References
All links accessed on June 26th 2025
1. NICE guideline NG42. ‘Motor neurone disease: assessment and management’. Published 24 February 2016, last updated 23 July 2019. https://www.nice.org.uk/guidance/ng42
2. Motor Neurone Disease Association. ‘What is MND?’. Page last updated 6 June 2025. https://www.mndassociation.org/about-mnd/mnd-explained/what-is-mnd
3. NHS Inform. Motor neurone disease (MND). Last updated 3 June 2024. https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/motor-neurone-disease-mnd/
4. National Institute of Neurological Disorders and Stroke (US). Motor Neuron Diseases. Last reviewed on March 26, 2025. https://www.ninds.nih.gov/health-information/disorders/motor-neuron-diseases
5. RD Arora and YS Khan. ‘Motor Neuron Disease’. StatPearls. National Library of Medicine National Center for Biotechnology Information. Last update August 7 2023. https://www.ncbi.nlm.nih.gov/books/NBK560774/
6. NHS Health A to Z. Motor neurone disease (MND). Page last reviewed 19 February 2025. https://www.nhs.uk/conditions/motor-neurone-disease/
7. ALS Association (US). ‘Lou Gehrig and the History of ALS’. https://www.als.org/understanding-als/lou-gehrig
8. RG Brotman, MC Moreno-Escobar et al. ‘Amyotrophic Lateral Sclerosis’. StatPearls. National Library of Medicine National Center for Biotechnology Information. Last update February 12, 2024. https://www.ncbi.nlm.nih.gov/books/NBK556151/
9. NICE Quality Statement QS126. Briefing paper. November 26 2015. https://www.nice.org.uk/guidance/qs126/documents/briefing-paper
10. S Vucic. ‘The varied motor neuron disease phenotypes’. Adv Clin Neurosci Rehabil 2014. https://acnr.co.uk/articles/the-varied-motor-neuron-disease-phenotypes/
11. MND Association. 2D. ‘Progressive muscular atrophy (PMA) - Information for people with or affected by progressive muscular atrophy’. Last revised March 2024. https://www.mndassociation.org/sites/default/files/2024-03/2D-Progressive-Muscular-Atrophy.pdf
12. MND Association and Royal College of General Practitioners. ‘Painless, progressive weakness – Could this be Motor Neurone Disease?’. Last revised April 2022. https://www.mndassociation.org/sites/default/files/2022-11/Red-Flag-tool-for-MND.pdf
13. MND Association. ‘Key facts and information. https://www.mndassociation.org/about-us/who-we-are/mnd-key-facts
14. R Dobson. ‘An exceptional man’. BMJ. 2002 Jun 22;324(7352):1478. https://pmc.ncbi.nlm.nih.gov/articles/PMC1123440/
15. MND Association. ‘Professor Stephen Hawkin – One year on …’. March 14 2019. https://www.mndassociation.org/media/latest-news/professor-stephen-hawking-one-year
16. MND Association and MND Professionals’ Community of Practice. ‘Pain in motor neurone disease’. https://www.mndassociation.org/sites/default/files/2022-11/P11%20Pain.pdf
17. MND Association and Royal College of Speech and Language Therapists. ‘Managing saliva problems in motor neurone disease’. https://www.mndassociation.org/sites/default/files/2023-08/P3%20Managing%20saliva%20problems%20v2.pdf
18. MND Association and RCSLT. ‘Managing dysphagia in motor neurone disease’. https://www.mndassociation.org/sites/default/files/2023-08/P8%20Dysphagia%202022%20v2.pdf
19. Royal College of Speech and Language Therapists. ‘Our statement on thickened fluids’. March 27 2023. https://www.rcslt.org/news/our-statement-on-thickened-fluids/
20. MND Association and MND Professionals’ Community of Practice. ‘Oral suction for motor neurone disease’. https://www.mndassociation.org/sites/default/files/2023-03/P9%20Oral%20suction.pdf
21. NICE technology appraisal guidance TA20. ‘Guidance on the use of riluzole (Rilutek) for the treatment of motor neurone disease’. Published January 23 2001. https://www.nice.org.uk/guidance/ta20
22. Summaries of Product Characteristics. emc – Electronic Medicines Compendium. https://www.medicines.org.uk/emc
23. ALS Association. Tofersen. https://www.als.org/navigating-als/living-with-als/fda-approved-drugs/tofersen
24. MND Association. ‘Tofersen in the UK. https://www.mndassociation.org/get-involved/campaigning/take-action/tofersen-petition
25. NICE in development GID-HST10062. ‘Tofersen for treating amyotrophic lateral sclerosis caused by SOD1 gene mutations ID3767’. Expected publication date to be decided. https://www.nice.org.uk/guidance/indevelopment/gid-hst10062