ABOUT LUPUS WA

WHO ARE WE?

INTRODUCTION

Lupus WA a volunteer not-for- profit organisation was originally formed in 1979. It became an incorporated body in 1986.

The demands on a totally volunteer based organisation are enormous and multifaceted. Changes in volunteer status and availability have made it extremely difficult to maintain delivery of the Lupus WA mission and its overarching aim of providing the best possible patient support.

Subsequently, during 2020 Lupus WA merged under the umbrella of the Arthritis and Osteoporosis Foundation of WA (AOWA).  This merger will capitalise on the support and resources available through AOWA and will strengthen Lupus WA’s capacity to deliver its mission.

What will remain the same?

The Lupus WA “Be Lupus Wise” aim, key goals, branding, website, social media posts and support all remain, but with an enhanced capacity.

What will change?

The Lupus WA Board will become the Lupus WA Advisory Committee and will operate as an advisory subcommittee of AOWA.

Lupus WA is very grateful for the additional support and resources provided for the Lupus WA community by AOWA through this merger arrangement.

Young lupus patient and her daughter

OUR KEY AREAS OF FOCUS

Our five key goals are:

1. AWARENESS:

To increase public awareness, early diagnosis and treatment; and to engage public interest and support for lupus related activities.

2. EDUCATION:

To promote knowledge and understanding about lupus to people living with lupus and encourage them to become ‘active’ participants in their own health and wellbeing; and

To promote knowledge and understanding about lupus amongst healthcare professionals in order to support early diagnosis, ‘best practice’ treatment and management of lupus.

3. SUPPORT:

To provide peer support to people living with lupus, their family and care givers and to share lessons learned from “lived experience.

4. RESEARCH:

To support State, Commonwealth and International lupus research collaboration and alliances.

5. ADVOCACY:

To advocate for lupus awareness, education, support services and research in WA.

Key areas of focus of Lupus WA
Lupus research

INTRODUCING OUR BOARD

In 2020 following on from the merger of Lupus WA under the umbrella of AOWA, the Lupus WA Board became the Lupus WA Advisory Committee (LWAAC). The LWAAC continues to hold primary responsibility for setting and approving strategic directions and lupus activities.

The LWAAC brings together a wide range of experience and skills. Members of the LWAAC are committed to improving lupus awareness; education, support and advocacy across Western Australia.

Our LWAAC members are:

CHAIRPERSON - Dr Andreea Harsanyi

Dr Harsanyi graduated in Romania then moved to Perth and started her postgraduate studies. Having found Rheumatology so rewarding she changed her career course from GP and completed her rheumatology training in Perth and Hobart.

In addition to providing general rheumatology services Dr Harsanyi has also been running the Connective Tissue Disease Clinic at Fiona Stanley Hospital since its inception.

Dr Harsanyi also has an interest in teaching and is the Musculoskeletal Senior Lecturer at the University of Notre Dame.

BOARD MEMBER - W/Prof Hans C Nossent - MD PhD FRACP

Dr Hans NossentOriginally from the Netherlands where he received his medical training, and following a multinational work journey, Prof Nossent now holds the Chair in Rheumatology at The University of Western Australia and heads the Dept. of Rheumatology at Sir Charles Gairdner Hospital.

Through his clinical work and through teaching medical students Prof Nossent actively works to improve the understanding and management of rheumatic diseases, which have significant impact on quality of life, life expectancy and health care economics. His main research interests are the epidemiology, and outcome of systemic inflammatory autoimmune diseases, with a special focus on the development and use of biomarkers in this field.

Professor Nossent has a major clinical and translational research interest in systemic autoimmune disease, especially Systemic Lupus Erythematosus. He has published over 140 papers in peer-reviewed journals and provided more than 250 conference contributions.

BOARD MEMBER - Matthew Owen

Matthew is a chartered accountant with over 15 years of financial leadership experience in the UK and Australia. 

BOARD MEMBER - Dr Aron Chakera - MBBS (Hon), MRCP, DPhil, FRACP, FHEA

Dr Aron ChakeraDr Chakera graduated in medicine from the University of Western Australia and completed his internship and residency at Sir Charles Gairdner Hospital. He was awarded a Rhodes Scholarship in 2000 and moved to Oxford to complete a DPhil in molecular biology before training in renal medicine.

In 2008 he was appointed to the Clinical Lectureship in Nephrology at the University of Oxford where he developed a translational research programme focussing on autoimmune diseases and functional measures of immunity.
In 2012 he returned to Sir Charles Gairdner Hospital as a Consultant Renal Physician with clinical and research interests in autoimmunity and immunosuppression.

Dr Chakera is head of the Translational Renal Research Group, based in the Harry Perkins Institute of Medical Research and Director of Research for the Sir Charles Gairdner and Osborne Park Health Care Group.

BOARD MEMBER - Mary Erceg - Dip Ed, BEd

Mary ErcegMary Erceg is a former teacher and Public Servant in the State Government in senior policy and planning roles in the Education, Training and Workforce Development sectors. She brings experience in stakeholder engagement, strategic planning and policy/program development to the Board.

Mary has lived with Systemic Lupus Erythematosus (SLE) for more than four decades since initial diagnosis in 1973. She knows first-hand of the many and constantly evolving challenges faced by patients, their families and the medical professionals.
Mary draws on lessons learned from over forty years of “lived experience” to support others to become lupus wise and live better with lupus. She is a passionate advocate for improving lupus awareness, education, support, research and advocacy in Western Australia.

BOARD MEMBER - Mark Dowling - Grad Cert FP, Adv DP FP, Dip Fin, MAICD, SSA™

In 2008, at the height of the global financial crisis, Mark had a passion to help people with their financial planning needs, and established his own firm as founder and managing director of Life Insurance and Super Pty Ltd.

In the years since then Mark has grown the business by dedicating himself to professionalism and continued education while giving a personal touch to his clients.

Mark was diagnosed with Systemic Lupus after a long journey with his health battles. Living with a genetic form of Lupus he knows firsthand how challenging it can be running a business, having a family, studying and managing to keep on top of his health.

Mark is passionate about Lupus and wishes to promote research and greater education for Doctors, patients and families alike.