UCL Queen Square Institute of Neurology


Motor Neurone Disease

Medline NLM definition: selective degeneration of the motor neurons primarily involving the anterior horn cells of the spinal cord, motor nuclei of the medulla, and corticospinal tracts. The main clinical forms are AMYOTROPHIC LATERAL SCLEROSIS, progressive muscular atrophy (MUSCULAR ATROPHY, SPINAL), progressive bulbar palsy (PARALYSIS, BULBAR), and PRIMARY LATERAL SCLEROSIS.

Motor Neurone Disease: information from the NHS website

Motor Neurone Disease: information from Patient UK website

Motor Neuron Disease: factsheet from NINDS, the National Institute of Neurological Disorders and Stroke information (US site)

PubMed Medline search on Motor Neurone Disease

Support Groups

Motor Neurone Disease Association
Site includes information on motor neurone disease, advice on benefits, a guide to the NICE guideline, some information in languages other than English, and key facts. Has a national helpline giving information and advice. Gives financial support. Provides locally based support and practical help. There is information about the MND Register, a research study that aims to collect information about everyone living with motor neurone disease. Website has links to latest MND news, research, and gives information about care services.

The Brigitte Trust
The Brigitte Trust is an independent registered charity offering a free service of emotional support and practical help to adults and their carers living in every Surrey borough and facing the challenges of life-limiting conditions including as motor neurone disease, multiple sclerosis, multiple system atrophy or progressive supranuclear palsy.

Scottish Motor Neurone Disease Association
Exists to help people affected by motor neurone disease in Scotland. Offers care and support to anyone diagnosed with MND in Scotland. Provides accurate and up-to-date information on all aspects of MND. Promotes and funds research, particularly research that will lead to improved care and quality of life for those living with MND.

PatientsLikeMe - ALS/Motor Neuron Disease Forum (US site with UK members) Patients share their treatments and outcomes not just to help themselves, but to help others.

Brain and Spine Foundation
Information on living with a neurological condition and on diagnosis. There are publications and resources. The useful glossary of neurological conditions (under 'Information and support') includes links to some other organisations as well as to Brain and Spine Foundation information.

Neurological Alliance
Collective voice for 80 organisations, including stroke and brain injury. Organisations are listed at https://www.neural.org.uk/our-members/, a good place to start if looking for information on those conditions. Site also includes information about living with a neurological condition, a glossary, and information about onset and diagnosis as well as a small set of real life stories.

NHS Inform: brain, nerves and spinal cord 
NHS inform is Scotland's national health information service, with the aim of providing the people in Scotland with accurate and relevant information to help them make informed decisions about their own health and the health of the people they care for.