Raise and Give: Why the Irish Motor Neurone Disease Association of Ireland?


Hello, my name is Ian Kelly, and I am the Events & Engagement Officer for the TU Dublin Students’ Union. I decided to write this article to give you a bit of insight into what went into choosing out RAG charity this year. For those who don’t know this year’s charity is the Irish Motor Neurone Disease Association. 

At this point you might be thinking to yourself “that’s a bit random” and on the surface you’re probably right to think that. 

But let me explain. 

Every year students are asked to submit proposed charities to student council and our councillors consider all submissions and take a vote on which one they want. As the incoming Events & Engagement officer I was asked if I would like to submit a charity and I chose the Irish Motor Neurone Disease Association. 

I honestly didn’t think there was any way it would be chosen but I decided to submit it anyway as it’s a charity that is close to my heart and here’s why. 

A few years back my mother came home from a hospital appointment and told me that she had Motor Neurone Disease. I had no idea what it was, at the time I had never heard of it but, awareness of the condition has been made popular in recent years via the viral Ice Bucket Challenge trend. I quickly jumped onto google and my whole world fell apart. At
the time, not only was there no cure but they weren’t even sure what caused it. 

They call it the 1000-day disease. Yeah, that sucks right? 

At this stage you might be asking yourself what is MND? 

So here we go “Motor Neurone Disease (MND) is a progressive neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord. This means messages
gradually stop reaching the muscles, which leads to weakness and wasting. 

MND can affect how you walk, talk, eat, drink and breathe. However, not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in any specific order.” 

I won’t go into large detail about my own personal experience but trust me it was rough, really rough. Recently I watched the documentary about the RTE broadcaster Charlie Bird who was recently diagnosed with MND, and it was a tough watch for me. I think if you really want to know exactly what sort of toll the condition takes on a family both emotionally and physically it is worth a watch. 

For us as a family it was all a bit of a whirlwind. It was just my sister and I living at home and things progressed very quickly. Within 3 months of diagnosis my mother was forced to
leave her job and friends (which was very difficult for her), we then had to set up a downstairs bedroom for her as she quickly lost the use of her legs and any trip outside of the home was via a wheelchair. 

Very early on in the process we were put in contact with the IMNDA. To be honest I can’t thank them enough for everything they did for my family. For an organisation that receives no government funding their care was second to none.  

When it came time to set up the sitting room as a bedroom, they provided us with everything we needed. We got a medical bed, a hoist for getting her in and out of bed, two wheelchairs (one for travel and one to comfortably sit in the house), the required toilet equipment and a machine that assisted with breathing at night. They also helped us in making our home wheelchair friendly and assisted in installing a ramp up to
our front door. 

Not only was all this free, but they also had a dedicated nurse that would visit my mother regularly to check in on her. This is something that is even more astonishing to me now that I know they only have five nurses in the whole country. 

In recent years a technology had been developed via the iPad that gives a voice to people with MND. Basically, the people can read out a few sentences and when the time comes the device can be used in a way that they can type and still speak in their own voices. The iPads in general give people a much better quality of life, they can use them to do their online shopping and some much more. 

Frances, in Donegal, explains via email how indispensable the device is, 

“I do not have the ability to speak at all, so it’s my only way of communicating with family and friends. I just could not count the number of times in a day I use it.”  

Cathy writes, 

“I use it with family and friends I see daily or regularly. I use it for everyone I am in contact with. It’s invaluable for everyday living and communicating with people”  

It only costs IMNDA a few hundred euro to get these devices and they provide them to people free of charge. We have 30,000 students here in TU Dublin. If every
student donated just one Euro, think about all the good we could do. Our students could be responsible for giving a voice back to someone who has lost theirs. 

I don’t know about you but that seems like a pretty worthwhile cause to me and for me is a nice way to honour my mother’s memory. 


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