Your
Team
Patient-led. Built on lived experience.
Patient-led. Built on lived experience.
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
Partient Survivor
Gold Coast, QLD
Claire Holmes
Co-Founder – Chief Of Operations
Steve’s Caregiver
Gold Coast, QLD
Brief + Position Statement
Claire Holmes
Director of Operations | Cholangiocarcinoma Foundation Australia
Primary caregiver throughout Steve Holmes’ late-stage cholangiocarcinoma diagnosis, recurrence, and survival journey under the cornerstone clinical trial KEYNOTE-158.
Co-Founder, Cholangiocarcinoma Foundation Australia
Co-Founder, Cholangiocarcinoma New Zealand Foundation
Keeping cancer patients’ options open.
Claire’s lived experience navigating aggressive cancer from the caregiver position exposed the fragmentation, pressure, and complexity patients and families face when understanding comes too late.
That experience became part of the foundation for building patient-led survival systems focused on earlier understanding, navigation, response, and execution.
When Steve’s condition progressed to stage 4, Claire became a central operational force behind his survival response:
coordinating care, maintaining records, researching treatment pathways, navigating clinical complexity, and helping drive critical decisions under immense pressure.
That distinction is where survival is decided.
Through Cholangiocarcinoma Foundation Australia, Claire focuses on patient navigation, operational coordination, caregiver support, and translating lived experience into practical systems that help patients and families respond before options close.
Together, this contributes to an integrated end-to-end patient-led survival ecosystem designed to strengthen understanding, reduce overwhelm, and improve patient response.
What We Do Is Not Advocacy
It is the execution of Today’s Patient Survival, Today.
That is the responsibility we carry.
That is patient-led. Built from lived experience.
We prioritise execution over the optics of advocacy.
Key Areas of Focus
- Patient navigation and support
- Caregiver understanding and empowerment
- Light Australia Green
- Co-Architect, For The Love Of | Pathway for those left behind
- Operational coordination
- Earlier patient response
- Lived-experience systems integration
- Reducing confusion through structure and process
- Integrated patient-led survival systems
System Work and Contributions
- Co-Founder, Cholangiocarcinoma Foundation Australia
- Co-Founder, Cholangiocarcinoma New Zealand Foundation
- Co-Founder, Light Australia Green
- Co-Founder, For The Love Of | Pathway for those left behind
- Director of Operations focused on patient support and system coordination
- Central operational role throughout Steve Holmes’ late-stage survival response and recovery
- Contributor to patient-led navigation systems and caregiver support frameworks
Beyond Survival Comes the Responsibility to Thrive
Life is for play, for exploring, and for laughter beyond the tears.
Sometimes we only see the tears,
but beyond them there is still life to live,
people to love,
places to go,
and moments still waiting to be shared.
We sometimes forget that.
Claire
Jill Brown
Director Projects & Advocacy
Caregiver to daughter Catie (RIP)
Malua Bay, NSW
Brief + Position Statement
Jill Brown
Director of Projects and Advocacy | Cholangiocarcinoma Foundation Australia
After losing her daughter Catie to cholangiocarcinoma at just 22 years of age, Jill Brown transformed profound personal loss into ongoing action for patients and families facing one of the most aggressive cancers. Continue to Jills story
Keeping cancer patients’ options open.
Jill’s lived experience exposed the emotional, practical, and systemic challenges families face when understanding, support, and direction arrive too late.
That experience became part of the Foundation’s patient-led response culture:
helping families feel less isolated, strengthening community connection, and creating pathways for people navigating grief, advocacy, and survival.
That distinction is where survival is decided.
Through Cholangiocarcinoma Foundation Australia, Jill focuses on project coordination, advocacy, social connection, caregiver support, and helping families stay connected to community during and beyond diagnosis.
Jill was instrumental in launching Light Australia Green and helping build For The Love Of, a pathway for those left behind after losing someone to cholangiocarcinoma.
Together, this contributes to an integrated end-to-end patient-led survival ecosystem designed to strengthen understanding, reduce isolation, and improve patient and caregiver response.
What We Do Is Not Advocacy
It is the execution of Today’s Patient Survival, Today.
That is the responsibility we carry.
That is patient-led. Built from lived experience.
We prioritise execution over the optics of advocacy.
Key Areas of Focus
- Patient and caregiver support
- Community connection and engagement
- Light Australia Green
- For The Love Of | Pathway for those left behind
- Project coordination
- Advocacy and awareness initiatives
- Reducing isolation through lived-experience support
- Integrated patient-led survival systems
System Work and Contributions
- Director of Projects and Advocacy, Cholangiocarcinoma Foundation Australia
- Instrumental in launching Light Australia Green
- Architect, For The Love Of | Pathway for those left behind
- Ongoing contributor to patient and caregiver support initiatives
- Community engagement and social media coordination
- Advocate for families affected by cholangiocarcinoma
Beyond Survival Comes the Responsibility to Thrive
Even after loss, life still asks us to keep moving forward.
To keep loving,
keep giving,
and keep finding ways to help others through what we once thought impossible to survive.
Sometimes the greatest strength comes not from what we carry for ourselves,
but from what we continue to carry for others.
Jill
OPERATIONS
Volunteers
Lily Tao
AI Systems, IT
Sydney NSW
William Taing
Director of Strategy
Sydney, NSW
Georgia Holmes
Director of Operations
Gold Coast, QLD
INTERNATIONAL
Volunteers
Prof Steven West
USA Communications
Patient Navigator and Survivor
Oklahoma, USA
Prof Steven West
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
Role: NZ Communications
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 Claire 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 Claire. 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
