Motor neuron disease research

About motor neuron disease (MND)

Motor neuron disease (MND), also known as amyotrophic lateral sclerosis (ALS), is a rare neurodegenerative disease that affects 5,000 people in the UK. 

MND affects the nerves in the brain and spinal cord that form the connection between the nervous system and muscles. The disease impacts on movement, speech, and leads to weakness that gets worse over time. Most people with MND eventually lose the ability to walk, dress, write, speak, swallow, and breathe.

There is currently no cure for the disease, but there are treatments which can help reduce the impact on a person's daily life. 

Some people live with the condition for many years. However MND can significantly shorten life expectancy and, unfortunately, eventually lead to death.

Opportunities to take part

There is an urgent need for more research into the disease - and for more people to take part, including carers and healthy volunteers - to improve health, care and outcomes for patients with the disease.

You can take part in MND research in many ways - from filling out a survey at home to taking part in new treatment trials. Researchers need people living with MND, their family, carers, as well as healthy volunteers to help improve diagnosis, care and quality of life of people affected by the disease. 

Case study

Former football manager with motor neuron disease appeals for others to take part in research

A dentist and former football manager whose life changed dramatically following his diagnosis with motor neuron disease (MND) has appealed for others who have the disease to join him in a new brain imaging study to help the race to find new treatments.

MND research - making a difference

News: Promising motor neuron disease drug helps slow disease progression

A landmark trial supported by NIHR researchers has found an experimental drug targeting a rare form of motor neuron disease (MND) showed significant physical benefits after 12 months.  

The phase 3 clinical trial showed the new drug tofersen can slow and reduce progression of the disease in patients with MND caused by the faulty SOD1 gene. 

News: £50m to accelerate motor neuron disease research

The NIHR will play a critical role in new government action speeding up research into motor neuron disease across the UK. Immediate investment is being made into specialist research centres and partnerships so patients can benefit from cutting edge treatments sooner.