ASCA aims to continuously raise awareness, provide information valuable to patients, and support people affected by SCD. Together with the affected communities, we aim to advocate for better services.
We have chapters in all major cities across Australia. Our Association is managed by the Board Members based in Melbourne Victoria. The Board is headed by the Board Chairman. Chapters across Australia are managed by state executive teams.
Get in touch to be connected with your local state office.
Meet our Board Members and our victorian team members.
Agnes is a mother of four, their youngest child was born with sickle cell anaemia. Agnes is a Registered Nurse / Data Analyst by profession, working in the aged care industry. In 2012, Agnes changed careers from Business to Nursing so that she could understand SCD and what their child was going through. Agnes also has a bachelor’s degree in Business and Diploma of accounting with experiences in the taxation and banking industries. Agnes is the co-founder of Australian Sickle Cell Advocacy Inc. Her passion to advocate for Sickle Cell Disease (SCD) was as a result of having their youngest child being diagnosed with Sickle Cell Anaemia in 2009. In 2014, Agnes and husband started the SCD awareness Facebook page to support other people affected by this disease. The group was formally registered as a not for profit association in October 2018. Agnes’ passion is to support programs and initiatives that enhance lives of people from disadvantaged backgrounds. She also volunteers her time to different projects which raise funds to support scientific research.
Preston is the founding member for Australian Sickle Cell Advocacy. In 2009 their youngest child was diagnosed with Sickle Cell Disease (SCD). In 2014, Preston and Agnes started the SCD Facebook page to support other people affected by this disease. The group was formally registered as a not for profit association in October 2018. Preston’s professional background is in the fields of Product Development, Aged Care and Mining has given him diverse exposure to the disciplines of Finance, Procurement, Project Management, and General Management. He is a qualified accountant and a Mining Engineer. Preston’s passion to engage in community work to support not profit initiatives. In his spare time Preston like fishing, watching movies and collecting music.
Nathalie was part of the initial planning phases of this advocacy iniative in 2015. She is passionate about Technology and its ability to simplify and innovate how humans interact and operate every day. Her roles in Technology have been across the whole Systems Development life cycle, and currently as a Business Analyst focusing on Technology governance, new ways of working, workflow visualization and standards, with the aim to improve quality and align work to business initiatives. Nathalie is a mother of two and is passionate about giving back to the community. In her spare time Natalie enjoys sports like running, viewing art galleries and travelling.
Dr Evans-Galea is a scientist, executive and entrepreneur and Executive Director of the Industry Mentoring Network in STEM with the Australian Academy of Technology and Engineering, and co-founder and CEO of Women in STEMM Australia. She has led international research programs in cell and gene therapy for genetic disease at world-leading organisations in the United States and Australia, and has received numerous awards for her research and leadership. She is currently the Australasia Associate Editor on the Editorial Board with Gene Therapy-Springer Nature. Dr Evans-Galea is also a renowned
advocate for STEMM research, education and innovation, and has served with advisory groups in State and Federal government, and communicates on a range of science-related topics via social and mainstream media. An independent consultant, speaker, editor and peer reviewer, she remains actively engaged across multiple professional sectors in the broader STEMM ecosystem.
Dr Kalumba is a fellow of Royal Australasian College of Physicians, Consultant Paediatrician and a Clinical Haematologist. He has broad experience in all paediatric conditions including neonatology, growth and development, asthma, infections, eczema, behavioural problems including ADHD & Autism Spectrum Disorders, and in particular specialized in blood disorders. Dr Kalumba trained as a paediatrician at the Royal Children’s Hospital in Melbourne, in addition to his previous paediatric training including Fellowship with the College of Medicine of South Africa. He undertook further training in Haematology in Melbourne at the Royal Children’s Hospital, Peter Mac Cancer Centre and Melbourne Pathology, including Laboratory Medicine. He is accredited with Cabrini, Jessie McPherson Private Hospital, Waverly Private Hospital, Knox Private Hospital, Peninsula Private Hospital and The Bays Private Hospital. He also works as visiting specialist in numerous hospitals across Australia. Dr Kalumba had also practised paediatrics in various countries including D.R Congo, Zambia, Lesotho and South Africa.
