Muscular Dystrophy Ireland Book

40 YEARS OF SUPPORT AND SOLIDARITY Anniversary Book of Muscular Dystrophy Ireland

40 YEARS SUPPORT

AND

OF

SOLIDARITY

Anniversary Book of Muscular Dystrophy Ireland

CONTENTS 1970s – Beginnings This chapter details the people and places associated with MDI’s formation in 1972 and its growth over the following eight years.

1980s - Taking Flight This chapter charts the organisation’s development during the decade, including the gaining of its first office space and joining of EAMDA (European Alliance of Neuromuscular Disorders Associations).

1990s – Getting In Groove This chapter looks at the development of services under the guidance of MDI’s first ever full-time director and the impact of such gains on people affected by neuromuscular conditions.

2000s-Present – New Era This concluding chapter outlines MDI’s continued progress under the tutelage of current Chief Executive Joe T Mooney, including the establishment of MDI’s Centre of Excellence and Head Office in Chapelizod, Dublin. Interviews with current members give an insight into the impact MDI continues to make in people’s lives.

Acknowledgement MDI wishes to thank every person who supported the compilation of this book in any way, shape or form.

Particular thanks are extended to all of those who shared their time, thoughts and memories.

This book is dedicated to all of MDI’s members, past and present.

Captions to photographs on the front cover Promotional photograph for The Children of Lir in 1993.

MDI participants pictured with friends at a Chess Tournament in England in 1986.

Ha’penny Bridge 2012, photograph taken by Diane Purtell member of MDI.

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INTRODUCTION CHIEF EXECUTIVE OFFICER OF MDI, JOE T MOONEY BY

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Dear MDI Members and Friends,

A

s a young teenager with muscular dystrophy growing up in Carndonagh, Co Donegal, and eager to make the most of life, I decided to become involved with Muscular Dystrophy Ireland (MDI) by joining its Donegal Branch. Little did I know at the time that one day I would become the Chief Executive Officer of this incredible national organisation. To all the young people who read this book, can I just say, ‘you never know what the future holds!’

MDI has grown throughout the country over the past forty years and this is due to the members and their families becoming actively involved in the organisation and directing its pathway. I am proud to say that MDI is a truly member-led and member-focused organisation. The needs of members are what drive MDI and in turn it supports and encourages people with muscular dystrophy and their families to know that they have choices in reaching their full potential in life.

I am not the first CEO of MDI, a lot of foundations and structures had been built prior to my appointment in 2001 and I would like to acknowledge the important role which they have played in bringing us to where we are today. MDI is like a jigsaw in which there are many different pieces. It would not function smoothly without these pieces fitting together. We have the voluntary side which includes the Board of Directors, the National Council and the branches around the country, and from the early days these volunteers have supported me and my predecessors. Added to that we have a team of dedicated Family Support Workers, Youth/Respite Workers, Personal Assistants, Transport, Public Relations/ Fundraisers and Administration Staff, who I would like to thank and acknowledge for the crucial role they play.

I would also like to acknowledge the ongoing support of the various Health Service Executives, as well as the many voluntary organisations (too many to mention, you know who you are!), who have also provided me and MDI with huge support and assistance over the years, acknowledgements for which are recorded in this book. Without these vital supports, many of the services which we at MDI provide would be seriously affected.

Since I became involved with MDI, I have been very privileged over the years to have met so many different, inspiring people, who have fought to live, have fundraised tirelessly and have touched my life in a deep way. It is this which has given me the strength and drive as CEO to try and provide the supports which people with neuromuscular conditions and their families need.

In addition, I believe that family members, MDI members and friends who have sadly passed on, are also guiding and driving me on with the work of MDI in a spiritual way.

It is an honour for me to continue to serve as CEO of this inspiring organisation as we celebrate our 40th anniversary.

MDI has travelled a long road with a number of bumps along the way over these forty years and I am humbled to be part of that journey.

It is forty years since a group of interested people and parents of children with muscular dystrophy met in their homes in Co. Galway to set up a support network for people with muscular dystrophy and their families. I’m sure that little did they realise that forty years on MDI would have grown to be such a unique and member-led organisation, providing such a wide range of services. I hope we have lived up to their expectations (I think we have).

In this book we have captured interviews from a cross section of key people over the years, from founder members to current members, past and present staff, to try to demonstrate how MDI has grown over the years and to provide readers with a unique insight into the history of our organisation.

I hope that my contribution to MDI’s development to date and into the future will be beneficial to the organisation in continuing that journey and in supporting and improving supports for people with neuromuscular conditions and their families.

Best wishes, Joe T Mooney, Chief Executive Officer.

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FORWARD CHAIRPERSON OF MDI, ELAINE MCDONNELL BY

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Dear MDI Members and Friends,

T

his year is a momentous one for Muscular Dystrophy Ireland, as it is the 40th anniversary of the establishment of the organisation. From small beginnings MDI has grown into a strong, vibrant association which has always had the welfare of its members as its focus.

