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FightMND funds landmark medical study at University of Sydney

21 December 2017
$4.75m for motor neurone disease clinical trial
University of Sydney is leading a nationwide clinical trial to investigate a drug which could help stop the progression of motor neurone disease.
Neale Daniher and Matthew Kiernan

AFL legend Neale Daniher and Professor Matthew Kiernan

AFL legend Neale Daniher wasn鈥檛 sure what was wrong when he started feeling a weakness in his fingers four years ago. When his neurologist told him he had motor neurone disease, the news was devastating.

鈥淭hey don鈥檛 tell you right then about the prognosis,鈥 Daniher says, 鈥渂ut it鈥檚 not hard to find out.鈥

Typically, life expectancy with motor neurone disease is only 27 months. There is no cure. Now an Australian clinical trial will investigate whether a drug already on the market for a different disease could have an effect on the progression of MND.

The drug is the focus of a nation-wide clinical trial led by researchers at the University of Sydney and Westmead Hospital.

The trial is possible thanks to a $4.75 million research grant from FightMND, an organisation that supports research and raises awareness about the illness, for which Daniher serves as Vice Chairman.

The money was raised through FightMND鈥檚 annual event at the MCG, The Big Freeze, as well as some other campaigns. This year The Big Freeze saw sporting stars including Lleyton Hewitt, Andrew Gaze, Adam Gilchrist and Alisa Camplin making the plunge into a pool of icy water on a winter鈥檚 day.

鈥淚t鈥檚 a devastating disease and there is currently no cure,鈥 says , Director of Neurophysiology at Westmead Hospital and the study鈥檚 co-chief investigator. 鈥淲e want to investigate whether this drug will have an impact on the disease progression and, importantly, on quality of life.鈥

The trial will include up to 150 patients at clinics across the country.

鈥淧art of motor neurone disease is that there is inflammation of the brain,鈥 says co-chief investigator, , Co-Director of the . 鈥淭he question is, if we could reduce that inflammation and try to protect the neurones and nerves, could we either stop progression or turn the disease off?鈥

Daniher says the trial is 鈥渢hanks to the people of Australia 鈥 in particular those who got behind The Big Freeze鈥, as well as funds from the Federal Government.

鈥淭here isn鈥檛 enough funding for MND in Australia to make an impact, so we had to do something about it,鈥 he says. 鈥淲e鈥檝e had a real focus on finding and backing the best and brightest researchers in the country.鈥

In Australia, at least two people are diagnosed with motor neurone disease every day. Symptoms often begin innocuously 颅鈥 cramps, tight muscles, slurred speech 颅颅鈥 but eventually the muscles weaken and waste away, leaving sufferers paralysed. 颅Only 20 percent of patients survive longer than five years.

Neale Daniher AM played for Essendon Football Club for eleven years. He coached Melbourne Football Club between 1998 and 2007 and held coaching positions at Essendon, Fremantle and West Coast. He was diagnosed with MND in 2013.

Professor Steve Vucic from University of Sydney and Westmead Hospital.

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