Family man fighting disease



By Fran Metcalf

A family history with the deadly disease Motor Neurone Disease led Justin Yerbury to search for a cure.

Justin Yerbury is doing it for his mum. And his sister. And his uncle and his cousin.

He’s doing it for all of his relatives who are living with or have died from motor neurone disease.

He’s also doing it for himself because he too could have the mutated gene which causes the progressive, muscle-wasting disease.

The Wollongong scientist is hoping to find a cure for the deadly condition and save his family, as well as the 1400 Australians who are living with MND each year.

“The first I’d heard of MND was when my uncle died in the early 1990s,” he says. “At that stage, we didn’t know it would affect the wider family. My cousin was then diagnosed in 1995 and he died; he was only 21. Then, in the late 1990s, mum started having trouble with her legs.”

Mr Yerbury started looking for answers.

“I was really struck that I was so helpless to do anything,” he says.

“I spent a lot of time on the internet and there was no cure or anything that was going to help them. I couldn’t understand the scientific literature so I couldn’t form my own opinion.

“I went back to the University of Wollongong and walked in to the office of the dean and told him I wanted to do a course so I could understand it more and then research a cure.”

And that’s exactly what Mr Yerbury did.

Having grown up with his two sisters in Oak Flats, just south of Wollongong, Mr Yerbury completed a commerce degree at the University of Wollongong, majoring in marketing, after finishing high school.

When he couldn’t find a job without experience, he started working in his parents’ Australia Post franchise.

Seven years later, his dad sold the business to care full time for his mother who was becoming increasingly disabled by MND.

By then, Mr Yerbury had enrolled in a biological sciences course with a plan to finish the degree and then start researching.

“It’s a difficult field. In order to do research, you need to do a fourth year and get good marks,” he says.

“I was married and had two small children but I managed to get through to honours and then I got a scholarship to do my PhD.”

It was while he was doing his post-doctorate that his sister was diagnosed with MND.

“Every time I have a family member diagnosed with MND, it’s another huge blow and I feel the same helplessness as when my cousin died,” he says.

“When my sister died, I was at the stage where I knew what the best potential drug on the market was but it didn’t have any effect for her.

“Even now, there’s one drug on the market which extends life span for a few months but it doesn’t seem to be very effective.”

One he’d finished his PhD, Mr Yerbury waited for funding for his research; this year, his wish finally came true.

“I’ve been awarded a fellowship from the Motor Neurone Research Institute of Australia, a three-year post-doctoral position,” he says.

“I’m working in conjunction with University of Sydney professor Iain Campbell, who’s trying to look at the cells in the brain and the response to those aggregates of protein we find in MND. These clusters are a characteristic trait of MND and they’re found inside motor neurones, but no one knows if these are causing MND or are a symptom of it. My theory is they are probably a cause.” MND is a difficult disease to understand, striking at various ages and ravaging bodies at different speeds.

While Mr Yerbury’s cousin died at the age of 21, his grandmother, who also had MND, lived into her 70s. His mother lived for three years with the disease but his sister died at the age of 26, just 12 months after diagnosis.

The first symptom his mum experienced was a drop foot – an inability to lift her toes when walking – but eventually the MND moved throughout her legs, arms and body.

“For some people, the first sign they have it is trouble doing up buttons because they lose control of their hands, but some people lose their voice or their ability to swallow first,” he says.

“It seems to affect the extremities first and then there’s progressive loss of muscle function because the motor neurones that control muscle movement die.

“Most people with MND die because they are no longer able to breathe because the muscles can’t support their chest cavity.”

While 90 per cent of people with MND have no familial connection, Mr Yerbury says the strand in his family is hereditary.

“The gene we carry is responsible for about 20 per cent of familial cases and it’s a 50/50 chance you will inherit the gene but in my mother’s case, seven siblings out of eight inherited it,” he says. “Some have not had any symptoms yet. One is living with MND at the moment and several others have already died.”

Article by The Courier Mail, May 1, 2010.