At just 47, Moody is more than a decade younger than the average person diagnosed with MND; he was \u201covercome with emotion\u201d when he spoke about telling his sons \u2013 17-year-old Dylan and 15-year-old Ethan \u2013 the news. \u201cIt was the hardest thing I\u2019ve ever had to do,\u201d he told reporters. \u201cThere\u2019s something about looking the future in the face and not wanting to really process that at the minute,\u201d Moody told the BBC on Monday. \u201cIt\u2019s not that I don\u2019t understand where it\u2019s going. We understand that. But there is absolutely a reluctance to look the future in the face for now,\u201d he admitted. <\/p>\n
Heartbreakingly, rugby has seen this story play out before. Scotland\u2019s Doddie Weir, England\u2019s Rob Burrow and Gloucester\u2019s Ed Slater (the first two sadly no longer with us) have all spoken about their own MND diagnoses in recent years, turning their grief into campaigns for awareness and research funding. Beyond MND itself, the toll of contact sport itself is becoming more difficult to ignore: former Wales international star Alix Popham and England World Cup winner Steve Thompson have both been diagnosed with early-onset dementia linked to repetitive head injury, while other athletes have faced diagnoses of Parkinson\u2019s and related neurological decline. Moody\u2019s latest diagnosis adds weight to an uneasy \u2013 and difficult to answer \u2013 question that has haunted elite sport for years: could the physical extremes demanded come with a hidden price? <\/p>\n
MND is a relatively rare condition, most common in people over 50 \u2013 the average age for a diagnosis is 60-67. It\u2019s not easy to spot or diagnose at first \u2013 sufferers may find they have stiff or weak hands, legs or feet, or begin to experience twitches, spasms or muscle cramps. It\u2019s a progressive disease that is often separated into subtypes but symptoms frequently overlap. <\/p>\n
Very loosely, the subtype diagnosed will determine the prognosis given. Amyotrophic lateral sclerosis (ALS) \u2013 the type Lewis Moody is suffering with \u2013 is one of the most severe, along with progressive bulbar palsy (PBP), which primarily affects the muscles controlling speech and swallowing, both of which have a more rapid progression than subtypes like primary lateral sclerosis (PLS) and progressive muscular atrophy (PMA). <\/p>\n
Around 5,000 adults in the UK have the disease at any one time and it\u2019s thought to be caused by a combination of genetics (affecting 20 per cent of those diagnosed), environmental and lifestyle factors. Identifying exactly what those factors are, and why they might contribute to the onset of MND, is the endeavour of researchers like Dr Johnathan Cooper-Knock. <\/p>\n
Cooper-Knock, a neurologist and geneticist based at the University of Sheffield, has spent much of his career studying these missed connections. For a long time, drawing correlations between extreme sport and neurological conditions was considered controversial. But multiple studies have now begun to map the link between the two \u2013 something that Cooper-Knock spotted first hand. <\/p>\n
\u201cA lot of very athletic people were coming into clinic with motor neurone disease,\u201d he tells me. \u201cFor a long time we wondered if it was just survival bias \u2013 that if you\u2019re very fit and healthy, you don\u2019t get cardiovascular disease, therefore you\u2019re more likely to end up with motor neurone disease.\u201d But the data started to tell a different story.<\/p>\n
Over the last decade, his team \u2013 alongside Professor Pam Shaw\u2019s internationally renowned MND group \u2013 has uncovered a subtle but important truth: that extreme exercise can increase the chance of being diagnosed with MND, but \u2013 crucially \u2013 only in a small subset of people with certain genetic make-ups.<\/p>\n
\u201cFor the majority of us,\u201d he stresses, \u201cexercise is profoundly good \u2013 even protective. But for a few, those who push their bodies to molecular limits, something about the way their motor neurons fire might make them vulnerable.\u201d<\/p>\n
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Moody, pictured with the ball, was renowned for his bravery on the pitch, earning him the nickname \u2018Mad Dog\u2019 (PA)<\/p>\n
To better understand how it works, Cooper-Knock says, it\u2019s useful to imagine that every motor neuron in our bodies has a safety brake to protect it \u2013 but in some people, the brake is genetically turned off. Having the brake off might mean that they\u2019re able, then, to perform extraordinary levels of endurance and excel in sport. \u201cBut it also means that each time they exercise, their system is running in a vulnerable state, without protection,\u201d he says. \u201cOver years, that might tip certain neurons over the edge.\u201d <\/p>\n
He cites a study \u2013 the Vasaloppet cross-country ski race in Sweden \u2013 that found participants in the top five per cent (or the most extreme exercisers) had roughly four times the background risk of developing MND. As for everyone else in the race, their risk was actually lower than average. \u201cIt\u2019s that top sliver of intensity where we see something happening,\u201d he explains. \u201cAnd even then, it\u2019s rare.\u201d <\/p>\n
To understand why those \u201csafety-off\u201d neurons failing matters, you need to know what they do. \u201cThey\u2019re like electrical cables,\u201d explains Dr Nick Cole, head of research for the Motor Neurone Disease Association. \u201cSignals travel from the brain down the spinal cord to the muscles. When you want to move your finger, that\u2019s the current running down. But for reasons we don\u2019t fully understand, those cells die in MND \u2013 and, unlike other tissues, they don\u2019t regenerate.\u201d <\/p>\n
That failed signal causes muscles to waste; speech, swallowing, movement and eventually breathing becomes impossible. The mind\u2019s function remains untouched, however. \u201cYou become trapped in a failing body,\u201d says Cole. \u201cIt\u2019s devastating. It\u2019s also one of the biggest scientific puzzles of our time.\u201d <\/p>\n
