News Archives - IMNDA | Irish Motor Neurone Disease Association

Climb with Charlie Book Launch

The former RTÉ broadcaster Charlie Bird gathered with friends, family and colleagues at Hodges Figgis in Dublin for the launch of a book commemorating ‘Climb With Charlie’.

The book contains photos of the day thousands of people climbed Croagh Patrick to raise funds for Pieta and the Irish Motor Neurone Disease Association.

In autumn 2021,  the journalist and broadcaster publicly announced that he has motor neurone disease. Despite this devastating diagnosis, Charlie decided to organise a charity climb of Croagh Patrick. Climb with Charlie turned into a national event and raise over  €3 million for the Irish Motor Neurone Disease Association and Pieta House.

CEO of the IMNDA Lillian McGovern attended the book launch of Climb with Charlie along with Board Members Katie Hallissey & Norman Hughes.

“We are delighted to be part of this great initiative. The book captures all the climbs – the memories made and emotions felt so beautifully. Our thanks to Charlie and Claire.” CEO, Lillian McGovern

 

Guide My Way – Interactive Service for People with Reduced Mobility

 

Guide My Way – Dublin Airport

The Dublin Airport Future Factory team are looking for passengers arriving through Dublin airport this summer to try out their new interactive service. The Future Factory is Dublin Airport’s innovation and business development function.

The Future Factory Team carried out research and they saw the arriving journey doesn’t offer enough support to the PRM (Person with Reduced Mobility) passenger or those with additional needs. So, after a lot more research and discussions they came up with Guide My Way, an interactive digital service.

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Motion on Neurology Nurses Receives Wide Support in Seanad Eireann

A motion brought forward by the Seanad Independent Group in support of the Patients Deserve Better campaign received strong support from Senators when it was raised on Wednesday evening 22nd June. 

Speaking on behalf of Minister for Health Stephen Donnelly, Minister of State Frank Feighan highlighted the effectiveness of the campaign: advising the patient organisations involved to “take a bow” for the success of the campaign in raising awareness and understanding of the need for additional specialist nurses in neurology. 

You can watch the video of the Seanad proceedings here

You can read a transcript of the discussion here

Lights On for Motor Neurone Disease

Lights On for Motor Neurone Disease

 

Going Green for 21st June Global MND Day

 

Today, the 21st June, is Global ALS/MND Day. Every year the International Alliance of ALS/MND Associations marks 21st June as the global day of recognition of ALS/MND – a disease that affects people in every country of the globe.

 

ALS/MND is a global problem. It does not discriminate on the basis of race, ethnicity, socioeconomic status or region. There are people living with ALS/MND all over the world. For every person diagnosed, the impact of the disease will be forever felt by their loved ones.

 

As we mark this Global MND Day 2022, we want to mark 21st June as a special day of recognition. Along with other organisations across the world we are collectively acknowledging the enormous impact that Motor Neurone Disease has on people and their families.

 

Using solstice day in this way, we collectively hope that there is a “turning point” for those with this disease. Working collaboratively with our partners – researchers, clinicians, healthcare professionals we collectively commit to search for the cause, treatment and cure for Motor Neurone Disease,” said Lillian McGovern, CEO IMNDA.

 

To mark this significant date in the MND diary and in support of over 400 people living with the disease in Ireland, well-known buildings and monuments across Dublin and Ireland will be lit up in Kelly Green, the colour of the Irish Motor Neurone Disease Association (IMNDA).

1)     Farmleigh Water Tower, Phoenix Park

2)     The Phoenix Monument, Phoenix Park

3)     The Casino at Marino

4)     The Wolfe Tone Monument, St. Stephens Green

5)     The Rock of Cashel

 

Lighting up these monuments on this day allows us to recognise that patients, carers, researchers, healthcare workers, volunteers and many others are not alone in the fight against MND. Together we are stronger and one day we hope to see a world free of MND.

ENDS

 

Photos will be sent to all picture desks by Garrett White 

For more information, please contact Maeve or Derbhla on pr@imnda.ie or call 083-0125472/ 083-014 7549

 

Notes to Editor:

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 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 Irish Motor Neurone Disease Association (IMNDA) is the only organisation of its kind in this country. It was set up in May 1985 to provide care and support to people with Motor Neurone Disease, their carers, families and friends. There are currently nearly 400 people living with MND in Ireland. MND is often referred to as the 1,000 day disease as most people die within 1,000 days of being diagnosed.

