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We touched a nerve in Canberra!

NAA leaders and friends
4 April 2017

Wednesday 22 March 2017
Parliament House

The Neurological Alliance Australia (NAA) was delighted with the response to our recent Joint Position Statement launch.

Hosted by Senator Deborah O’Neill (Co-Chair of the Parliamentary Friends of MS), the event was well attended by Alliance members and representatives, MPs, Senators and their advisors. 

The statement calls for equitable and effective support from the National Disability Insurance Scheme (NDIS) for people with progressive neurological diseases and increased investment in research.  The Alliance believes that the NDIS has the power to transform the lives of people living with progressive neurodegenerative diseases and this Statement sets out recommendations to ensure better NDIS outcomes.

Over 850,000 Australians live with progressive neurological or neuromuscular conditions with no known cause or cure, with an estimated further 4 million carers and family members affected and an annual cost to the Australian economy of almost $30 billion.

Professor Matthew Kiernan, Bushell Chair of Neurology at the University of Sydney and President of the Australian and New Zealand Association of Neurologists (ANZAN) spoke of the urgent need for an increased investment in research.  He said that with adequate funding, it could be possible to find cures for neurodegenerative conditions in this generation of parliamentarians.

Andrew Potter who lives with multiple sclerosis and Conny Gard whose husband has Parkinson’s, shared their hopes for a cure and the need to improve aspects of NDIS implementation.

NAA Chair (and MSA CEO), Deidre Mackechnie officially launched the Joint Position Statement, outlining the recommendations designed to ensure better outcomes for people with progressive neurodegenerative conditions.

The launch was aired on Channel 9 Canberra and for a time our Twitter handle #NAAaction (supported by #NAA) was trending number 1 in Australia!

The Alliance will continue to pursue these topics at meetings with parliamentarians and decision-makers, to both progress the recommendations and seek increased investment in research.

Established in 2010, the Neurological Alliance Australia comprises Alzheimer’s Australia, Brain Injury Australia, Huntington’s Australia, Machado Joseph Disease Foundation, Motor Neurone Disease Australia, Multiple Sclerosis Australia, Muscular Dystrophy Australia, Muscular Dystrophy Foundation Australia, Parkinson’s Australia and Spinal Muscular Atrophy Australia.

The NAA represents adults and children living with progressive neurological and neuromuscular diseases and promotes improved quality of life, coordinated services and greater research investment. 
 

PICTURED ABOVE: NAA members and friends (l to r): Graeme Shears - CEO, Epilepsy Australia; Phil Martin - CEO, Muscular Dystrophy Foundation Australia; Robyn Kapp - Executive Officer, Huntington’s NSW; Carol Birks - CEO, MND Australia; Julie Cini - CEO, Spinal Muscular Atrophy Australia; Deidre Mackechnie - CEO MS Australia and Chair of the NAA; Steve Sant - CEO Parkinson’s Australia; Laurie Stroud - MD Ambassador, Muscular Dystrophy Australia; Ara Caswell - CEO, Carers Australia and Nigel McPaul - Policy and Program Manager, Alzheimer's Australia