Deb Bailey Centre Declares War On MND

15 Jan 2014

It opened with as close to a dare as is possible in scientific circles.

The dean of medicine at Macquarie University, Simon Foote, said to the team of five researchers at the Deb Bailey Motor Neurone Disease Research Centre they had one “key performance indicator”: to develop a new drug for treatment of the often fatal disease within five years.

NSW Governor Marie Bashir joined university Vice-Chancellor Bruce Dowton and Deb Bailey Foundation president Robyn Paine last night to officially open the $10 million Sydney laboratory which it is hoped will transform research into the disease, which kills one person every day. Professor Bashir praised the “brilliant and committed” researchers, including Roger Chung, for their efforts so far.

“This cruel condition needs to be brought under control,” she said. “I have no doubt if Deb Bailey were here she would view this with happiness and be immensely proud.” Deb Bailey, after whom the foundation is named, died from MND in 2001 aged 48. She made it her last wish, even when she was no longer able to speak, that the disease be brought to heel. Her husband David Armstrong, a former editor-in-chief of The Australian, and daughter Claire, were on hand to witness the next solid advance in the fight.

“It just goes to show that no matter how long it takes, some truly wonderful things can emerge from tragic events,” Mr Armstrong said. “It’s an absolutely terrible disease and she didn’t want anyone else to experience it.” The centre was a “critical and potentially life-saving institution”, according to Professor Dowton the research centre would focus on the genetic mutations that cause MND and attempt to figure out precisely how these mutations cause the death and decay of motor neurons, which enable people to move.

The laboratory, which now has a team of about 20 including the five lead researchers, uses some of the best technology in the world to hunt for a cure. Human motor neurons are synthesised in culture dishes, where mutated genes and their resulting proteins are administered to find out how the amassing proteins cause the neurons to decay. The 10,000 zebra fish in the lab — translucent creatures whose muscular and neural networks function almost identically to humans are used to “express” faulty genes in their offspring, enabling the researchers to test therapies and treatments.

There are two forms of the disease, the hereditary version and “sporadic”, for which there is no known cause. “There are 20 of us and it leads to an amazing discussion of ideas about how to tackle the disease,” Professor Chung told the audience of more than 100. “It enhances the focus, intensifies the effort and because we’re all working together and not against each other, this centre eliminates competition.” Ms Paine was overwhelmed at the recent speed of progress.

“We know there will be breakthroughs, and in any case Roger, you’ve already been given five years,” she said. Professor Chung said MND was first articulated as a disease in 1869 but the first major discovery in how to tackle it didn’t come until 1993, and the only drug to help manage the disease was developed in 1996.


– June 7th, 2013, Rick Morton, The Australian


Click here to read about who MND effects.

Click here to read about the statistics of MND in Australia and Internationally.

Click here to read more about how The Deb Bailey Foundation Research Centre is helping find a cure for MND.



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