Former England rugby captain Lewis Moody has made the "incredibly hard" announcement that he has been diagnosed with Motor Neurone Disease (MND), also known as Amyotrophic Lateral Sclerosis (ALS). The 47-year-old World Cup winner revealed his condition just two weeks after receiving the diagnosis, noting that his current symptoms are minor, including "a bit of muscle wasting in the hand and the shoulder."
Moody's diagnosis tragically follows the paths of rugby heroes Doddie Weir (who died in 2022) and Rob Burrow (who died in 2024). His experience has once again focused national attention on MND, a devastating, progressive neurological condition with no known cure, which destroys the motor neurones that control essential muscle activity. Affecting approximately 5,000 adults in the UK at any one time, the disease typically shortens life expectancy, though remarkable exceptions like the late Professor Stephen Hawking demonstrated that survival can extend for decades.
MND and the British South Asian Community: Unpacking the Statistics
The question of how MND impacts the diverse communities across the UK, particularly the British South Asian population (including British Indian, Pakistani, and Bangladeshi communities), has been the focus of important recent research.
Unlike some diseases that show significant ethnic variation, major studies analysing MND incidence in England have concluded that the age-standardised incidence of Motor Neurone Disease in the British Bangladeshi, British Indian, and British Pakistani populations is similar to that of the White British population.
When adjusted for age—as MND predominantly affects older individuals—the rate of new diagnoses in these communities is comparable to the overall UK rate. This crucial finding confirms that all British communities face a similar risk profile for developing this debilitating condition, underscoring the urgent need for inclusive awareness, early diagnosis, and equitable access to specialist MND care for everyone in the UK.
The Rugby Link and Early Symptoms
The painful lineage of rugby stars diagnosed with MND—Moody, Weir, Burrow, and Ed Slater—highlights a potential occupational risk. A landmark 2022 study found that former male international rugby players face up to 15 times the risk of an MND diagnosis compared to the general population. This has led to widespread calls for immediate changes in rugby's contact and training protocols to protect player welfare.
MND symptoms develop gradually and may be subtle at first. Early signs to watch for include:
- Muscle Weakness: Weakness in the ankles or legs, making walking or climbing stairs difficult. Moody’s own journey began with unexplained weakness in his shoulder.
- Speech and Swallowing: Slurred speech or difficulty swallowing food.
- Fine Motor Skills: A weak grip, or difficulty holding or gripping objects.
- Muscle Signs: Persistent muscle cramps and twitches (fasciculations).
- Weight Loss: Unexplained loss of weight and muscle bulk.
The Quest for Prevention: Is a Cure Possible?
There is currently no way to prevent Motor Neurone Disease. The underlying mechanisms of why the motor neurones fail are still being uncovered, although a combination of genetic predisposition and environmental factors is thought to "tip the balance."
Research Breakthroughs Offering Hope
While prevention remains elusive, immense progress is being made in slowing progression and targeted treatment, often referred to as neuroprotection:
- Targeted Gene Therapy: The gene-silencing drug Tofersen recently gained regulatory approval in the UK for patients with a specific gene mutation, SOD1-MND. This represents a huge leap in personalised medicine for MND, directly addressing a genetic cause.
- Inflammation and Autoimmunity: Research suggests an autoimmune response may play a role in MND progression. Studies in 2025 identified types of immune cells, CD4+ T cells, that attack a key protein in neurons. Crucially, researchers found that the activity of anti-inflammatory T cells is linked to longer survival times, opening a pathway for therapies to control this immune response.
- Experimental Drugs in Trials: New compounds are continually being tested in clinical trials, including drugs like Dazucorilant (which blocks a protein that binds to stress hormone cortisol to reduce inflammation) and Masitinib (which targets neuroinflammation). Collaborative trials like MND-SMART are constantly adding and removing new drugs, accelerating the search for effective treatments.
For those already living with MND, treatment focuses on multidisciplinary care, involving occupational therapy, physiotherapy, and medication like Riluzole to slightly slow the disease’s course, ensuring the highest possible quality of life.