Motor neurone illness defined: What’s it? How does it have an effect on individuals? What hyperlinks are there to sport and why is there hope?

Motor neurone illness (MND) is a uncommon situation, however it will possibly have an effect on any grownup of any age, though usually it is more likely to have an effect on individuals over 50.

As much as 5,000 individuals within the UK at anyone time could have MND. Whereas there’s rising consciousness of MND, there’s a lot that isn’t extensively understood past the professionals working inside analysis, medical and medical environments.

Inside sport, MND has lately affected some high-profile sports activities stars, comparable to rugby legends Rob Burrow, Doddie Weir and Joost van der Westhuizen, who sadly misplaced their lives to the illness.

Former England rugby union captain Lewis Moody was recognized with MND in 2025. His Leicester team-mate Ed Slater acquired his analysis of MND in 2022.

Footballers have additionally been struck down with MND. Former Liverpool and Bolton defender Stephen Darby retired from the sport in 2018 after his analysis, whereas Marcus Stewart, who performed within the Premier League for Ipswich and Sunderland within the early to mid-2000s, introduced he had MND in 2022.

Senegal Worldwide Papa Bouba Diop, who performed most of his membership profession in England with Fulham, Portsmouth, West Ham and Birmingham Metropolis, misplaced his battle with MND in 2020 on the age of simply 42. England and Gloucestershire cricketer David ‘Syd’ Lawrence died from MND in 2025, only a 12 months after receiving his analysis.

So, what’s MND? How does it have an effect on people who find themselves recognized? Is there a hyperlink between the illness and sport? What’s the present understanding? And what hope is there for controlling the illness and maybe at some point discovering a treatment?

Dr Brian Dickie MBE is among the main figures on MND within the UK, having graduated with a PhD in Neuropharmacology earlier than taking on analysis fellowships and educating roles on the College of Oxford. Within the late Nineteen Nineties, he joined the MND Affiliation and is their present chief scientist. I sat down with Dr Dickie on the MND Affiliation’s Headquarters, and our dialog went as follows.

What’s motor neurone illness?

Dr Dickie: “In order to understand Motor Neurone Disease, we probably have to start by talking about motor neurons. Motor neurons are nerve cells which effectively connect the brain to the muscles. They help us to convert thought into movement. They are incredibly long, incredibly thin – they’re microscopically thin – but they can be up to a meter in length. So, they’re incredibly physically fragile, and basically, they’re like telegraph wires, almost.

“They carry electrical indicators from the mind down the backbone and out to the muscle mass, and so they assist us to transform that thought into motion, and, in fact, in MND, the issue is that the motor nerves are dying, they’re degenerating and so the strains are down. The indicators cannot get by way of.

“A person can think about making that movement, but they really struggle to get the commands down to their muscles. So, what we see occurring with MND is progressive muscle weakness, paralysis and ultimately death. About 50 per cent of people will die within two years of diagnosis.”

How does it have an effect on individuals?

Dr Dickie: “We often say that no two cases of MND are the same, but roughly, in about a third of cases, it starts by affecting the muscles in the lower limbs, a third in the upper limbs, and a third in what we call the bulbar muscles, which are the muscles involved in speech and swallowing. So, you can imagine that the symptoms and the disease progression can vary tremendously depending on what particular muscle groups are affected.

“The identical goes for the pace of development of the illness, however typically it is quickly progressive inside one, two or three years, however in fact, some individuals stay with it for a lot, for much longer. Stephen Hawking was maybe one of the best working example as a result of he lived with MND for round 55 years.”

How are you aware you probably have MND, and when do signs begin?

Dr Dickie: “We don’t know when this disease actually starts, but we believe it starts years, possibly even decades, before the first physical symptoms of the disease appear. One of the reasons for that is that the brain is incredibly good at compensating for anything that’s going wrong.

“So, it retains going, it retains going, it retains going, it retains going till a threshold is reached, and it is solely at that time that the system cannot cope anymore, and it is at that time that the primary signs of the illness seem.

