Mike Rogers, MND Association Director of Research and Innovation, looks at how data and AI could unlock new treatments.
Motor neurone disease (MND) is one of the least explored biomedical mountains still standing. It is a devastating disease in two respects. It has a profound impact on those diagnosed – causing rapid muscle wastage – and it’s also currently without a cure.
Around 90% of people diagnosed with MND will have amyotrophic lateral sclerosis (ALS). ALS is a progressive neurodegenerative disease that damages the nerves in the brain and spinal cord that are called motor neurones. Signals from the brain stop reaching muscles, leading to their degeneration. This eventually affects the muscles that are used to swallow food and drink, and those used to breathe.
There is a 1 in 300 chance that a person will develop MND, and while it can affect individuals of any age, the likelihood of receiving an MND diagnosis increases with age. The highest rates of MND are typically observed in the 70–79 age bracket, as the aging process reduces the brain’s signals to motor neurons which is a key feature of the disease. This aligns with broader research showing that neurodegenerative diseases often emerge as the cumulative effects of aging-related processes – such as cellular senescence, mitochondrial dysfunction and the breakdown of proteostasis – begin to overwhelm the brain’s resilience.
Worldwide, there are around a third of a million people living with MND and around 5,000 of that number are based in the UK. All of them will experience the disease in starkly different ways. The disease’s scientific complexity and the lack of reliable ways to track progression continue to pose challenges for researchers, making it incredibly difficult to gain a comprehensive understanding of MND. While there have been many clinical trials of potential new treatments, high rates of failure persist.
Having built a career in health research, I can say with confidence that MND is one of the most scientifically and biologically challenging diseases to tackle. That said, no mountain is insurmountable, and it is this mindset that has enabled progress to be made over the past decade – thanks to the tireless work of great minds and organisations across the globe.
These efforts, increased collaboration, and fundraising activities such as the ALS Ice Bucket Challenge have helped to place a spotlight on MND. In tandem, developments in artificial intelligence (AI) and considerable improvements in data collection processes, such as large-scale genomic screening resulting in the generation of large amounts of data relating to MND, have also been significant, given the value of data when trying to understand a complex neurodegenerative disease.
Thanks to these societal and technological advancements over the past decade, we as scientists have been able to wrap our hands around the biology and phenotypes of MND. Most critically, we are starting to unravel the complicated map of all the events that converge to cause the death of motor neurones , which includes misfolded proteins and disruption of cellular processes. This breakthrough, along with others, has led to the development of drugs such as riluzole and tofersen, which have been shown to slow progression of the disease for some people living with MND.
Despite these advances, many challenges remain. Data is an enormously valuable tool, however, for progress to be made, we need large volumes of this data to be available in one place rather than the current fragmented datasets dotted around the world, each of which comes with unique access restrictions and formats.
That’s where the Longitude Prize on ALS comes in; a new £7.5 million international challenge prize designed to incentivise and reward cutting edge AI-based approaches to transform drug discovery for the treatment of ALS.
For me, the most exciting part of the Prize is that it is unlocking access to one of the largest and most comprehensive collections of ALS patient data of its kind ever assembled.
In addition to our understanding of ALS that we’ve built over the years, we now have much more data – from genetic data to brain imaging data, to clinical data – from people with MND all around the world. The Prize is combining these different types of biological information at an unprecedented scale and making it available to innovators.
We also then have the promise of AI, which can examine this mass of data and expedite discovery far more rapidly than people power alone. To put the speed at which this will accelerate ALS research into context, when the human genome was first sequenced, the endeavor took 13 years. Advances in sequencing technology, developments in AI, and the data available, means this task can now be performed in a matter of minutes. Techniques such as machine learning, neural networks and multi-modal data integration are increasingly capable of uncovering hidden patterns across genomic, clinical and imaging datasets – potentially revealing therapeutic targets that would be invisible through conventional analysis.
Expediting the first step of drug target identification means the second step, the discovery of effective treatments, will also accelerate. Finding more effective treatments would be transformative for those living with ALS, and, because they’re all closely related, potentially other neurodegenerative diseases. As we’re unearthing more and more about ALS, we’re understanding its parallels with other neurodegenerative diseases, in particular frontotemporal dementia, Parkinson’s and Alzheimer’s.
Although the Prize is focused specifically on ALS, a motor neurone is the same whether it belongs to a person with ALS or Parkinson’s. If you can stop motor neurones dying in someone with ALS, then that has massive implications and applicability for other neurodegenerative diseases – the opportunity is huge. More broadly, this research may also yield insights into the fundamental mechanisms of brain aging itself, potentially identifying targets that protect neural function and delay neurodegeneration across the lifespan.
No single person can tackle this challenge alone; it will take many great minds from all corners of the world to truly make waves. That’s why as part of the Prize, Challenge Works is helping innovators (whether individuals or organisations) with strong ideas and credible backgrounds to team up with others that offer complementary expertise for example, an ALS researcher with a computational biologist. This collaborative approach will further push innovators towards a successful end goal.
Supporting these teams through various phases, in April 2026 the Prize will award 20 teams £100,000 ‘Discovery Awards’ to identify new high potential therapeutic targets. In May 2027, 10 of these will receive a further £200,000 to build the evidence base for their proposed therapeutic targets in-silico, using computational models to test their research. In September 2028, five teams will receive £500,000 to undertake validation of the highest potential identified targets in the wet lab to further test their research.
The process will support those with the greatest potential with funding, valuable computing power and expert mentoring, as well as access to that essential trove of data to lay the foundations for success. Adopting this approach and supporting multiple successful solutions from a diverse range of innovators, the Prize will award one winning team £1m for finding the target with the strongest evidence of therapeutic potential – solving a previously underserved problem.
Principally funded by the MND Association, and designed and delivered by Challenge Works, supported by Nesta, the Longitude Prize on ALS offers real hope to the MND community. If the last decade has been focused on generating data about the disease, AI now enables us to turn our attention to making rapid strides towards lasting treatments which really make a difference.
Innovation is critical when trying to understand a complex problem. The key is creating opportunities for bright ideas to be seen, heard and developed. By tapping into and engaging the broadest possible community of experts in the solving of a specific problem, challenge prizes do just that.
With this innovative, multidisciplinary approach to tackling MND, the ground is fertile for positive change. But while we are on the right path to conquering the MND mountain, progress is still not yet fast enough. The Longitude Prize on ALS aims to transform this path into a superhighway, placing the world on a clear and direct trajectory to treatment discovery.
About Mike Rogers
Dr Mike Rogers MBE joined the Motor Neurone Disease Association as Director of Research and Innovation in January 2025. An experienced research funding and policy professional, Mike previously worked at the National Institute for Health and Care Research (NIHR) for over eight years where he was responsible for the development of a new global applied health funding programme, NIHR RIGHT. He was also the lead for their joint funding activities with the Medical Research Council during the Covid-19 pandemic, for which he was awarded an MBE in the 2021 Queen’s Birthday Honours.
He has previously worked for the Department of Health, Cancer Research UK and the Pirbright Institute.
Mike holds a BSc (Hons) from Sheffield and a PhD from Kent, both in microbiology. Prior to leaving the lab he undertook post-doctoral work in microbiology at Queen Mary University of London, CABI Bioscience and Imperial College London.
