30 Years of History, Stories & Great Memories! - IMNDA

30 Years of History, Stories & Great Memories!

January 16th, 2015

A Look at the Irish Motor Neurone Disease Association last 30 Years…..

1985, The very first meeting of the Association was held on the 1st May 1985. Over 60 people were affected by MND each person had a strong belief that there was need for a support organisation.

The primary goal of the association in 1985 was to break the isolation experienced by MND people, their carers and families. With this goal in mind and a strong determined group the Irish Motor Neurone Disease Association was formed and the rest is history…..

Committee 300x209

1986, the association was slowly becoming established; the first major fundraiser was the premier of ‘Eat the Peach’ in the Savoy Cinema, this fundraiser raised £14,000 that year.

1987, the first information leaflet was launched – MND – What is it?Motor Neurone Disease What Is It2

1988, the Association moved to a new office run by the Community Services Project at Christchurch Place and is managed by Chairperson Eithne Frost, (pictured below) one of the founding members of the association.

Eithne Frost1


Also in this year the British Director of the MND Association makes a visit to Dublin and offers advice and assistance. Both associations developed a good rapport with each other. The larger and somewhat older UK Group assisted Irish beginnings with practical support.

1989, Eithne Frost (pictured above) resigned as chairperson to take up the first post as administrator in the Association. Eithne’s work involved making contact with existing and new patients. The association’s service expands and active networking is in place with healthcare professionals.

1990, The Association is on the move again.  We move to more permanent and bigger offices in Carmichael Centre. During this year the John Harty Race Ride took place, this gave the association a great boost and helped to improve the equipment bank.

1991, Motor Neurone Disease linked to gene…. Researchers in the US found certain probes link to the gene causing familial MND.

1992, IMNDA plays an important in the new international worldwide alliance of Associations working to help people with MND.

1993, the Freefone no is launched 1800 403 403, this is funded by Eircom and today this continues to provide a very important link between the Association and people with MND and their families

1994, the first patient & carer weekend takes place in the heart of the country – The Hodson Bay Hotel in Athlone.

The Duchess  of York, Sarah Ferguson  pays a surprise visit to a Cork man who has MND, she spends the afternoon with him before flying back to England.

That year committee and staff of the IMNDA also meet the Duchess of York, Sarah Ferguson  at the International Alliance of ALS/MND in Paris.Duchess Of York Visit 300x213

MND features on the television; Check up programme is screened on RTE

Professor Stephen Hawking visits Dublin to give lecture on ‘The Beginning of Time’. Patients and members of the organisation get to meet himStephen Hawkins 300x204


1995, the tenth anniversary of the Association, one of the highlights for the association was the Gala Concert that was held in the national concert hall.

Mary Robinson opens the 6th annual ALS/MND Symposium which takes place in the Burlington Hotel in Dublin, with 370 delegates representing 21 countries.Mary Robinson Visit 300x208

1996, MND Liaison Nurse Bernie Corr is assigned to care for MND patients on a full-time basis.Bernie Corr2

Also during this year The  Film Premiere of  ‘The Last of the High Kings’ in association with Dublin Film Distribution Co Ltd and First Independent Films Ltd. The event raises a staggering £11,500 IR for the association.

1998, the launch of Andy McGovern’s first book, They Laughed At This Man’s Funeral, this launch was held in Easons Book Shop in Dublin City and attended and supported by the great actor Mick Lally. Andy is one of the Irelands longest survivors of MND.

Andy McGovern Book 3

1999, by the end of the 1990’s the Association is in touch with over 200 people with MND. A broad network of supporters is established throughout the country and credibility with the Department of Health and other statutory bodies is built.

2000, 15 years of caring and the Association is on the move again, but only across the road this time…. Coleraine House, Coleraine Street our current location…..!!

2001, launches the new email address for the association info@imnda.ie

2002, The Launch of the book Fear of the Collar, by Patrick Touher takes place this year

2004, the launch of the National Radio Advertising Campaign, “My legs won’t walk, My Mouth won’t talk, I’m loosing control of my body but my Mind Works perfectly” this 30-second radio advert runs for three weeks on RTE’s  radio and receives a massive response from general public.Making Our Voices Heard 13 300x201

2005, Motor Neurone Disease goes live, the Association’s Web-site is  launched  during this year and the domain name is imnda.ie – the home of where we are today! One of the association’s clients Mark Worth is responsible for the design of this new website and our initial launch on the world wide web!

