Welsh researchers bring hope for people living with motor neurone disease

To mark Global Motor Neurone Disease (MND) Awareness Day (21 June), we looked at the dedicated work of the Welsh research community in developing effective treatments and therapies to bring hope to people living with the disease. 

MND is a rapidly progressing degenerative disease which attacks the nerves that control movement. It aggressively causes muscle weakness and wasting, and affects most muscles in the body, leading to an inability to use both upper and lower limbs. It also leads to difficulty speaking, breathing and swallowing, among other symptoms.

There is currently no effective treatment or cure, and life from the onset of symptoms can range from between two and five years. Nearly a third of people die within one year of diagnosis.

In south Wales, the MND Care South Wales Network is running 12 clinics to support people living with MND across five health boards. The Network receives an average of 90 newly diagnosed patients each year. By the end of 2021, the Network had supported 1,628 patients diagnosed with MND.

Health and Care Research Wales supports MND studies in Wales by identifying new MND projects to add to the National UK Research Portfolio, providing a pipeline for future research opportunities, and co-ordinating study setup and approvals at health boards covered by the Network.

The Motor Neurone Disease Systematic Multi-arm Adaptive Randomised Trial (MND Smart), first launched in Cardiff in January 2022, and was designed to speed up the time it takes to find medicines that can slow, stop or reverse the progression of MND.

Dr Kenneth Dawson, Principal Investigator of MND Smart said the study is investigating three drugs - Memantine, Trazodone and Amantadine – which are already in clinical use for other conditions. The trial has been co-ordinated in Edinburgh, and Cardiff is one of a number of participating UK centres.

Dr Dawson said: “We have so far successfully recruited 34 patients from across the MND Care South Wales Network area. Most contacts can be carried out over the telephone or remotely as required, enabling individuals from a wide geographical area to be eligible.

This is the first time that a drug trial for people with MND has been based locally in Wales, reducing the need for travel to other UK trial centres and giving those living with the condition in south Wales hope for the future.”

Anthony Isaac, 75, from Neath, was first diagnosed with MND in 2021 and has been taking part in the trial since September 2022, taking a syringe of an oral drug each day.

He said: “I decided to take part in the trial because I want to live with a positive attitude. I was a musician, and still enjoy listening to music and watching drama.”

Minister for Health and Social Services, Eluned Morgan, said:

MND is a devastating condition. The importance of research cannot be underestimated and it is fantastic that in the past year we have seen rapid progress in furthering our understanding of the condition and in developing potential treatments.   

“I’m grateful to people living with MND in Wales who want to take part in research and am pleased that they are able to access the studies with the help of teams across the country – including the MND teams in mid and north Wales, and the South Wales MND Care and Research Network. I look forward to seeing this research progress further leading to new treatments, which will make a real difference to the future of people living with this disease in Wales and elsewhere.”

UK incidence suggests that two to three people in every 100,000 of the general population will develop MND each year. Each day, six people are diagnosed with MND and six people die because of the disease.  

Currently, there are nine studies taking place in Wales, with 262 people participating.

Learn more about upcoming MND studies using the links below, including details of potential involvement opportunities.

• OptiCALS - A Randomised Controlled Trial investigating if getting nutrition right for people living with MND can improve quality of life and survival
• Online peer-to-peer support programme for carers of MND - Understanding the impact of a virtual peer support programme on psychological wellbeing and caregiver burden on family caregivers of people with MND

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