News

Findings from the 2025 MND Community Survey released

Published: 5 August 2025

We are delighted to officially release the report from the 2025 MND Community Survey, in collaboration with FightMND and the State MND Associations.

We surveyed close to 500 Australians with lived experience of MND to understand more about their quality of life, their experience engaging with support services, and their views on future research and advocacy priorities.

Key findings from the survey include:

• Connection to family, friends and community improves quality of life for people living with MND, however, this is reliant on people having access to services and supports that meets their needs (eg equipment, MND health professionals etc)
• Family carers rated their quality of life poorer than others impacted by MND, reflecting the intensive demands of caring and the lack of sufficient supports
• The majority of people living with MND want to participate in research, however, restrictive inclusion criteria, time requirements and travel distance impact on uptake
• A top advocacy priority is equitable access to government disability support funding, regardless of the age at diagnosis

Further findings from the survey our outlined in the report infographic and full survey report.