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 of 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 of volunteers with experience of 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 of 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).
Our work in Northern Ireland 2019 12 Regular support meetings for people affected by MND plus carers’ day events Association visitors Regular support meetings for including a spa day (AVs) people affected by MND Northern Ireland planning days are a - increased recruitment has enabled us collaboration between branch to provide more support for people Derry volunteers, affected by MND across Northern Ballymena AVs and staff. Co-production and joint Ireland planning are instrumental in the Fundraising - The branch provides Antrim development of many projects support to people who fundraise all providing evidence of impact and direct over Northern Ireland. This includes influence to bring about change and attending events, cheque Belfast Omagh improvement in services presentations and providing talks to Committee meetings of the local schools, businesses and Lisburn Northern Ireland Branch community groups. The branch also produces wedding favours and they BBC Appeal – A successful have also had requests from bid for the BBC Appeal in Regular support meetings for England Newcastl Northern Ireland enabled people affected by MND plus e branch volunteers and a past carers support group Campaigns contacts together with people affected by MND to 2 Newry branch volunteers have ensured take part in filming and Carers day event including a spa that interviews, broadcast on day 8 out of 11 councils in Northern Radio Ulster and BBC Ireland have adopted the MND Northern Ireland website Charter
THANK YOU NI Branch Committee Afternoon Tea Support Awareness Raising Meeting Carers’ Wellbeing Day Association Visitors Past Carers’ Get -Together
Recommend
More recommend
