United Kingdom*

F | Full Member of the International Alliance |
Motor Neurone Disease Association (MND Association)
Kirstine Knox, Chief Executive
Tricia Holmes, Alliance Representative
Alan Graham, Alliance Board Member
PO Box 246, Northampton, NN1 2PR UK
Tel: +44 1604 250505
Fax: +44 1604 611852
Email: enquiries@mndassociation.org
tricia.holmes@mndassociation.org
alan@graham-uk.com
Website: www.mndassociation.org
Region Covered: | England, Wales, Northern Ireland (the isle of Man and Channel Islands - affiliated Branches) |
Date Founded: | 1979 |
Branches/Chapters: | 80 |
Activities
- In contact with approx 2,600 people with ALS/MND at any one time
- Helpline for people with ALS/MND and their carers
- Advice and information for health & social care professionals and people affected by ALS/MND
- Leaflets and publications on ALS/MND
- Network of Regional Care Advisers supporting families with ALS/MND to ensure they receive the best possible care
- Equipment Loan
- Financial Support
- Established a national network of 14 MND Care Centres. These:
- provide coordinated integrated care
- act as a tertiary Centre
- provide educational opportunities and disseminate good practice
- may run clinical drug trials, and/or carry out research
- Branches providing support and raising funds
- Network of Association Visitors offering understanding & befriending support to families affected by the disease
- Developed award winning training programme for Association Visitors
- Educational programme for health and social care professionals, people living with ALS/MND, carers and members of the Association
- Developing guidelines on the clinical management of ALS/MND. Current modules are
- Time to, and telling the diagnosis
- Nutritional management
- Respiratory management
- Devised and promoting implementation of Standards of Care
- Standards of Care audit tool developed for health and social care professionals
- Collate data on experiences of people living with ALS/MND and carers (alternate years to ascertain their ability to access the recommended standards of care and quality of support via the Association)
- Fund research into all aspects of pure and applied research; approximately 20 research grants at any one time
- Devised and currently implementing Care and Influencing strategy
- Annual ALS/MND week, to raise awareness of the disease and raise the profile of Branches by hosting co-ordinated local events

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