Professor Justin Yerbury is 99 per cent paralysed from motor neurone disease and can move only his eyes, but this hasn't stopped him from recording his remarkable life story.
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The renowned Wollongong molecular biologist, whose research is leading the way to find a cure for the disease which has already killed several members of his family, will in June publish a memoir written entirely with eye-tracking software.
It tells the story of how he went from being an Illawarra Hawks basketball player with little interest in science, to watching his mother, grandmother and aunt die from MND in the space of six weeks.
Making good on a promise to his mum that he would do everything he could to find a cure, he has become one of the world's leading authorities on the incurable disease.
Seven years after he was diagnosed with MND, he remains the driving force behind his University of Wollongong lab as it researches the disease and tests potential cures.
The book, Fighting Fate, and Prof Yerbury's contributions to medical research were celebrated on Monday at a UOW event, where colleagues and family had the chance to publicly acknowledge his achievements at an online broadcast.
One speaker, friend and colleague Christen Chisholm, described the extraordinary trajectory of Prof Yerbury's career, and his "dedication, commitment, resilience and intelligence" to finding a cure.
"I first met Justin in 1991, long before [the gene related to MND] was found or we knew that motor neurone disease affected families and that some people had a genetic reason for it," she said.
"He had just finished high school and he was going off to uni to study commerce and be a professional basketballer, and he met my friend Rachel and not long after that, married her and had his two beautiful girls.
"Over the next 25 years I watched his journey - from understanding that his family were affected by this disease that we knew very little about, to trying to understand it by going back to uni to study science, to becoming this world renowned leader in the field."
"In all that time, I was blown away by his dedication, his commitment, his resilience and his intelligence.
"But it wasn't until 2018 when he chose to be ventilated in order to continue his work fighting this dreadful disease that I realised how deep his strength really was."
Five years ago, Prof Yerbury underwent a tracheostomy and laryngectomy, and started using a life-saving mechanical ventilator to breathe for him. Without the operation, which also took his speech, he would have had months to live.
Since then, using the tablet-mounted device that tracks his eye gaze and allows him to speak via his own computer-generated voice, he's published several dozen research papers and remains the brains behind his world-leading UOW lab.
He was also awarded a Member of the Order of Australia in 2020 for his work, and last year received the prestigious Eureka Prize for science.
Ms Chisholm said Prof Yerbury's dedication to continuing his work despite significant health challenges had inspired her and many others.
"At the time [of his operation] I was leading a fairly comfortable life as a high school science teacher, but I was so inspired to be a part of his fight that I decided to come back," Ms Chisholm said.
"To Justin today, I want to say to you that we see your superhuman strength, you have inspired all of us, you inspire all of us every day to work with you."
Other colleagues, like Dr Isabella Lambert-Smith gave a glimpse into the work being done in the Yerbury lab, including possible cures "which sound like science fiction".
She said the lab was investigating one of Prof Yerbury's ideas, to see whether it was possible to convert sensory neurons into motor neurones to allow people with MND to regain some ability to control their muscles.
"Up to 80 per cent of a person's motor neurones have degenerated by the time they are diagnosed, so Justin realised that in addition to finding ways to save motor neurones that still exist in a person, we also need to find ways to replace the motor neurones that have degenerated," Dr Lambert-Smith said.
"Justin came up with the idea of investigating if we can use sensory neurons, which are unaffected in MND, to convert into motor neurones.
"This might sound like science fiction, but this process of cell transdifferentiation - which means converting one cell type directly into another cell type - is an area of research that has arisen in recent years.
"This forced conversion can be achieved using a combination of chemical cocktails and by modifying the activity of certain key genes."
Groundbreaking science aside, she also acknowledged his kindness, resilience and generosity to the colleagues he has mentored, and his ability to bring together researchers from around the world to collaborate on finding a cure.
"Justin has challenged traditional perspectives in the MND research field and has significantly advanced our understanding of MND... we all see Justin as a leader and a beacon," she said.
"He has brought together and trained up so many different scientists to work on MND and his family's journey with MND and his journey to becoming a leader in MND research, his kindness and his resilience and his generosity to all of us that he has mentored in his team, are truly remarkable.
"I think it's safe to say that our lives and our perspectives have been changed for the better because of him."
With his computer generated voice, Prof Yerbury read an except from his book during the event, while his wife Dr Rachel Yerbury presented him with an award from the university and said he husband had "shone the light of hope" for their family and all people living with the disease.
"Since his diagnosis, Justin has also fought against disadvantage and illuminated ableism as he's lived his life to the fullest and continued his research," she said.
"Justin's courage to overcome obstacles to continue working, to write his memoir, to stay with our family and simply to keep living have been victories of mammoth proportions."
She said UOW and his lab team had "enabled him to live and work with purpose and dignity".
"We hope that today you have been inspired to see what can be achieved when you combine a true fighting spirit with a supportive and loving community," she said.
The book will be released on June 13 through Affirm Press, with all proceeds going to Fight MND.
Kate McIlwain
For more than a decade, I've helped the Illawarra Mercury set the news agenda across the region. Currently I'm the paper's health reporter - covering the stories of Illawarra workers and residents in the wake of a global pandemic and at a time where our health systems are stretched to the limit.
For more than a decade, I've helped the Illawarra Mercury set the news agenda across the region. Currently I'm the paper's health reporter - covering the stories of Illawarra workers and residents in the wake of a global pandemic and at a time where our health systems are stretched to the limit.
