2 February 2026 Blog
By Mike Rogers, the MND Association's Director of Research and Innovation
Over the past year, I’ve been part of conversations that have stayed with me long after they ended - conversations filled with honesty, heartbreak, determination and, above all, hope.
I’ve heard from people with motor neurone disease (MND), their loved ones, healthcare professionals and world-leading researchers fighting daily to untangle this complex disease.
What’s come through louder than anything is a powerful, urgent demand for progress in research. Not slow progress. Not theoretical progress. But real, practical, life-changing progress.
That collective drive has fuelled our new research strategy. It isn’t just a document or a set of aspirations. It’s a roadmap - a shared commitment to accelerate progress and move us closer to what every single person in this community deserves: effective treatments and, ultimately, a cure.
Building our goals
What has struck me most throughout the process of building our strategy is the passion, honesty and insight of people affected by MND. Their experiences and perspectives have shaped this strategy at every step. They haven’t just been consulted, they’ve been integral - from identifying the most important research questions through to setting priorities and challenging us to think differently, reinforcing the need for urgency.
We’ve also done a lot of work to look at the current research landscape, asking questions like ‘What else is happening in the UK and further afield?’, ‘Who is funding what?’, ‘Where is there a saturation or perhaps a gap in investigation?’. We wanted to establish where we could best add value and make real progress for people affected by MND.
From all this discovery work, four strategic objectives emerged. They are simple, memorable and fundamental to turn understanding into breakthroughs, and breakthroughs into treatments.
Understand – revealing causes and targets
MND is still poorly understood, particularly for the majority of people with sporadic MND. Again and again, people have told us that understanding why this disease happens, why it progresses differently in different people, and what biological processes drive it is absolutely crucial. And they’re right - the better we understand the disease, the more precisely we can target new treatments.
Understanding isn’t just an academic exercise. It’s the foundation that everything else is built on. If we want to prevent MND, or diagnose it earlier, or treat it more effectively, we have to close the big gaps in our biological knowledge.
Detect – improving and accelerating diagnosis
One of the clearest messages we heard was the need for faster, more accurate diagnosis. People told us about their experience of months - sometimes years - of uncertainty before finally receiving an answer. Not only is that emotionally devastating, but it also delays access to care, support and clinical trials.
Our aim is to support the development of better tests and biomarkers so we can detect MND earlier, determine what form it is, and understand likely disease progression. Diagnosis shouldn’t depend on a long process of elimination. It should be clear, timely and precise.
Discover – developing new treatments for everyone
This is the area where hope burns brightest. We’ve seen real breakthroughs recently for people with some inherited forms of MND - tofersen being the best-known example. It shows MND can be stopped in its tracks. But progress has not been equal. People with sporadic MND - the vast majority - haven’t yet benefited in the same way.
That’s why we’re focusing on treatments for sporadic MND while continuing to support advances for genetic forms of the disease. We are investing in large-scale collaborations like the UK MND Research Institute and platforms such as MND-SMART so more people can take part in trials and more potential treatments can be tested quickly and rigorously.
Innovate – improving life for people today
While we drive forward the science, we must not forget people living with MND now. Innovation in healthcare, assistive technologies and care pathways is essential to improving quality of life.
Whether it’s communication tools, mobility supports, symptom management or better ways of delivering care, innovation has a vital role in helping people maintain independence, dignity and wellbeing.
Why involving the community changes everything
This strategy is different because of how it was built. People affected by MND didn’t just validate our ideas - they shaped them. They created the research questions. They prioritised them. They told us what was missing. And they challenged us on what must come next.
Their impact can be felt throughout the strategy. Our emphasis on sporadic MND, the importance of improving diagnosis, the commitment to quality of life research and ensuring the strategy is both ambitious and realistic.
And working with the community doesn’t end here. Involving people affected by MND is not just a phase of this work - it’s our ongoing approach as we make decisions about what we fund, how we evaluate progress and where we focus next.
Where this takes us
Understanding of MND has improved massively over the last decade. There are some crucial things that we still don't understand, but we're in a much better place to bring real, tangible progress.
Our ambition is to invest at least £20 million every year into targeted MND research by 2030, driving the progress people affected by MND have been clear they want and need. We can accelerate treatment pipelines, deepen understanding, improve diagnosis and improve everyday life. And by investing at scale, we can ensure the brightest minds stay in the field and the most promising ideas become real opportunities.
People affected by MND deserve nothing less.
This strategy is ambitious. It’s grounded in evidence. It’s shaped by the community. And above all, it gives us real reason to be hopeful.