By Steve Holmes 
Stage 4 Patient Survivor

In order to succeed over cancer, we must first learn to understand it. By breaking it into smaller, simpler pieces, we remove its complexities and the fear it creates. This better equips and empowers patients to more effectively understand, engage with, and respond from the moment of diagnosis—this is how we improve survival outcomes. – Steve 

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If we—the patients and caregivers of cholangiocarcinoma—do not lead, nothing will be done.

On Tuesday, January 28th, something significant happened. The Cholangiocarcinoma Foundation Australia, led by patients and caregivers, stood alongside Australia’s and the world’s leading experts in cholangiocarcinoma for a landmark webinar—one designed to inform and educate Australian medical professionals:

“Cholangiocarcinoma Data and Standardisation of Australian Treatment Pathways.”

This wasn’t just another discussion. It was a call to action.
A defining moment where patients didn’t just listen—we led.

With a world-class lineup featuring:
Prof. David Thomas (Founder and Chief Strategy Officer, Omico)
Prof. John Zalcberg (Head of Cancer Research Program, Monash University)
Prof. Juan Valle (Chief Medical Officer, Cholangiocarcinoma Foundation USA)

They addressed Australian clinicians, scientists, allied health professionals, and industry experts.

This was, without question, the largest event ever for Australian clinicians treating cholangiocarcinoma patients. A moment that brought together healthcare professionals, researchers, and industry leaders.

The webinar explored:

✔️ The benefits of comprehensive genomic profiling
✔️ Potential clinical trial matching
✔️ Standardising treatment pathways in Australia
✔️ What lies beyond Cis-Gem Durvalumab for advanced biliary tract cancers

The webinar recording will be out the first week of February.

But beyond the research and insights, this event demonstrated something even more powerful:

The Message I Sent to Our Webinar Team One Hour Before We Went Live

An extraordinary team thrown together by cancer—if only it had known!

We have planned. We have prepared. We are ready. We can only do our best—and no more than that. But what you have all given of yourselves is nothing short of remarkable and deeply uplifting to Claire and me. That a group of patients and caregivers could come together to deliver such an inspiring and professional initiative is truly extraordinary. Thank you.

I believe great transformative change is born of great need. We have all been in that darkest of places—where you find yourself, and where need clarifies what must be done. When we fuel that need with an unrestrained will to do what is right, no matter the obstacles, no matter the resistance—and what others thought impossible—we can do magic.

Today marks a line in the sand for doing what is right for cholangiocarcinoma patients and our community. I hope this sends a message to the broader cancer world. I hope we do magic. That’s the true taste of change.

Thank you,
Steve and Claire

A Monumental Achievement for Cholangiocarcinoma and Beyond

What happened wasn’t just a success for cholangiocarcinoma.
It was a success for all bile-related cancers and for the patient-led research and advocacy initiative we are building.

Too often, patient and caregiver organisations exist at the political level—detached from those they claim to represent.
Meanwhile, the very people they serve remain fragmented, unheard, powerless—divided by bureaucracy, lacking a unifying force at the coalface of this battle.

We Are Changing That.

We are making patients impossible to ignore.

We are not just a patient and caregiver-led movement—we are a patient-led research and advocacy initiative working to contribute at every level of this cancer challenge.

Make no mistake: Our mission is not just to be heard, but to lead and initiate real change.

We are professionalising patients and caregivers in this space—not just to gain attention, but to build a meaningful following that drives one singular outcome:

And Make No Mistake—We Don’t Lead with Complaints.

We lead with solutions. That is the difference.

On Tuesday, February 28th, our webinar team didn’t just represent us.
They led.
They set the standard.
And for that, we should all be proud and grateful.

Our Approach Is Different.

We are not here to be seen.
We are here to lead—to activate change that enhances survival.
To bring the expertise earned through our own battles.
To fight for you—the patients of today, not tomorrow.

This is how we gain the right kind of attention.
This is how we drive a singular mission:

To Ensure Today’s Patients Benefit From Today’s Cutting-Edge Knowledge and Advancements—Today.

✔ The adoption of medical advancements
✔ Innovative implementation methods
✔ Best practices that benefit today’s patients—today.

That is our focus.
That is how we lead.
That is how we make the impossible, inevitable.

This Is Where We Need You.

Claire and I have funded this initiative form our own pocket from day one.
We receive no government support—every initiative, every breakthrough, every fight has been driven by us and by this community.

We’ve done it because it needed to be done. Because if we—the patients and caregivers of cholangiocarcinoma—do not lead, nothing will be done.

But we can not continue to do this on our own, especially if we are to continue these positive inroads and, to push further, to scale our research and advocacy, to continue embedding the patient voice where it matters most—we really do need your help.

Your support directly fuels:
The Optimal Patient Response Initiative (OPR) – Educating and equipping patients during diagnosis to improve survival rates.
Research into toxic bile as a root cause of cancer – Advancing prevention and early detection strategies.
Advocacy efforts – Ensuring cholangiocarcinoma patients are heard, represented, and empowered at every level.

Ways You Can Support This Movement:

  • Make a donation – Every contribution fuels patient-led research and advocacy.
  • Fund a research initiative – Create a lasting legacy by naming or co-sponsoring a project.
  • Get involved – Join us in driving real, patient-led change.
  • To express interest or discuss: Contact Claire claire@cholangio.org, or jill@cholangio.org 

This is not just about funding.
This is about action.
This is about survival.

If you believe in this mission, stand with us.
Because this is how we make the impossible, inevitable.

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