Motor Neurone Disease Association

(MND Association)

Full Member, United Kingdom

Region covered:

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

Branches/chapters:

88

Date founded: 1979

Contacts

  • Sally Light, Chief Executive
  • Alun Owen, Chair of Trustees
  • Steve Bell, Alliance Director

Address:

PO Box 246
Northampton, NN1 2PR
England
UK

Phone:

+44 1604 250505

Fax:

+44 1604 611852

Email:

enquiries@mndassociation.org

Website:

www.mndassociation.org

Facebook:

www.facebook.com/mndassoc

Twitter:

twitter.com/mndassociation, twitter.com/mndresearch

Activities

Motor Neurone Disease Association 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