Australian Sickle Cell Advocacy Inc was formed as a result of Agnes and Preston’s experience with Sickle Cell Disease (SCD) when their daughter was diagnosed in late 2000. A mother of four children, Agnes is a Data Analyst by profession but became a Registered Nurse to understand SCD and what their daughter was going through. She studied for a master’s degree in Nursing from the University of Sydney in Sydney NSW Australia before studying for a bachelor’s degree in business and a diploma in accounting. With her husband Preston and their Friend Nathalie, in 2018 they founded Australian Sickle Cell Advocacy Inc (ASCA), a not for profit organisation supporting people living with SCD in Australia. Today they continue to raise awareness about SCD, provide educational support and comfort people affected by the disease. They also lobby policy makers to provide better services for people affected by SCD in Australia. To ensure people affected by SCD and other stakeholders have a platform to discuss SCD related topics or SCD life stories, ASCA and Agnes have created a Facebook Live event called “SCD Talks with Agnes”aired weekly on Facebook via Zoom.
Registered in 2018, Australian Sickle Cell Advocacy (ASCA) is a registered charity organisation supporting people affected by Sickle Cell Disease in Australia. ASCA is the umbrella Sickle Cell Disease patient organisation and has chapters or representatives in all States throughout Australia.