Background: Brain Tumour Alliance Australia (BTAA) is the only national brain tumour patient and caregiver organisation in Australia. It was established in late 2008 by a group of brain tumour patients and current and former caregivers. While welcoming the advice and input of specialists, BTAA seeks to represent the brain tumour community from the viewpoint of the patient, family and caregiver.

Coverage: BTAA is concerned about all brain tumours – paediatric and adult, malignant and so-called benign, and metastatic brain tumours. In other words, all tumours of the central nervous system, which includes the spinal cord. It believes that brain tumours represent a neglected cancer, which places enormous challenges on the patient and family and requires a unique response and a much increased research effort supported by the community and governments.

Activities: BTAA provides information resources to newly diagnosed patients and their familie. It has established a free call 1800 number for peer support (1800 857 221). BTAA can provide trained consumer representatives for brain tumour-relevant advisory bodies. We seek donations to cover the costs of the establishment expenses we have incurred (close to $2,000) which will be initially underwritten by individuals, and our on-going costs to maintain this resource.

We strongly recommend the following resources for newly-diagnosed patients and their families: The Primer of Brain Tumors, published by the American Brain Tumor Association (ABTA), which can be accessed here and downloaded chapter by chapter (BTAA can also send you a printed copy of the Primer); Al Musella's Virtual Trials website which contains a wealth of information and has a built-in search facility; the BrainLife website which is maintained by Giovanni and Elisabetta Camporeale (who is a brain tumour patient); Headlines is a quarterly newsletter produced for brain tumour patients and their families by Rosemary Cashman for the BC (Canada) Cancer Agency and contains articles on specific subjects. Locally, we also recommend a series of Fact Sheets and Resource Sheets for brain tumour patients, family and caregivers, developed by the Cancer Institute NSW NSWOG Neuro-Oncology group, and the booklet Understanding Brain Tumours, developed by the Cancer Council NSW.

Freecall number: The BTAA has a Freecall number: 1800 857 221 (available only in Australia) where you can speak to someone who knows what it is like to travel the brain tumour journey.

BTAA display at Canberra Hospital for International Brain Tumour Awareness Week 2009.

INTERNATIONAL BRAIN TUMOUR AWARENESS WEEK - MESSAGE FROM THE MINISTER FOR HEALTH AND AGEING, HON  NICOLA ROXON MP.

This week marks International Brain Tumour Awareness Week.  The International Brain Tumour Alliance and the Brain Tumour Alliance Australia are to be commended for their efforts in supporting, providing advocacy and coordinating information groups for brain tumour patients, carers and health professionals both across the world and in Australia..

The fight against cancer is a priority for the Australian Government and the Government acknowledges the burden of cancer on patients and their families. In the 2009-10 Budget, the Government committed $2 billion to build a world-class cancer system in Australia, focused on investing in 21^st century cancer infrastructure and supporting cancer medicines and care.  These investments build on the package of initiatives funded in the 2008-09 Budget, targeting research, early detection, treatment and support programs to improve the wellbeing and outcomes for patients affected by cancer, their carers and families. 

 The Australian Government is also supporting research and clinical trials to improve outcomes in people affected by brain cancers. In the 2007 round of the Priority-driven Collaborative Cancer Research Scheme the Australian Government, through the Diagnostics and Technology Branch of the Department of Health and Ageing and Cancer Australia, awarded funding of over $0.5 million to a three year research project in the field of brain tumour research.

The Australian Government also provides funding through the Support for Cancer Clinical Trials program to build Australia’s capacity to conduct industry-independent cancer clinical trials. Under this program in 2008, Cancer Australia funded the establishment of the Cooperative Trials Group for Neuro-Oncology (COGNO). Following its establishment, COGNO was awarded further funding in 2009 to continue its important work in conducting clinical trials in brain tumours. 

During 2009 International Brain Tumour Awareness Week events will take place around the world, including in Australia, to raise awareness of brain tumours and to raise funds for brain tumour support and research.  The efforts of all involved in these events are greatly appreciated and I congratulate the International Brain Tumour Alliance and the Brain Tumour Alliance Australia for their leadership in this area.

NICOLA ROXON

Senator Bilyk, Centre,  (ALP, Tas) meets with the secretary and treasurer of the newly formed Brain Tumour Alliance Australia (BTAA). Senator Bilyk was very interested in our cause and looks forward to working with our organisation in the future.

John Carey: Perth. John knew nothing about brain tumours - until his mother Delys was diagnosed with GBM 4 in 2006. Her amazing courage and humour inspired him to establish with other patients, family and friends, the Brain Tumour Association of WA. He is currently Chair of the Association, which has now been successfully operating for a year. See "Website Links and Contacts".