In March 2018 Fr Tony was diagnosed with Motor Neurone Disease. For a man with untold energy levels as well as a contagious zest for life, this news came as a bolt of lightning. Tony found himself part of a vastly under-resourced medical world of lengthy waiting lists and over-burdened medics.
Never one to be struck down by adversity, Tony came to the decision to walk the length of Ireland in order to raise funds and to help highlight the need for further funding in this area.
Details for each stage of the route are below.
The Route PDFs contain all the info about each stage including walking directions, start locations and food & drinks along the way.
The Google Maps links provide an easy way to load the directions onto your device.
(A folder containing all route PDFs can be downloaded from here)
You will need to be at the start point at 9:30am to receive relevant information for the day in which you are walking. The start time each day is 10am sharp i.e. we will begin walking at 10am.
Please see this page to see how €250 donation equals €431 to the charity.
RTÉ is filming Fr Tony Coote’s walk for a documentary to be aired later in the year. If you have concerns about appearing in shot or questions about the production, please contact the Head of Religious Programmes, Roger.firstname.lastname@example.org
Tony Coote is my name. On the Wednesday of the beginning of the recent snow in Ireland, I was told I had Motor Neurone Disease. Like others who have received such news, I was terrified and my body went into shock. Around this time someone asked me to remember that, ‘the diagnosis is not the prognosis’. I have repeated that in my head as a mantra every day. I have also committed myself to living each day, looking to the future and choosing to live rather than exist.
I am a priest in the Dublin Diocese working in Kilmacud and Mount Merrion parishes. I used to play squash twice a week and was always on the go thinking of the next plan and idea. This illness has slowed me up and for the first time since I was a child I fall over easily and have to watch the ground as I walk.
Since I was diagnosed I realised the only medication is 24 years old and that the Motor Neurone Disease Association can only provide three nurses for the whole country with just over 400 people living with this illness. Their salaries are paid for by church gate collections.
Rather than just complaining about these facts I want to use my time and my voice to do something about it. To this end we invite you to become part of Walk While You Can, to donate, walk with us, organise a fundraising event or offer accommodation to around 6 of us doing the whole walk.
During his time in UCD, Fr Tony established the charity UCD Volunteers Overseas and national mental health campaign Please Talk.
UCDVO was established in 2003 by the former UCD Chaplain Fr Tony Coote in response to an expressed desire among students to engage in voluntary work abroad. Since its inception and launch as a registered charitable organisation in 2004, UCDVO has extended its activities to projects in India, Haiti, Nicaragua,Tanzania and Uganda and employs two full-time staff to co-ordinate its activities. To date, approx 1,500 volunteers have engaged in environmental, educational, healthcare, construction and computer training projects in disadvantaged communities overseas. (UCDVO.org)
In response to an increase in the rates of suicide among young people, he also headed up the Please Talk campaign, a positive mental health campaign for students, encouraging them to talk about their problems. (PleaseTalk.org)
Walk While You Can is all about bringing people and communities across Ireland together to raise vital awareness and support for Motor Neurone Disease. We’ll be walking the length of Ireland this July to generate funds and help highlight the need for more funding in this area – and it would mean so much if you could be there with us. By joining our walk, you are not only lending your voice to our call for better supports and services for people living with this Walk with the condition but making those supports possible. This walk is for everyone, young and old, so, if you’d like to get involved, find out more about our route here (Above) and let us know where you’ll be joining us by using our Contact Form (Here).
See you there!
You can make a real difference in the lives of people and families living with Motor Neurone Disease in Ireland by organising a fundraiser in your community for the Walk While You Can campaign. From bake sales and raffles to town treasure hunts and karaoke parties, we have plenty of ideas to get you started and lots of tips and resources in our fundraising pack to help make your event a success.
Whether you coincide your event with when the walk passes through your town or run it at another time, it’s entirely up to you – but we’ll be there to support you every step of the way.
If you’re interested in hosting a fundraising event, please use our contact form (Here) to let us know, and we’ll be in touch with any information and advice you need.
Money raised from the global fundraising phenomenon “The Ice Bucket Challenge” has helped to make a significant breakthrough in identifying a key gene linked to Motor Neurone Disease. Project MinE – which is in part funded by the Irish Motor Neurone Disease Association – has identified a new gene NEK1, which is believed to be a gene that contributes towards the illness.
It’s hoped the breakthrough will ultimately lead to an improved outcome for the 110 Irish people who will develop Motor Neurone Disease every year. One person is diagnosed with MND every 4 days. MND is known as the 1000 day disease from diagnosis to death.
During these 1000 days, someone with MND gradually loses control of their limbs ultimately resulting in a loss of independence. Everyday things we take for granted like walking, talking and eating may become virtually impossible.
The Ice Bucket Challenge raised 1.6 million euro in Ireland alone. Over €600,000 went directly to research. This research, which includes Project MinE, is carried out by Prof Orla Hardiman and her team in Trinity.
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.
The cause of MND is not known. There may be environmental factors that trigger the damage in people who are susceptible to the disease. On going research is necessary to find out the nature of these environmental factors, and what makes one person more susceptible than another.
MND strikes people of all ages and currently there is no cure, however symptoms can be managed to help the person achieve the best possible quality of life. The drug Riluzole (Rilutek) has shown to be helpful in slowing down the progress of the disease.
For more information see imnda.ie/about-mnd
These are just a few of the reasons fundraising for MND in Ireland is so important.
In Ireland, we only have 3 MND Nurses for 400 patients.
They are funded for church collections.
With 400 people diagnosed with MND in Ireland, who are in need of funding
The lastest medication available in Ireland is 25 years old.
We need more research funding.