'It doesn't have to be that way': Aussie pair push for national MND database

Ron Hobden had it all at age 35.

He ran marathons and played footy with his mates, all while juggling his job and a beautiful young family.

But then he was struck down when he was diagnosed with Motor Neuron Disease (MND).

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It was a similar story for 41-year-old Sharon Kirkwood, who has an adoring husband, two beautiful children and loved a run around on the netball court.

"It's heartbreaking the impact this has had on my family, especially my husband, sons and parents, " she told A Current Affair.

"It's not only my life that has been destroyed, theirs has too."

Now the pair is fighting to make the most of every day, as well as lobbying for a national database to collate information about MND cases.

"If the registry had already existed those first overwhelming and terrifying six months could have been streamlined and made so much easier," Kirkwood said.

"I'm now seven years into my journey ... I do wonder how much closer to a cure we would be if the type of data that a national registry would provide was already available.

"Right now MND is a death sentence, but it doesn't have to be that way," Ron said. 

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