Our
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Patient and Caregiver Led: Patient-Centric
Patient and Caregiver Led: Patient-Centric
The Cholangiocarcinoma Foundation Australia, a Patient-Led Solution: Empower the Patient- Increase Survival; Empower Their Supporter Community – Exponentially Increase Survivability. Is this to Simplistic?
LEADERSHIP
Steve Holmes
Co-Founder – Chief Executive
Systems Architect and Survivor
Gold Coast, QLD
Bio + Position Statement
Steve Holmes
(Stephen A. Gamble-Holmes)
Co-Founder and CEO,
Late-stage IV cholangiocarcinoma survivor
Architect and systemiser of patient culture, patient navigation, and root cause
Steve is a rare survivor of late-stage IV cholangiocarcinoma, achieving a complete response from a position where no survival had been documented. His vantage is lived and engineered, forged on the battlefield where survival is decided in real time. From that position, he transforms a community of individual patients and caregivers into a unified force whose culture becomes a survival system in itself.
Roles & Collaborations
- Co-Founder and CEO, Cholangiocarcinoma Foundation Australia
- Advisory Member, Global Oncology Patient Advisory Council (All Cancers)
- Advisory Member, Global Cholangiocarcinoma Alliance
- Member, Australian Bridging Funding Coalition
- Member, Omico Patient Advisory Group (CGP)
- Co-Author, BTC Registry Manuscript (2025)
- Contributing Author, Biliary Cancer Optimal Care Pathway (2025)
Why His Expertise Matters
Steve sees patterns no clinic, dataset or institution is structurally capable of producing the collapse before the tumour appears, the blind spots the system cannot yet articulate, and the conditions for prevention long before they become visible. Experience became expertise. Expertise became a system. What he systemises becomes the architecture that patients learn to operate.
He works at the intersection of ideology, physiology and biology, where cognition under pressure determines outcomes. Clinicians treat what is in front of them; they do not treat the root cause. When the metabolic engine fails, recurrence is never prevented.
Focus
Steve coined the focus phrase
“The cure is in the cause.” Find the root cause, begin there.
His work centres on patient-led culture, navigation systemisation, survival frameworks, and pinpointing the root cause failures in the biliary system’s metabolic engine, the origin point of every downstream collapse.
Understanding this engine is the beginning of prevention and response.
Media Bio
Media Briefing – Steve Holmes
Steve Holmes, 65, is the Founder and CEO of the Cholangiocarcinoma Foundation Australia and a survivor of late-stage extrahepatic distal cholangiocarcinoma — a rare and aggressive form of bile duct cancer with no curative treatment options and among the poorest survival rates of any cancer.
In July 2017, facing a late-stage diagnosis and just weeks to live, Steve was offered a newly approved clinical trial option. He experienced a rapid and complete response. Eight years later, he continues to lead the Foundation’s national strategy to redefine how Australians diagnosed with cholangiocarcinoma can respond more effectively in real time — with greater access, clarity, and support.
Motivated by the lack of resources available when he and his late younger brother Graeme were diagnosed, Steve and his wife Claire established the patient-led Cholangiocarcinoma Foundation Australia in 2018 — to empower patients, connect families, increase access to new treatment options, and drive survival-focused innovation through lived experience and system-level response.
Through his own lived experience, Steve brings unique insight and perspective to the challenges faced by Australians with rare and complex cancers. He remains committed to helping patients take an active role in their care — and is proud to see regional patients like Wayne now accessing potentially life-extending clinical trials.
In 2024, Steve cycled more than 14,000 km on Gold Coast roads — the equivalent of circumnavigating Australia — to raise funds for Patient Navigator Journals, a tool he designed to help newly diagnosed patients take control of their response from day one.
