Alison Byrnes (Cunningham, Australian Labor Party) Share this | Hansard source

I rise tonight to pay tribute to a friend and local Illawarra hero, Professor Justin Yerbury AM, who passed away peacefully at home last Friday surrounded by his beloved wife, Rachel; and daughters, Talia and Maddison.

Over the past 30 years of working in our community and in our parliament, I have had the great privilege of meeting many accomplished and inspiring people, so I don't say this lightly: Justin and Rachel are two of the most inspiring people I have ever met. Twenty-five years ago, Justin's uncle and cousin developed motor neurone disease, MND. A few years later, he lost his grandmother, mother and aunt to MND within a matter of weeks. This immense loss amongst his own family inspired him to radically change his career, from pro basketballer with the Illawarra Hawks to a world-renowned medical and biology scientist.

Justin began studying in 2001, completed his PhD in 2008 and went on to become an esteemed professor of neurodegenerative diseases at the University of Wollongong. Justin's career was astounding, and he received numerous awards and commendations for his groundbreaking research and advocacy. In 2016 Justin was himself diagnosed with MND. In 2020 he was awarded a Member of the Order of Australia, AM, for his contribution to MND research.

Justin and his wife, Dr Rachel Yerbury, an accomplished academic in her own right, often collaborated at the intersection of psychology and biology. The 2021 paper Disabled in academia: to be or not to be, that is the question explored the real-life issue of diversity disclosure within academia. They found that, while some institutions are supportive, the culture of ableism, stigmatism and the disabling barriers make disclosing disability a complex and difficult decision. Whilst they were writing this paper they even prompted changes to the National Health and Medical Research Council's grant application policy to ensure people with disability were afforded equal access to funding. In an interview with ABC Illawarra in December 2020 about the NHMRC policy battle, Justin said:

… I would like to be remembered as a person with resilience who worked hard to make a difference by being the best I could be.

Justin, you have definitely achieved this.

The University of Wollongong were quick to honour Justin's significant contribution to MND research and continue his legacy by establishing the Justin Yerbury Chair in Neurodegenerative Diseases. This fund will allow his research to continue and hopefully one day find a cure for MND, something Justin worked towards for most of his life. In 2022, Justin was awarded the prestigious University of New South Wales Eureka Prize for Scientific Research, the New South Wales Premier's Prize for Science and Engineering, and the keys to the City of Wollongong for his significant achievements in the research of MND and for his inspiration and determination while living with a disability.

Justin and Rachel were an unstoppable force. They were fierce advocates for people with disabilities and, through their own battles and profile, tried to ensure that others did not have to go through the same thing, all while both achieving so much in their personal and professional lives. I fought alongside them on their journey many times through battles they should never have had to have, and I will be forever inspired by their tenacity and courage. In 2019 the family booked a cruise with family and friends. They completed the medical forms, hired two care workers to come along and paid thousands of dollars to courier medical equipment to the ship, only to be turned away on the wharf. I saw Justin shortly after, and he mentioned that he had been invited to present at a medical symposium in Perth. I told him to let me know the details and I would make sure that never happened again. He emailed me a week or so later.

One of the things I loved about working for Labor members of parliament was the compassionate and hard-working people you meet that then go on to work in so many different areas. I rang my good friend Moksha Watts, who was then at Qantas; explained Justin's experience and his plans for Perth; and asked her, 'How do we make this happen?' Moksha cares deeply about helping people. She's tenacious and solutions driven, and she said, 'Leave it with me.' Over the following months, Qantas aviation health doctors worked with Justin's specialist and conducted several trials with Justin and his physio and nurse. Qantas went to great lengths to ensure that Justin was able to present at the symposium in Perth and finally have a holiday with his family. This isn't just important in the context of getting Justin Yerbury to Perth; this was an investment in accessibility. Because of Justin and Rachel's determination for Justin to be able to live his life to the fullest and for our society to benefit from his research, Qantas now has the expertise and experience to assist other passengers with complex needs to be able to access flights in the future.

Justin, I will miss you. Our community will miss you. My heart is breaking for your beautiful family, many friends and colleagues, who I know will miss you deeply. Thank you. Rest in peace.

House adjourned at 20:01

See this speech in context