2025 MND Community Survey Results
August 04, 2025
MND Australia, supported by the State Associations, and in collaboration with FightMND have released the findings from the 2025 MND Community Survey. The survey’s purpose was to understand the lived experiences and priorities of Australians living with MND, past and present carers, and gene carriers.
Survey respondents were primarily asked to share their experiences with accessing support services, their quality of life, and their insights into the greatest needs and wants of the MND community.
Key Findings for MND Victoria:
- Carers need more support. Carers reported the lowest quality of life amongst all of those impacted by MND, as they feel the impact of limitations in government funded support, often lacking in tangible support from networks in their life, and have difficulty focusing on their own wellbeing.
- The quality of life for those diagnosed with MND is dependent upon on access to supports, community, and health services. Notably, MND Victoria and the other State Associations, serve an important function to connect people with information, support services, and community.
- Gene carriers are an often underrepresented voice in the community, and highlighted barriers to accessing adequate and timely genetic counselling.
- Equitable access to disability funding and support for people with MND, regardless of age, is a key priority of the MND community.
If you’re one of the almost 500 people who completed the survey, we at MND Victoria want to thank you. The insights are an important guiding tool for everyone working towards a better future for MND care, and are only made possible by people generously sharing their experiences.
Information gained from the report will be used by MND Australia and the State Associations to guide our future advocacy priorities, and to help inform what services and areas we need to fund and improve upon. FightMND will be using the report findings to inform future research initiatives.
We’re hoping to regularly conduct this survey to ensure we’re informed of and working towards the needs of the MND community.
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