CoLab Survivorship Reference Group launches with first meeting
For our youngest cancer survivors and their families, the end of treatment is just the beginning. A new Survivorship Reference Group led by Children’s Cancer CoLab is uniting diverse voices to ensure survivors don't just survive but thrive.
The CoLab Survivorship Reference Group held its inaugural meeting on 25 September 2025,bringing together individuals with lived experience of childhood and adolescent cancer, alongside national and international experts in survivorship care and research. Representatives from key charities and advocacy organisations, including Canteen, Redkite, and the Leukaemia Foundation, have also joined the group.
The CoLab Survivorship Reference Group will play a critical role in shaping the strategic direction and funding priorities for CoLab's Survivorship and Living Well Impact Program.
A/Prof Michelle Yong, CoLab Board Deputy Chair and Chair of the Survivorship Reference Group, explained the significance of including all perspectives in survivorship discussions.
“Never before has such a breadth of experience and perspective come together in one room, to deeply consider what survivorship really means, decades after the bellis rung signalling 'end of treatment.”
Conversations at the first meeting moved far beyond medical aspects to explore the often-unseen challenges of life after treatment: the emotional and psychological wounds that linger, the academic and vocational roadblocks, the financial burdens, and the social isolation that too often follows.
“As a parent of two survivors, I know that the end of treatment is just the beginning. The transition to our 'normal' life was met with unforeseen challenges. We had to learn how to navigate the education system, manage ongoing health needs, rebuild peer connections, and support each family member who bore their own scars from the cancer journey.”
A/Prof Yong said the group's first action would be to develop a collective position statement to drive forward a national agenda for survivorship care that recognises the need for holistic, lifelong support for every child and family after cancer.
“By keeping patient and family perspectives at the centre, the CoLab Survivorship Reference Group will help ensure survivorship is not only about recovery and survival, but about living well, for life.”
CoLab Survivorship Reference Group Members
- A/Prof Michelle Yong – Lived experience (parent) and Children’s Cancer CoLab Board of Directors Deputy Chair
- Trudy Marr – Lived experience (parent) based in regional Australia
- Dr Sheila Patel – Lived experience (parent) and Children’s Cancer CoLab Patient and Family Advisory Committee member
- Dr Kylie Mason – Lived experience (survivor) and Haematologist, Late Effects and Survivorship, Department of Haematology at Peter MacCallum Cancer Centre
- Prof Dr Martha Grootenhuis – Children’s Cancer CoLab Scientific Advisory Committee member and paediatric psycho-oncologist, Princess Máxima Center for Pediatric Oncology, the Netherlands
- Prof Roderick Skinner – Retired paediatric oncologist, Newcastle Hospitals NHS Foundation Trust, United Kingdom; Children and Young People Cancer Taskforce, UK
- Prof Natalie Bradford – Professor of Childhood Cancer, Cancer Council Queensland and Queensland University of Technology
- Prof Michael Jefford – Consultant Medical Oncologist and Director, Australian Cancer Survivorship Centre
- Prof Michael Sullivan – Paediatric oncologist and neuro-oncologist at Royal Children’s Hospital; SIOP-St Jude ARIA Global Childhood Cancer Guideline Collaboration
- Rhiannon Edge – Head of Insights and Impact, Redkite
- Emily Kovacev – Project and Advocacy Coordinator, Leukaemia Foundation
- Megan Baiocchi – Head of Youth Cancer Services initiative, Canteen Australia
- Dr Udani Reets – CEO, Children’s Cancer CoLab
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