Strategic Contributions and Innovation Leadership
- Collaborator
- Global Research Priorities Group Member — ICRN & Precision-BTC Network (Salt Lake City 2025)
- Optimal Care Pathway for People with Bile Duct Cancer — Cancer Australia / NCERG
- National Guidelines Co-Developer — Multi-stakeholder clinical and patient care working groups
- Scientific Research Collaborations
- Contributor to translational research and real-world data initiatives in bile-related cancers
- System Innovation
- Creator of Patient Response Units (PRUs) — Structured, patient- and caregiver-led task teams closing critical gaps in today’s healthcare — today
- Program Creator / Author
- Patient Navigator Journal for Cholangiocarcinoma
- Framework Architect (In Development)
- How We Win: The Doctrines of Cancer — A strategic framework shaping patient-led survival systems and response culture
Claire Holmes
Co-Founder – Chief Of Operations
Systems Activation and Caregiver
Gold Coast, QLD
Brief + Position Statement
Brief Profile
Claire Holmes is Chief of Operations at Cholangiocarcinoma Foundation Australia, responsible for turning the Foundation’s architecture into coordinated national action. A former primary caregiver navigating two family diagnoses, Claire now leads operations across Australia and New Zealand, including Light Australia Green (LAGi), national patient gatherings, hospital-based symposia, community-driven fundraising and the mobilisation of Patient Response Units (PRUs). Her work builds the culture, coherence and execution required for real-time impact in patient survival.
“Everything we do must help today’s patient survive today, or we do not do it.”
Details
Phone: +61 431 180 783
Email: Claire@cholangio.org
Position Profile (Deep Dive)
Claire Holmes
Co-Founder and Chief of Operations
Caregiver to a Late-stage IV cholangiocarcinoma survivor
Co-lead, Light Australia Green (LAGi)
Claire is the operational backbone of the Foundation, the person who turns architecture into action and vision into systems that work. Where Steve builds the frameworks, Claire ensures they function in the real world, connecting patients, families, clinicians and communities through the machinery of coordinated effort.
Her role is grounded in lived experience. Two family diagnoses in close succession forced Claire into the centre of cholangiocarcinoma’s reality. As Steve entered stage 4 decline, Claire became his primary caregiver, navigating the clinical system with precision, discipline and unwavering attention to detail. Her records, research and coordination became a structural advantage in Steve’s survival. The clarity she brought to chaos now informs how the Foundation operates.
Today, Claire leads national operations across Australia and New Zealand and coordinates the Foundation’s international relationships. She runs Light Australia Green (LAGi), the umbrella for national awareness, patient connection and community-driven collaboration. LAGi includes hospital-hosted symposia, community gatherings, patient catch-ups across major cities, landmark lighting for World Cholangiocarcinoma Day and the nationwide Cholangio Challengers initiative, empowering supporters to raise funds through events of every kind.
Claire also operationalises the Foundation’s Patient Response Units (PRUs) — specialised teams built from the real-world capabilities of patients and caregivers. PRUs fill system gaps, strengthen navigation, improve engagement and support the survival response in real time. Claire recruits, coordinates and activates these units across national initiatives, ensuring the culture Steve designed becomes a functioning survival system in practice.
Claire’s work builds the culture that connects people. She turns strangers into community, community into momentum, and momentum into structure. She ensures patients do not face their diagnosis alone and that every initiative has the clarity, organisation and humanity required to move the needle.
Her contribution is operational excellence in service of survival. She is the force that ensures the Foundation functions where it matters, not in theory, but in practice.
OPERATIONS
Volunteers
Jill Brown
National Projects Coordinator
Malua Bay, NSW
Brief + Position Profile
Brief Profile
Jill Brown
National Projects Coordinator
Jill Brown is the Foundation’s National Projects Coordinator, responsible for delivering the initiatives that connect patients, families, communities, and partners across Australia. With a rare blend of compassion, discipline, and creative problem-solving, Jill plays a central role in coordinating national events, community engagement, Light Australia Green initiatives, digital communications, and project execution across multiple states.
Her strength is grounded in lived experience. Jill lost her daughter Catie to cholangiocarcinoma at just 22 years old, a loss no parent should endure. Catie, diagnosed at 21, refused to leave this world until she was capped in the nursing degree she had nearly finished. That moment defined Jill’s resolve. Instead of withdrawing, she stepped forward. She reached out to the Foundation, wanting to help ensure no family would face what hers had endured alone.
Jill now channels that strength, humour, and tenacity into national impact, helping build the connections, systems, and momentum that support patients and caregivers in real time.
