Tonys’ Story

Hi Everyone,


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.


All funds will be donated for research for new medication RMN and to the IMNDA for the care of those living with the illness.



Help Fight MNDDonate

About Tony

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. (

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.

About WWYC

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.

The Route

 July 10th to August 6th 2018


Yellow Balloons

As a symbol of hope we are asking people to hold a yellow balloon on the walk.

Sign up to Get Involved

How you can help

Walk with us
Raise awareness on our walk
Walk with us
Help 2 Irish MND Charities
Fund new research
Inspire your community
Help us reach our goal

Walk With Us

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!

Organise a fundraising event
Event Fundraising
Organise a local event
We'll support you to make it a success
Cake sales to Karaoke
All help welcome!


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.

Fundraising Ideas Link

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.

a bed for the night
Help provide accommodation
Help support the core team of 6
Provide accommodation along the route
Support MND Nurses in Ireland
Help us reach our goal

Offer Accommodation

We’ll be spending three weeks this July walking the length of Ireland to raise awareness and support for Motor Neurone Disease care and research. Covering up to 35km a day, our core team of six people will need a good night’s rest along the way – and your help would make all the difference.

If you can offer a bed for the night anywhere along our route, your generosity will ensure that even more of the funds we raise can go to our two chosen charities. Please use our contact form (Here) to let us know if you can help: thank you!

to the 2 MND charities
Support 2 Irish MND charities
Direct to Charities
Support MND Nurses in ireland
Help us reach our goal
Support MND Research in Ireland


All money you raise will go to Walk While You Can’s two chosen charities (link), bringing much-needed support to those living with Motor Neurone Disease in Ireland.

For donations by phone : 01 7162400

Online donations

Fundraising Works

Ice Bucket Challenge Funds MND Breakthrough

Posted: July 27, 2016

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.

Continue reading

What is Motor Neurone Disease

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

MND Stats in Ireland

These are just a few of the reasons fundraising for MND in Ireland is so important.


The Irish Motor Neurone Disease Association (IMNDA, CHY 8510) is the only organisation of its kind in the country.


They are dedicated to working on behalf of people living with MND and their families and carers.


Their key services include home visits by our 3 MND nurses, financial assistance towards home help and the supply of specialised equipment on loan.


They also fund and promote research into the causes and treatments of MND.
Research Motor Neurone (RMN CHY 17822) was founded in 2007, for the purpose of promoting and facilitating research into the causes and treatments of motor neurone disease (MND), also known as ALS.


RMN also strives to increase awareness of this incurable disease at both a national and international level.


Ongoing research is needed to discover the cause, treatment and methods of improving quality of life for MND sufferers and their families.

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