About Us

Who we are

The Australian Cystinosis Foundation is a group of individuals concerned with the health and well-being of children, youth and adults living with Cystinosis.

The Australian Cystinosis Foundation was formed in 2021 by Rhonda King and Rick Jones, the Grandparents of Oscar, who was diagnosed with Infantile Nephropathic Cystinosis in January 2021.

The Foundation looks to support individuals and families affected by Cystinosis through awareness, education and advocating for better and more effective medical treatments with the hope of a cure.

The foundation is registered in QLD as a not-for-profit charitable organisation and endorsed as a Deductible Gift Recipient (DGR Status). A voluntary board of directors provides the overall direction for the foundation with the hope to help support and fund research Nationally and Internationally.

What We Do

Providing education about Cystinosis and disseminating information pertinent to the Cystinosis community.

Helping raise awareness about Cystinosis amongst the community, health professionals and Government bodies throughout Australia.

Hosting meetings of patients, families, physicians, and researchers. 

Supporting legislation and change vital to the Cystinosis community. 

Whether you or your family members are newly diagnosed or currently receiving treatment we are here to help you find specialists, treatment, Whether you or your family members are newly diagnosed or currently receiving treatment we are here to help you find specialists, treatment, NDIS assistance (where we can) and information related to all aspects of Cystinosis.

Our Mission

To improve the health and well-being of Australian Cystinosis patients through education, advocacy, and support of research.

Our Vision

To improve and progress the quality of life of Cystinosis patients across Australia.

Our Board Members

Rick Jones – Director

Rick is a founding member and Grandparent of Oscar who was diagnosed with nephropathic Cystinosis at 12 months old.

Providing support and advocacy for those in the cystinosis community is of great importance to Rick. 

Rick is a consultant to JHK Legal, an eastern states legal firm and he has been a lawyer since 1980. For information relating to Rick and his contact details please see his profile attached.

Rhonda King – Director

Rhonda is a founding member and the Grandparent of Oscar.

Rhonda aims to focus on making a real difference for those living with Cystinosis and their families by pushing for significant changes in government policies and research.

Rhonda’s background is in law having been in private practice since 1981. 

Rhonda remains as special counsel to JHK Legal. For information relating to Rhonda and her contact details please see her profile attached.

Tim Jones – Director

Tim is a founding member and father to Oscar who has Cystinosis.

Tim is devoted to assisting families and professionals by spreading information about Cystinosis and managing fundraising efforts. 

Please reach out to Tim if you wish to discuss Cystinosis research and fundraising opportunities.

Jenna McKenzie – Director

Jenna is Oscar’s mum and a founding member. 

Jenna is passionate about the Cystinosis community knowing there is a need for more proactive steps to be made here in Australia to help improve the lives of Cystinosis patients and families.