Kris is rare disease advocate and health professional with Masters Degrees in both Health Science and Wellness and a background in nursing. After a 14 year odyssey Kris’s family received the diagnosis for their son, Will, who has SCN2A.  Kris consults to hospital boards, industry and community groups, ensuring quality consumer engagement across the health and disability sectors.  Kris is passionate about empowering consumers to have a voice in their care and outcomes.

Michelle has lived experience in complex disability and health care as a parent and supporter of her young adult daughter, Daelle, who has profound intellectual and multiple disabilities. Michelle serves in a range of roles as an advocate and consumer. As a sociologist and lawyer, her work focuses on decision-making and the operation of law and regulation in practice for people with disabilities and other impairments to communication and legal capacity. She explores decision-making in practice in a range of areas, including the NDIS, health and aged care, banking and finance, income support, and voting. She is a researcher at the Queensland Aphasia Research Centre at the University of Queensland, working on communication and decision-making in health and aged care.

Heather Renton is the Founder and the former CEO of Syndromes Without A Name (SWAN) Australia, a support group that provides information, connection, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition. Heather is a SWAN Australian Ambassador and the Australian Ambassador for the International FOXP1 Foundation.

Heather is the mother of two neurodiverse children, one of whom has a rare genetic condition called FOXP1 Syndrome. She is a consumer representative on several advisory groups and committees and a passionate disability and health advocate, particularly around genomic technology and co-design. Heather has been an active member of the Child UnLimited Consumer Board since its inception in 2021.

After 11 years of running SWAN, Heather established herself as a freelance consumer advocate, consumer/parent advisor and engagement consultant in the health and disability sector.

Tiana Kittos is an undergraduate student studying Psychology and Gender Studies at the University of Sydney and hopes to become a Clinical Psychologist. She has been an Associate Investigator on the SOCIAL AYA study investigating the prevalence, course and consequences of social anxiety symptoms among young people with cancer and has interned at the Sydney Children’s Hospital. She was diagnosed with Acute Lymphoblastic Leukaemia at age 10 and as a cancer survivor, aims to advocate for better supports and amplify the voices of young people.

Julia is the mother of a daughter diagnosed at 2 years old with Polyarticular Juvenile Idiopathic Arthritis. Julia’s youngest daughter of 3 children was almost over night unable to walk or breath and was diagnosed after several presentations to emergency departments and GPs. Her daughter is now almost 5 and about to start prep in Brisbane. Since her daughter’s diagnosis Julia has sought to provide a voice to children and their parents who have children living with arthritis and other musculoskeletal and rheumatic diseases in Australia.

As the Chief Executive Officer of Cystic Fibrosis Australia (CFA), Jo Armstrong has extensive experience in the non-profit, charitable sector. Jo has worked in a range of executive positions and across a variety of diverse organizations including in the fields of aged care, education, welfare, domestic violence, and mental health. Jo is passionate about supporting chronically ill children so that they can have full and healthy lives. Jo is currently completing her doctoral studies in non-profit leadership in 2023.

Amanda (Mandy) Schmidt is a Detective in the Queensland Police Service with over 20 years’ service. She is also the mum of a beautiful and happy 9-year-old who has a complex medical history including a genetic heart disease resulting in a heart transplant at 1 year old and severe intellectual and developmental delays. She is passionate about ensuring departments share information required for a holistic approach to medical treatment, a child centred approach to maximise children’s care, reducing their hospital contact with a focus on their and their family’s mental health.

Ellie has been a lifelong consumer of Queensland’s public healthcare system due to a diagnosis of Quadriplegic Cerebral Palsy from birth. Ellie is currently a patient at the Mater Hospital in Brisbane, where she serves as a Consumer Representative for the Mater Youth Consultancy. She is the youngest person and first patient representative to join the Queensland Child and Youth Clinical Network’s Clinician Collaborative. She is a passionate advocate for creating a healthcare system that provides a person-centred, holistic approach to patient care for young people experiencing chronic and complex illness.

Natasha’s daughter has a rare genetic condition related to the TRIO gene. This causes several health issues for her daughter, including intractable epilepsy, intellectual disability, global developmental delay, ADHD and other concerns. Natasha is also a PhD candidate at the University of Newcastle, where her research focuses on youth wellbeing. Natasha is passionate about mental health and disability advocacy.