Australian Sickle Cell Advocacy Inc (ASCA) was formed because of Agnes and Preston’s experience with Sickle Cell Disease (SCD) when their daughter was diagnosed in late 2009. 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.
With her husband Preston and their friend Nathalie, in 2018 they formally registered ASCA, a not for profit organisation supporting people living with SCD in Australia. The idea started as a social media initiative when Agnes started a Facebook page in 2014 to raise awareness and post uplifting messages about sickle cell issues around the world. After chasing a cure for their daughter in three different States in Australia, their daughter was cured from Sickle Cell Disease in 2019, 11 years after living with this disease.
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. Agnes and ASCA have been recognised by Australia’s Federal Minister for Health on two occasions. Parliamentarians have also joined the group as Ambassadors to increase SCD awareness in Australia.
GLOBAL SCD ADVOCATE
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” which airs weekly on Facebook via Zoom.
Earlier this year, Agnes and her team brought together over 45 people affected by Sickle Cell Disease from over 23 countries to take part in a series of talks to increase the SCD awareness during this pandemic as we can not do our work face to face. This series is called Amplify SCD Voices Ten + 2 series.
Contact Agnes on firstname.lastname@example.org to share your story with the sickle cell community or to be part of Amplify SCD Voices and join the movement. These series have also got a French series running. The series will end on 9th January 2021. With views over 100,000 on Facebook and other social media platforms, let us unite and make sickle cell disease famous.
As a result of the Amplify SCD Voices, Agnes and the members of the group have created a Facebook closed group called Amplify SCD Voices Networks with the aim to increase the voices of sickle cell to different stakeholders. Contact Agnes to join the group
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.