United Kingdom*

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F

Full Member of the International Alliance

Motor Neurone Disease Association (MND Association)

Kirstine Knox, Chief Executive
Alan Graham, Alliance Board Member

PO Box 246, Northampton, NN1 2PR UK

Tel: +44 1604 250505
Fax: +44 1604 611852

Email: enquiries@mndassociation.org

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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