INTRODUCTION: Hello, I’m Justin Yerbury. My quest to find a cure for motor neurone disease first featured on Australian Story earlier this year. I’ve got the disease myself and chose to have life-saving surgery so I could spend more time in the lab and with my family. Since then there have been some meaningful developments …

Justin Yerbury delivering lecture: The motor system of each of us in this room controls our muscles. And it does this by sending impulses or signals from our cortex at the top of our brain all the way down to the tip of our toes and the tips of our fingers, just like this puppet.

ISABELLA LAMBERT-SMITH, PHD STUDENT: I remember Justin giving a lecture on motor neurone disease.

Justin Yerbury delivering lecture: If we cut those lines of communication between the controller and the limbs, you see that falls limp and we can no longer control it.

ISABELLA LAMBERT-SMITH, PHD STUDENT: He's got this sort of almost like childlike wonder for the world, this insatiable curiosity.

Justin Yerbury delivering lecture: If we do that to each of these you can no longer control any of the movement of this puppet. And that’s exactly what happens in motor neurone disease.

DR KARA VINE-PERROW, FRIEND AND COLLEAGUE: Justin would be considered a national leader but he's also very well regarded internationally.

ISABELLA LAMBERT-SMITH, PHD STUDENT: I was amazed when I first found out that Justin didn't initially have a background in science. There are a lot of inherited diseases in different families but people don't usually decide to go and start investigating the causes of it themselves.

RACHEL YERBURY, WIFE: I used to always think how do you work on the same disease and talk about it as a professional when it's had such a personal impact.

DR JUSTIN YERBURY: I am not going to stop working until we have something that will treat this disease. And I think that we're close. It's trying to wipe this thing off the planet, really.

TITLE: No Surrender

DR JUSTIN YERBURY: Over the last few years, I've obviously spent a lot of time in the lab or travelling and meeting colleagues, and it's something that the family might have looked back and wanted to spend more time with me, but at the same time It just wouldn't have been me. They are spending a lot more time with me at the moment. So, yeah, I really cherish that time.

RACHEL YERBURY, WIFE: Justin had already embarked on his MND research and career when he realised that he was carrying the gene for motor neurone disease. The family just felt like, how much more can we cope with

PROFESSOR DOMINIC ROWE, NEUROLOGIST: Some people, when they see trouble, put their head in the sand. That's not Justin. He rolled up his sleeves and went to work. That courage is remarkable.

DR KARA VINE-PERROW, FRIEND AND COLLEAGUE: I think having limited time does motivate you to achieve more.

DR JUSTIN YERBURY: 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: I was born in Wollongong in 1974 and then I had a sister, Naomi, and a younger sister, Sarah. She was the real baby in the family.

NAOMI COCKSEDGE, SISTER: Justin was always the one to have to look after us. School discos, he never wanted to go, but he had to go so that he could watch us.

RACHEL YERBURY, WIFE: School wasn't really a high priority for Justin. He spent his lunch times playing basketball

DR JUSTIN YERBURY: I did Year 12 physics poorly, so I was not much of a scientist at school. When I went to university, I was still 17. I didn't really know what I wanted to do, so I picked a Bachelor of Commerce.

RACHEL YERBURY, WIFE: But he was never really passionate about it. He was just doing it on the side while he played professional basketball.

DR JUSTIN YERBURY: I trained with the Hawks, the Illawarra Hawks and then got picked up for a couple of years and played with them you know on the end of the bench. It was a short professional career. I like to think that I was a decent player.

DR JUSTIN YERBURY: My mother has a large family, seven brothers and sisters. And one of her brothers, Kenny, was diagnosed, in 1994, with something called motor neurone disease. I had no idea what motor neurone disease was until we saw Kenny at Rachel and my wedding and he had a sling and his entire arm was paralysed.

RACHEL YERBURY, WIFE: That's the last picture of all eight of the children. And I think he died during 1996.

DR JUSTIN YERBURY: That was a real shock, and devastating, but we had no idea the implications of what was about to come.

RACHEL YERBURY, WIFE: I think it was in '97 that Justin's cousin was diagnosed as well and he died within only a few months and that hit Justin very hard, because he was very close, growing up, with Ashley.