New science is trying to solve it all the time. Last year, Professor Paul Chazot and his team at Durham University published findings from the UK Rugby Health Study, examining the biological aftermath of concussion and contact sport. They followed professional rugby players, sampling their blood up to eight years after retirement from sport \u2013 and found a striking revelation. Players with a history of multiple concussions carried distinct patterns of proteins in their blood \u2013 the same proteins seen in people with brain diseases like MND. None of them had actually been diagnosed with neurological conditions, but the presence of those molecular changes suggested something subtle (but long-lasting) was occurring inside the brain, long before any symptoms can be seen. <\/p>\n
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Former rugby league player Rob Burrow, in a wheelchair pushed by former teammate Kevin Sinfield on a fundraising marathon, died in June 2024 after battling MND (PA Archive)<\/p>\n
This could be key to understanding why, how and when to take preventative measures in the fight against MND. Chazot\u2019s team believe it might be down to something called the \u201cbrain-body barrier\u201d \u2013 the delicate protective membrane that separates the brain\u2019s internal environment from the rest of the body. Even impacts that fall short of concussion but which are repetitive could contribute to damaging this barrier, allowing rogue proteins to leak in.<\/p>\n
\u201cWe think these biomarkers could be early indicators of trouble ahead,\u201d Chazot explains. \u201cThe hope is that by identifying these changes early, we can intervene before lasting damage takes hold.\u201d<\/p>\n
It\u2019s hopeful. In fact, there\u2019s a lot of hope to be found in the excellent research being carried out in the UK, US and Australia in recent years. \u201cThere are more clinical trials happening now than at any point in my career,\u201d Cooper-Knock says. One recent breakthrough is a therapy for patients with SOD1 mutations. It works by silencing the faulty gene and halting production of the toxic protein. Currently it\u2019s only fit for 1-2 per cent of patients \u2013 but it\u2019s a solid baseline to find therapies for the remaining 98 per cent. <\/p>\n
There are also more unconventional therapies in the pipeline. For the last 20 years, Professor Chazot and his team have been experimenting with red-light therapy, using near-infrared light on the gut and brain to target mitochondria \u2013 \u201cthe battery of the cell\u201d \u2013 and boost cell energy while reducing inflammation. The gut is crucial, he says, and often overlooked \u2013 last week a separate study found that researchers believe Parkinson\u2019s disease actually begins in the gut microbiome. <\/p>\n
Early clinical studies and case trials he has conducted have seen patients with severe forms of MND show stabilisation or even modest improvement in their symptoms. \u201cWe\u2019re seeing encouraging effects in a number of people, though not everyone,\u201d Chazot explains. \u201cWhat\u2019s exciting is that this could be a completely non-invasive, side effect-free, low-risk way to help the body heal itself.\u201d<\/p>\n
Still, the approach sits at the edge of mainstream neuroscience \u2013 and there\u2019s plenty of scepticism about his findings. \u201cBasically, \u2018it can\u2019t be that simple\u2019 is the usual response,\u201d he says. The therapy has been used in Australia and the US with positive anecdotal results, but many neurologists say larger, blinded trials are needed before the technique can be fully endorsed. Chazot is pushing for exactly that: a major, multi-centre study to test whether red-light treatment can genuinely slow or modify disease progression in MND. \u201cIt\u2019s not a cure,\u201d he stresses, \u201cbut if we can buy people meaningful time, preserve their function, that\u2019s huge.\u201d<\/p>\n
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Charity fundraisers such as the ice bucket challenge have helped raise awareness of the condition (Getty)<\/p>\n
If there\u2019s one thing that everyone in the field agrees on, though, it\u2019s that awareness matters. Since the infamous \u201cice bucket challenge\u201d of the mid-2010s, that has improved. And, according to the MND Association, the last five years have seen an unprecedented surge of public interest and funding. More is still needed. <\/p>\n
\u201cMND is curable,\u201d Cole says, bluntly. \u201cWe just have to fund it long enough to find the cure.\u201d <\/p>\n
There\u2019s cautious optimism. \u201cWe\u2019re making progress,\u201d Cooper-Knock says. \u201cReal progress. The more support we have, the faster it will come. What we all want \u2013 what Lewis and every patient deserves \u2013 is for the next diagnosis to come with a treatment that truly changes the outcome. That could be within reach.\u201d <\/p>\n
The hope is that as we understand more, tools for prevention will be found. In theory, one day, at-risk individuals \u2013 including elite athletes \u2013 could have their genetic and molecular profiles screened, long before any real damage occurs. <\/p>\n
For now, Lewis Moody joins a long line of athletes turned advocates, their diagnoses already shifting the understanding and, hopefully, encouraging more funding and focus. Each name added to that list \u2013 Weir, Burrow, Slater and now Moody \u2013 underlines the urgency of the question that still looms over sport: how much do our games demand, and how do we mitigate that cost? Together, they\u2019re forcing science and sport alike to look harder, dig deeper and move much faster towards a world where MND is not the life sentence it is now.<\/p>\n","protected":false},"excerpt":{"rendered":"Your support helps us to tell the story From reproductive rights to climate change to Big Tech, The…\n","protected":false},"author":2,"featured_media":184804,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[46],"tags":[6647,102,56,54,55],"class_list":{"0":"post-184803","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-fitness","8":"tag-fitness","9":"tag-health","10":"tag-uk","11":"tag-united-kingdom","12":"tag-unitedkingdom"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/184803","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/comments?post=184803"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/184803\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media\/184804"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media?parent=184803"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/categories?post=184803"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/tags?post=184803"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}