The success of MDI is due in no small measure to the hard work and dedication of its staff, volunteers and committees (both branch and national) down through the years. Then we come to the members themselves and their families, both current and those that are no longer with us. Those members who have had a hand in the formation of the organisation and in shaping its direction can only be described as heroes and heroines. Their sheer determination to improve the life experience of others is heroic. It is fitting that this book puts on record the contribution made by these people both within this organisation and in the wider community.

On a personal level, MDI has been a rock to me at branch and national level since I first joined the organisation. I am extremely proud to be Chairperson during this anniversary year.

On behalf of myself, my family and I am sure members across the country I would like to express my thanks to the staff, members, committees and volunteers who have given their time, energy and commitment down through the years to make this organisation what it is today.

This book provides us with an account not only of the growth of the MDI community but also documents and celebrates the contributions made by individuals. I hope it will inspire the present and future members to fulfill their potential and to live life to the full.

Elaine McDonnell MDI Chairperson.

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1970S BEGINNINGS

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I

n July 1957, a letter was published in The Irish Times from a man in search of answers and human connections.

James Kerrigan from Donnycarney, Dublin informed readers that he was living with a condition called muscular dystrophy.

Using language befitting the time, he explained that it was ‘an incurable disease’ which ‘mysteriously’ weakened the muscles.

Readers were told that science couldn’t halt its progression.

He issued a rallying cry aimed at uniting anyone in Ireland touched by muscular dystrophy, and told how some 200,000 people in America were living with the condition. ‘Other diseases are already catered for in the Republic,’ he wrote, ‘but, so far as muscular dystrophy is concerned, nothing has been done to associate the people connected either directly or indirectly with it.’

What became of James Kerrigan’s appeal is not known, for it did not lead to the formation of a sustained organisation for people with muscular dystrophy. Nevertheless, it was a valuable expression of the need for such an entity and gave an authentic insight into the isolation and frustration of having a rare, incurable and little known condition in a small country.

In essence, it underlined just how badly a representative organisation was needed.

When James Kerrigan’s letter was published in 1957, it is likely that hundreds of people in Ireland were living with some form of muscular dystrophy. These adults, children and extended families had little information and scant support.

This situation began to change in the early 1970s following a diagnosis of muscular dystrophy within a family in the northwest. In 1971, Clareman Matt O’Connell was residing in Arva, Co Cavan where he worked as a manager with Bank of Ireland. The daily pattern of life was forever altered, however, when Matt’s youngest son Barry was diagnosed with Duchenne muscular dystrophy. This serious and incurable condition is caused by a mistake in a male child’s genetic code and results in progressive muscle weakness. The first signs of Duchenne are often problems with muscle function such as difficulty running and jumping, enlarged calf muscles and delayed speech development, and most boys become wheelchair-users between eight and eleven years of age. Today there is still no cure for Duchenne muscular dystrophy but young men are often living well into their thirties, and scientists continue to work towards

Matt O’Connell, the founding member of MDI.

enhanced treatment options. In the meantime, it remains a very challenging diagnosis for any family and this was especially the case in Ireland over forty years ago.

‘I didn’t know where to turn,’ confirms Matt today. ‘Barry was just four years of age and starting school. The doctor diagnosed him and then we got a second opinion from Crumlin Hospital.’

It was the beginning of a private journey for the O’Connells, yet their search for answers yielded something beyond the personal. The family’s efforts brought together a committed set of people who laid the foundations of Muscular Dystrophy Ireland (MDI).

Initially, in the absence of an Irish support association, Matt looked abroad for information and support. The most obvious go-to body was the Muscular Dystrophy Group of Great Britain, which is now known as the Muscular Dystrophy Campaign. Founded in 1959, its patron was the Duke of Edinburgh Prince Philip and its profile was further strengthened when the actor and director Richard Attenborough became its president in 1972. Indeed, Matt MUSCULAR DYSTROPHY IRELAND 7

notes how muscular dystrophy was the focus of numerous well-known initiatives internationally, with the most notable being the annual US Labour Day Telethon hosted by actor and comedian Jerry Lewis from 1966 (and which was not without controversy in respect of Lewis’s portrayal of people with muscular dystrophy). But in Ireland, at that time, no awareness, support or celebrity endorsements surrounded the issue and it was necessary to start from scratch. Matt’s energy and impetus proved the catalyst in this regard.

People in Ireland affected by muscular dystrophy began to get word of Matt’s initiative through the British organisation or via Our Lady’s Children’s Hospital in Crumlin, Dublin.

Quite fortuitously, some families had travelled to Arva to see the locally-based ‘faith healer’ Finbarr Nolan and they saw the collection boxes around the town. The trail led them to Matt.

Such developments were welcome but Matt was cognisant of a serious responsibility resting on his shoulders. It was an age before the information superhighway and doctor-patient relations remained somewhat hierarchical. Some families wouldn’t have known much beyond what medics wanted them to know, so the sharing of information was quite sensitive in some instances.

