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Member Spotlight: MND Association

The Motor Neurone Disease Association was founded in 1979 by a group of volunteers with experience of living with or caring for someone with MND or Kennedy’s disease. Since then, we have grown considerably with an ever-increasing community of volunteers, supporters and staff, all sharing the same goal - to support people with MND or Kennedy’s disease and everyone who cares for them, now and in the future.

We are the only national MND charity in England, Wales and Northern Ireland focused on improving care, research and campaigning. 

What we do

The Association provides support to approximately 3,800 people through our MND Care and Research Centre Network developed in partnership with the NHS. We also provide around £1.1m in support grants annually, and loaned equipment to over 1,500 people last year. We responded to over 8,500 requests for information and support through our dedicated helpline. We also work with and educate health and social care professionals, to enable them to provide the very best care and support to people affected by MND.  

Local support is provided by our network of over 89 branches and groups, where people living with MND, their carers and families can access vital information and meet other members of the MND community.  Working alongside our branch and group network are Regional Care Development Advisers, who work with a team of around 300 Association Visitors, these are volunteers who provide support to people with MND and their family and carers.

We are an active member of the International Alliance of MND/ALS Associations and we organise the only annual research conference on MND – the International Symposium, a showcase of the latest scientific research and learning from clinicians and researchers from around the world.

The Association is committed to funding and promoting research that leads to a better understanding of MND, potential treatments and ultimately, a cure.

We actively campaign and lobby the Government in London, the Welsh Assembly, the Northern Ireland Executive and local councils, to ensure the needs of people affected by MND are being met.  We do this in collaboration with our network of 4,000 committed campaign volunteers and focus our efforts on those decision makers best placed to make the biggest difference to people with MND.

People with MND are at the heart of everything we do.

What are we doing now?

We have launched an online hub with information on Coronavirus and MND. With people living with MND and Kennedy’s disease falling into the group for whom coronavirus could be particularly dangerous, we have focused on:

  • reducing the risk of spreading the virus
  • providing support and help to those who need it at this difficult time, including people with and affected by MND, and those with or affected by Kennedy's disease.

In response, we have redeployed staff, upskilled more than 270 volunteers, developed new ways of working and improved our use of technology. By the middle of April, we had:

  • written to all 4,108 people with MND on its database to offer support
  • called 50% of people with MND we had permission to phone (with calls ongoing)
  • continued one-to-one support for those who need it using email, phone calls and virtual meeting platforms
  • identified potential future gaps in MND care centre and network activity as a result of NHS redeployment, enabling work to start on increasing support as necessary
  • created an online coronavirus information hub, providing a one-stop shop to answer questions and explain our work in this area
  • facilitated a Clinical Advisory Group focusing on issues being faced by those we support
  • launched a campaign urging the government to recognise people with MND as among those who need shielding as ‘extremely vulnerable persons'
  • introduced a new system to process emergency grants to support during the stay at home period