The IMNDA provides specialised services for people affected by this debilitating disease such as equipment on loan, financial assistance towards home help, funding towards counselling, advice and home visits from one of 4 MND Nurses. In order to provide these vital services the IMNDA depends heavily on the generosity of the public and supporters of the association who generate over 83% of its income.

 

 

Duhallow Vintage Club

 

The IMNDA would like to express our sincere thanks to the Duhallow Vintage Club who raised €2,000 from their recent fundraiser at the Mallow Flower and Garden Festival. President of the Club Jim O’Doherty alongside organiser Rose Kearney and other club members are pictured here presenting a cheque to our IMNDA representative Carmel Hennigan at Charleville Golf Club on 12th June. Thank you so much to all involved!

Patients Deserve Better Campaign

 

Patients Deserve Better Campaign

Over thirty TDs and Senators attended a briefing on the Patients Deserve Better Campaign organised by the Neurological Alliance of Ireland on Wednesday 15th June.

Oireachtas members heard that there is a shortage of 100 nurse specialists across adult neurology services. The Patients Deserve Better campaign is calling for investment over 5 years to tackle this shortage, starting with funding for up to 20 nurses in the upcoming Budget.

Oireachtas members heard directly from specialist nurses Sinead Jordan and Martina McKenna who highlighted the critical importance of specialist nurses in patient care, as well as the challenges posed by the shortage of 100 nurses leading to a “postcode lottery” and lack of access to a specialist nurse. For example only 21% of people with Parkinson’s disease in Ireland have any access to a nurse specialist.

Aoife Kelly, a young Galway student living with epilepsy, spoke of the challenges involved in living day to day with epilepsy and the importance of having access to the information and reassurance provided by a nurse specialist.

Tony Wilkinson, a Parkinson’s patient from West Cork, highlighted his experience of accessing a specialist nurse in the UK, a service that was not available when he moved to Ireland.

Professor Orla Hardiman, National Clinical Lead for Neurology, highlighted the ask for specialist nurses as a sensible and cost effective approach which has already been shown to be effective in improving patient outcomes, reducing waiting lists and A & E attendances.

NAI will be following up with individual elected representatives to call for further support for the campaign ask for up to 20 nurses in the upcoming Budget.

The Patients Deserve Better campaign is supported by 15 NAI member organisations. For further information visit www.patientsdeservebetter.ie

 

5K in Nenagh for Katie

We would like to say a massive thank you to Mairead Long who did a 5k walk in Nenagh, Tipperary on 2nd April for her friend Katie Ryan who sadly passed away from MND. She raised the wonderful sum of  €6,375! Mairead is pictured here with Katie’s family. Thanks so much Mairead for all your support.

 

MND Global Day 21st June

Global Day

Every year the International Alliance of ALS/MND Associations marks 21st June as the global day of recognition of ALS/MND – a disease that affects people in every country of the globe.

ALS/MND  is a global problem. It does not discriminate on the basis of race, ethnicity, socioeconomic status or region. There are people living with ALS/MND all over the world. For every person diagnosed, the impact of the disease will be forever felt by their loved ones.

Alliance members across the world use the hashtag #ALSMNDWithoutBorders on 21 June to raise awareness and funds on Global Day.

Why 21 June?

June 21 is a solstice – a turning point – and each year the ALS/MND community undertake a range of activities to express their hope that this day will be another turning point in the search for cause, treatment and cure of ALS/MND.

Join the fight… Spread the word

Global Day is an event that knows no boundaries, so everybody can be involved. Any event (big or small), any activity, any act, can be a part of raising awareness of ALS/MND.

Ways to spread the word:

  • Use the hashtag #ALSMNDWithoutBorders to share information and education about ALS/MND on social media!
  • Celebrate international partnerships and collaborations that make us united in the worldwide fight against ALS/MND.
  • Show your support for the Fundamental Rights of people living with ALS/MND by reading and sharing this advocacy tool.
  • Hold a fundraiser for your local ALS/MND association.

