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United Kingdom*

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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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