20 June 2025 Association News
Nearly two thirds (61%) of UK adults know little or nothing about motor neurone disease (MND), according to survey results released to mark Global MND Awareness Day (21 June).
Of the 2,077 people surveyed, more than half (53%) said they had heard of MND but didn’t know much about it, while 8% of people had never heard of the disease, according to the YouGov survey commissioned by the MND Association.
While some people correctly identified that MND can affect speech and movement, a third of people (33%) thought MND affects the sense of touch and 15% thought it caused a loss of smell. In reality, MND rarely affect the senses but it can leave people unable to move their limbs, talk and eventually to breathe.
The survey is part of the MND Association’s campaign to shine a light on the hidden realities of MND this Global MND Awareness Day.
Zoe Nixon, 47, was diagnosed with MND in 2022. To access vital services she might need as a result of the disease, Zoe has been forced to move house and has begun the process of adapting it to prepare for when she needs a wheelchair in the future. Heartbreakingly, Zoe’s oldest daughter is starting to prepare for the reality of caring for her younger sister after Zoe dies.
Zoe said: “My diagnosis of MND has affected my life in unimaginable ways. My relationship broke down because my partner could not handle the thought of being with somebody with MND. I made the decision to move closer to my eldest daughter as she may need to take care of my 13-year-old daughter. The impact it has on your life is a terrifying experience that 1 in 300 is going to face. There needs to be more awareness of MND. It is frustrating that we still do not have any treatment options for this killer disease. The only way this will change is by raising awareness and funds for research. We need to move faster.”
Affecting around 5,000 people in the UK at any one time, MND takes away people’s independence, their voice, and eventually their life. Yet this devastating disease is often misunderstood – and the needs and support required by people living with MND overlooked.
Only half of people surveyed (54%) knew people with MND may experience cognitive changes, despite this affecting up to 80% of people with MND in the advanced stages of the disease.
Additionally, more than a quarter (28%) of people surveyed didn’t know that people with MND couldn’t afford the additional costs of their condition. Many people with MND have to give up work and sometimes their partner has to as well, to take on caring responsibilities. This loss of income twinned with additional costs for heating, power, specialised equipment and housing adaptations means that people with MND face many additional costs.
The results also revealed that awareness of MND was lower in younger people, with only 20% of 18–24-year-olds knowing what MND is compared to almost half (48%) of people over 50.
Tanya Curry, Chief Executive from the MND Association said: “MND is a terminal, progressive disease that strips people of their voice, their independence, and eventually their life. But our survey shows awareness of MND and its devastating effects is far too low. Today, six people will be diagnosed with MND, and there will be six more tomorrow, and a further six the day after that. We owe it to them, and the 5000 people in the UK currently living with the disease, to make more people aware of the immense challenges MND brings and the realities people with MND face every day. We urge people this Global MND Awareness Day to visit our website, www.mndassociation.org, to learn more about MND, the support we provide to families affected by the disease and how you can join us to campaign for change.”
All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 2077 adults. Fieldwork was undertaken between 7th - 8th May 2025. The survey was carried out online. The figures have been weighted and are representative of all UK adults (aged 18+).