‘I got all the literature from the British group, and some of it was very heavy literature,’ says Matt, ‘you had to be careful how you gave it to people because it was an awful shock to some people. People were afraid of what was going to happen.’ Such sensitivities were negotiated, however, and an informal network of families began to take shape. ‘I got to know a lot of people very quickly,’ Matt remarks. ‘In the 1970s we used to holiday in a trailer tent and holidayed in Donegal, Louth, Wexford, Cork, Kerry and Clare...we crossed many other counties and called on people who had an interest or problems.’

Actor and comedian Jerry Lewis raised awareness of muscular dystrophy in America.

Matt proceeded to contact the British organisation and he became its representative in the Republic of Ireland. He was soon in receipt of organisation literature, letterheads and collection boxes which carried the figurine of a boy in a wheelchair and prominently carried the message, ‘Fight Muscular Dystrophy’. He began to distribute the boxes around Arva and the proceeds would be sent to the British group for its research fund and later to the medical geneticist Professor Norman Nevin at Queen’s University Belfast.

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People began meeting together during 1972, which is widely regarded as the formative year of MDI. ‘We had a meeting in a motel at The Heath, Portlaoise and people involved came from Dublin, Cork, Cavan, Clonaslee, Galway and Tullamore, but we were very few and scattered.’ Activities to formalise an association took on a structure following Matt’s work transfer to Mountbellew, Co Galway and in early 1973 a special meeting was convened in the town courthouse by the late John Keeley, a local social welfare officer. Matt spoke to those assembled about muscular dystrophy and an election of officers took place.

Matt strongly credits the people of Mountbellew with helping him to form the organisation and points out that nobody at this assembly had any personal connection with muscular dystrophy other than himself: they were just eager to help.

As Matt recalls, some of those attending this meeting included Dr Michael Mellotte and Dr O’Byrne, Fr Patrick Costello, Kathleen and Paddy Healy, national school teachers Mrs Conway and Mrs O’Brien, Michael and Brige Hogan,

One of many posters and leaflets from the UK Muscular Dystrophy Group, which MDI used in the early days.

Pearl and Patrick Finnegan, Adrian Walsh, Mary Fleming, Bridie Kitt, Mr and Mrs Paddy Barrett and Mr and Mrs Peter Briggs.

At the meeting, John Keeley was elected as Chairman, Adrian Walsh as Treasurer and Matt as Secretary. Matt was eager to get a structure in place so that the organisation could establish a profile and alert others to its existence. ‘This [election of officers] gave me the backing of an Irish group,’ underlines Matt, ‘and I was able to communicate with Ministers, TDs, doctors and health boards on behalf of patients.’

Matt remembers that in these early days, a huge contribution was made by members such as Adrian Walsh, Mary Fleming and Kathleen Healy, among many others. The support of Oonagh Morrison from the Northern Ireland section of the Muscular Dystrophy Group of Great Britain was also highly valued. Indeed, Matt also continued his voluntary role with the British group for some time.

Matt’s good friend and work colleague Adrian Walsh was one of those involved from the beginning. Adrian’s eldest son was a classmate of Barry O’Connell, and Matt and Adrian often talked about the need for a representative organisation for families affected by muscular dystrophy. ‘We were very good

friends apart from colleagues and we used to discuss this a lot,’ recalls Adrian today.

Adrian says it soon became evident that ‘quite a number’ of people in the west were affected by the condition but ‘didn’t know what the problem was’. As more families began to surface, he recalls the understandable bewilderment of many. ‘We used to make the meetings as informal as possible,’ says Adrian, of the need to ensure that people felt among friends.

Judy Windle, a solicitor in Dublin whose son Mark also had Duchenne muscular dystrophy, became involved after reading a letter which Matt had written to The Irish Times in the early 1970s. She was to become one of MDI’s most influential members over many years and remembers how ‘a very good group’ had been assembled from early on.

According to Matt’s original notes from the decade, there were 1,100 known cases of muscular dystrophy in 1973, including 232 instances of ‘the severe type’. The confusion, mislabelling and mystery surrounding muscular dystrophy are evident in Matt’s contemporaneous notes. ‘I have found in the families I have met a generation gap,’ wrote Matt. ‘The severe type was called polio, creeping paralysis and spinal curvature even though it was over 100 years since Dr Duchenne discovered the severe type.’

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These images show some of Matt O’Connell’s notes from the 1970s, when he formed the organisation, and documentation from the 1980s as the organisation continued to grow.

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Matt recalls that aside from the appetite for a support and fundraising network, there was an increasing need to develop an organisation which could lobby the government and health authorities on issues of importance. Indeed, an early lobbying enterprise saw the group successful in having muscular dystrophy included on the Department of Health’s long-term illnesses scheme in 1974 (a decision which took effect in 1975).

