31 July 2023

Justin Yerbury's lasting legacy: The fight to find a cure for MND will continue

| Keeli Royle
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Professor Justin Yerbury at UOW.

Professor Justin Yerbury has passed away at the age of 49 from MND. Photo: UOW.

The University of Wollongong will honour the legacy of the late Justin Yerbury by ensuring the vital research into motor neurone disease (MND) to which he dedicated his life continues, after the influential and inspirational researcher lost his battle with the debilitating disease.

From a basketballer from Oak Flats to one of the world’s leading scientists, Professor Yerbury turned his experiences of loss and devastation with MND into determination and progress.

A genetic mutation caused MND to become a shattering reality for Justin’s family and throughout his life he saw his mother, sister, grandmother, cousins, aunts and uncles all suffer the fatal consequences of living with the incurable condition.

But a promise he made to his mother that he would do everything possible to cure the disease saw the molecular biologist lead the fight against MND, even after his own diagnosis in 2016.

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“Justin Yerbury transformed his personal adversity into a mission of positivity – his groundbreaking research that has provided valuable insights and optimism for many affected by MND,” UOW Vice-Chancellor and President Professor Patricia Davidson said.

His research earned him recognition across the globe, with local accolades including winning the prestigious University of New South Wales Eureka Prize for Scientific Research, being recognised as a member of the Order of Australia, and given the keys to the city.

UOW’s Executive Dean of the Faculty of Science, Medicine and Health Senior Professor Eileen McLaughlin said it wasn’t just his research that made an impact, but also his work with staff and students.

Justin Yerbury and family with Stephen Hawking in 2017.

Justin Yerbury and his family met Stephen Hawking in 2017, a year after Justin was diagnosed with MND. Photo: Supplied/Affirm Press.

“He was more than a scientist and leader; he was a mentor, a source of inspiration, and a friend,” she said. “We learned more from him than science, he taught us the true meaning of resilience and the power of hope.”

That resilience was shown repeatedly, not only through his health battle, but through breaking barriers and improving accessibility to research funding for people with a disability, and even writing a memoir completely through eye-detection software.

UOW is now establishing the Justin Yerbury Chair in Neurodegenerative Diseases to continue his vital research to understand and treat MND and other neurodegenerative diseases.

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And although Justin is celebrated for his mind, he was driven by his heart.

In his memoir Fighting Fate he said that while his research was the thing that motivated him through the hardest and darkest days, it all came back to those he loved most.

“But the engine that drives my compulsion has always been family. More broadly, across the wider family I feel a kind of responsibility to keep working towards a therapy. We have already lost too many. More importantly, I promised my mother that I would do everything I could. I promised my sister Sarah that I would protect her kids. And I promised myself that I would keep working until I had used up every shred of energy I had.”

Justin Yerbury, wife Rachel and two daughters Maddy and Talia.

Justin Yerbury with wife Rachel and daughters Talia and Maddy in 2000. Photo: Supplied/Affirm Press.

Justin passed away on Friday 28 July surrounded by family, at just 49.

He is survived by his wife Rachel and daughters Talia and Maddy.

“I experienced joy but also sadness. I felt jubilation but also pain. I made mistakes but I learned from them. I loved and was loved. And as I step into the twilight of my life, I have one thing left to leave you with and that is hope,” he wrote in his memoir.

The community can donate to the Justin Yerbury Chair in Neurodegenerative Diseases and help continue his research through the UOW Website.

A memorial service will be held at 11 am, Wednesday 2 August at UOW’s University Hall.

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