In August 2025, FightMND and MND Australia released the results of the 2025 MND Community Survey, delivered by ACIL Allen. The survey captured insights from 495 Australians, including people living with MND, current and former carers, and asymptomatic gene carriers. Developed with input from people with lived experience, clinicians, researchers, and state MND associations, the findings offer a comprehensive national picture of the MND community.
Findings
Of those living with MND responding to the survey, many report a moderate to good quality of life, especially when supported by strong personal connections and access to specialist care. However, access to care is uneven. Timely support, equipment and specialist care, particularly through MND Clinics, improve wellbeing. But people in regional areas and those newly diagnosed often face delays and barriers.
Research remains a strong priority for the community. The most valued areas include understanding the causes of MND, developing clinical trials to slow progression, improving quality of life and accelerating diagnosis. While most people want to participate in research, many are excluded by strict eligibility criteria or face barriers such as time, travel and lack of clear communication. Gene carriers especially called for more inclusive research and better access to clinical trials and genetic information.
Carers reported the lowest quality of life among all groups. Many provide full-time care with limited access to respite or appropriate assistive equipment. They also expressed concern about future planning and a lack of MND understanding among professional care providers.
Gene carriers described feeling disconnected and unsupported. Many struggled to access genetic counselling and clinical trials and reported stigma or dismissal from some health professionals. Unlike people with MND and their carers, most gene carriers had difficulty finding the information they needed to manage their health and risk.
There are clear advocacy priorities for the community. Foremost is equitable access to disability funding regardless of age, greater investment in MND Clinics and faster access to health services, especially outside major cities. Carers and gene carriers both highlighted the need for better support systems and timelier, coordinated care.
Next steps
These findings will guide future investments in care, research, and advocacy, ensuring that the voices of those directly impacted continue to shape progress.
Watch Now: 2025 MND Community Survey Webinar Recording
Missed the 2025 MND Community Survey webinar? Catch up on the insights that are shaping the future of MND research and care.
FightMND and MND Australia have released the recording of the 2025 MND Community Survey webinar, where representatives from both organisations unpack the survey findings and discuss how they’re informing research investment, care initiatives, and support strategies.
Watch the recording now and hear directly from the voices driving change for people living with MND.