers, and the public, LAGi fosters a national conversation that drives action, awareness, and support.
Cholangio Challengers
Turning Personal Stories into Collective Power
Cholangio Challengers is your personalised fundraising and awareness hub. It empowers patients, caregivers, families, and businesses to turn personal stories into powerful community-driven impact.
Get Started:
- Create Your Profile Page: Set up a personalised page to share your journey.
- Share Your Story: Inspire others through your experience and purpose.
- Involve Others: Invite friends, family, and colleagues to join the movement.
- Start or Support a Challenge: Whether it’s a marathon, walk, bake sale, or creative campaign—every effort helps raise funds and awareness.
- Easy to Use: Our platform offers seamless setup and social media integration to maximise your reach.
Need Assistance?
- Claire: 0415 153 522
- Jill: 0418 799 926
By joining Cholangio Challengers, you’re not just fundraising—you’re becoming part of a growing, impactful movement to improve outcomes for those affected by bile-related cancers.
The Remembrance Project
Honouring Legacy. Advancing Research.
The Remembrance Project ensures that every story lives on. By funding research scholarships for young scientists, this initiative honours the lives of patients and their families while fostering the next generation of leaders in bile-related cancer research.
Together, these initiatives create a living, growing movement—powered by purpose and united for impact.
Pronunciation
‘Chol‘ means Bile ➡ ‘angio‘ means vessel or ducts ➡ ‘carcinoma‘ means a cancer that originates in the protective layer that lines the ducts. (The Epithelial Layer). Therefore it is a cancer that originates in the protective lining of our bile ducts.
What is Cholangiocarcinoma
Bile duct cancer, or cholangiocarcinoma (CCA), forms in the inner protective lining of the bile ducts, known as the epithelial lining, which shields the ducts from toxic bile.
The liver produces bile, which helps digest fats. Bile ducts act like a network of pipes, collecting bile from the liver and transporting it to the duodenum, the first part of the small intestine.
Inside the liver, tiny ducts merge into two larger ducts that join just below the liver to form the common bile duct. A side branch, the cystic duct, leads to the gallbladder, a reservoir storing bile for release during fatty meals.
The common bile duct passes through the pancreas into the ampulla of Vater, where bile mixes with pancreatic enzymes before aiding digestion in the duodenum.
Bile is your body’s personal shipbuilder. It breaks down fat and shapes it into neat little vessels called micelles — ready to carry the fat-soluble vitamins A, D, E, and K (ADEK) that pancreatic enzymes have mined from the food we eat. Once fully loaded, these micelles are absorbed into the bloodstream and deliver their vital cargo to the liver and other essential organs. ADEK vitamins are foundational building blocks for healthy liver function — ensuring it can continue producing high-quality bile for optimal digestion.
Learn More About Cholangiocarcinoma
Why We Do What We Do
The Santaguida Family
Adrian has his A-Team—Andi (5) and Mum Elaine.
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Equip Yourself for Survival
There is nothing in life—or the science of life—that is not vulnerable to being knocked off its precarious pedestal of certainty. The only certainty is that there is no certainty—only obstacles and the possibilities they conceal.
Cancer is one such obstacle.
But it is not the end—it is a position, not a fate.
As Alfred D. Souza reflected:
“For a long time, it had seemed to me that life was about to begin—real life. But there was always some obstacle in the way… At last, it dawned on me that these obstacles were my life.”
Therefore, our opportunity begins when we pause to see the obstacle as it truly is—not as we fear it to be.
That is how we break down its reputational grip over our mind.
Only then do we begin to see the possibilities hidden within—our opportunity, our new way forward.
And so, the opportunity within life is to see the possibilities within the obstacles—and then set about making them our reality.
— Steve Holmes ‘Patient Diary’
Your support directly impacts patients, fuels research, and advances lifesaving change.
Ways You Can Help
➤ Make a direct (no-fee) donation
Support ongoing projects with 100% of your contribution going straight to impact.
Email Claire for bank details.
➤ Fund a specific research initiative
Back targeted projects focused on patient empowerment, early detection, and Optimal Patient Response (OPR) strategies.
Contact Claire for more information.
➤ Create a Lasting Legacy: Research Naming Opportunities
Families, businesses, or communities can secure exclusive or shared naming rights by funding a research project. Your contribution will be:
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Recognised – Public acknowledgment of your support
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Remembered – A legacy that honors your loved ones
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Transformative – Driving breakthroughs in prevention and early detection
To discuss legacy opportunities, contact Claire at Claire@cholangio.org or Jill at Jill@cholangio.org
Messages of Hope
“I cannot speak highly enough of the Patient Navigator Journal. I owe so much to the Cholangiocarcinoma Foundation Australia. The information and support I received were life-changing. When I experienced a recurrence, I knew exactly what steps to take because of the tools and knowledge Steve provided. Please support Cholangiocarcinoma Foundation Australia’s patient initiatives—I certainly do!”
— Lynette Williams, Survivor
Consider This
“Your greatest resource is yourself—and the lived experiences of those who came before you: a resource often overlooked in the chaos.
When diagnosed with cholangiocarcinoma, chaos quickly invades, and our steady thoughts are lost in its avalanche. It is then that we must quiet our minds and let the chaos slide by. We all have power over our minds—but not over outside events. While we cannot control the fact that we have cancer, we can control how we respond to it.
This is how we shift our perceptions and begin to see the possibilities—our opportunities within this obstacle of cancer. Step by step, we find our rhythm and sense of control. By focusing on each small step and doing it well, we methodically achieve what others thought impossible. In doing so, we gain fresh momentum—we gain control as hope finds its reality.” — Steve Holmes, Survivor
Bridging the Gaps: Collaborating to Enhance Patient Survival
We collaborate with medical professionals, researchers, and industry partners to accelerate progress and improve survival outcomes. While medical professionals excel at diagnosing, treating, and caring for patients, they may not always address the broader challenges a cancer diagnosis presents.
With our deep, lived experience and understanding of cholangiocarcinoma, we work to bridge these gaps by preparing and supporting patients as they navigate their diagnosis and prognosis. By aligning expertise across science, healthcare, and patient advocacy, we ensure comprehensive care that empowers patients and enhances their quality of life.
If you would like to collaborate or provide assistance, please familiarise yourself with our CCF Australia Introduction and Guide.
Cholangio Today
Big thinking & Big Innovations Drive Breakthroughs
Simplification Increases Understanding, Effective Engagement & Survival Opportunities.
Searching and Stimulating the Possibilities.
