About
Our Mission
To provide support for patients and carers of patients with thalassaemia, sickle cell anaemia, blackfan diamond disorder and other haemoglobinopathies, while providing funding for treatment, medical equipment, research and education.
The Thalassaemia Society of NSW Inc. is a registered Charity formed in 1979 as a non-profit, self-help Society by the families of children suffering from thalassaemia, sickle cell anaemia and blackfan diamond disorder, with the support and guidance of the treating health professionals.
The Thalassaemia Society of NSW is the chief fund raising body supporting the comprehensive thalassaemia services at Sydney Children's Hospital, Randwick, Prince of Wales Hospital, Randwick, the Children's Hospital at Westmead, the Adult Hospital at Westmead, Royal Prince Alfred Hospital Camperdown, and at Liverpool Hospital. It has also been instrumental in negotiating the optimum provision of service to the patients at these hospitals. To continue with this financial support the Society organises fund-raising functions during the year.
The Society is administered by a volunteer Committee elected at the Annual General Meeting who donate their time and concerted effort for the benefit of Thalassaemia patients in NSW. The Society also has various sup-committees with an experienced committee member in charge to co-ordinate each activity. The financial accounts are audited yearly.
The Executive
President - Maria Aravantinos
Maria is a registered nurse specialised in Intensive Care.
Maria's mother, Dina, who was an Executive Committee member for 15 years, inspired Maria to become involved in the Thalassaemia Society of NSW. Once eligible, Maria joined the committee. In the last 12 years she has held various positions including Executive committee member, Asst. Treasurer, Vice President and now holds the position of President. Maria has represented the Thalassaemia Society of NSW on the Australian Thalassaemia Association (ATA) Board, as well as having represented Australia on the Thalassaemia International Federation (TIF) Board as a delegate.
Chairperson - Martha Gerolomou
Vice President - George Houssos
Secretary - Courtney Houssos
Asst Secretary - Marianne Dimitrakas
Marianne currently holds the position of Asst Secretary. She has been involved with the Thalassaemia Society of NSW for the past 12 years; five of those years as a Committee Member & seven as the Asst Secretary, as well as being on the Newsletter Sub Committee.
As Assistant Secretary, Marianne's role is to record the Correspondence from the monthly executive meetings, as well as recording the Minutes in the Secretary's absence. As a member of the Newsletter Sub Committee, Marianne assists with the preparation of the newsletter mail-out.
Ms Dimitrakas' employment background is Reception & Customer Service of which she has eleven years experience.
Treasurer - Yvonne Phokos CPA
Yvonne has been a long time volunteer and supporter of the Thalassaemia Society of NSW. Her father, Andrew Phokos, was one of the first Executive Committee Members to hold the position of Treasurer.
Yvonne has had 10 years experience working as an accountant in commerce having occupied positions such as Financial Reporting Manager and Corporate Planning Manager for Aristocrat Leisure Limited, an ASX100 listed company. In her roles at Aristocrat Yvonne was instrumental in producing the Group financial statements lodged to the ASX and the financial analysis and reports provided to the Board.
Asst Treasurer - Rosa Dimitrakas
Rosa has been on the committee of the Thalassaemia Society of NSW since 1996 when she was first elected as an executive committee member. In 1997 Rosa was duly elected Assistant Secretary, and in 1999 Rosa accepted the position of Secretary, which she held until 2005. In September 2005 until present Rosa has held the position of Assistant Treasurer.
Rosa joined the Society because it is important to her as she has thalassaemia major and believes that we need to fight for a better life and awareness.
Press Secretary - Theodora Michalopoulos
Executive Member - Kelly Abrakasa
Executive Member - Ginetta Diblasi
Executive Member - Halime El-Afshal
Executive Member - MD Faisal
Executive Member - Nancy Lucich
Executive Member - Christine Mihos
Executive Member - Maria Solomou
Coordinator, Thalassaemia Centre of NSW - Jane Lampitsi
Jane was appointed as the Thalassaemia Centre Coordinator of NSW on the 13th March 2007. She is responsible for the co-ordination of medical, nursing and allied health support services to all those affected by thalassaemia, sickle cell anaemia, blackfan diamond and other blood related disorders in NSW. Jane is working towards the coordination of the health education programs, while providing support to the Thalassaemia Society of NSW Executive Committee.
Jane is also a foundation member of the Thalassaemia Society of NSW, in the past having held various positions such as Chairman, the Secretarial positions and Executive Committee Member over a period of 22 years.
Our Objectives
The Thalassaemia Society of NSW is a non-profit organisation that was established to:
• Ensure that all persons suffering from Thalassaemia, Sickle Cell Anaemia, Blackfan Diamond and other blood disorders in NSW receive the optimum standard of treatment
• Raise awareness of Thalassaemia and other haemoglobinopathies where they are not recognised as priorities in public health
• Provide assistance and support to patients and to families of patients suffering from Thalassaemia and other haemoglobinopathies
• Support and encourage medical and social research projects designed to improve the quality of life for people with Thalassaemia and other haemoglobinopathies
• Promote The World Health Organisation’s (WHO’s) guidelines on the management of Thalassaemia and other haemoglobinopathies
• Bring together patients, families and supporters for information dissemination
• Raise the funds required for the above objectives. The Society will continue its fund-raising activities to support research and welfare needs
• Work with other groups and organisations with an interest in Thalassaemia and other haemoglobinopathies
Foundation Members
Dr Vasili Berdoukas OAM, Professor Ron Trent, Dr Bau, Dr Sandy Robertson, Dr Boyd Webster, John & Angela Dimitrakas, Elizabeth Karamihalis, Niki Lampitsi and Jane Lampitsi, Mary Lathourakas, Alex & Effie Margaritis, Fred & Maria Matsas, Jim & Kitza Mihalopoulos, Peter & Ellie Phontos and Sotiris & Mark Tirris.
(Mr Peter Phontos, Foundation Member and 1st President of the Thalassaemia Society of NSW, sadly passed away on 28th August 2007).
The Thalassaemia Society of NSW is a member of the Australian Thalassaemia Association (ATA), the national body for thalassaemia and haemoglobinopathies.
In turn the ATA is a member of the Thalassaemia International Federation (TIF), the global movement for Thalassaemia and is recognised by the World Health Organisation (WHO).
The Thalassaemia Society of NSW would like to thank NSW Health (SSWAHS)
for their continued support through their funding of
the Thalassaemia Centre of NSW, and
the Coordinator, Thalassaemia Centre of NSW.
Disclaimers