Sarah is a published research scientist with a doctorate in cancer biology. Following her post-doctoral studies, Sarah moved into the pharmaceutical industry where she has worked in medical roles across 3 global companies (GSK, Novartis and Pierre Fabre) covering range of disease states, including; Melanoma, Renal Cell Carcinoma, Chronic Lymphocytic Leukaemia, Colorectal Cancer, Breast Cancer and Neuroendocrine Tumours, to help to bring new treatments to market. Sarah is passionate about communicating science to the broader community to highlight the importance of research, and drive investment into areas of need. She has worked as a social media liaison at several national and international conferences, as well as doing communications and public relations work in her previous research roles, and has won several awards for her scientific presentations. Sarah is currently working as a Medical Advisor for Pierre Fabre, a private company run by a government-recognized public-interest foundation who invests heavily in projects to help fight SCD.
Bright migrated to Australia from Zambia in 2002. He holds a Masters degree in Public Health (Health economics major) from Monash University, a Masters Degree in International Finance from Deakin University, and a Bachelor of Business in Accounting and E-Commerce from Charles Sturt University. Bright is also the Chairman / Founder of Carers for Africa. Carers for Africa works to
improve access to health services for disadvantaged persons from diverse
backgrounds experiencing health issues, family and domestic violence and unemployment.
Hsiao is a postdoctoral researcher with expertise in epigenetics and gene regulation, with an emphasis on regulation of globin gene expression and disorders of haemoglobin. Hsiao completed her doctoral studies in gene therapy for Thalassaemia and post-doctoral tudies at the Weather all Institute of Molecular Medicine at Oxford University. During this time, she investigated the function of a protein (ATRX) important for expression of the a-globin gene at the MRC Molecular. Haematology Unit under the guidance of Prof. Doug Higgs. Hsiao continues to study ATRX at Monash University, and the role of
this protein in paediatric brain tumours.
Dr Anthea Greenway is a Paediatric Haematologist at The Royal Children’s Hospital and Monash Medical Centre in Melbourne. She completed a clinical fellowship in SCD at Duke University Medical Centre, North Carolina in 2010. Dr Greenway is the Clinical Lead of the Sickle cell and Haemoglobinopathies service, the clinical lead of the Apheresis service, and chair of the Apheresis Committee at The Royal Children’s Hospital.
Peter is a secondary school teacher who is passionate about advocating for better services for people affected due to his own experience. Peter was diagnosed with SCD in 1963 at the age of 3 years old. For 50 years the standard treatment was pain relief, blood transfusions and staying hydrated. These treatments addressed the symptoms of SCD pain and the anaemia, but there was no preventative treatment other than; avoiding dehydration, over exertion or infections. In 2011 he started apheresis (red cell exchange) treatment and he has never been happier.
Peter is ASCA’s support networks coordinator, he brings his own experience to this role as we support people affected by this disorder. ”
“I’m happy that for first time in almost 60 years I belong to an association looking out for the needs of scd patients, something I never had when I was growing up”.
Contact Peter through our contact page to join our support network meetings which run every 2nd month.
Mayase is Senior Business Analyst and Iteration Manager specialising in IT consulting and software delivery. She has led distributed software delivery teams across Australia, China and India. Her skills include; agile project management, resource is planning, agile business analysis, change management, product thinking, network administration, domains and career development coaching. She volunteers her time to initiatives that progress her passion for diversity, making education accessible to every child and increasing the participation of women in Science, Technology, Engineering and Mathematics (STEM).
Tayo Muse is a trained medical doctor with experience in the public health sector. His interest in advocacy for quality healthcare delivery in West Africa got him appointed to lead the monitoring and evaluation unit at a Global fund and PEPFAR funded health project. Currently a postgraduate student at Australian Catholic University, he hopes to contribute to the improvement of healthcare service delivery, especially to the marginalized population.
Christinah comes from a customer service background. She is a mother of four boys and one grandchild. Her passion is to help people from disadvantaged backgrounds. She has always dedication her time to volunteer in events to assist with scientific research. She had a personal experience with acute anaemia (a symptom also common to SCD), when she was admitted in hospital. During her free time, Christinah enjoys spending time with family and volunteering at church activities.