This meant that people affected by the condition could receive medicines and appliances free of charge, irrespective of means.

The organisation was clearly progressing but still had a huge distance to cover. By the mid to late 1970s, many interested parties were still unaware of the work going on in the west of Ireland. In Dublin, Beryl Ryan was one such person. She would devote a huge amount of personal time and input to MDI over the course of two decades and even today in the family-run Beggars Bush pub in Ballsbridge, the only collection boxes permitted on the premises are those of MDI, in recognition of this special connection.

Beryl became interested in muscular dystrophy due to the fact that her only first cousin, Alan Tomkins, had the condition.

Alan, who lived in England, unfortunately passed away aged 15 in 1978. Beryl noted how few people in Ireland knew anything about the condition but the issue got an airing when a Dublin couple who had two boys with Duchenne muscular dystrophy went on the Gay Byrne radio show. A friend of Beryl’s heard the interview and told her that the family ‘wanted to know of anybody interested in forming an association’.

Beryl wrote to the show and was linked to the parents in question - Peter and Tríona O’Brien in Tallaght, Dublin.

They all began meeting up in each other’s homes and soon came to hear of other people affected by muscular dystrophy and subsequently about Matt’s efforts to form a group. Beryl remembers how, on many occasions, she’d hop into her car to visit a family who had just come to their attention. Memories of these people hold strong over three decades on. ‘The first lot of families that we met, they became very important,’ says Beryl, ‘they didn’t know where to turn and we tried to support them.’

Peter O’Brien strikes a similar note. His boys Derek and Alan were diagnosed in 1976, and he and wife Tríona had decided to go on the radio to try and create greater awareness of the

Barry O’Connell (1966-1981), son of Matt and Florrie O’Connell.

condition and link families together. They subsequently met with Judy Windle, who informed them of Matt’s initiative.

Following Matt’s work transfer to Moate, Co Westmeath, meetings began to take place in Athlone, which better accommodated those coming from the capital and surrounding areas.

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One of the families involved were the Sugrues from Malahide, Co Dublin.

As a little girl, Ciara Sugrue remembers munching on Tayto and drinking cola in the back of the car on trips to MDI meetings with her family. Her late father Carl contributed to the development of the organisation in these early years, and her mother Thérèse and sisters recall him being particularly active in helping to generate awareness of muscular dystrophy, especially in the Dublin area. As Ciara recounts, her late brothers Brian and Kevin had been diagnosed with Duchenne muscular dystrophy shortly after the family had relocated to Ireland after 12 years living in the United States.

‘My father decided that there was so little support for families that something had to be done,’ says Ciara, of the dearth of information facing affected people. ‘He spoke with the Central Remedial Clinic (CRC) in Clontarf – at the time it was more focused on catering for children with polio and spina bifida and he spoke to them about facilitating children with muscular dystrophy.’

Carl also liaised with Matt and took on various initiatives himself. His wife Thérèse was also involved in MDI some years later.

Indeed, with the support of such families MDI continued to progress during the 1970s and registered as a company in 1977, which necessitated a constitution and other such formalities. As Judy Windle recalls: ‘Matt got a company set up for us...That kept us on track. We had to have an AGM and accounts done properly.’

The character Rupert Bear was used for muscular dystrophy campaigns in in Britain the 1970s.

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In late 1978, a Dublin Branch was formed due to the growing number of active members from the capital. Peter O’Brien was its first chair and it formed a support network and also began fundraising activities. Matt updated readers of The Irish Times on developments in a letter published on 8 December 1978, from which the below is extracted:

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Against the background of these activities, Matt enjoyed the support of his wife, Florrie, who ran the house and looked after Barry while Matt was at work. The youngest of five children, Barry was a very contented boy right up until his sad and untimely passing at 15 years of age, says his father. He was an avid astronomer, or as Matt warmly puts it ‘a great man for the universe’. Indeed, Barry had a strong aptitude for all things tech. ‘He was very with it, he had Star Trek [paraphernalia] and all these things,’ says Matt. ‘He had his own way of doing things, and when we look at life, I wish we were all like that. Half our life, we’re rushing here and rushing there. He was in his moment all the time.’

Matt remained as a key member of the organisation into the 1980s and beyond. With the late John Keeley, he was made a life Vice President of MDI in recognition of his huge contribution and efforts.

A presentation to Matt and Florrie O’Connell at an event marking MDI’s 25th anniversary in Mountbellew, Co Galway in 1997.

Pictured from left to right: Adrian Walsh (MDI Mountbellew), Kathleen Healy (MDI Mountbellew), Matt O’Connell (MDI Founding Member), Florrie O’Connell (wife of Matt O’Connell) and Oliver McHale (MDI Mountbellew).

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1980S TAKING FLIGHT

LEGEND had it that Martin Naughton, an MD [muscular dystrophy] sufferer, decided a few years ago to set up an association. But when he went to his phone-book he discovered there was one already in existence. So not being one to let the grass grow under the wheels of his electric chair Martin got involved and last year became Chairperson of MD Ireland.

