AFL legend Neale Daniher wasn’t 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.
“They don’t tell you right then about the prognosis,” Daniher says, “but it’s not hard to find out.”
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’s 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’s day.
“It’s a devastating disease and there is currently no cure,” says Professor Steve Vucic, Director of Neurophysiology at Westmead Hospital and the study’s co-chief investigator. “We want to investigate whether this drug will have an impact on the disease progression and, importantly, on quality of life.”
The trial will include up to 150 patients at clinics across the country.
“Part of motor neurone disease is that there is inflammation of the brain,” says co-chief investigator, Professor Matthew Kiernan, Co-Director of the University of Sydney’s Brain and Mind Centre. “The 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?”
Daniher says the trial is “thanks to the people of Australia – in particular those who got behind The Big Freeze”, as well as funds from the Federal Government.
“There isn’t enough funding for MND in Australia to make an impact, so we had to do something about it,” he says. “We’ve had a real focus on finding and backing the best and brightest researchers in the country.”
In Australia, at least two people are diagnosed with motor neurone disease every day. Symptoms often begin innocuously – cramps, tight muscles, slurred speech – but eventually the muscles weaken and waste away, leaving sufferers paralysed. 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.