Motor Neurone Disease Association

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.

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:

• Gina Bellman, actor
• Chris Broad, former English cricketer
• Daniel Brocklebank, actor
• Benedict Cumberbatch, actor
• Baroness Finlay of Llandaff, palliative medicine consultant and parliamentarian
• Taron Egerton, actor
• Charlotte Hawkins, television presenter
• Lily James, actor
• Jonathan Phang, cook and television presenter
• Eddie Redmayne, actor, who played Professor Stephen Hawking (who lived with MND) in the film The Theory of Everything
• 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.
• Jeremy Vine, television and radio presenter

Past patrons

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

References

References

1. {{EW charity. 294354. Motor Neurone Disease Association
2. [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]
3. (2023-01-17). "Tanya Curry – Chief Executive". MND Association Official Website.
4. "MND Association position statement on research involving animals".
5. "Which Charities Fund Animal Experiments?". [[Animal Aid]].
6. "Living with motor neurone diseasee".
7. (26 July 2021). "Introducing our new patrons: Rob Burrow MBE and Kevin Sinfield OBE". Motor Neurone Disease Association.
8. "Ambassadors {{!}} MND Association".
9. (29 October 2015). "Film star Taron named MND charity ambassador". Cambrian News.
10. (4 November 2021). "Film star Lily James to co-host Virtual Pub Quiz to raise awareness of MND". Motor Neurone Disease Association.
11. (21 June 2023). "Association patron Eddie Redmayne thanks Association volunteer". Motor Neurone Disease Association.
12. (28 June 2022). "Announcement of the death of Prof Sir Colin Blakemore". Motor Neurone Disease Association.
13. (14 March 2019). "Professor Stephen Hawking – One year on…".