- MD Update, autumn 1986.

Current and previous logos used by MDI over the years.

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D

uring the 1970s, the organisation had formed, fundraised, lobbied, shown solidarity and ensured that muscular dystrophy was less of an unknown quantity. It had gathered together people for whom standing still was not an option, and it was attracting new members eager to contribute. This was the best possible base on which to build.

Martin Naughton is a well-known disability activist who has championed independent living. He is also a wheelchair user due to the effects of a form of muscular dystrophy known as spinal muscular atrophy. Martin became involved with MDI - as it was becoming known - around 1982 with his good friends Hubert McCormack and the late Ursula Hagerty (nee Hegarty). The trio grew up together at St Mary’s Hospital and Residential School in Baldoyle, Dublin, which specialised in care for people with physical disabilities. They proved influential in shaping the organisation’s mentality. Hubert, Martin and Ursula knew that nothing came easy and they understood that perseverance was necessary if the situation of people with muscular dystrophy was to improve. Their tough experiences as children and young adults gave them a special kind of backbone.

MD Update, was ‘having a mind of your own, fighting against authority, and making yourself accepted by able-bodied people.

Don’t let people treat you like a fool because you’re disabled.’

Hubert McCormack, who like Ursula and Martin was affected by spinal muscular atrophy, suggests a tight bond was formed during a childhood couched in mystery. ‘[At St Mary’s Hospital] there were lots of boys with Duchenne,’ he says. ‘They would have all passed away and I often wondered, was I going to be next?

Martin Naughton probably diagnosed me. He said, ‘“You don’t have Duchenne muscular dystrophy.” I think I was twenty when I finally got the [proper] diagnosis.’

Friends Hubert McCormack and Martin Naughton, who both became involved with MDI in 1982, along with their good friend Ursula Hagerty (pictured to the left).

Ursula Hagerty (above) whose passion and zeal will always be remembered. Ursula served on the MDI Executive and National Council for over 15 years.

Sadly, Ursula Hagerty is no longer around to corroborate this view, but her courage and integrity are fondly remembered by many of MDI’s members. Her recipe for success, she once told 16 MUSCULAR DYSTROPHY IRELAND

As Hubert suggests, Martin Naughton was a figurehead to those around him and he quickly became a leader within MDI. Martin was elected chair in 1985 and recalls a ‘kind of a crossroads’ around the early to mid 1980s when members decided that more emphasis should be put on the building of a support infrastructure. It was the beginning of a gradual shift away from maintaining the same degree of importance on financing research, although the latter certainly continued.

Indeed, in the early 1980s MDI and the Richmond Hospital financially supported a DNA study into muscular dystrophyaffected families. The first study of its kind in Ireland, it aimed to gain a greater understanding of the molecular genetic processes involved in the cause of muscular dystrophy. It was led by Dr Peter Humphries with Dr Michael Gill at the Genetics Department in Trinity College Dublin.

MDI’s funding of this project continued during the decade, but the development of services became increasingly important.

As Martin explains, there was an intensified focus on harnessing MDI ‘as a live, responsive organisation to members’.

Hubert McCormack echoes this view and says the organisation needed to address the immediate needs of members.

After all, nobody had a crystal ball in respect of treatment breakthroughs. ‘Twenty years ago, I remember it being said that it would probably be twenty years [before a cure was found],’ says Hubert, ‘and now twenty years later the cure hasn’t come about... but it is probably getting closer.’ In the meantime, Hubert underlines that with ‘the right supports – equipment, transport, assistance –there is no reason why you cannot live a fully active life’.

When considering the constant developments at MDI, 1985 is a notable year on the timeline. Its Board during 19856 was chaired by Martin alongside Matt O’Connell (Vice Chairperson), Judy Windle (Secretary), Beryl Ryan (Treasurer), Jimmy Murray (PRO), Derek Farrell (Medical Officer), Jimmy Rogers and Denis O’Brien (Welfare Officers) and this crew oversaw a range of ‘firsts’.

By this stage, the organisation had organically shifted to Dublin where its quarterly national council meetings were held, although AGMs rotated around the country. What MDI now needed was a permanent physical base in the capital. A practical advancement in this regard was acquiring the use of a small office space in Monkstown, Co Dublin through the Union of Voluntary Organisations for the Handicapped (UVOH), now known as the Disability Federation of Ireland (DFI).

MDI also took on its first full-time employee, Margaret Kelly, through the government’s social employment scheme. A nurse by profession, Margaret fulfilled the role of information officer and assisted members with health and social welfare queries.

A further milestone, in May 1985, was joining the European Alliance of Muscular Dystrophy Associations, EAMDA, which is now known as the European Alliance of Neuromuscular Disorders Associations.