RTE: Loud & Clear Documentary

On the 2nd April this year, Charlie, Claire & Tiger moved mountains and got the whole country on board to support the Irish Motor Neurone Disease Association. Over three and a quarter million euro was raised from the Climb With Charlie campaign was raised for us & Pieta, it was truly wonderful how all communities throughout Ireland got involved.
Last night RTÉ aired ‘Loud and Clear’ a powerful and poignant documentary on Charlie’s life, it follows Charlie & Claire on their journey of Motor Neurone Disease. It also looks at politics in his early life to Charlie’s broadcasting career including the Star Dust tragedy. Charlie & Claire talk openly about Charlie loosing his voice and how this will effect them and how Charlie does not want a robotic voice like Stephen Hawking.
The documentary also follows the journey of the Climb With Charlie Campaign. We want to take this opportunity once again to thank Charlie, Claire, Tiger & all the people of Ireland who came together to support the Climb with Charlie Campaign.
The documentary can be viewed here

Ballmacud Charity Trek

 

A massive thank you to Sheila O’Brien and all involved with the Ballmacud Charity Trek which took place in Oldcastle, Co Meath in March. The Trek and subsequent auction raised a massive €11, 742 for the Irish Motor Neurone Disease Association. We are so grateful for everyone who contributed and took part making this event such a huge success.

Ricki Versus the Reek!

 

What a day!!! On the 11th June Ricki Wynne took part in an the challenge of a lifetime, he took on The Reek 24hr Challenge 115km, he ascended 12,000 meters and descended 12,000 meters on one of the toughest mountains in Ireland, Croagh Patrick!

I cannot begin to thank everyone for the support and love that I received on this mammoth challenge… I’m so happy that I got to do it surrounded by friends and family but the main story here is Irish Motor Neurone Disease Association (IMNDA). Goal number one was to raise as much money as possible and the rest was just a bonus….. Thank you all so so much for all the kind and generous donations. 

For more on Ricki’s event or to make a donation, please visit here

Victory over MND for Eilish

 

In November 2017, Ciaran Doyle’s wife Eilish was diagnosed with Motor Neurone Disease and lived with this disease until April of this year. At 53, Eilish left this life behind. This is Ciaran’s story….

“Eilish was the single most extraordinary person I have ever met. We shared our life’s passions; our three beautiful children, our love of music, books, travel and many beautiful memories. Eilish was as Eilish always said the ‘measure of my dreams’

We made the most of the last  4 and a half years and could not have done so without the huge help of Eilish’s sister Trisha, her mam Mary, our families and Eilish’s many friends.

The help, support and assistance of the Irish Motor Neuron Disease Association (IMNDA) was critical to Eilish maintaining her independence and communication. Without their help we would have been lost. They gave us the tools to keep going.

They were always there to help and we never waited for equipment, support or advice. They gave us a supporting hug on our worst days.

I have been a participant of Parkrun in Vicarstown for a number of years. Parkruns are a timed 5km walk, jog, run which take place in over 100 locations around Ireland at 9:30 every Saturday morning. Parkrun is a positive, welcoming and inclusive experience where there is no time limit and no one finishes last. Everyone is welcome and there is always a cup of tea, a bun, a chat and a laugh after every event.

My goal is to finish 4 Park Runs in Eilish’s memory to raise awareness for Motor Neurone Disease (MND).

I plan to run with a little help from family and friends 4 Park Runs to fight MND and finally Victory over this cruel disease. I am choosing 4 Locations to represent the Capital letters of the Abbreviation MND.” Says Ciaran

Here are the details for Ciaran’s event:

MND – Mullingar, Naas & Donabate and finally V – Vicarstown (Victory over MND)

Run 1

4th June 9:30

Mullingar Parkrun

Old Rail Trail Car Park,

Newbrook Bridge, Mullingar.

Run 2

11th June 9:30

Naas ParkrunNaas Racecourse,

Tipper Road, Naas

Run 3

18th June 9:30

Donabate Parkrun

Newbridge House,

Hearse Road,

Donabate, Co. Dublin

Run 4

25th June 9:30

Vicarstown Parkrun

Grand Canal Bank,

Vicarstown, Portlaoise,

Co. Laois.

