About motor neuron disease

Motor Neuron Disease (MND), also known as Amyotrophic lateral sclerosis (ALS), is a rapidly progressive, fatal neurodegenerative disorder in which motor neurone death causes muscle weakness and wasting, leading to a loss of motor control as well as bulbar and respiratory function.

The average course of the disease is 2.5-3 years from symptom onset. Half of people with the disease die within 14 months of diagnosis. The current standard of care, riluzole, although marginally effective in extending survival in MND patients, does not show clinical benefits on lung function, fasciculations, muscle strength or motor symptoms.

A key feature of MND is the speed of progression. This poses huge problems of adjustment for affected individuals; an escalating burden on carers and families; and a challenge to those purchasers and providers of healthcare who are involved in meeting the variable, rapidly changing and complex care needs. The average statutory healthcare costs in the UK are £16500 per month, per patient.