Details
Malua Bay, NSW
Email: ___ (you provide)
Phone: ___ (you provide)
Position Profile
Jill Brown
National Projects Coordinator
Caregiver to a daughter lost to cholangiocarcinoma
Jill is the connective force behind many of the Foundation’s national initiatives — the person who turns intention into movement and movement into coordinated outcomes. Where Steve builds architecture, and Claire operationalises systems, Jill delivers the projects that make that system felt across the country.
Her vantage is lived and profound. Jill’s daughter, Catie, was diagnosed with cholangiocarcinoma at just 21 years old and passed at 22. Even in her final days, Catie’s determination remained unbroken — insisting on being capped for the nursing degree she had nearly completed. That resolve now mirrors Jill’s own: a commitment to give meaning to the unthinkable by helping others survive what her family could not.
Jill brings that strength into her role with clarity and purpose. She coordinates Light Australia Green (LAGi) on-the-ground activation, national and regional symposiums, community gatherings, digital media projects, and volunteer engagement. She ensures that every initiative — from landmark lighting to patient meet-ups — is delivered with empathy, precision and human connection.
Her work is defined by:
- meticulous organisation
- creative problem-solving
- humour and resilience under pressure
- an ability to bring people together
- a deep understanding of what families face
- a commitment to ensuring no caregiver is left isolated
Jill also supports the mobilisation of Patient Response Units (PRUs), working closely with Claire to deploy patient and caregiver capabilities into meaningful roles. Her presence strengthens the Foundation’s capacity to act at scale, with consistency and heart.
Jill’s contribution sits at the intersection of compassion, competence, and lived truth.
Her work ensures that the Foundation’s national presence is not just operational, but human, connected, and anchored in purpose.
She is one of the reasons the Foundation functions not only as an organisation, but as a community.
Dr Natalie Rickers
Director of Medical
Adelaide, SA
Natalie Rickers
Name: Natalie Rickers
Role: Molecular Genomics, Advisor & Advocacy
Organisation: Cholangiocarcinoma Foundation Australia
Professional Profile:
Natalie Rickers, with her robust background in biotechnology and molecular microbiology, serves as a volunteer Advisor for Molecular Genomics and Advocacy for Cholangiocarcinoma Foundation Australia. Natalie holds a PhD from Manchester University and has completed postdoctoral research in Switzerland. Over the last 18 years, she has excelled in the genetics and microbiome industry, notably spearheading initiatives that drove substantial growth and facilitated access to genetic testing on a global scale.
At Invitae, Natalie led a global sales team to achieve $11 million in annual revenue, reflecting triple-digit growth annually. Her role expanded to developing comprehensive marketing strategies for diverse markets such as Canada, LATAM, EMEA, and APAC. These strategies significantly improved healthcare access, particularly in the fields of women’s health, cardiology, neurology, oncology, and consumer markets.
Natalie’s professional path also includes impactful contributions to biopharma programs, national genomics initiatives, and the expansion of international distributor models. Her involvement with patient advocacy groups played a pivotal role in the expansion of Ciitizen in Australia, enhancing patient access to medical records and genomic data.
As of November 2023, she has been working with MTPConnect’s Adelaide Intermediary team as the Director of Commercialisation, where she focuses on developing the local ecosystem in South Australia.
Beyond her professional endeavours, Natalie is a passionate advocate for women in STEM, mentoring PhD students and supporting their transition into industry roles. She is an active member of the 2023 Women in Leadership Development Program and has successfully completed the Australian Institute of Company Directors Course.
Involvement in Cholangiocarcinoma Advocacy:
In her advisory role at Cholangiocarcinoma Foundation Australia, Natalie leverages her extensive expertise to lead projects that aim to transform patient outcomes through advanced genetic and genomic solutions. Her voice guides our discussions and presentations, providing a clear and authoritative perspective on how current scientific developments can be harnessed to support our community effectively. Her unique combination of professional expertise and personal experience as a caregiver enriches her advocacy, making her a pivotal figure in our mission to empower patients and expand survival.
