MND Community Survey: The power of research in the fight against MND

When nearly 500 Australians affected by motor neurone disease (MND) shared their voices in the 2025 MND Community Survey, their message was clear: research isn’t just important. It’s urgent.

Whether living with MND, caring for someone, or carrying a genetic risk, people told us the same thing: research is the key to hope. Hope for better treatments. Hope for longer lives. Hope for a cure.

What the community told us: research at the heart

One of the key areas the 2025 MND Community Survey explored was research. This included the areas in most urgent need of focus and how people living with and affected by MND want to be involved.

Research participation: a community ready to help

The survey showed that people want to play an active role in driving progress.

  • 80% of people living with MND and 72% of carers said they wanted to participate in research.
  • Most who were offered the chance accepted and had positive experiences.
  • Barriers remain, such as time, distance, strict eligibility criteria and not hearing back about outcomes.

The community’s biggest request? Better access to opportunities and more regular updates on research progress.

Research priorities: what matters most

When asked what kind of research should be prioritised, the community’s answers were clear:

  • Finding the cause of MND and slowing progression through clinical trials came out on top.
  • Improving quality of life and faster, easier diagnosis were also major priorities.

Priorities shifted depending on experience. Those with advanced symptoms focused more on slowing progression and quality of life, while carers and gene carriers placed greater importance on policy and inclusion.

In short, the community wants research that delivers treatments and answers, while also improving daily life and the systems that support it.

Investing in research: from the lab to real lives

Since its founding, FightMND has invested heavily in research, guided by four key pillars that underpin our commitment to finding a cure:

  1. Funding world-class research: supporting top-tier projects through a competitive grants program aligned with NHMRC standards.
  2. Capacity building: nurturing the next generation of MND researchers through scholarships and fellowships.
  3. Infrastructure: making targeted investments in the tools, facilities, and systems that support MND research across Australia.
  4. Knowledge exchange: facilitating the sharing of discoveries and insights across the national and international MND community.

These pillars ensure Australian MND research remains world-leading, driving us closer to better treatments and, ultimately, a cure.

Driving the search for a cure

FightMND supports the full research pipeline, from laboratory discoveries to clinical trials. This work has helped open more clinical trials across Australia, advance new therapies and support emerging researchers through scholarships and fellowships.

The types of grants FightMND offers, includes:

  • Clinical trial grants: these test promising therapies directly with people living with MND.
  • Drug development grants: these work to translate lab discoveries into potential treatments.
  • IMPACT grants: these grants help accelerate discoveries into real-world application.
  • Discovery research grants: support projects which investigate the biology of MND
  • Fellowships and clinical investigator awards: help build the next generation of MND researchers.

Supporting people today

While finding a cure is our ultimate goal, people living with MND need solutions now. That’s why FightMND also invests in Care-focused research. These are projects that explore ways to improve quality of life, extend survival, and strengthen care systems.

Why it matters

Research is more than science. It’s hope in action. Every trial launched, every grant awarded, every breakthrough funded brings us closer to a future without MND.

Together, with the voices of the community guiding us, we’re not just imagining a world free of MND. We’re building it.

How the survey will guide FightMND’s research investment

The 2025 MND Community Survey gives FightMND valuable insights into the priorities and needs of the MND community. These findings will inform future decisions about where and how we invest in research, ensuring our funding supports what matters most:

  • Advancing Cure-focused research, from understanding the cause of MND to testing new therapies in clinical trials
  • Supporting Care-focused research, to improve quality of life, survival, and access to support for people living with MND
  • Increasing community participation by reducing barriers and improving communication about research opportunities and outcomes

By listening to the community, FightMND can make sure research investment delivers maximum impact, bringing us closer to treatments and a future free from MND.

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.

View the webinar