The Motor Neurone Disease Association (MNDA) held their Regional Conference in Antrim recently and on the agenda was the MNDA Charter, which local councils have been asked to sign up to. Newry, Mourne and Down Council has not yet done so and the local MNDA NI branch has asked the community to speak to their councillors and encourage them to support the charter.

A spokesperson for the organisation explains "Support for the MND Charter is vital and it was stated at the conference that not all councils in Northern Ireland have to date signed up to the Charter. Local Slieve Gullion councillor Mickey Larkin has been approached and as a result of this, this item has now been scheduled on the agenda for October's Newry Mourne & Down council meeting.

"If you know any councillors please bring this Charter up with them and ask them to support this most important motion to make a positive difference to the lives of people with MND, their families and their carers in our community."

Organisers at the MNDA NI west regional conference 2018
Organisers at the MNDA NI west regional conference 2018


MNDA Charter

The charter is about achieving quality of life, dignity and respect for people with MND and their carers and asks that:-

  • People with MND have the right to an early diagnosis and information
  • People with MND have the right to high quality care and treatment
  • People with MND have the right to be treated as individuals and with dignity and respect
  • People with MND have the right to maximise their quality of life
  • Carers of people with MND have the right to be valued, respected, listened to and well supported

Each of these points are explained fully at

The Northern Ireland MNDA branch committee was set up in 1981 and this was the first time that the Motor Neurone Disease Association has held a regional conference in Northern Ireland. The regional conferences are tailored to local interests and issues affecting people with MND. This was a great opportunity for the Northern Ireland branch of MND Association to host the conference for people living with the disease, family members, carers and professionals and directly focus on issues in Northern Ireland. It was also an opportunity for those attending to hear what was happening in relation to services provided and developments in NI plus the wider most up-to-date information on research being carried out nationally and globally to further the aim of a world free of MND

The local MNDA NI branch provide a crucial network of advice and support in our area. They provide direct support for people affected by MND, support anyone raising money to help people affected by MND in NI, raise awareness about MND across NI and campaign and influence policy and decision-makers. The NI Branch also host support meetings for people with MND and their families and carers.

The branch are all volunteers and include Association Visitors who are just a telephone call away for advice and support on every aspect of MND for both the person living with MND and their carers and family members. Association Visitors provide information about MND and local services, offer a confidential listening ear and emotional support, help reduce isolation and offer access to a wider support network including support groups and liaise with health and social care providers on behalf of individuals with MND.

Motor Neurone Disease affects every aspect of life. A vital part of MND NI branch activity is to raise awareness of the needs of people with MND (and everyone who cares for them) and ensure that these needs are recognised and addressed by wider society.

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