Consumer Advisory Panel
The ANZSA’s Consumer Advisory Panel (CAP) was formed to give a strong voice to consumers within the sarcoma community, as it recognises the value and importance of consumer input in sarcoma clinical trials.
Chaired by ANZSA Board Director, Sarah Cheung, the CAP plays an integral role in supporting, mentoring, advocating and training to the sarcoma community through its committee and consumer advocates.
Key responsibilities of ANZSA’s CAP include:
- Assessing the relevance of new clinical trial concepts and protocols under the consideration of the ANZSA’s SAC.
- Reviewing Patient Information Sheet and Consent Forms.
- Advising on patient recruitment strategies.
- Increasing the awareness of ANZSA and sarcoma research.
- Advocating for sarcoma research funding.
Sarah joined ANZSA as a consumer representative in April 2022. She had been diagnosed with Retroperitoneal Liposarcoma in early 2021.
Sarah is passionate about raising Sarcoma awareness and helping to provide relevant and trustworthy information to patients, carers and survivors. She also hopes that there is better equality and uniformity with the level of care provided to Sarcoma patients who come from indigenous, ethnic minority and regional backgrounds.
Sarah is a chartered accountant and has moved on to working in IT in recent years. Outside of work, she enjoys watercolour painting and spending time with her family.
Karen joined the ANZSA CAP as a member in July 2020. She had liposarcoma diagnosed and treated in 2017. You can read her story here.
Karen is passionate about supporting ANZSA sarcoma awareness and education and giving a survivors perspective to assist the medical community and consumers (including patients, survivors, carers, etc.).
She is MBA qualified with a strong Marketing background that she hopes will add additional skills to this role.
Natalia joined ANZSA in 2019, having diagnosed with Ewing sarcoma in 2015 in her late thirties.
Being a public speaker and spiritual carer, she values the importance of stories and connection. She advocates for sarcoma patients/carers stories to be heard as valuable insights to create better care for the sarcoma community while bridging the connection between patients and clinicians as a healthcare partner.
As the founder of Laughter with Cancer, she also advocates for the importance of mental health during and after treatment. You can read more of her story here.
Stephanie Webster was diagnosed with osteosarcoma in her pelvis in 2017, and completed almost four years of treatment including surgery, chemotherapy, radiotherapy and immunotherapy.
She is passionate about creating awareness of sarcoma in both the general and medical communities, and ensuring that those impacted by sarcoma have access to accurate information and support for the range of physical and emotional challenges that sarcoma and its treatment can bring.
She is a strong advocate for sarcoma research and hope that by raising the profile of sarcoma in the community we can increase the allocation of resources and funding for sarcoma research with the aim of improving the outcomes for sarcoma patients.
Stephanie is a doctor, currently working as an unaccredited trainee in Radiation Oncology and hopeful to pursue a career in Oncology and is passionate about the rights of patients and helping patients navigate the health system.
Cassandra joined ANZSA in 2023. She was diagnosed with Undifferentiated Epithelioid Sarcoma in 2019.
She is dedicated to increasing awareness and knowledge about sarcoma within the medical community, ensuring that healthcare professionals are well-equipped to diagnose and treat this challenging disease. She is passionate about highlighting the importance of mental health support during and after treatment, and creating resources that offer critical support to patients navigating their sarcoma journey that provides both practical guidance and emotional reassurance.
Cassandra is committed to elevating the profile of sarcoma awareness on a broader scale by actively seeking to increase funding for essential clinical trials, recognising that robust research is crucial for advancing treatment options and improving patient outcomes.
She is an experienced Nuclear Medicine Technologist who is currently working in clinical research.
Jodi joined ANZSA in 2024 to learn more and to contribute in any way possible with a first-hand account of what it is like to have a Retroperitoneal Liposarcoma diagnosis within NZ, and to potentially help create an easier pathway that includes more information available for anyone in NZ who is recently diagnosed.
When Jodi was diagnosed with Retroperitoneal Liposarcoma in 2015/2016, there was little to no support or information provided other than a direct relationship with her surgeon, and an introduction to the Cancer Society. Feeling quite isolated without anyone who had similar experiences to talk to when recurrence happened, she joined a number of online groups and found out about ANZSA.
An ex-pilates instructor, and office administrator extraordinaire, Jodi loves spending time with her husband, son and close friends and family.
Julijana was treated for Ewing sarcoma as a young adult in 2016/2017. She is a passionate advocate for patients' rights and provides patients with a voice in the medical profession.
She wants to ensure patient experience is encapsulated in all clinical decisions. Julijana strives to raise the profile of sarcoma in the community to increase funding to ensure that sarcoma patients receive the equity of outcomes that more common cancers receive.
Julijana has previous experience as a political adviser in state government and now works as a social justice lawyer.
Dr Denise is the CEO of ANZSA for the last seven years.
She holds a PhD in Immunology from the University of Texas/MD Anderson Cancer Center, where she was a National Institutes of Health (USA) Fellow in Tumour Immunology and has been at the forefront of immunotherapy for solid tumours research.
Prior to commencing her graduate studies, Dr Denise held research roles at Harvard Medical School, Boston and at the Fred Hutchinson Cancer Research Centre in Seattle. Her previous role was as Senior Research Fellow at the Murdoch Children’s Research Institute at the Children’s Cancer Center at the Royal Children’s Hospital Melbourne, where she conducted immunotherapy clinical trials and basic science research.
Dr Denise is also a Member of the Australian Institute of Company Directors.
A/Prof Marianne Phillips
CAP member A/Prof Marianne is a Consultant Paediatrician and Adolescent Oncologist, and Palliative Care Specialist at the Perth Children’s Hospital. Originally from the UK, A/Prof Marianne has a significant interest and clinical acumen in the management of sarcomas and is the lead clinician for the Western Australian paediatric and adolescent solid tumour and palliative oncology services.
She is a member of the Western Australian Cancer & Palliative Care Network sarcoma tumour collaborative, member of the Australia & New Zealand Children’s Haematology & Oncology Group (ANZCHOG) solid tumour committee, institutional principal investigator for the international collaborative group Children’s Oncology Group (COG) and a member of the international Connective Tissue Oncology Society (CTOS).
A/Prof Marianne was instrumental in establishing the first specific adolescent oncology inpatient facilities in Australia to address the recognised specific, separate needs of adolescent oncology patients.
Janina is the Clinical Trial Manager at ANZSA with qualifications including BSci(Biol) and M(Nutr).
She has worked in health-related research for more than 20 years and developed a real passion for research and helping answer those scientific questions around human health. Areas she has worked in include nutrition, exercise, heart disease and cancer research.
Her speciality now is sarcoma research, and her main goal is to make sure the projects are managed and run in the best, most effective way possible.