Details
William Taing
Director of Strategy
Sydney, NSW
William Taing
Coming Soon
Georgia Holmes
Director of Operations
Gold Coast, QLD
Georgia Holmes
Georgia Bio and Profile – Coming Soon
INTERNATIONAL
Volunteers
Prof Steven West
USA Communications
Patient Navigator and Survivor
Oklahoma, USA
Steven West
Name: Steven West
Role: Director and Board Member
Organisation: Cholangiocarcinoma Foundation Australia
Professional Profile:
Steven West brings a wealth of expertise and experience to his role as a Director and Board Member of the Cholangiocarcinoma Foundation Australia. As a Professor of Professional Practice at Oklahoma State University, he is deeply entrenched in academia and possesses a robust network of global contacts that he leverages to benefit the foundation and its mission.
Revenue Management Expert:
With a specialisation in Revenue Management, Steven holds all appropriate designations and certifications in the field. His expertise goes beyond mere data analytics, delving into the intricacies of strategy development and implementation. Drawing from his extensive background in operations management at both property and corporate levels, Steven excels in refining revenue management into actionable strategies that yield significant bottom-line increases.
Consultation and Remote Work:
Steven is open to consultation and remote work opportunities, where he applies his skills in maximising revenue and optimising savings to deliver tangible results for clients.
Recruitment and International Programs:
In addition to his role as a professor, Steven actively engages in recruitment efforts for international students and oversees the J1 internship program at Oklahoma State University. His understanding of the J1 internship program and extensive network with international universities specializing in hospitality and culinary degrees have facilitated the recruitment and processing of over 300 international student interns. Steven offers valuable insights and support to property operators, assisting them in leveraging the benefits of international hospitality interns to enhance their operations.
Dual Citizenship and Global Mobility:
As a dual citizen of the United States and Australia, Steven possesses the unique advantage of freely living and working in both countries without sponsorship. Additionally, he holds EU work ability, further expanding his global mobility and professional reach.
Involvement in Cholangiocarcinoma Advocacy:
Steven is not only a professional in his field but also a cholangiocarcinoma patient himself. Despite his own battle with the disease, he remains actively involved in various roles and committees related to cholangiocarcinoma advocacy. His firsthand experience fuels his dedication to advancing research, raising awareness, and providing support to individuals affected by this disease.
With his diverse skill set, extensive network, and unwavering commitment to both professional excellence and cholangiocarcinoma advocacy, Steven West plays a pivotal role in advancing the mission of the Cholangiocarcinoma Foundation Australia and supporting individuals affected by cholangiocarcinoma.
Details
Mandy Wallace
NZ Communications
Patient Navigator and Survivor
Blenheim, NZ
Mandy Wallace
Name: Mandy Wallace
Role: NZ Communications
Organisation: Cholangiocarcinoma Foundation Australia
Professional Profile:
Founder of The Cholangiocarcinoma Foundation New Zealand and Director of Hydralift Crane Hire.
Connection to Cholangiocarcinoma:
11 Year survivor of Extrahepatic Cholangiocarcinoma.
Objectivity & Perception:
In 2012 Mandy faced the biggest challenge of her life. Upon receiving the diagnosis of CCA she was overwhelmed to discover that there was no information or support network to be found in New Zealand. Over the next 3 years she discovered the American foundation and became involved. She is a Patient Mentor for their CholangioConnect program and also for the NZ Cancer connect program and she overseas the running of the NZ Cholangiocarcinoma Foundation. She liaises with Steve and Claire and is proud to have Steve and Claire as Mentors as she endeavours to grow CCA NZ.
Action & Will:
In 2019 Mandy received a Scholarship to attend the Annual Conference in Salt Lake City. It was there that she meet Steve and Clair in person for the first time. The bond she felt with them was instant and it became clear to all of them that they needed to do more for the patients in their respective countries. Support groups and Facebook pages were started and this lead to the eventually forming of CCF AU and CCF NZ. Mandy’s goals are very much in-line with Steve and Claires. She understands the unique needs of a patient diagnosed with a rare cancer and the road blocks they will experience within the NZ health system. Mandy believes in the need to empower and support patients while they navigate their cancer journey.
What empowers you:
Mandy is empowered by the many people she connects with that are fighting for better outcomes for our patients. She is empowered in the knowledge that patients now have a support network and access to information through the work that is being done.
“Ehara taku toa i te toa takitahi, engari he toa takitini” – Success is not the work of an individual, but the work of many.
Details
- Phone: (064) 21 222 5211
- Email Mandy
