It was such an honour to officially launch the Australian Sickle Cell Advocacy Inc at the Royal Children's Hospital on Wednesday 19 June, 2019. The auditorium was filled with healthcare professionals, carers, patients, and families all there to advocate on behalf of those affected by sickle cell disease in Melbourne
I want to thank the group’s executive director and founder Agnes Nsofwa for all her hard work in raising awareness on sickle cell disease (SCD) in Australia. Agnes and her husband Preston have given up their time and energy to advocate on issues affecting sufferers of SCD after their beautiful daughter Mapalo Joy was diagnosed when she was a baby.
Above: With Mapalo Joy Nsofwa.
In my speech, I paid special reference to the phenomenal work of cell biologist and neuroscientist Panos Ioannou, whose work in this field was continued after his passing in 2005 by Dr Jim Vadolas, after Dr Vadolas was awarded the Panos Ioannou Fellowship in 2006, established by the Murdoch Children’s Research Institute.
It was a special day for me personally as the Federal Member for Calwell, as it really was a Calwell family affair. The Nsofwa family are constituents of Calwell - that's how I came to meet them, but also the pioneering CSL Behring here in Broadmeadows were the main sponsors. And it was great to see Good Samaritan Primary School at the launch as it's Mapalo's local school.
