Welcome to ‘Charity of the Month’ – a new feature where I highlight the amazing work carried out by a charity in the Lancaster and Fleetwood constituency.
This month I’m delighted to promote the work of the Motor Neurone Disease Association – a charity close to my heart.
In 2013 my friend and former Labour Councillor Rose Newman-Thompson was diagnosed with motor neurone disease. To my immense sadness Rose died the following year and I still miss her to this day.
So what is motor neurone disease (MND)?
MND is a fatal, rapidly progressing disease that affects the brain and spinal cord.
It attacks the nerves that control movement so muscles no longer work. 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 breathe.
Over 80% of people with MND will have communication difficulties, including for some, a complete loss of voice.
It affects people from all communities.
Around 35% of people with MND experience mild cognitive change, in other words, changes in thinking and behaviour. A further 15% of people show signs of frontotemporal dementia which results in more pronounced behavioural change.
It kills a third of people within a year and more than half within two years of diagnosis.
A person’s lifetime risk of developing MND is around 1 in 300.
Six people per day are diagnosed with MND in the UK and it affects up to 5,000 adults in the UK at any one time.
Fylde and Wyre
Three months ago the MND Association launched the Fylde and Wyre Group and celebrated next to Blackpool Tower which was illuminated with the organisation’s colours of blue, orange and white.
The group has been set up to provide support, fundraise, raise awareness, promote education and campaign on behalf of the MND community.
They are still recruiting volunteers and if you can help in any way please contact Sarah Milner the Volunteer Co-ordinator. Email: firstname.lastname@example.org or phone: 0345 375159 / 07501 682092.
The MND Association
The MND Association was founded in 1979 by a group of volunteers with experience of living with or caring for someone with MND. They are the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning. Their aim is to improve care and support for people with MND, their families and carers. The MND Association funds and promotes research that leads to new understanding and treatments, and brings us all closer to a cure. They campaign and raise awareness so the needs of people with MND and everyone who cares for them are recognised and addressed by the wider society.
‘Scrap 6 Months’ Campaign
I fully support the MND Association’s campaign to reform the process for claiming welfare benefits for people who are terminally ill. The current fast-track process – the Special Rules for Terminal Illness – allows people who are deemed to have a ‘reasonable expectation of death within 6 months’ to access benefits quickly without the need to fill in a long form or have a face-to-face assessment. However, this disadvantages people with unpredictable terminal conditions like MND where it is very difficult to predict life-expectancy. However, MND is always fatal and a third of people die within a year. The Association is campaigning to change the law to allow a clinician to decide if someone is terminally ill rather than using an arbitrary 6-month time-limit.
Creativity, planning and having fun are the key to fundraising success. However you choose to fundraise, your funds will make a real difference to the lives of people affected by MND.
Whether you’re thinking big or small, have an idea? MND Association can help make it happen! From bake sales and raffles to baths of beans and sky diving – as you can see the sky’s the limit! Get others involved too – at work, school, with friends and family or in your community maybe organise a safari supper? Get creative and put the fun into fundraising.
People fund raise for lots of different reasons, but whatever your reason your money will go towards funding vital research helping the MND Association find a cure, and supporting people affected by MND. They ensure that every pound they receive is spent carefully so that people affected by MND get the help they need, both now and in the future.
Across England, Wales and Northern Ireland the MND Association’s volunteer led networks support people affected by MND by providing social opportunities for people to meet, as well as raising awareness, influencing, campaigning for change and fundraising at a local level.
There are lots of ways to get involved with your local volunteer network. Whether you’re interested in helping to organise an event, sprucing up their digital presence, or becoming a committee member, there is something for everyone.
For more information on how to volunteer, fundraise or get support please visit the MND website https://www.mndassociation.org.
And thanks for reading about the incredible work of this much needed charity. Please help in whatever way you can.