NAOMI COCKSEDGE, SISTER: It was just unbelievable. He was 21. So then, it became almost like a ticking time bomb. Who’s it going to go off next to next.

DR JUSTIN YERBURY: What I decided to do was to have a look back through our family tree to see whether or not this was something that had been there before. At around about the same time I wanted to understand what it was that was causing this disease.

RACHEL YERBURY, WIFE: It was a puzzle, and he was like, "Well, what's going on, and why doesn't anybody know about it, and why is there no treatment for this?"

DR JUSTIN YERBURY: So I turned to the internet and started reading medical journals, but I very quickly found that, having no science background whatsoever, it was like reading a foreign language. I didn't understand a word of what they were saying.

PROFESSOR DOMINIC ROWE, NEUROLOGIST: Motor neurone disease is a disease of the central nervous system, where special cells in the brain and in the spinal cord get sick and die. Your muscles don't work. You can't move. You can't swallow. You can't talk. Eventually you can't breathe, and you die. If you were to design the worst possible disease that you could imagine, it would be motor neurone disease. It is a progressive, unstoppable, relentless, asshole of a disease.

DR JUSTIN YERBURY: Ninety per cent of all the cases of motor neurone disease in Australia are sporadic, which means randomly scattered throughout the population.

PROFESSOR DOMINIC ROWE, NEUROLOGIST: Ten per cent of motor neurone disease is inherited. And that's the factor in Justin's family.

RACHEL YERBURY, WIFE: One of my Mum's close friends said to Justin, "Why don't you go back to uni and do some biology courses, and that could help you understand all these papers you're reading, and he said, "Right, I'm going to go back to uni and study science, then."

DR KARA VINE-PERROW, FRIEND AND COLLEAGUE: Justin had to start from scratch essentially. You don't just become a motor neurone disease researcher. He-he had, you know, I guess a big mountain in front of him.

DR JUSTIN YERBURY: Yeah I was surprised at how I picked it up, I think. On the other hand, I had something driving me to understand it. But we still didn't really appreciate the tragedy that was about to unfold.

NAOMI COCKSEDGE, SISTER: In the late 90s, early 2000, um, yeah, we had numerous people die. It was devastating.

DR JUSTIN YERBURY: During a six-week period in 2002 we lost my mother, my grandmother and my aunt

NAOMI COCKSEDGE, SISTER: Mum passed away. And um, not long after, auntie Cathy passed away, and I remember going to auntie Cathy's funeral, and I couldn't get any sadder. Just lost another auntie, and I can't get any sadder. I’m the saddest I could ever be.

PROFESSOR DOMINIC ROWE, NEUROLOGIST: I've looked after members of Justin's family for 19 years. Mothers, fathers, brothers, sisters, grandmothers, aunties. Fifty per cent of the people in his family carry a faulty gene that will turn into motor neurone disease.

NAOMI COCKSEDGE, SISTER: They told us it was the SOD1 gene, and that that could be tested for.

RACHEL YERBURY, WIFE: Eventually Justin decided to have the gene test

DR JUSTIN YERBURY: It's a big decision but you have a 50-50 chance that you're gonna walk out of that room with a clean bill of health, essentially.

RACHEL YERBURY, WIFE: To our devastation that came back positive

DR JUSTIN YERBURY: To be honest, I didn't think there was going to be any other result. I wasn’t necessarily surprised.

DR JUSTIN YERBURY: So I did three years of undergraduate and then a one-year Honours project and as I was doing that, I was also being employed part-time as a research assistant. So, able to kind of spend all of my time in the lab sucking up a whole bunch of information. I got a first-class honours, which then allowed me to apply for a scholarship for a PHD. I was in the middle of doing my PhD, or towards the end I guess, when my sister Sarah was diagnosed.

(A Current Affair, 2008)

Sarah: There are moments, maybe quite a few moments, where I get a bit sad. And it’s mainly just sad. Um, yeah but. I just smile all the time. So, I don’t know [smiles].

DR JUSTIN YERBURY: That was one of the hardest ones to take, for me I think. She had two young kids and she was my baby sister.

(A Current Affair, 2008)

Justin Yerbury: In our immediate family my grandmother died when she was 72, mum was, you know, 50 odd, and now Sarah, 26, it’s seems like it’s getting younger and younger.

RACHEL YERBURY, WIFE: Justin's sister passing away really knocked the wind out of his sails.

