Australian Story – Monday March 26, 8pm, ABC and ABC iview
"If you were to design the worst possible disease, it would be motor neurone disease. It is a progressive, unstoppable, relentless, arsehole of a disease." Professor Dominic Rowe, neurologist
"Obviously what we're going through is very hard and it is tragic but I don't want this story to be a tragedy." Dr Justin Yerbury, MND researcher
Dr Justin Yerbury is a world-renowned researcher into motor neurone disease. But as he was building an international reputation, there was something only those closest to him knew. He carried a gene mutation that meant he would eventually develop the disease.
Most cases of MND occur randomly but 10 per cent of cases are inherited, as in Justin's case. Spurred on by the death of many family members, including his mother and younger sister, he abandoned a professional basketball career to study science and become a MND researcher.
Justin's contribution to finding a treatment or cure has been recognised internationally but time is running out. In mid-2016 he began to develop symptoms and in the last six months his condition deteriorated dramatically.
Australian Story has been filming Justin as he faced difficult decisions in his quest to stay alive – for his family's sake and to continue his research.
"I need to see this disease beaten into submission before I leave this world," he says. 'That's what drives me. It's not that I have the disease – it's trying to wipe this thing off the planet."
Having met Justin in 2016, Professor Stephen Hawking recorded the introduction to this story shortly before his recent death from motor neurone disease.