The Motor Neurone Disease Association in the Isle of Man was set up in 1993 with the aim of providing practical help and support to make life a little more comfortable for people living with Motor Neurone Disease (MND). We try to help people in a very practical way, but we also offer support, information and advice if asked. Time is very short and so every day counts.
Huge thank-you to Mike Ellis for all his patience and hard work on our website!
About us
The Motor Neurone Disease Association (Isle of Man) Limited is an independent Manx registered charity, set up in the form of a company limited by guarantee. We receive no financial support from the government or any other charity concerned with MND.
We are affiliated to the Motor Neurone Disease Association of England, Wales and Northern Ireland and are grateful to share their expertise and resources, including access to MND Connect, the Association’s telephone helpline for people affected by MND.
The assistance we can offer takes many forms: the provision of a riser-recliner chair; an iPad or eye-gaze computer equipment for easier communication; help with the cost of homecare, home adaptations or a wheelchair-friendly vehicle; or simply an air-ticket to enable a friend to visit. MNDA Isle of Man is here to help if possible.
Association Visitors
Association Visitors present a friendly face and a sympathetic ear. As non-professionals, Visitors can sometimes ‘fill in the gaps’, offering companionship and practical help to people living with MND and/or their families. We are happy to help if we can; maybe just visiting for a chat and a coffee, accompanying to appointments or helping to fill in forms.
Visitors are volunteers, trained by the UK MND Association, who all have first-hand experience of living with Motor Neurone Disease. This aspect of our work is, of course, separate from the general committee work and is completely confidential.
People living with MND can access the services of an Association Visitor without having to have any contact at all with the fundraising committee side of the Association.
To contact a Visitor, please ring Christine Pain on 494966 or email mndassociation@manx.net
Association Visitors are also happy to give short talks about MND to schools or community groups.
Fundraising
We are a small but dedicated committee of volunteers who fundraise throughout the year.
We like to keep things ‘do-able’ and so our fundraising events are modest – coffee mornings and quizzes, murder mysteries, bag-packs and street collections. Our two annual fundraisers are a Christmas Craft Fair in St Johns in early November, followed by the Christmas Fair which we hold at Corrin Court (Manx Blind Welfare building) in Onchan. We traditionally round off the year with a lovely Christmas concert in St Johns Church in December.
We are open to new ideas, and would welcome input from you!
For information about upcoming events, please look at our Facebook page
Do you want to help?
Click on the links opposite to find out more:
- 1Fundraising
We are very fortunate that people who have come into contact with MND either through a family member or friend, often want to do something positive to help. We’ve had all sorts! Parish walkers, Santa runners, End-to-End walkers and cyclists, donations in lieu of anniversary and birthday presents, sponsored silences, dress-down days, Mhelliahs, golf competitions….. the list goes on and on!
If you would like to hold or take part in a fundraising event for us, please get in touch as we can help with t-shirts, buckets, balloons etc and we’d be pleased to publicise your event on our Facebook page.
- 2Give on your Big Day!
Getting married? Wedding favours are quite the thing these days, but are often left on the table at the end of the day. To be different, you could make a donation to MNDA IOM and we will give you a pretty sign to put on your guests’ tables to let them know that you have helped us instead. If you want, we could also let you have a small, coloured “thumbs up” enamel pin badge for each guest. - 3Give in Celebration!
If you have a big (or small!) birthday coming up, or a special wedding anniversary, and don’t want to your friends to buy you chocolates, wine, flowers or tokens, you could ask them to donate to us instead. That way, everyone’s happy and WE write the thank-you cards! - 4Fed up of writing Christmas Cards?
Avoid the bother of writing Christmas cards (and the cost of postage!) by making a donation to MNDA IOM. We’ll put a thank-you on our Facebook page and you can share it with your friends and family! - 5….and looking a lot further ahead.
Leave a Gift to MNDA IOM in your Will
If you would like further information on how this can be done easily and without fuss, please get in touch.
Continuing education
Study days for health professionals and carers
There are currently eight people known to be living with MND on the island, and so quite a few of the island’s health professionals come into contact with the illness. To help them learn more about the specifics of caring for people with MND we hold an information or ‘Study Day’ every two years. The most recent (in 2018) brought experts on a wide range of subjects including patient care and research to the island. Held at Nobles Hospital, it was attended by over eighty doctors, nurses, other health professionals and carers.
Due to the current Covid-19 situation, we hope to hold the next Study Day in Autumn 2021.
If asked, we will also assist health professionals to attend seminars and conferences concerning the care of people with MND. Many of these events have now become ‘virtual’ experiences!
MND and Research
….One day a cure will be found
MND is a progressive, fatal illness that can affect any adult at any age. Though the rate of progression varies, life expectancy after the first onset of symptom is just 2-5 years. There is no specific test for MND, and so by the time of diagnosis the disease is often well advanced. It affects people in different ways, so no two people will have exactly the same symptoms or experience of the illness. The cause is unknown and at present, there is no cure.
Fortunately, researchers throughout the world are working hard to find a cure and with this in mind, MNDA IOM help fund specific research projects through the MND Association in the UK.
We know that some people on the island don’t like locally raised funds to leave the Isle of Man, but in terms of research, there is simply no option. However, the research projects that we help fund are often based at the Walton Neurological Centre in Liverpool, headed by Professor Carolyn Young; the consultant who coincidentally deals with patients visiting from the Isle of Man.
Regular giving
Regular Giving allows us to plan our finances more effectively, and even a modest monthly donation from you mounts up to a BIG boost for us!
With this in mind, you may want to consider Regular Giving by means of a monthly or annual donation, made by standing order from your bank. Any donation, of whatever size, would be greatly appreciated and help us to continue to offer practical support to families affected by MND.
Could you spare £2, £5, £10 or £20 a month? If you are able to help us in this way, please set up a standing order with your bank to send us a regular donation. Our bank details are as follows:
Motor Neurone Disease Association (Isle of Man) Limited
Bank: Isle of Man Bank, East Region
Sort Code: 55-91-00
Account No: 83479023
Reference: Your name
For Manx tax-payers, donations made monthly or annually which total £100 in a tax year qualify for income tax relief.
You can donate here:
Get in touch with us
Please contact us here:
Hon Secretary,
Mrs. Christine Pain
Alpines,
Curragh Road,
St Johns, Isle of Man
IM4 3LN
Phone: (07624) 494966 or (01624) 801355
Find us on Facebook:
