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MEDIA RELEASE

Imagine your active mind being trapped in a motionless body. One by one, you lose the ability to walk, talk, swallow… and to hug. 

This reality is faced by approximately 1,400 Australians who are currently living with motor neurone disease (MND). The disease ‘switches off’ the nerves which normally signal our muscles to move, leaving a person paralysed but fully alert. The cause of the disease is unknown and there is no cure.

MND Week runs from 6-12 May and MND Australia is highlighting the active minds of people living with MND. Like Duncan Bayly, aged 34. “One of the hardest parts about this disease is how insidious it is. Your brain remains completely active and you have all your faculties but your body just wastes away.”

“When I was first diagnosed (at 29) with MND, I vowed to travel as much as I could while I could still walk. I travelled round the world and while I was in Europe, I led two ‘Rides for MND’ that raised $150,000 for MND research,” says Duncan.

And he’s still active – Duncan has since got married and was recently elected to the Board of the MND Association of Victoria. His achievements are all the more incredible when you consider he is now unable to walk and has difficulty speaking without assistance.

“Far too little is known about the cause of MND and likewise any potential treatments and a cure,” said Duncan. “Research and funds are essential if we are to improve care and one day see an end to this devastating disease.”

MND Australia is calling on the community to get active by joining an event or hosting a fundraising challenge during MND Week. Funds raised for your local MND Association will provide essential equipment, improve care and provide much-needed information and support to people with MND and their carers.

To find out how to get involved in MND Week visit www.mndaust.asn.au/mnd-week

For more information about MND or to schedule an interview with a person affected by MND in your area, please contact:

Anna Love, Communications Manager, MND Australia  Email: annalove@mndaust.asn.au

Carol Birks, National Executive Director, MND Australia Email: carolb@mndaust.asn.au

Journalists: Read our Background Information sheet to find out more about motor neurone disease