‘We needed to go beyond Britain particularly if we were to really enlighten ourselves towards the management of MD,’ says Martin, ‘and Judy put a gigantic effort into becoming part of the European

Alliance of Muscular Dystrophy Associations. We got a huge amount of learning in that way. Even at the time, you don’t realise the amount of exchange that is going on, but whether it is the type of equipment, the wheelchairs, the type of intervention that was happening, people started connecting with people abroad, and that was very useful.’

Derek Farrell was elected Vice President of EAMDA in 1986. Derek, who had been diagnosed with limb girdle muscular dystrophy in adulthood, echoes Martin’s view that participation in EAMDA was vital for MDI’s development. ‘If the organisation was to grow and prosper, it needed to establish those contacts,’ he says. MDI approached its membership of EAMDA with due diligence: its delegates at the body’s annual conference in 1987 in Norway were Dr Owen Hensey of the Central Remedial Clinic and Dr Joe McMenamin of Our Lady’s Children’s Hospital, Crumlin. This was the first occasion on which MDI had been represented abroad by medical professionals.

Judy Windle was Secretary General of EAMDA from 1987 to 1992 (and again in the mid to late 1990s), which brought MDI some financial assistance and many linkages, while the EAMDA youth camps proved a vital knowledgeexchange for those lucky enough to get a place.

Judy Windle.

In August 1986, Hubert McCormack, Pat Sheridan, James McInerney and Joe T Mooney (MDI’s present-day Chief Executive) represented Ireland at one such camp on the isle of Texel off the coast of Holland. Participants traded information about supports in their own countries, but the social element of the experience was also very important. Upon his return, Hubert recollected: After 30 hours of travelling, we arrived in Texel extremely tired, but this did not stop us making our first ‘social exchange’ with the Germans, with whom we drank lots of ‘Amstel beer’, and sang ‘Dirty Old Town’ – a German favourite – till the early hours of the morning. This international ritual continued during the entire week.

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Attendance list and Secretary’s Report from the MDI AGM 1981.

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MDI also took part for the first time in the EAMDA Chess Tournament in 1988. Some 42 participants from twelve countries across Europe gathered at Hereward College in Coventry, England for the event which featured the Irish team of Seamus Mooney (Captain), Fergus O’Kelly, Joe T Mooney and Dermot Magee.

The Irish didn’t win the competition but something more important than silverware was captured by team captain, Seamus Mooney, who later wrote: The MD chess team’s trip to Coventry in England at the end of August has left me with new friendships and the memory of a wonderful weekend in which I was proud to represent the Irish MD association. The most unexpected thing of the weekend was the college where the tournament was held. I could not have imagined that such facilities existed that allowed people in my position to undertake normal third-level education.

Firstly, let me tell you about my position. I qualified as an accountant last December and presently work in a professional accountant’s office. Having done my Leaving Certificate in 1982, I applied for university and was offered a place to study for an Accountancy degree with the National Institute for Higher Education (NIHE) in Glasnevin, Dublin. However, I was unable to take up the offer because I could not find suitable accommodation. I thus had to study for my accountancy qualification through home-study correspondence courses.

I am sure I am not the only one in the above position and I think that it is very exciting to see facilities in England where disabled students can attend college along with able-bodied students during day-time and have specialist care and accommodation laid on so they don’t have to worry about fending for themselves.

When we arrived at the college, it appeared to be like most modern colleges – a red-brick building with pleasant looking grounds in a nice suburban district. Even though we were very tired from the journey, it wasn’t long before we started to note that there was something different about this college – no steps, automatically opening doors, door handles and switches at wheelchair level, two lifts that could hold four wheelchairs each (and I could operate them myself) etc. However, the best was yet to come. Within a few yards of the main complex was a building containing at least twenty bedrooms (I learned later that there was another of these buildings elsewhere on the grounds). Each member of the team

was given a bedroom which contained bed, desk, shelf, sink, mirror, power point and wardrobe. Within the building was a TV room, public telephone (at wheelchair level), attendant’s room, a telephone to connect with other parts of the college and various corners where people could meet. Approximately every five bedrooms had a bathroom specially designed to accommodate wheelchairs...If I had known in 1982 that such facilities existed, I would probably be posting this letter from England today.

For anyone in the above position, I would ask them to look at the opportunities being offered by these types of educational establishments in the UK remembering that grants are now available for taking up places there.

Seamus Mooney being presented with a trophy at a chess tournament in England in 1988.

Seamus Mooney’s observations once again underlined the importance of participation in EAMDA in terms of generating new expectations and ideas.

MDI participants Fergus O’Kelly, Joe Mooney, Dermot McGee and Seamus Mooney, pictured with friends at a chess tournament in England in 1988.

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MDI’s deepening participation in EAMDA would reach an apex when it hosted the body’s 18th annual conference in September 1988 at St Patrick’s College, Drumcondra, Dublin.

Delegates from eighteen European countries and observers from the United States attended the two-day assembly which was part funded by the European Community Social Fund.

