When Professor Justin Yerbury’s uncle was diagnosed with motor neuron disease (MND) in 1994 he, and his family, knew nothing about the condition.
With a need to find out more, particularly why there were no drugs that could slow its progression, Prof. Yerbury enrolled in some biology classes at the local university. Twenty-six years later and he is now a professorial fellow in neurodegenerative disease at the University of Wollongong and the Illawarra Health and Medical Research Institute.
“If you had told me when I was 25 that in the future I would be a professor with a I would not have believed you,” he told Insight.
MND is a fatal that causes motor neurons - the pathways between the brain and muscles - to degenerate and die. The disease develops when proteins in the body become misshapen, clump together, and block the pathways. MND progresses quickly and leaves patients unable to walk, talk and eventually breathe.
Four hundred new sufferers are diagnosed each year, but the number of existing patients remains low due to the rapid mortality caused by MND. There is currently no known cure or effective treatment for the condition.
Justin lost his grandmother to MND along with his uncle, sister, and mother. Source: Supplied
It was whilst undertaking his study that Prof. Yerbury lost numerous family members to the disease.
“During this 10 years of training I was helpless as we lost several family members including my grandmother, my mother and even my sister before I had even started my actual MND research,” he said.
“It left me feeling utterly hopeless. Each time we lost someone I had to pick myself straight back up and channel the hurt, anger and fear into my study.”
It wasn’t until Prof. Yerbury’s mother was diagnosed with MND that he realised he had a 50/50 chance of inheriting the MND-related genetic mutation. People who have the MND-related genetic mutation have a high chance of developing MND during their lifetime. When someone will get it is still unpredictable.
While on a work trip to New York in 2016, the first signs of MND began to show in Prof. Yerbury in the form of a loss of strength in his thumb.
“Even in the moments leading up to the confirmation of my diagnosis I thought that there was a slim chance that it was not MND.”
Prof. Yerbury said his world crumbled around him when doctors confirmed his fears.
“After the initial devastation there was a period of calm, after all, I felt normal except for my thumb so I was immediately back to work the next day."
“In the next six months I would lose the function of most of my right arm.
“In early 2017 my condition rapidly deteriorated, I could no longer look after myself and it was becoming too much for my family and friends so we started organising care.”
Justin is still working full time and has no intentions of stopping. Source: Insight
By the end of 2017 doctors told Prof. Yerbury he had only months left to live. In order to prolong his life they performed a laryngectomy on him, and put him on mechanical ventilation. This, they said, would extend his life by years, maybe even decades.
“I chose to have mechanical ventilation so that I could continue my research and so that I could spend more time with my family,” he explained.
Today, Prof. Yerbury manages his MND with the help of his family and carers – which he requires around the clock.
Prof. Yerbury uses his eyes to control a computer that’s hooked up to his chair. He can also convert typed words into audio format. In this way he’s able to communicate with those around him. He has also retained the use of his thumb so he is able to control his mobile phone.
“I would say that my life is very different from what I thought it would be but I still lead a fulfilling life.”
“As with the majority of MND the other functions of the brain are not affected so despite my body wasting away my mind has stayed sharp.”
Far from letting his disease keep him confined at home, Prof. Yerbury is still working full time and has “no intention of stopping”.
Just recently Prof. Yerbury received a $1 million Drug Development Grant to further his research into MND, which focuses on a potential new therapeutic strategy.
Prof. Yerbury said the grant will fund a post-doctoral researcher and a research assistant, to test a combination therapy that they hope will be effective in familial and sporadic MND.
Prof. Yerbury and Dr Luke McAlary were also awarded a $250,000 Impact Grant over two years to investigate the deposits that cause MND.
“I hope that in my lifetime that we see a cure for MND.”
“I believe that we are close to seeing drugs that will have real effects on the disease but my real hope is to see a cure.”
