Motor Neurone Disease Association Explained

The Motor Neurone Disease Association (MND Association) focuses on improving access to care, research and campaigning for those people living with or affected by motor neurone disease (MND) in England, Wales and Northern Ireland. MND is also known as amyotrophic lateral sclerosis (ALS) or, in the United States, Lou Gehrig's disease.

The Association is the only national charity in England, Wales and Northern Ireland that funds and promotes global research into the disease and provides support for people affected by MND.

Activities

Research

The MND Association funds and promotes research to understand what causes MND, how to diagnose it and, most importantly, how to effectively treat it so that it no longer devastates lives. It does this by:

• Funding research
• Coordinating research through conferences and symposia

The Association organises the International Symposium on ALS/MND, an annual event which brings together leading international researchers and health and social care professionals to present and debate innovations in their fields.

The Association funds research that includes animal testing.^{[3] [4]}

Care and information

• Provide information to patients and carers
• Provide care through a network of branches and regional care advisers

Fundraising

• Fundraising and income generating activities
• The Association has 87 volunteer branches and groups across England, Wales and Northern Ireland, that assist with regional fundraising activities
• The Association benefits from legacies and also tribute funds, which are left in the memory of people affected by the disease.

Awareness and campaigns

The Association has a campaigns network that helps shape a better future for people with neurological conditions such as MND. It does this by:

• Lobbying government
• Raising awareness of the condition and encouraging adoption of best practice such as the MND Charter and NICE guidelines for MND.
• Undertaking awareness activities across the year using media and PR opportunities.
• Sharing information, informal advice and expertise via their podcast, MND Matters (launched in March 2021).

Patrons and ambassadors

Current patrons and ambassadors for the organisation include:

• Chris Broad, former English cricketer^[5]
• Benedict Cumberbatch, actor
• Kevin Sinfield, former England rugby league international, and friend and former Leeds Rhinos teammate of Rob Burrow who died from complications of MND in 2024.
• Baroness Finlay of Llandaff, palliative medicine consultant and parliamentarian
• Charlotte Hawkins, television presenter
• Eddie Redmayne, actor, who played Professor Stephen Hawking (who lived with MND) in the film The Theory of Everything^[6]
• Jeremy Vine, television and radio presenter
• Gina Bellman, actor^[7]
• Lily James, actor^[8]
• Taron Egerton, actor

Past patrons

• Professor Stephen Hawking, cosmologist and theoretical physicist (who had lived with MND for many years)^[9]
• Sir Colin Blakemore, neurobiologist^[10]
• Rob Burrow, former England rugby league international, who died from complications of MND in 2024.

Notes and References

1. https://www.mndassociation.org/sites/default/files/2024-08/Annual%20Report%202023.pdf 'Annual report and consolidated financial statements for the year ended 31 December 2023', Motor Neurone Disease Association
2. Web site: Tanya Curry – Chief Executive . MND Association Official Website . 2023-01-17 . 2023-01-17.
3. Web site: MND Association position statement on research involving animals. Motor Neurone Disease Association . 3 August 2023.
4. Web site: Which Charities Fund Animal Experiments? . . 23 August 2023.
5. News: Introducing our new patrons: Rob Burrow MBE and Kevin Sinfield OBE . 8 September 2023 . Motor Neurone Disease Association. 26 July 2021.
6. News: Association patron Eddie Redmayne thanks Association volunteer . 22 January 2024 . Motor Neurone Disease Association. 21 June 2023.
7. Web site: Living with motor neurone diseasee . Motor Neurone Disease Association . 8 September 2023 . 3 (foreword).
8. News: Film star Lily James to co-host Virtual Pub Quiz to raise awareness of MND . 8 September 2023 . Motor Neurone Disease Association . 4 November 2021.
9. Web site: Professor Stephen Hawking – One year on… . Motor Neurone Disease Association . 22 September 2023 . 14 March 2019.
10. News: Announcement of the death of Prof Sir Colin Blakemore . 22 September 2023 . Motor Neurone Disease Association . 28 June 2022.