Help us drive change for people with MND
Our recent economic and social impact report on MND – Every Moment Matters – identified five recommendations with the potential to significantly improve the lives of Australians impacted by this disease.
One of the top recommendations was the urgent need for Government investment in an MND data strategy and database/registry.
Why does Australia need an MND database?
Right now, we simply don’t know enough about MND in Australia, and the data collected is fragmented over several smaller datasets. A unified national database would give us critical insights into how the disease is affecting Australians — including how many people are living with MND, where they are, when they were diagnosed, and how the disease progresses over time. This data is essential to improving care, advancing research, and ultimately finding a cure.
MND Australia is calling on the Minister for Health, the Hon. Mark Butler, to commit to a national MND data strategy. But we can’t do it alone — your voice matters.
Please join us in our call for a national database. Write, email or call Minister Butler and let him know that building an MND database matters to you.
We’ve created a template letter to get you started. You’re also encouraged to share your personal experience with MND — whether it’s your own diagnosis or that of someone you love or care for. Every story strengthens the call for change.
Together, we can build a clearer picture of MND in Australia — and a stronger future for those it impacts.
Contact details for Minister Butler:
minister.butler@health.gov.au
(02) 6277 7220
Postal address: Parliament House, Canberra, ACT
Or tag/message his Facebook or Instagram pages.
Watch Sharon and Ron's stories and learn why they're advocating for an MND database