A rare debilitating disease that eats away at the nervous system to shut down the body claims the lives of two people in Australia each day and two more are diagnosed.
Motor neurone disease (MND) robs individuals of the ability to walk, talk, swallow, and eventually breathe, as it impairs nerve cells responsible for transmitting signals from the brain and spinal cord to the muscles.
With no known cure and limited treatment options, health advocates are calling on the government to launch a data registry, with $12 million needed to know the extent of the illness nationwide and target specific support to affected patients.
One of them is 41-year-old Canberra mother Sharon, who is confined to a wheelchair.
She started noticing a slight limp and other minor issues with her right leg and foot when she was playing netball.
Within six months of being diagnosed in 2018 she started using a walker for short distances and a scooter for longer distances.
She later had a feeding tube inserted and transitioned to using a wheelchair.
"MND impacts every part of my body and every aspect of my life, but I'm just as intelligent and switched on as I've ever been," she said.
The mother of two of boys communicates using an eye-gaze technology machine which converts pre-recorded sentences into words. She has documented her journey on social media.
"MND is not an incurable disease, we just haven't found the cure yet."
Former AFL great Neale Daniher has campaigned for more MND research since being diagnosed.
"It's one of those diseases we still don't know a lot about, there's no specific diagnosis," she told AAP.
"You have to exclude everything else, and then you're left with motor neurone disease.
"That also goes to why we need better data. We don't even know how many people in Australia have motor neurone disease."
It's estimated that it affects about one in 10,000 people with about 2,700 people in the country battling the degenerative condition, according to official figures extrapolated from different sources.
The average life expectancy for a person diagnosed with MND is between two to three years.
In a report published by the peak body earlier this year, it put the cost of the devastating disease at about $4.85 billion based on lost productivity, the unpaid carer burden and direct healthcare system costs.
"As a country, we can be much more empathetic and inclusive of people with disabilities," Sullivan said.
