Motor Neurone Disease: Move to make MND a notifiable condition in bid to develop cure

One Australian state will be the first to make motor neurone disease a notifiable condition in a bid to help researchers and clinicians develop preventative measures, better treatments and maybe a cure.

NSW will become the first jurisdiction in Australia to report cases of people living with MND from Tuesday.

MND affects approximately eight in every 100,000 Australians, and 90 per cent of cases occur sporadically, without any apparent reason or family link.

It is a rare, progressive neurological disorder that causes rapid degeneration of muscle activity and can impair walking, talking, breathing and general functioning.

There is no cure for the disease.

Awareness of the crippling disease has grown in Australia due to AFL legend Neale Daniher’s trailblazing FightMND foundation and the tragic recent diagnosis of 30-year-old NRL star Jai Arrow.

Their devastating battles have united the public and sporting codes, driving unprecedented awareness and research funding to fight the disease.

Acting premier Prue Car said NSW was leading the country with a change that will give researchers a chance to properly assess the impact of the disease.

“Motor neurone disease is devastating not only for those diagnosed, but for the family, friends and communities who surround them,” Ms Car said on Monday.

“This is about building better understanding today so we can work towards treatment options, and a step closer to a future with a potential cure.”

A notifiable disease is a medical condition that by law must be reported to NSW Health by medical practitioners, hospitals, laboratories, and schools or childcare facilities, to help prevent and control the spread of certain diseases.

Data collected will include the case’s full name, address, date of birth, age, gender, Aboriginality, language spoken at home, country of birth, occupation/school, date of onset, date of notification, and date of death if applicable.

It will also include details about the referring doctor.

The data collected will be kept confidential.

MND NSW chief executive Liam O’Meara said as many as 750 people were living with the condition in the state, with at least 300 people expected to be diagnosed this year.

“Without understanding the cause, the ability to slow and stop MND remains a pipe dream, and people will continue to die rapidly,” Mr O’Meara said.

“Identifying who has MND is the first step to understanding the cause of sporadic MND. The register will enable this. It will enable careful research into the environmental causes of MND, without which we will never understand the mechanisms involved.

“All people with MND want to be recognised. They want to be counted. They demand to be studied so that the cause of their disease is understood.”