What is motor neurone disease? A rapidly progressive disease that - - PowerPoint PPT Presentation

What is motor neurone disease?

• A rapidly progressive disease that affects the brain and

spinal cord.

• Attacks the nerves that control movement so leads to

weakness and wasting of muscles, causing increasing loss

• f mobility in the limbs, and difficulties with speech,

swallowing and breathing.

• MND does not usually affect the senses such as sight,

sound, feeling etc.

• It can leave people locked in a failing body, unable to

move, talk, and eventually unable to breathe.

Some facts….

• It kills six people per day in the UK, this is just

under 2,200 per year.

• It kills a third of people within a year and more than

half within two years of diagnosis.

• It affects up to 5,000 adults in the UK at any one

time. A person’s lifetime risk of developing MND is up to 1 in 300.

• It has no cure.

Northern Ireland

• 100-120 people in NI are living with

MND.

• MND Care Network which operates

from RVH led by two MND Specialist Nurses, one which is currently funded by MND Association.

• MND Association has a Regional Care

Advisor in NI.

The MND Association

• The only national charity in England, Wales and

Northern Ireland focused on MND care, research and campaigning.

• Formed in 1979 by a group
• f volunteers with experience
• f living with or caring for

someone with MND.

• The National Office is in Northampton at David Niven

House.

Our vision is a world free from MND

Our Mission

• We improve care and support for people with

MND, their families and carers.

• We fund and promote research that leads to new

understanding and treatments, and brings us closer to a cure for MND.

• We campaign and raise awareness so the needs
• f people with MND and everyone who cares for

them are recognised and addressed by wider society.

The Northern Ireland Branch

• One of 89 volunteer-led branches and groups

across England, Wales and Northern Ireland.

• Was set up in 1981 and covers the whole of

Northern Ireland.

• Volunteers work on behalf of people living with MND

to: – Provide local support for people living with MND. – Raise awareness and campaign. – Support our fundraisers.

Northern Ireland Branch

• We provide specialist equipment & services which

are not available from statutory services.

• We hold Afternoon Tea Support Meetings in five

venues across NI to provide an opportunity for people with MND, their families and carers to meet. We also support people who have lost loved ones to MND.

• We have a team of trained Association Visitors who

can stay in regular contact with people living with MND, their carers & families.

Research

The MND Association has over 30 years of experience identifying and funding the most promising MND research and has invested more than £18 million over the past decade, both in the UK and across the world. Currently a team of researchers at the Ulster

University (Altnagelvin Hospital Campus) are studying the role of muscle vesicles in ALS (the most common form of MND).

Derry Ballymena Omagh Newry Newcastl e Antrim

Our work in Northern Ireland 2019

Committee meetings of the Northern Ireland Branch

Regular support meetings for people affected by MND plus a past carers support group Association visitors (AVs)

• increased recruitment has enabled us

to provide more support for people affected by MND across Northern Ireland

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Fundraising - The branch provides support to people who fundraise all

• ver Northern Ireland. This includes

attending events, cheque presentations and providing talks to local schools, businesses and community groups. The branch also produces wedding favours and they have also had requests from England Regular support meetings for people affected by MND Regular support meetings for people affected by MND plus carers’ day events including a spa day

Northern Ireland planning days are a collaboration between branch volunteers, AVs and staff. Co-production and joint planning are instrumental in the development of many projects providing evidence of impact and direct influence to bring about change and improvement in services

Carers day event including a spa day Campaigns contacts together with branch volunteers have ensured that 8 out of 11 councils in Northern Ireland have adopted the MND Charter

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BBC Appeal – A successful bid for the BBC Appeal in Northern Ireland enabled branch volunteers and people affected by MND to take part in filming and interviews, broadcast on Radio Ulster and BBC Northern Ireland website

Lisburn Belfast

THANK YOU

NI Branch Committee Afternoon Tea Support Meeting Awareness Raising Carers’ Wellbeing Day Association Visitors Past Carers’ Get-Together