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 Chairperson. 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 Sickle Cell Disease ( 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 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 imitative 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 travelli
Dr Sarah Tregenza, BSc(Hons), PhD, MAICD, is an experienced Medical Affairs professional driven by a passion to bring innovative therapies to market to meet unmet patient needs, and to maximise the quality use and subsequent patient outcomes for therapies already available. She has over 17 years’ experience working to improve patient care across academic research and the pharmaceutical industry – a doctorate in cancer biology with over 8 years’ preclinical research experience (2006-2014), and over 9 years’ experience working in Medical Affairs roles across 3 global pharmaceutical companies (2014-present); GSK, Novartis and Pierre Fabre.
Dr Tregenza is experienced at managing, coaching, and developing others. She has spent the last 5 years in the pharmaceutical industry working with diverse national and international cross-functional teams, leading projects, and informing and delivering on strategy. Dr Tregenza also previously served ASCA as Board Member and Scientific Advisor for a 2-year term during their pivotal launch phase from 2018 – 2020. She currently works as the Director of Medical Affairs Oncology for Pierre Fabre covering the Asia-Pacific region.
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.
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.
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).
Merlin Crossley is Deputy Vice-Chancellor (Academic) at UNSW and Professor of Molecular Biology. He has also worked or studied at the Universities of Melbourne, Oxford, Harvard and Sydney. He has been recognized by numerous awards, including a Rhodes Scholarship and the Australian Academy of Science’s Gottschalk Medal. He has made significant contributions to academic administration, serving as Dean at UNSW since 2010, and previously having been Acting Deputy Vice-Chancellor Research at the University of Sydney from 2006 to 2008.
Martin is clinician innovator who has a deep passion for solving complex problems in healthcare using technology. He holds leadership positions in clinical research, medical education and hospital governance.
Martin has founded numerous healthcare related organisations. He currently is founder of:
- Medical Pantry: a health promotion charity that rescues medical supplies and distributes to underserved communities;
- Medrun: a digital pharmacy aimed at improving patient outcomes and experience by making accessing prescription medicines easier;
- WeRoster: a smart cloud based rostering platform built for healthcare;
- Corsonis: a Class 2a medical device which screens for cardiac disease.
Martin also advices, mentors and invests in startups.
Masimba is a Risk Professional, Certified Project Management Practitioner and qualified Chartered Accountant with over eleven years professional experience, with in-depth experience across various industries including Infrastructure, Financial Services, Transport, Healthcare, Government, Education and Utilities delivering a range of services in the areas of Internal Audit, Enterprise Risk Management, Compliance, Controls Transformation, Corporate Governance and Major Project Advisory
He is a leader in the provision of risk, governance and assurance services and work with boards and senior management teams to achieve optimal governance, risk and control environments that support the organisations to achieve strategic priorities. He has a proven success record in assisting organisations to increase maturity in governance, controls and risk management through understanding clients’ expectations and delivering insights the provide the right commercial outcomes.
Masimba is an advocate in relation to cultivating innovation through divergent thinking’ through using teams with diverse backgrounds to add value and result in tangible improvements in the overall control environment. He was recently awarded Top 25 Skilled Migrants Professionals Australia wide by the Skilled Migrant Professionals Association.
He leads internal audit teams to effectively assess and understand the organisations’ corporate risks to ensure financial and operational integrity and compliance with relevant legislative and policy requirements. He leads by example by demonstrating high standards of quality, ethics, professionalism and a positive attitude driving team engagement and performance.
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.
Australian Sickle Cell Advocacy Inc (ASCA) is a patient advocacy group supporting the rights of people living with Sickle Cell Disease (SCD) as they navigate the healthcare system in Australia. ASCA is a non-profit organisation started in 2014 and officially registered in October 2018. An advocacy group formed to fill the gap of highlighting the rising numbers of sickle cell disease in Australia. Although rare in some part of the world like Australia, sickle cell disease is affecting a lot of people.