Anyone who watched the 2018 ABC TV Australian Story about Professor Justin Yerbury will remember him: the basketball player turned scientist who embarked on a personal crusade to find a cure for Motor Neurone Disease, which he discovered ran in his family.

Undaunted by his own diagnosis in 2016 and the inevitable ravages it would bring, Professor Yerbury retrained in molecular biology to arm himself with the best understanding of the enemy within. Not yet 50, today he holds the position of Professor of Neurodegenerative Disease at the University of Wollongong (UOW). He was awarded an AM in 2021 and last year he was awarded science’s highest honour, the Eureka Prize for Scientific Research.

Recently UOW held a special event to honour Professor Yerbury: a gathering, via Zoom, of his colleagues and team of 17, including PhD graduates, who clearly adore him, to speak about the pioneering work they have been able to achieve under his leadership, leading to a clearer understanding of MND, its causes and possible cures. As one team member put it: “Our lives have been changed for the better by him.” Under his guidance, UOW has been successful in applying for international funding to conduct research that sees it punching above its weight in this field.

His wife Rachel, whom he met when he was a shy teenager, also spoke about her husband’s remarkable determination, even as the disease continued to paralyse him.

As if his scientific achievements were not enough, now he has gone one better and written a book, a personal account called Fighting Fate. And being Professor Yerbury, he did not write it conventionally. Now 99 per cent paralysed, he wrote the memoir with eye-tracking software – describing his idyllic childhood growing up in a modest family in Oak Flats where he did not exactly excel at school, his time playing for the Illawarra Hawks, his meeting with Rachel and the terrible dawning realisation that his family was being gradually felled by a mysterious disease. It took his uncle, his cousin and then, in a six-week period, his mother, aunt and grandmother. His sister died a few years later.

Like fellow MND sufferer Stephen Hawking, whom he met in Cambridge, Professor Yerbury has defied the odds to live much longer than most with MND: life expectancy from diagnosis is usually 27 months. And he has not wasted a second, even managing to go on logistically challenging holidays with his wife and two daughters, including a memorable safari in Africa. He also persisted with his passion for mountain bike riding against the advice of his doctors.

The word hero seems inadequate to describe Professor Yerbury’s courage and commitment, but for now, it will have to do. A cure can’t come soon enough.

Fighting Fate is published on June 13 by Affirm Press. All proceeds will go towards the fight to cure MND