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£7.5 million Longitude Prize on ALS launches
£7.5 million Longitude Prize on ALS launches

Korea Herald

time4 days ago

  • Health
  • Korea Herald

£7.5 million Longitude Prize on ALS launches

LONDON, June 25, 2025 /PRNewswire/ -- The Longitude Prize on ALS, a £7.5 million global challenge prize, has launched to incentivise and reward cutting edge AI-based approaches to transform drug discovery for the treatment of ALS (amyotrophic lateral sclerosis), the most common form of MND (motor neurone disease). ALS is a progressive neurodegenerative disease that damages the nerves in the brain and spinal cord, leading to severe muscle degeneration. There is a 1 in 300 chance that a person will develop MND – around 90% of cases will be ALS. Although some very limited treatments exist to slow the progression of ALS for a short time, its complexity means there are no long-term treatments and no cure. For the first time, however, AI advances mean innovators have the opportunity to outpace the disease. Tris Dyson, Managing Director, Challenge Works, who was diagnosed with ALS in 2023 said: "ALS is astonishingly complex which is why it has been so difficult to develop treatments that truly fight this hideous disease. Tireless fundraising in the last decade has created a wealth of data on ALS that just didn't exist before, and we are at a turning point. "In the last year, Tofersen, the first drug treatment to show real promise for people with the very rare inherited form of MND (affecting around 2% of patients), shows that the disease is no longer a black box that we cannot penetrate. We are now on the right path for treatments for all MND patients – including those of us living with ALS. The real game changer though is the rapid advancement of AI. It means we can turn the path into a superhighway. "Never before have we had the power to unlock the complexity of MND, and in particular ALS, and accelerate along the road to long-term treatments, and, I hope one day, a cure. The Longitude Prize on ALS makes this possible, convening the largest data set of ALS patient data of its kind ever made available and rewarding researchers to use AI to identify the most promising drug targets." The Prize is principally funded by the Motor Neurone Disease Association and designed and delivered by Challenge Works, supported by Nesta. Additional funders include Nesta, the Alan Davidson Foundation, My Name'5 Doddie Foundation, LifeArc, FightMND, The 10,000 Brains Project, Answer ALS and The Packard Center at Johns Hopkins. Seeking innovators from across medical research, biotech, techbio, pharmaceuticals and AI, the Prize will initially reward the 20 most promising entrants with £100,000 each in early 2026. Teams will be judged on the potential for their approach to identify and validate drug targets driving understanding of the disease and supporting onward translation into drug discovery. The entry window closes on 3 December 2025. The 20 successful entrants will be named in the first half of 2026. Lucy Hawking, journalist and daughter of the MND Association's late Patron, Prof. Stephen Hawking said: "The Longitude Prize on ALS is an important step towards increasing our understanding of motor neurone disease, and specifically ALS. I hope the Longitude Prize will encourage the use of AI by researchers and scientists to gain new insights into this devastating condition and advance the search for treatments and a cure. For people living with the disease, their families, friends and carers worldwide, this would bring so much relief and joy. My father lived with MND for over 50 years, the longest known survivor with this condition and his great wish was that one day, a cure would be found. I'm proud to support the Longitude Prize and wish all entrants the very best." Tanya Curry, Chief Executive, the Motor Neurone Disease Association said: "Empowering some of the brightest minds across science and technology to come together, the Longitude Prize on ALS will initiate transformative change for people living with motor neurone disease. We are investing as a principal funder as enabling such collaborations, as well as the level of unprecedented data we're working to unlock, marks the start of a significant milestone for drug discovery, the MND Association and wider MND community in how we understand and consequently tackle the disease." Successful applicants will gain access to the largest collection of ALS patient data of its kind via DNANexus, hosted on Amazon Web Services, provided in partnership with Project MinE, Answer ALS, New York Genome Center (NYGC), ALS Compute and the ALS Therapy Development Institute. Ten teams will progress to a second stage, receiving £200,000 in 2027 to build the evidence base for their proposed therapeutic targets. In 2028, five teams will then receive £500,000 to undertake validation of the highest potential identified targets. The £1 million grand prize will be awarded in 2031.

