Share this @internewscast.com
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.”

Man wearing blue beanie campaigning for MND research.

Former AFL great Neale Daniher has campaigned for more MND research since being diagnosed.

More research needs to be done and consolidated through a national database on the causes of the disease, MND Australia CEO Clare Sullivan said.

“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.”

According to official data gathered from various sources, it is estimated that this degenerative condition affects one in every 10,000 individuals, with approximately 2,700 people in the nation currently coping with it.

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.

Share this @internewscast.com
You May Also Like
A South Australian woman is in custody after being filmed travelling on the wrong side of the road while allegedly drink driving and with a toddler in the back seat.

Woman Accused of Drunk Driving with Toddler Seated on Her Lap

A woman from South Australia has been detained after being caught on…

Texas Flood Tragedy: Death Toll Exceeds 100, 180 People Unaccounted For

Main Highlights Heavy rains hit a part of Texas last Friday, causing…
The exhibition has been five years in the making, and Tate Modern is anticipating more than 200,000 visitors during its six-month run.

Famous Indigenous Artist’s Creations Featured at Prestigious London Gallery

A major solo exhibition showcasing the works of acclaimed Aboriginal Australian artist…
Close-up of a male doctor hand hold a silver pen and showing pad in hospital. Doctor giving prescription to the patient and filling up medical form at a clipboard

Doctor Issues 17,000 Medical Cannabis Prescriptions in Half a Year

Australia’s healthcare regulator has released new guidelines for medicinal cannabis following incidents…
The Hobson's Stores, better known as Hobson's, has been serving Sandringham locals for about 18 years.

“Intense Dispute Erupts Between Landlord and Pub Owner in Melbourne”

Exclusive: It doesn’t look like much from the outside but Hobson’s pub…
Telstra proposes mass job cuts from across the business

Telstra Plans Significant Job Reductions Across the Company

Telstra has confirmed another round of mass cuts across the business is…
Attorney General Pam Bondi, front, with Agriculture Secretary Brooke Rollins, back left to right, Secretary of Defense Pete Hegseth and Arkansas Gov. Sarah Huckabee Sanders, speaks during a news conference at the Department of Agriculture to rollout the USDA'S National Farm Security Action Plan and discuss actions being taken to protect American agriculture from foreign threats in Washington, Tuesday, July 8, 2025. (AP Photo/Manuel Balce Ceneta)

Trump Criticizes Media Amidst Denial of Epstein Client List by Authorities

President Donald Trump sprang to the defense of Attorney General Pam Bondi…
Flash flooding is seen at the Guadalupe River in Kerrville, Texas, on July 5.

Time-lapse Video Captures Rapid Rise of Floodwater in Texas

Timelapse video has captured just how quickly floodwaters rose along the Llano…
A photo supplied by the kindergarten to parents show bright yellow "corn" rolls.

Chinese Kindergarten Uses Paint to Decorate Food

In northwest China, authorities have reported that over 200 kindergarten students were…

Potential RBA Interest Rate Reduction: Implications for Australian Homeowners

The Reserve Bank of Australia is set to convene today, with most…

Trump Criticizes Putin’s ‘Nonsense’ Amid U.S. Consideration of More Russia Sanctions

United States President Donald Trump has accused his Russian counterpart Vladimir Putin…
Extent of major Qantas data breach revealed

Details of Significant Data Breach at Qantas Disclosed

Details of last week’s Qantas data breach have now been made clearer…