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MND Association of England, Wales and N Ireland

United Kingdom
Date founded: 1979
Region covered:

England, Wales, Northern Ireland (the Isle of Man and Jersey - affiliated branches)


Address:

Francis Crick House
6 Summerhouse Road
Moulton Park
Northampton NN3 6BJ
England


MND Association of England, Wales and N Ireland Activities

  • In contact with approx 3,200 people with ALS/MND at any one time
  • MND Connect Inforamtion 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, where possible and when statutory services cannot help
  • Established a national network of 19 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
  • Guidelines on the clinical management of ALS/MND.  Current modules include:
    • 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
  • Data collation 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)
  • Research funding for aspects of pure and applied research; approximately 45 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

MND Association of England, Wales and N Ireland Branches/Chapters

88

Contacts

  • Sally Light, Chief Executive
  • Richard Coleman, Chair of Trustees
  • Nick Goldup, Alliance Director

Phone:

+44 1604 250505

Fax:

+44 1604 624726/638289

Email:

enquiries@mndassociation.org

Website:

www.mndassociation.org

Facebook:

www.facebook.com/mndassociation/

Twitter:

www.twitter.com/mndassoc, twitter.com/mndresearch

YouTube:

www.youtube.com/mndassociationofficial

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