As we enter the next phase of funding, it’s important to look back on what we’ve achieved together and why it matters for people living with motor neuron disease (MND). Every step forward brings us closer to improving lives today and finding effective treatments for tomorrow.
Our mission has always been clear: to accelerate research that makes a real difference for people affected by MND. Over the last three years, we’ve worked tirelessly to understand how and why MND occurs, identify promising treatments, and test them in clinical trials. This progress is only possible because of the voices, experiences, and determination of the MND community. Read about our biggest achievements over the last few years and how they are accelerating progress towards new treatments for MND.
Bringing researchers together like never before
We’ve united scientists across the UK to work toward a shared goal: finding effective treatments for MND. By bringing together 67 researchers from 9 major institutions and 22 clinical sites, we’ve created a collaborative network that didn’t exist before. This means research is moving faster, ideas are shared more freely, and resources are used more effectively, all to speed up the search for treatments.
Importantly, patient voices are at the heart of this work. Our Patient-Scientist Buddy System pairs people living with MND with early-career researchers, ensuring that every project is grounded in real-life experience. This helps scientists understand what matters most to patients and keeps research focused on improving quality of life.
We’ve also hosted major meetings across the UK, bringing together researchers, charities, and people affected by MND to shape the future of research. Your input is helping set priorities and guide decisions.
Creating a national research infrastructure
We’ve created a national system linking data, samples, and research tools, making it easier for scientists to share knowledge and accelerate discoveries. This infrastructure means that every study can build on the work of others, reducing duplication and speeding up progress.
For people living with MND, this also means more opportunities to take part in research. The remote research platform will allow you to join the MND Register, request blood sampling kits, and contribute to studies from home. This is research designed around your needs, accessible, inclusive, and patient-centred.
Developing new tools to understand MND
We’ve developed human cell models that mimic MND, giving researchers powerful tools to test ideas and understand how the disease works. These models are already providing clues that could lead to new treatments.
We also helped secure funding for EXPERTS-ALS, a national drug testing platform that will allow promising treatments to be tested more quickly and efficiently. This means that when a potential therapy shows promise, it can reach clinical trials—and patients—faster.
Through our partnership with Raya Therapeutics, one of its clinical-stage compounds is now being tested within this platform, bringing us closer to new treatment options.
Driving Global Innovation
We partnered with Challenge Works to deliver the Longitude Prize on ALS, a £7.5 million initiative to transform drug discovery using AI. This global competition is designed to accelerate the identification of new drug targets, with the ultimate aim of finding treatments that change lives.
Why does it matter?
These achievements aren’t just milestones, they’re steps toward a future where MND is better understood and better treated. Every new tool, every collaboration, and every patient voice brings us closer to that goal.
We want to thank our partners, the MND Association, My Name’5 Doddie Foundation, LifeArc, MND Scotland, MRC, and NIHR, whose support makes this work possible.
You can read about our other blogs and news stories here, or read about our research here. Also, sign up for our newsletter.
