Every day two Australians are diagnosed with motor neurone disease (MND) and two die from the disease. With no cure and an average life expectancy of just 27 months, we need more investment in MND to support people living with the disease and towards developing effective treatments.
Today, MND Australia, the national peak body for MND, together with the Parliamentary Friends of MND, is hosting an event at Parliament House in Canberra to celebrate Global MND Day and honour 30 leaders in the MND field in recognition of MND Australia's 30th anniversary.
Lifetime achievement awards will be presented to people who have made a significant contribution to the MND landscape in the last 30 years.
Award recipients including top MND neurologist Dominic Rowe, high profile footballer and FightMND founder Neale Daniher, former patron Judith Durham and 2024 WA Australian of the Year, Professor Samar Aoun.
Andrew Danson, MND Australia Board President, lost his father to MND in 2020.
"We've achieved a lot in 30 years. Together with the State MND Associations, we have supported thousands of Australians with MND, as well as their families, friends, and carers. We've also invested $50M in research, funding over 500 research projects in Australia," said Mr Danson.
"Many of our award recipients have, like me, lost loved ones to MND. Many have battled the disease themselves. Some are no longer with us. They have all, in some way, changed the lives of those living with MND for the better, through research, advocacy, or championing care and support."
"Yet despite the progress made over the last 30 years, there is still so much more that needs to be done. There are no effective treatments – people with MND lose the ability to walk, talk, swallow and breathe, and then they die. It truly is a dreadful disease."
At Parliament House today, MND Australia will present a 6 Point Plan to Support People Living with MND.
"We're calling for Aged Care to provide disability supports to people with MND aged 65+ at a comparable level to the NDIS and we need to ensure the NDIS remains strong and meets the complex needs of people with MND," said Mr Danson.
"When new treatments become available, we need to fast-track the approval process here in Australia, people with MND just don't have time to wait."
"We're also calling for a strong commitment on research from the Government, with the establishment of a Neurological Mission within the medical research future fund."
At today's Parliament House event speakers include the Minister for the NDIS the Hon Bill Shorten MP; Assistant Minister for Health and Aged Care, the Hon Ged Kearney MP; and Senator Jordon Steel-John, Greens Spokesperson for Health and Disability.
"We look forward to hearing from the Ministers and other Parliamentarians about their response to our 6 Point Plan and other initiatives that could make a real difference in the lives of people impacted by MND."
About us:
MND Australia is the national peak body for people living with and impacted by motor neurone disease. Together with the State MND Associations, we advance MND care, advocacy and research.