I have motor neurone disease — and the fund to find a breakthrough
I have motor neurone disease — and the fund to find a breakthrough

Times

time21-06-2025

  • Health
  • Times

I have motor neurone disease — and the fund to find a breakthrough

Tris Dyson knew something was wrong in June 2022 when he could not move his left thumb. Six months later, aged just 44 and with a baby daughter, he was diagnosed with motor neurone disease (MND). The muscles in his body were dying and he would, sooner or later, lose the ability to walk, speak and breathe. 'I was newly engaged. I'd bought a house. Things were going quite well. So to be told the party's over was not brilliant,' recalls Dyson. Today he considers himself 'one of the lucky unlucky ones' as his physical decline is 'relatively slow'. Having being told he had four years to live, Dyson said he is in 'pretty good shape', and thinks the doctor's prediction was wrong. Since his diagnosis, Dyson, now 46, has focused his energies on his day job, which just happens to be organising multimillion-pound prizes for scientific breakthroughs. He is managing director of the Longitude Prize, which was established in 2014 as modern-day version of the original Longitude Prize of 1714. The original prize sought reliable ways of measuring longitude at sea, and it took nearly 50 years to be solved. The modern-day version has run two awards so far: the first, in 2014, to tackle antimicrobial resistance, and the second, launched in 2022, seeks treatments for Alzheimer's. Now, the next prize will target MND; specifically amyotrophic lateral sclerosis (ALS), the most common type, which is the one that Dyson suffers from. On Wednesday, Dyson's organisation, Challenge Works, a subsidiary of Nesta, the UK scientific foundation, will launch a £7.5 million Longitude Prize to find a treatment for ALS. For the next five months, Dyson will seek applications from medical researchers and AI experts all over the world before drawing up a shortlist of 20 teams. These will be whittled down in stages, with tranches of money doled out at each step. 'Prizes are very good when you've got a problem and you don't know where the solutions are going to come from,' Dyson says. 'You award on the basis of success.' The winning team will receive £1 million at the end of the challenge. Dyson hopes other investors or private companies will support the prize over time, offering computational power, for example, to run AI calculations. After that, the aim would be for a big pharmaceutical company to take the research and develop a drug: 'We need to feed them with high-potential, credible targets.' Pharma companies would have 'a huge market, potentially', he says. MND is not as rare as you may think. 'About one in 300 people will get it,' Dyson says. 'It's absolutely extraordinary. But often it appears when somebody is very old and it's part of the end-of-life process.' The Motor Neurone Disease Association estimates that it affects up to 5,000 adults in the UK at any one time. • MND sufferer records voice bank so she can swear at her husband MND is characterised by a breakdown in communication between nerve cells called motor neurones and the body's muscles, with the muscles weakening and wasting away, leading to paralysis. The progress of the disease varies from person to person, with only very limited treatments available and no cure. It is more likely to affect people aged over 50. There is no clear cause for MND, although genetic and environmental factors are thought to play a part. About one in ten people may have a family history which makes them more prone to the disease. Dyson believes there now is an opportune moment to tackle MND because of leaps in our understanding of genomics, and the rise of AI, which can sift through big data to find targets for drugs. Until now, he says, research has been limited and diagnosis is still pretty much the same as it was 100 years ago. 'What's happened in the last 15 years is the basic level of science has gone from being very little to a strong basic level of understanding,' Dyson says. 'The other thing that's happened is a huge amount of patient data has been collected, which we're making available through this prize.' Most of the money that has gone into studying MND has come from donations of patients' families, he adds, and cases such as that of the rugby league player Rob Burrow have raised its profile. Burrow and his former team-mate helped raise £6.8 million for a MND centre, which will open later this year in Leeds. 'It takes your independence away,' explains Dyson. 'It takes your dignity away. Some people manage to rise above it. Rob Burrow is a good example. It's still an unbelievably horrendous thing. And then you ask what treatments are available. There aren't any, which is an unbelievable thing to be told in this day and age.' Solving MND is not where Dyson expected his career to take him. He is not a scientist or medic by training; he studied Geography at UCL, where I first encountered him as an undergraduate, hanging around the ground floor of Ramsay Hall, a hall of residence in Fitzrovia whose main claim to fame is that the band Coldplay met there. After we graduated, I would see Dyson at various parties over the years. One early initiative was running a local currency scheme in Wales; another involved setting up a 'time credits' scheme across the UK that offered rewards to people who volunteered within a community. 'There was no plan,' Dyson says, looking back on his career, which brought him to Nesta in 2012. He has not, thankfully, lost his sense of humour, and talks calmly about the challenges ahead. 'I've got weakness in my arms. I might struggle to pick that up,' he says, reaching out to lift a jug of water —which he does, successfully. 'I'm OK walking. I have some problems typing.' He has not yet moved out of his home in Greenwich, southeast London, which has four flights of stairs, because he does not want to 'inconvenience' his partner, Jenny, and their daughter, now three. 'I'm putting money aside for my family. More than I would otherwise.' The unspoken question, of course, is whether Dyson will live to see the fruits of the prize he has founded. How does he look to the future? 'I'm not thinking too much about that,' he says. 'I think Stephen Hawking was like this. He just ignored it.' Hawking was diagnosed at 21 and died at the age of 76. What does he want people to know about MND, and his prize fund? Dyson pauses. 'We have to bring the timeframe of a treatment forward with this prize. I want people to believe it's solvable, and I think that's true.'

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