This is the story of an 11-day, 772 kilometre trip from Victoria to Canberra that has captured the hearts of thousands of Australians.
Warren ‘Woz’ Acott, 66, is no stranger to the highways. Before being diagnosed with motor neurone disease (MND) in July last year, he was a truck driver for over 40 years.
But his heartbreaking diagnosis forced him to give it all away. Unable to drive a truck anymore, he set off on his trusty old lawn mower for his Mow Down MND campaign. Acott had it geared up to 24km/h for the trip.
Image: Mow Down MND
He left his hometown of Toolleen, Victoria, on March 11 and arrived in Canberra on March 21, where he met with Prime Minister Anthony Albanese.
His aim? To make MND a notifiable disease, which would go a long way in furthering research and assisting those who have the disease to access the support they need.
The trip wasn’t all smooth sailing however, he battled with scorching temperatures and suffered a frightening fall that landed him in hospital, but he didn’t let any of that stop him.
The campaign came together very quickly – and it had to. Within just a few weeks of alerting Big Rigs to his plans, Acott was already on his way. “I was running out of time,” he said. “This disease takes you down bit by bit. I was trying to answer the phone just before but I couldn’t use my hands to swipe.”
His daughter Belinda Acott was instrumental in getting the show on the road and was by her dad’s side for the entire journey. In putting Mow Down MND together, Acott revealed, “That credit goes to Belinda. She was the backbone of it all. She did such an amazing job – and I wanted to thank Big Rigs too, which was one of the first ones to cover it.
“The support from people like yourself, A Current Affair which also covered it, and a lot of other people, that’s what got the message out there. There were so many trucks that were pulling up too – it was all very heart-warming.”
Ever so humble in what he’s achieved, Acott said that although he’s pleased he made it to Canberra, “It’s not about me, it’s about this stupid disease, and about getting attention to the government. I think that’s why it came out and snowballed like it did. I think someone brought it to the prime minister’s attention, and he thought he’d better get out there. I think A Current Affair had a lot to do with that meeting. So now we know we’ve got his attention.”
Acott, together with fellow MND sufferers Maxine Gee and Fred Molluso, and the CEOs of MND Victoria and MND Australia, had a private meeting with Prime Minister Anthony Albanese to discuss why MND should be made a notifiable disease.
Robbed of her ability to speak and eat, Gee told of the time she was refused a drink at a pub because they thought she was drunk. While Melluso spoke of how far behind Australia is compared to many other countries when it comes to MND research and access to medical trials for MND sufferers.
“I told the prime minister, mate, this is what it’s like. That’s as raw as it gets,” said Acott.
“I asked him, how would you like to wake up in the morning and you can’t even scratch your own nuts, because that’s what happens. MND takes you down bit by bit, day by day. I do believe he did listen and take it on board – but it would be nice if what we’ve done just tips it over the edge.
“All these doctors have been trying for years to make MND a notifiable disease.”
Though the ride was “bloody tough”, Acott was always going to see it through to the end.
“I was just determined. I’m born in May and I’m a Taurus and they reckon we’re stubborn but I don’t think so,” he laughed, while also admitting, “It did take its toll on me though. I’m having a lot more trouble talking and that – you can hear it in my voice, but that’s also part of the disease. So you don’t know which is which.
“What I’ve done probably hasn’t helped me, but this is not for me, it’s for the next generation.
“We need to stop this for the next generation. MND is such a shit thing. We live in a beautiful country, but it’s no good if we’re killing ourselves.”
Several regional areas of NSW, such as the Riverina, Griffith, Wagga Wagga and Leeton have become hotspots for MND and many researchers are continuing to explore possible links with environmental factors.
The route Acott took to Parliament House may not have been the most direct route but this was deliberate – with stops at several towns which have clusters of MND.
While 5-10 per cent of instances of MND are genetic, the causes in the remaining 90-95 per cent are unknown.
“Over the last 30 years, the number of motor neurone disease deaths has increased by 250 per cent and that can only be environmental,” Professor Dominic Rowe, of the Macquarie University Motor Neuron Disease Research Centre and the MQ Health MND Clinic, recently told Big Rigs.
Speaking of the trip, Acott revealed, “The last six kilometres into Jerilderie nearly killed me, that was the hardest bit. I think it got to around 38-39°C. Then when I got there, I just wanted to park in the shade.
“Then from Leeton to Wagga, where I did 100 kilometres into Wagga, that was the longest day. I was pretty buggered after that.”
Though the scariest moment for Acott himself, and his loved ones who joined him on the trip, was the moment he fell back onto the concrete while getting into his wheelchair. “When I fell, I was stunned. I’ve never been like that before in my life. It was scary. I couldn’t speak. I couldn’t move my arms and legs and I could hear my daughter and ex-wife screaming,” he said.
“There was a young reporter there to do a story and when I fell, he didn’t want to take photos. But I told him, this is the truth of it all. This is as raw as it gets. One minute you’re standing up and the next minute you’re on the floor. I’m glad they reported it, because that’s what happens to MND sufferers every day.
“Besides head-butting the concrete, I couldn’t have asked for the trip to go any better. The generosity of people is just mind boggling.
“It’s amazing to see just how many people this disease affects. I thought I had a rough idea, but I was way off. It was a really big eye opener. The support we received just restores your faith in humanity. I cannot thank everybody enough.”
The support was indeed beautiful to see. Acott spoke of the little boy he met at a pub who was so upset because Acott reminded him of his own grandfather who had passed away. And of the little girl he met from a school at Yass who said, “Thank you for changing the future.”
Acott is now back at his newfound home, living at an aged care facility called Heathcote Health. “I can’t go home anymore – I can’t stand or feed myself and stuff like that. It’s all part of the fun they reckon. They gave me another room with a balcony on it. Nobody wanted this room because the toilet isn’t attached. And I said I don’t give a bugger, I’ll have it. They reckon I helped them out, but I feel a bit lucky to get this room,” he said.
The epic ride may be over, but there’s still more work to be done. As he and his team work to collect as many signatures for their petition as they can, Acott said, “Hopefully we can get enough and it can all go from there. Fingers crossed!”
Mow Down MND collected over 10,000 hand-written signatures for its petition to make MND a notifiable disease, which were presented to the prime minister. The team has also now launched an online petition, which will be open until April 17, 2024, at 10:59pm (AEST). Within days of going live, the e-petition had already collected thousands of signatures.
To sign the petition to make MND a notifiable disease, please visit the website at mowdownmnd.com.au.