Martin Naughton of the conference. ‘It let us know that not alone were we on the right road but we were travelling with some gusto and if we were to maintain this we would have to put some professional support around it, in terms of a team etc.’

As much as MDI benefited from EAMDA, it is also important to recognise the energy and input it would contribute to the association and this influence would become clear over time.

On the home front, the development of branches became an area of special focus during the 1980s and by winter 1986 there were 10 countrywide branches in various stages of development (the number and prominence of branches has fluctuated over the years depending on personnel). This growing network had a positive influence on fundraising efforts, as illustrated by the first nationwide sponsorship of MDI’s 1986 Dublin City Marathon team which raised around IR£11,500. Over sixty participants from around the country represented MDI, led by top runner Billy Gallagher and representing the fourth time that MDI had fielded participants in the event.

Delegates from across Europe attended the 1988 EAMDA conference, hosted by MDI in Dublin that year. Pictured left to right are Seán Mac Réamoinn (President of MDI), Ben Briscoe (Lord Mayor of Dublin), Reinhardt Rudel (President of EAMDA), Judy Windle (MDI) and Ysbrand Poortman (Vice President of EAMDA).

The conference was preceded by a civic reception hosted by then Lord Mayor Ben Briscoe TD and the event itself included addresses from the then President of EAMDA Professor Reinhardt Rudel and Dr Anthony P Monaco, who was part of the Boston team which had discovered the Duchenne muscular dystrophy gene.

The medical/scientific theme of the conference was spinal muscular atrophy whilst psycho-social sessions dealt with counselling and support groups for patients and their families.

Irish experts who delivered talks included Dr Susan McManus, consultant geneticist; Dr Carol Fitzpatrick, child psychiatrist at Children’s Hospital Temple Street; and Críona Garvey, senior clinical and educational psychologist with the National Rehabilitation Board.

‘That was key because it brought to a head, if you like, the work we had been doing for the last three, four, five years,’ says 20 MUSCULAR DYSTROPHY IRELAND

The branches were also key channels of mutual support. The Donegal Branch was formed in August 1983 by Matthew and Susan Peoples from Garrymore, Kerrykeel, Co Donegal, following the diagnosis of their three sons the previous year.

Their boys – Liam, James and John – attended the National Children’s Hospital on Harcourt Street, Dublin, prior to and following diagnosis and Susan recalls the less than sympathetic manner of one ‘professor somebody or other’ who essentially ridiculed her distress. At a time when she was experiencing a raw upset following news of the diagnoses, ‘a whole pile of students’ were privy to a consultation which caused great and demonstrable upset to Susan and her family. The consultant in question ‘wasn’t sympathetic to this’. Susan holds better memories of the family’s experiences at the Central Remedial Clinic.

Susan recalls that it was a paediatrician in Letterkenny who first told her and husband Matthew about MDI, which was about to hold its annual general meeting in Athlone. ‘She recommended that we go, and we did go,’ says Susan. One of the people they met at the meeting was Oonagh Morrison from the Northern Ireland branch of the British muscular dystrophy association, and Oonagh encouraged them to form a Donegal branch. They did just that. The Donegal Branch held its inaugural meeting at the Milford Inn in August 1983 and

Susan recalls, in particular, ‘an awful lot of support’ from her nursing colleagues at St Conal’s Hospital in Letterkenny at this time. A fundraiser which proved very successful over the years was the Guest Teas, while the branch also organised talks by medical professionals, states Susan.

Indeed, branches all around the country were vital outlays of support to children and adults affected by muscular dystrophy.

Sheila Curran’s son Robert was diagnosed with muscular dystrophy at the age of 12 in 1986 and she says it was morale boosting to share experiences through the Cork Branch, which she helped to establish that same year. ‘It was marvellous to talk to the other parents and meet other parents who had children with muscular dystrophy,’ recounts Sheila, who served as Treasurer of the branch for many years and whose husband Dan is a former branch Chairperson. What she remembers most are the holidays that the branch organised for members, which were preceded by fundraising efforts. ‘We did some great work.

I remember we went to Lapland with the children to visit Santy Claus, it was a marvellous holiday – that was seven or eight years ago.’ She also recalls her son Robert, now 37, going to Moscow with MDI as a youngster. It was quite a culture shock and Robert came back talking about pizzas topped by Brussels sprouts and the like, chuckles Sheila. The Christmas parties held every year were also much-anticipated by children and adults alike. Sheila recalls some initial problems in that some parents understandably feared that the get-togethers could lead to the children comparing disabilities and worrying about what might be around the corner. However, ‘on the day most of the parents brought their children to the parties’ and the youngsters paid little pass on what disability might affect the other.

Indeed, the branch always made sure to make the Christmas parties particularly memorable – such as arranging for the arrival of Santa on a tractor or lorry. The kids went home happy and with goodie bags to boot. ‘They were a great success,’ says Sheila of these occasions. Others who were highly active in the Cork Branch included June Scannell, Ena Howell and Margaret Butler, to name but a few.

