Your voice can help drive meaningful change for Australians living with motor neurone disease.
MND Australia advocates for changes to government policy, funding and services to improve the lives of people living with MND, their families and carers. But we can't do it alone. We need the voices of the MND community to help drive change.
Whether you're living with MND, caring for someone, have lost a loved one to the disease, or simply want to make a difference, you can help by raising awareness and calling on decision-makers to take action.
What are we advocating for?
Our advocacy priorities focus on ensuring every Australian living with MND can access the care, support and treatments they need, regardless of their age or where they live.
We are calling for improvements in specialist MND care, equitable funding and timely access to essential supports, better access to aged care, and genetic testing and counselling for families affected by inherited forms of MND.
We are also advocating for better national MND data collection to improve our understanding of the disease, inform care and support services, and advance research.
Read more about MND Australia's advocacy priorities
How you can advocate for change
One of the most effective ways to advocate for change is to contact your local state or federal Member of Parliament (MP).
You can write a letter, send an email, make a phone call or request a meeting with your MP. You don't need to be a government policy expert to make a difference. Sharing why an issue matters to you can be a powerful way to encourage action.
1. How to find and contact your local MP
Federal MPs: Find your electorate using the Australian Electoral Commission website, then visit the Australian Parliament website to find your MP's contact details.
State or territory MPs: Visit your state or territory parliament's website to find your local representative and their contact details.
You can also write directly to the relevant government minister responsible for the issue you are advocating for.
2. Write a personalised letter or email
A personalised letter or email is generally more effective than a standard template letter. MPs and Ministers receive large volumes of correspondence, and a message in your own words can help to cut through the noise.
You don't need to write a long letter. A short, personal message with a clear request can make a real impact.
Here are some tips to get started:
Introduce yourself. Let your MP know that you live in their electorate and explain your connection to MND.
Explain the issue. Choose an advocacy priority(s) that matters to you and briefly explain why change is needed.
Share your story. If you're comfortable, describe your personal experience of MND or how the issue has affected someone you know.
Ask for action. Be clear about what you want your MP to do, such as support a policy change, raise the issue in Parliament, or write to the relevant minister.
Include your contact details. Provide your name, suburb or postcode, and contact details so your MP can respond.
You can refer to MND Australia's advocacy priorities and policy recommendations to support your message.
Remember, your letter doesn't need to be perfect. What matters most is that it's genuine, personal and written in your own words.
3. Follow up and keep the conversation going
If you don't receive a response, consider following up with your MP's office.
You can also request a meeting to discuss your concerns in more detail. MPs regularly meet with constituents, and these conversations can be an important opportunity to help decision-makers better understand the realities of living with MND.
If you receive a response, you can continue the conversation by asking what action your MP intends to take.
Together, we can make change happen
Advocacy works best when people come together to make their voices heard.
Every letter, email, conversation and personal story helps build awareness of MND and the urgent need for better care, support and treatments.
By adding your voice to MND Australia's advocacy efforts, you can help create a future where people living with MND receive the support they need, when they need it.
Contact details for Minister Butler:
[email protected]
(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