For more on Ciaran’s event or to make a donation, please visit here

Mondello 24HR in memory of Sinead Stafford-McGrath

In memory of Sinéad Stafford (Dept. Agriculture) Sinéad’s husband Malcolm and Brendan Ennis from Dept. Agriculture Johnstown castle will be taking on a 24-hr cycling event in Mondello Park on June 18th &19th. They will each cycle as a total of 12 hrs starting at Midday 18th and throughout the night and finishing Midday 19th June.

They are doing this to raise awareness and fundraise for Irish Motor Neurone Disease Association (IMNDA). The IMNDA was a huge support for Sinead when she was diagnosed with the Illness in May 2020 supplying specialist beds, specialist wheelchair, iPad, communication devices when her speech went, nursing help counselling grants for the entire family.

Sinead passed away on November 22nd 2021 and Malcolm has set a target of cycling 5200km over 52 weeks in 2022 to raise awareness of motor neurone disease and raise funds for IMNDA.

After this massive event Malcolm will travel to Wicklow on June 25th and cycle alongside Sean Kelly and many other cyclists. The following week on July 2nd Malcolm will travel to Killarney and cycle 170km Ring of Kerry Route. He will take a weeks rest from travelling and on July 16th he will cycle 160km Ring of Clare route.

It helps start a conversation and raise awareness to this underfunded organisation who have only 4 nurses throughout Ireland to support over 400 patients.

Donations can be given by visiting Sinéad’s memorial page www.sinsin.ie

Faces for Awareness Campaign 2022

Meet our Faces for this years National Awareness Campaign – Drink Tea for MND. This June we are once again raising awareness of Motor Neurone Disease (MND) over the radio, on social media and in the national and regional newspapers. We approached a number of people living with MND and asked them to share their stories in the hope of raising awareness as to how this condition affects them.

During the month, we also need to raise funds to support the services that we provide.  In order for you to help us to raise awareness of MND and raise funds for IMNDA, we are asking you to organise a Drink Tea for MND party. You can invite people to your home or garden, gather your colleagues at work or even get the whole community involved at your local Sports Club! We would like you to share your experiences of MND and spread the word of this condition to your local community.

Featured below are a number of people who are helping us out to raise awareness of MND this June and how it affects them; Mark Dignam from Offaly is fronting the campaign, he is the voice for the advert on national and regional media and he has shared his story. To read Mark’s story, please visit here

Roy Taylor from Dundalk is another face for the campaign. Roy is a well known singer songwriter and member of the band Jump the Gun who represented Ireland in the Eurovision Song contest in 1988. Roy is helping us to promote the campaign on social media this year. He has recorded a support video and his Drink Tea Jingle that he recorded with his band Jump the Gun is also available for the campaign too. You can listen to it hear

Margaret Mulvany is from Galway and lives with the husband Liam. She is also putting her face to the campaign for this year. Margaret has kindly put herself forward for national Media. For more on Margaret’s story, please visit here

Todd Nugent from Mullingar is another face for the campaign for 2022. Todd can be seen pictured here with this dog Kai. This is Todd’s second year to take part in the campaign. He has three guiding principles “take things one day at a time, focus on what I can do as opposed to what I can’t. To quote the singer Bob Dylan; The slow one shall later be fast, the fast one shall later be last.”  For more on Todd’s story, please visit here.

Andy McGovern from Leitrim is also our face for this years campaign. Andy is a long standing member  of the IMNDA and he has done many campaigns for us over the years, he always puts his name to a campaign and willingly goes on radio to highlight MND  and how it affects him. Andy has also written a book about his life with MND and he reckons he is one of the longest survivors of MND in the world. To read about his life with MND and purchase a copy of his book please visit here.

 

Denis Cagney from Dublin and he was diagnosed with MND on April 2020. He  was 67 and living a very active life, running, golfing, cycling and doing some part-time consultancy. He and his wife Margaret were retired and life was great. But he had a little weakness in his left thumb and he had a few falls when running so he went to get checked out. For more on Denis’s story, please visit here.

To get involved in the Drink Tea for MND Awareness campaign this June and organise your very own tea party, please visit here