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This year also see The 16th International Symposium returns to Dublin and is held in the Burlington Hotel. This is the biggest event in the world to stage Research into Motor Neurone Disease also know as ALS or Lou Gehrig’s Disease.

International Symposium 2005 Web Image


2006, the Film Premier – The Tigers Tail takes place in the Savoy Cinema with an after party in Croke Park. The film is about Ireland’s Celtic Tiger years and features English-Canadian Actor Kim Cattrall, Irish Actors father & son: Brendan & Briain Gleeson.

Kim Briain Brendan1


This year also sees Olympic Gold Medallist, Michael Carruth take to the stage to perform some Irish dancing in the Celebrity Jigs n ’Reels TV dance show. Michael Carruth And Partner


2007, the Association employs two specialist MND nurses to provide people with practical advice and emotional supports on how to manage the disease. Fidelma Rutledge is one of these nurses that joins the IMNDA team.

Imnda Staff5

2008, the Association appoints a new patron – RTE’s sport broadcaster Jimmy Magee.  Jimmy’s son Paul was diagnosed with MND a few years earlier but he sadly passed away in 2008.

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2009, the Association abseils off the roof of the Hogan Stand in Croke Park for this first time – this has since become a major event for the association and has raised a lot of awareness and funds over the year for the association.

Web Image Croker Abseils Ger Foy 009


2010 the Association visits Aras an Úachtaráin where we meet President Mary McAleese in April of that year, we are joined by many of our people with MND, their families and many of the associations supporters who have been with us down through the years.

Web Image Visit To The Aras


That year also saw the Celebrity Soccer Classic organised by World Title Boxer Bernard Dunne. With big names like Liverpool’s Ian Rush, Ireland’s Packie Bonner and Ronnie Whelan to name but a few! This celebrity team was managed by the IMNDA’s very own and much loved Patron Jimmy Magee.


2011, Sports commentator  Jacqui Hurley gives up her time for IMNDA to help with the promotion of the Women’s Mini Marathon

The first ever Tag Rugby Cup was brought to Blackrock RFC and was organised by the association.

2012, in January of this year we the saw the most thought provoking and inspirational documentary entitled ‘MND- The Inside Track’ the famous sports broadcaster Colm Murray’s documentary on his journey with MND. Colm passed away the following year in 2013.

2013, the longest person living with MND in Ireland Mr Andy McGovern takes to the books again!!  Andy dictated his book “Against the Odds” through the use of voice recognition technology and this inspirational book about his life and his diagnosis of MND was launched on Andy’s 80th Birthday on the 10th February.

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This year the Association also welcomes a new CEO Aisling Farrell who joined in May of this year. Aisling came with an abundance of experience in the Charity Sector.

Imnda Staff

2014 Jimmy Magee releases a single this year called “These old eyes” in March of this year and launches it at the Aviva Stadium with the help of Ryan Tubridy!

IMNDA Jimmy Magee CD Launch 41

The new awareness campaign featuring two people living with MND. Jan Battles and Paul Lannon bravely record their experiences of living with MND. These adverts are aired nationally as well as a poster campaign on Dublin Bus and new text no is set up to take donations!

Screenshots For Comreg


Also this year The IMNDA proudly presents KODALINE and special guests live for one exclusive & intimate concert in Whelans, Wexford Street, in July of this year! All proceeds raised from this special event went to the IMNDA.Kodaline Gig


August of this year will not be forgotten for a long time! The Ice Bucket Challenge – this absolute phenomenon that raised incredible awareness and funds for the IMNDA by someone simply recording a video of another person pouring a bucket of ice over themselves and uploading it to social media, nominating another 3 individuals to do it and donating €2 to the association! And it spread… like wild fire!

Leo Varadkar Ice Bucket Challenge 1

2015 – 30th Anniversary….. Lets hope there will be only one story in the next era and that is…. ‘A World Free of MND’….. here’s how you can help this year to mark the  30th Anniversary

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