“We then have an additional delay, which is rather frustrating in diagnostic terms because it’s still taking a year on average from somebody saying, ‘perhaps I need to go to the GP about this, you know I’m tripping up, I’m not able to grip things as well as I could in the past’ and actually being given a diagnosis by the neurologist and in a disease that will kill 50 per cent of people within two years of symptoms onset that could be a critical therapeutic window that we’re missing at the moment.

“A bit bit like most cancers, get in early, deal with early. If we may do the identical with MND, we would really have the ability to develop more practical therapies.”

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What if – if any – hyperlink is there between MND and sport?

Dr Dickie: “If there was a single reason behind MND, we might have discovered it a very long time in the past. It is what we name a multifactorial illness. In different phrases, there are going to be quite a few various factors concerned in initiating the illness and likewise within the pace of development.

“To use an analogy, it’s a little bit like a set of balancing scales, like the scales of justice. Something has to tilt the balance in favour of the disease occurring. Some of these factors will be genetic; you inherit them from your parents, but they’re a little bit like grains of sand on the scales.

“They sit there, however the scales do not transfer, so maybe environmental elements are concerned as effectively, and we nonetheless actually do not perceive these. We’re beginning to get some clues, however we do not perceive what the environmental elements are. The probabilities are that there have to make certain occasions occurring at sure factors in an individual’s life that lastly tilt the stability many, a few years later.

“Now we do know in some cases the disease does run in families. In about 10 per cent to 15 per cent of cases, there’s a family history, so in that case, there’s probably a stronger genetic component. It doesn’t absolutely ensure that the scales tilt, but it primes the motor neurons to degenerate later in life. It makes it more likely.

“When it comes to the obvious improve in sportsmen creating MND later in life, I would say that the jury is out. There is definitely a difficulty there that must be explored, however there’s most likely not a single reply to it. So, for instance, numerous curiosity is concentrated on rugby and soccer due to the high-impact nature of these explicit sports activities, however we even have proof from cross-country skiers in Scandinavia that signifies they really have a barely elevated threat of creating MND in comparison with most of the people and that perhaps factors extra to high-intensity train.

“Linked to that, people with MND seem to exhibit hypermetabolism, so in other words, their cells are burning energy at a slightly higher rate than the general population. It’s not huge, it’s about 10 per cent, but if you imagine that you’re overrevving your car engine, it’s not a problem at the time as your car’s just as nippy as ever, but if you’re doing that for tens of thousands of miles, then it could cause problems. We just don’t know at the moment.”

How may sports activities authorities assist?

Dr Dickie: “I’ll start by trying to explain the challenges in identifying the environmental and lifestyle factors that might tilt the balance, because these are events that might be happening decades prior to the disease. So, asking people about what they ate, what they did and how much activity they did decades before is obviously fraught with a lot of danger. What we do need if we’re going to answer questions such as, ‘is there a role for high-intensity exercise in increasing the risk of MND?’

“And naturally, train, by and huge, is sweet for us. It reduces the danger of an entire vary of different situations, however may it’s considered one of these grains of sand on the scales that helps tilt the stability later in life? We actually want good medical information. Now there are a few methods through which we would have the ability to strategy that. One is by working with the sporting our bodies throughout completely different sports activities, each high-impact, high-intensity and perhaps lower-intensity sports activities and looking out on the incidence of illness later in life.

“One of the challenges is that although professional bodies can keep very good records during a person’s sporting career, they don’t keep the records that occur later in life, and of course, this is a disease that can occur years or decades after a person has retired from their sport.

“So, there are some gaps there, however there are gaps that might most likely be addressed if we may get that info collectively and work with most of the sporting our bodies.

“The second way is through big initiatives such as the UK Biobank or Our Future Health, where, in the case of Biobank, half a million people in the general public have signed up, and they are being followed throughout their lives. They’ve given blood samples, and they answer questionnaires.

“So, we construct up this sample of life occasions that happen years earlier than they develop these age-related illnesses, whether or not they’re Alzheimer’s illness, Parkinson’s illness, most cancers or certainly Motor Neurone Illness.”

What’s the newest analysis?

