Despite the challenges of his own battle with motor neurone disease (MND), Associate Professor Justin Yerbury is continuing the fight against the debilitating illness and is now the face of a University of Wollongong appeal to support his research

The IHMRI molecular biologist is now confined to a wheelchair but continues to press ahead with work to find a treatment, and one day a cure, for MND. 

An Australian Story documentary on Professor Yerbury’s life, The Enemy Within, aired on ABC TV in March this year, inspiring thousands of viewers with the story of his journey from professional basketball player to neuroscientist. 

The Enemy Within was the second highest rating episode of Australia Story this year.

On November 5 an updated version of the program, No Surrender, went to air, documenting Professor Yerbury’s return to work following life-prolonging surgery earlier this year. 

MND causes progressive degeneration of motor neurones in the brain and spinal cord.

People with the disease progressively lose the use of their arms and legs, their ability to speak, swallow and breathe. 

Approximately 2,000 Australians are living with MND.

From diagnosis, their life expectancy can be counted in years or even months with the fingers on one hand. 

In a minority of cases, around 10 per cent, there is a genetic link to the disease with members of the same family developing it.

For most people diagnosed with MND, however, the disease takes hold without warning. 

Professor Yerbury’s interest in MND began when several members of his family were diagnosed with it.

In one six-week period his mother, grandmother and aunt all died from the disease.

He has also lost a sister, an uncle and a cousin to MND.. 

In order to better understand the disease, Justin undertook a Bachelor of Science degree at the University of Wollongong (UOW), graduating with first-class honours in 2004, and going on to receive a PhD from UOW in 2008. 

He now leads a team of scientists at IHMRI that is researching neuro-degeneration and MND.

In May 2016, Professor Yerbury was diagnosed with MND. 

“What drives me is not the fact that I’ve been diagnosed with this disease – it’s trying to wipe this thing off the planet,” Professor Yerbury said. 

“MND has taken away my ability to walk, talk, move and breathe on my own – but it has not taken away my mind, my passion for research, or my determination to see MND as a treatable condition rather than a death sentence.” 

The work of Professor Yerbury and his team focuses on understanding the molecular events that trigger MND. 

They have found that the way motor neurons handle their protein balance is a key factor in MND. 

Senior Research Assistant Natalie Farrawell is part of Professor Yerbury’s team at IHMRI and shares his dedication to finding a way to treat the disease. 

“Every piece of information gained from our research helps us better understand what’s happening in MND and is an important step towards finding a cure for this insidious disease,” Ms Farrawell said.

“The next step is to translate that information into therapies and develop drugs that could slow the process of motor neuron disease.” 

Testing potential therapies is a lengthy and expensive process, however, and one that is difficult to get funding for. 

“We rely heavily on funding from philanthropic donations to keep this work going,” Professor Yerbury said. 

“Donations will get us closer to testing our ideas in pre-clinical trials, and closer to having a new therapeutic strategy for MND.”

The MND Research Appeal aims to raise $30,000 to help Professor Yerbury and his team test ideas in pre-clinical trials.

Watch No Surrender

ABC iview (Broadcast 8:00pm Monday 5 November 2018)

Make a donation to the UOW Appeal


Related stories

Justin Yerbury MND travel scholarships announced

Media coverage


No surrender: Justin Yerbury defies the odds to continue his ground-breaking research into MND

Calls for changes to NDIS scheme to better assist those with MND

Top photo: Associate Professor Justin Yerbury. Photo by Mark Newsham.

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