Amy Critchley, MND NSW board member writes - I heard the news while sitting in an open plan public service cubicle in Canberra. She said ‘It’s the one we didn’t want...it’s motor...neurone...disease’ and then just broke down crying on the phone.

I said several calming platitudes, while simultaneously googling MND at my workstation. I did not know a thing about it. The first thing I saw was a prognosis of 1-2 years on whatever website I’d opened up. I sat frozen with shock and the rest of the conversation is a blur.

Brilliant effort by Emma Schuch to participate in Port Macquarie 70.3 Ironman on Sunday 1 May in rainy weather and raising funds for MND. A new mum with a 6 month old baby, she is pictured with her inspiration for the event - Greg Baggott, a 17 year MND veteran with Emma's medal around his neck.

On 24 February, 2016 MND NSW Board member Kirsten Harley gave a speech at Parliament House, Canberra. This is a transcript of Kirsten's speech in which she talks about how MND has impacted her and her family's life.

I wish to acknowledge the traditional owners and custodians of the land on which we meet today and pay respect to their elders, past present and future.

Each of the 2094 Australians living with MND has a story about the personal impact of MND. I'm Kirsten and my story starts four years ago in 2012.

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