Dr Dickie: “MND is a complex disease. It’s a rare disease, so it maybe doesn’t quite get the attention that more common conditions do. However, I have seen a huge change over the past two to three decades. I first got involved in MND research about 30 years ago, and it was definitely a scientific backwater then, a Cinderella disease.

“There was little or no exercise happening worldwide, however since then, and significantly previously 20 years, the expansion in scientific understanding has grown exponentially, and we have actually bought a really collaborative worldwide group. They don’t seem to be working in silos; they function collectively, and within the uncommon illness enviornment, it’s completely very important that we share our information and our experience.

“I think it’s really exciting that this has moved MND from this scientific backwater really to the forefront now of neurodegenerative disease research alongside Alzheimer’s, alongside Parkinson’s disease. Hopefully, actually to the forefront of treatment because the research community is starting to change the scientific question which 30 years ago was, ‘what on earth is going on here?’ to, ‘OK, what can we do about it?’

“I typically get requested by individuals with MND, ‘the place are we? How lengthy till an efficient remedy or a treatment?’ I can not give a straight reply to that query. What I can say is that we would not see the sunshine on the finish of the tunnel but, however the practice is on the right track, and it is selecting up pace.

“There has been a vast increase in scientific knowledge about this disease, and I think, excitingly, that is attracting the attention of the biotechnology companies and the drug companies, because they’re the ones that can take this knowledge that’s coming out of the universities across the world and develop effective treatments.

“It is a actually thrilling time in MND analysis as a result of we’re beginning to transfer into what’s known as translational science, which is admittedly all about drug discovery, drug improvement, and hopefully creating efficient therapies for this illness, and certainly we’re beginning to see the primary inexperienced shoots.

“For example, there’s a drug called Tofersen, which is currently being reviewed by the UK drug regulators, and it is only going to be used for a rare genetic form of the disease, which is about 2 per cent of all cases of MND. But certainly, in some patients who have been taking this drug in clinical trials, it has had quite a pronounced effect, and in some it has even stabilised their disease over many years.

“So, we imagine that if it really works for one kind, it’s proof of precept that related methods – they must be completely different – may work for different types and certainly all types of the illness as effectively. So, this proof of precept that you could preserve sick motor neurons alive in an ageing mind, in an ageing physique, is an absolute breakthrough, and I believe it is one that actually does present hope for the longer term.”

How have sportsmen and girls with MND helped improve consciousness of the illness?

Dr Dickie: “Public awareness of any disease is absolutely essential, especially for rare diseases like MND. It encourages the general public to donate money to research programs that hopefully will deliver effective treatments. It also, I think, is encouraging for people diagnosed with this disease and their families to know that there is public awareness about this, and this can reduce some of the stigma that can be attached with being diagnosed with a condition such as MND.

“It additionally, we hope, would improve the quantity of people that could have some preliminary signs of the illness to perhaps go to their GP a bit bit sooner and for GPs to refer these individuals if acceptable. That manner, we may pace up this diagnostic delay, which I believe is among the limitations to creating efficient therapies for MND.

“Increased awareness is absolutely important, and I think I’ve seen such a change in MND over the past 10-15 years. I think it really started with the Ice Bucket Challenge, where suddenly this disease came right to the forefront of media attention, and since then, of course, with Doddie Weir, Rob Burrow, Stephen Darby and Lewis Moody, we’ve managed to build on that and increase the awareness.

“Though we now have a imaginative and prescient of a world freed from MND, earlier than we get there, maybe we’d like a world stuffed with MND, and by that, I imply that the general public is conscious of it. The medical occupation is conscious of it, governments and coverage makers comprehend it and hopefully, by way of therapies, individuals will stay longer with this illness, and we are able to flip this right into a illness that you just stay with slightly than a illness that you just die of.”

For more information:

Every day, the MND Association supports people affected by Motor Neurone Disease, campaigns for better care and funds ground-breaking research. Because with MND, every day matters. Last year alone, the MND Association funded 53 new research grants totalling £14.9m, paid out over £4m in grants to support those living with the disease and answered 5,252 calls to their Connect Helpline.

To find out more about what help is available and the work of the MND Association, please visit www.mndassociation.org or name the Join Helpline on 0808 802 6262