DR JUSTIN YERBURY: It was a huge blow and of course it drove me again to kind of finish and to kind of move on, but it was devastating to know that I was working towards something and I couldn't do anything, I really couldn't do anything.

PROFESSOR DOMINIC ROWE, NEUROLOGIST: Justin doesn't care about hard work. He's seen hard, with his mom, and his sister, and his aunties. That's a blow torch on your arse and if you're not motivated by that, I don't know what’ll motivate you.

DR KARA VINE-PERROW, FRIEND AND COLLEAGUE: Once he finished his PhD, his career just took off, um, straight after that. And-and he's been achieving great things ever since.

ISABELLA LAMBERT-SMITH, PHD STUDENT: It was really a relatively short period of time he has built up a research group. He has a research lab.

(MND Ice-Bucket challenge, Wollongong University, 2014)

Justin Yerbury: The MND research team here is taking the MND ice-bucket challenge. Alright. Let’s go people. Ready.

ISABELLA LAMBERT-SMITH, PHD STUDENT: He's been able to make some fantastic connections with people overseas, some of the world leaders in research on motor neurone disease.

DR KARA VINE-PERROW, FRIEND AND COLLEAGUE: Justin is trying to understand the fundamental mechanisms that contribute to the progression of motor neurone disease.

PROFESSOR DOMINIC ROWE, NEUROLOGIST: He's made some seminal observations in how motor neurone disease spreads from cell to cell. And he's come up with unique ways of understanding why motor neurones get sick.

PROFESSOR NEIL CASHMAN, NEUROSCIENTIST, UNIVERSITY OF BRITISH COLUMBIA: Justin is regarded as the world’s expert in the application of proteostasis to an understanding of motor neurone disease.

DR JUSTIN YERBURY: Proteins are an integral part of every organ in your body, and make up most of the material in each cell. But it's critically important, that they're recycled. So we think that, in motor neurone disease, that's not happening and they're kind of just clogging up the cell.

PROFESSOR CHRISTOPHER DOBSON, BIOCHEMIST, CAMBRIDGE UNIVERSITY: What Justin realised is the fact that the spread of the disease, once it starts, results because these clumps of toxins, um, migrate from one cell to another.

DR KARA VINE-PERROW, FRIEND AND COLLEAGUE: And so Justin is trying to understand how and why these proteins build up in motor-neurones, and also how they're transferred from one motor neurone to an adjacent motor neurone, and how we might be able to intervene at that point

DR JUSTIN YERBURY: In April of 2016, I just noticed my thumb was just not acting the way it should. I kept it to myself a little while, because I don't want to be the person that sets the alarm off every five minutes. I went on a work trip and it got a little bit worse, and I thought, "Oh, no. This is it." And so when I got back, I called my doctor.

PROFESSOR DOMINIC ROWE, NEUROLOGIST: I had this dreadful sinking feeling. And he knew that I had this dreadful sinking feeling. And we did his investigations that showed he had motor neurone disease. And that was a shit day.

RACHEL YERBURY, WIFE: For the first more than a year, I guess, we were still really hopeful that it was going to be a really slow progression. We just kept doing what we were normally doing. We were active.

DR JUSTIN YERBURY: We obviously try and squeeze every moment out of every day. You know, take every opportunity, travel, do everything that we wanted to do. We've left nothing to the what ifs.

NAOMI COCKSEDGE, SISTER: They took the girls to Africa. They've also gone back to Cambridge, where Justin has previously worked as a researcher.

DR KARA VINE-PERROW, FRIEND AND COLLEAGUE: On Justin's most recent visit to Cambridge he got to meet Stephen Hawking, which was absolutely amazing.

PROFESSOR STEPHEN HAWKING, THEORETICAL PHYSICIST: Last year I had the pleasure of meeting Justin Yerbury. Justin has dedicated his life to studying motor neurone disease, the condition I was diagnosed with when I was 21. Now, sadly, he too has developed symptoms.

DR JUSTIN YERBURY: He was open and wanted to talk to me about his motor neurone disease and his progression.

PROFESSOR CHRISTOPHER DOBSON, BIOCHEMIST, CAMBRIDGE UNIVERSITY: I found it incredibly moving that they could discuss the conditions that they had and how it started and so forth. And he wanted to know everything about Justin and-and his family.

