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

Times

4 hours ago

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.
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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.'