RACHEL YERBURY, WIFE: It was great seeing him meet somebody who has been so successful, not only in their career but living with MND and I think it really helped Justin to feel, um you know, "I can do this. I can keep doing this."

DR KARA VINE-PERROW, FRIEND AND COLLEAGUE: When Justin returned from Cambridge he was still quite able.

ISABELLA LAMBERT-SMITH, PHD STUDENT: It had been quite a slow progression we all felt, just slowly spreading through his right arm. Quite recently it's been a bit more rapid. And um, yeah, that's been really hard. I don't know if I've even fully processed it.

DR KARA VINE-PERROW, FRIEND AND COLLEAGUE: I remember having coffee with him in the morning and the previous day he'd been able to hold a coffee cup and the very next day he, he couldn't hold it anymore. It was, it was difficult and it was obviously a sign that the disease was progressing.

DR JUSTIN YERBURY: I think it took six months for my right arm to be entirely paralysed, but during that time, my left arm was still OK. Once I lost the use of my left arm, that meant that I was no longer independent, and that has changed everything for us.

DR JUSTIN YERBURY: When I was unable to use a keyboard, I could still use the mouse and complement that with the voice-recognition software to write all my reports and papers. But now I'm at a point where the mouse has become too difficult.

RACHEL YERBURY, WIFE: Work is very, very important to Justin because he's so driven and passionate about finding a cure and that's what's so heartbreaking is to see someone with such an amazing career trajectory to be cut down by this awful disease.

PROFESSOR DOMINIC ROWE, NEUROLOGIST: The rate of progression of motor neurone disease is something that is difficult to grab hold of. So when your first symptoms occur, when your muscles first become weak, you've lost 70% of the nerve cells talking to that muscle. The muscles and nerves cope and cope and cope and cope and cope until you've run out of fail safes and then you become weak. A year ago, Justin travelled to Cambridge, through Africa. He now can't stand.

NAOMI COCKSEDGE, SISTER: It has just gone so fast. You know in 18 months he's just lost so much to now be in a wheelchair and need 24 hours care, it's just ... it's been unbelievable how fast it's gone.

RACHEL YERBURY, WIFE: By the end of last year, Justin’s condition had deteriorated quite significantly which was quite unexpected and quite shocking. Essentially when people die from motor neurone disease they die of respiratory failure. The doctors said to us that Justin would need mechanical ventilation to help him to breathe.

PROFESSOR DOMINIC ROWE, NEUROLOGIST: We decided in the beginning of this year that Justin was going to come into hospital, and we were looking at doing a tracheostomy and mandatory ventilation.

RACHEL YERBURY, WIFE: We were advised by the doctors to also have a laryngectomy. Um, so that means that Justin’s complete larynx was removed.

PROFESSOR DOMINIC ROWE, NEUROLOGIST: If we didn't do the tracheostomy, his survival would have been limited to January or February this year.

RACHEL YERBURY, WIFE: Because we opted for the laryngectomy he is now unable to speak. And the way that he communicates is that we lip read or he uses his voice software, which he coordinates through his eye gaze on his computer.

RACHEL YERBURY, WIFE: Initially the operation went really well. After a couple of days though he started to develop a range of infections.

PROFESSOR DOMINIC ROWE, NEUROLOGIST: Justin developed an abscess in the soft tissues around where the surgery was and had to go back and have another operation.

DR JUSTIN YERBURY: We expected that I would be in hospital for 8 weeks following the surgery. In reality it would be 6 months.

PROFESSOR DOMINIC ROWE, NEUROLOGIST: Six months in hospital without one second to yourself is a form of torture – it's about as hard as it gets.

DR JUSTIN YERBURY: There were definitely some dark periods. I understand why Stephen Hawking called the period after his tracheostomy a personal black hole.

DR JUSTIN YERBURY: Coming home was a real milestone for me. I appreciated just being a part of the normal busyness of the house and of course the extra time that meant I could spend with the family.

PROFESSOR DOMINIC ROWE, NEUROLOGIST: I can't begin to imagine his relief at finally getting home. it was brilliant.

RACHEL YERBURY, WIFE: It was, you know, an opportunity for us to get on with our lives and for him to feel more connected with everybody.

RACHEL YERBURY, WIFE: We have a great group of carers and I like them all but it has been very difficult to have people in your house all the time.

DR JUSTIN YERBURY: It has been a huge adjustment for the family, and we are still getting used to it.

RACHEL YERBURY, WIFE: Just even hoisting him up, getting him in the shower and getting all the personal care stuff done as well as feeding him generally takes about four hours.

PROFESSOR DOMINIC ROWE, NEUROLOGIST: To ventilate someone at home is quite an expensive proposition because you need to have eyes on the patient at all times. You're talking about hundreds of thousands of dollars a year.

RACHEL YERBURY, WIFE: We're mainly funded through the state government Adult Home Ventilation Program. Now normally people with motor neuron disease are excluded from that.

PROFESSOR DOMINIC ROWE, NEUROLOGIST: In my mind, it's ... it's morally and ethically impossible to deny him the right to live.

RACHEL YERBURY, WIFE: The fights that we had over funding were soul destroying. I don't really feel like that they were necessary with everything else that we were going through.

DR JUSTIN YERBURY: From the day I arrived home I was planning my return to work. It was not an easy task, but now I am in a routine that gets me out of the house and into the office a couple of days a week.

RACHEL YERBURY, WIFE: It's been great for him to get out of the house, to get into work. And certainly he's been very productive since he's been back at work.

DR JUSTIN YERBURY: Now that I have more energy, I am able to immerse myself back in to the world of research, planning experiments, meeting with colleagues and attending seminars.

DR KARA VINE-PERROW, FRIEND AND COLLEAGUE: What Justin's been doing over the last five, 10 years is to be building a young research team to be able to carry that research on.

RACHEL YERBURY, WIFE: One of the reasons that he wanted to have this life-saving operation was so that he could continue to work towards finding a cure for MND and that's what he feels like he's doing now.

PROFESSOR DOMINIC ROWE, NEUROLOGIST: He's defined by his passion to fix this disease.

PROFESSOR NEIL CASHMAN, NEUROSCIENTIST, UNIVERSITY OF BRITISH COLUMBIA: Justin Yerbury has a great deal of courage, even though he is quite advanced he is still going to work, he is still working as a research scientist, he is still interacting with me and others in the field developing new science for motor neurone disease, so all of us must take that courage as an example to live by.

RACHEL YERBURY, WIFE: Last week Justin was given a special commendation by the alumni of Wollongong University.

Wollongong University Alumni Awards, October 2018

Presenter: Diagnosed with MND in 2016, Justin continues to lead a productive research group and draw global attention to the pressing need for research and awareness.

RACHEL YERBURY, WIFE: That really meant a lot to him that despite the huge struggles that he has had in the last 12 months he continues to be a productive and valued member of the university.

Wollongong University Fellowship and Alumni Awards Dinner, October 2018

Presenter: Thank you, Justin for your outstanding contribution and for being such an incredible inspiration [applause]

PROFESSOR DOMINIC ROWE, NEUROLOGIST: This operation enables us to measure Justin's survival in years or decades.

RACHEL YERBURY, WIFE: Justin since we've been home has put on a lot of weight, he's much healthier and he's much happier.

PROFESSOR DOMINIC ROWE, NEUROLOGIST: The disease process continues. Astonishingly there are preserves of function that remain intact. So he will always have his eye gaze. He'll always be able to communicate.

RACHEL YERBURY, WIFE: Justin has stabilised a lot over the last six to eight months but he will eventually lose the ability to form his words and to swallow and that's pretty much the only thing left that he can lose.

PROFESSOR DOMINIC ROWE, NEUROLOGIST: You would think that people with this horrendous disease would just give up. They don't. They learn how to live with it, not how to die from it.

RACHEL YERBURY, WIFE: It's been wonderful for us to have Justin around but it's very difficult for all of us to see him. I never get used to the fact that he can't speak, I never get used to the fact that he's totally paralysed and our life as we knew it is over. But we see it as a gift to be able to have him for longer and certainly what he wanted was to be with us and to be around for as long as possible. So, yeah, we're very grateful.

DR JUSTIN YERBURY: I feel healthier and stronger and I really appreciate every minute of being home. I have certainly felt my mind change gears in the last few weeks and I feel like I am back and ready to go again.