June Scannell, now 65, had been diagnosed with muscular dystrophy at the age of 33 and thereafter became heavily involved with the Cork Branch, attending meetings at the Grand Parade Hotel. ‘If I join something, I hate to miss any meeting or any event,’ she says today.

During the 1980s, efforts to advance links between MDI and medical professionals were also accelerated. The organisation’s AGMs expanded into conferences at which medical experts spoke. ‘One of the things we found was that [some] medical professionals had very little knowledge about muscular dystrophy at all,’ says Martin Naughton, ‘and so what we used to do was invite key consultants, neurologists from a local region, to do a night and we would send them all the information and who they should speak to if they wanted more information and they would come and do a presentation...We would get a turnout, number one, but as well as that we actually had the consultants having to do a bit of homework and saying “oh right, there is maybe a little more to this than meets the eye”. That was very useful.’

With activities ever growing, obtaining a bigger office space in Dublin became imperative. But budget constraints meant that the rental costs of many offices remained out of reach. Money talked – and MDI didn’t have much to spare. Martin recalls that an influential public servant named Jim Molloy helped to solve this issue.

‘Jim Molloy worked in Dublin Corporation forever and a day and he was promoted to the county manager of Dublin,’ begins Martin. ‘As part of the tests that he had to undergo, they actually found a form of muscular dystrophy, and very shortly after that Jim was a wheelchair user himself. The whole notion of the Carmichael Centre kind of came from Jim.’ In 1988, the Community Services Project - of which Judy Windle was one of the founding members and which became the Carmichael Centre - was established in conjunction with Dublin Corporation. It was located at Christchurch Place, Dublin, and enabled 18 small organisations including MDI to establish their headquarters there.

There was a blip the following year when the project was served notice to leave because Jury’s Hotel owned the land and wanted to commence building work. The late Kate O’Sullivan, an active member of An Óige Threitheach, led the response which culminated in a street protest. MDI members fondly remember Hubert McCormack joining in the action against this proposed eviction, with chairs and desks brought out onto the street during evening rush hour! The minister for health at the time, Rory O’Hanlon, subsequently asked Dublin Corporation, the Eastern MUSCULAR DYSTROPHY IRELAND 21

Health Board and the Department of Health to come together to ensure the organisations were given alternative accommodation. This led to the project moving in 1990 to the former Doctor’s Residence of the Richmond Hospital on North Brunswick Street, also known as Carmichael House.

The famous Carmichael Centre was born and MDI is written in history as a founding member of this well-known and enduring initiative Other noteworthy events during the 1980s included the launch of the periodical MD Update (autumn 1986); becoming a founding member of the Inherited Disorders Association – now the Genetic and Rare Disorders Organisation (GRDO) – in November 1986; the election of famed journalist and broadcaster the late Seán Mac Réamoinn as MDI President in May 1988; and the 700 Mile Cycle by Dave Toner, Carl Lawlor and friends in 1989.

The newsletter was a very valuable addition to the organisation’s activities. As well as practical information, it offered advice from parents whose children had muscular dystrophy. In the spring 1988 edition, for example, Marie Magee wrote about her experiences with her energetic and determined son Dermot, who had Duchenne muscular dystrophy. Her article was honest, loving and hopeful: The psychological pain that families have to endure is hard but all people are different. For some it takes longer to come to terms with it. You may never accept that your child is disabled or handicapped, whatever term you want to use, but in time you will learn to live with it...please remember, you are only a phone call away from getting help or talking your problems out with someone who knows how you feel. Please don’t think that because I can sit down and write this, that I’m a great person. I’m not.

What I came to realise was that I was not alone and that there were people worse off than me...Dermot is fifteen now. He is growing up and we have learned a lot from him. We consider ourselves very lucky to have him and he is loved by all his family, and he knows it.

Branch activities, commemorations and fundraising also continued. Notable events and commemorations were the Annual Supper Dance organised by the Dundalk Branch – which was chaired by Terry Dullaghan for some years – and the Annual Mass organised by the Dublin Branch at St Patrick’s College, Drumcondra.

Another highlight, as recalled by Derek Farrell, was when 45 members from Dublin attended a Michael Jackson concert in Cork in summer 1988. A special coach was provided by the North Kildare Branch of the Irish Wheelchair Association, while the Cork Branch helped out with accommodation. ‘That was a new departure,’ remarks Derek of the trip, noting that the here-and-now needs of members were gaining a growing emphasis. Derek served as a non-salaried Director of MDI in the late 1980s, but with a family to support he took on a new challenge in May 1989 with the Irish Disabled Drivers’ Association where he served as Chief Executive for many years.

Derek says ‘a lot of committed people and families’ contributed to the development of MDI and indeed the dedication of these volunteers ensured that MDI headed into the 1990s on the cusp of employing its first ever salaried director – a major milestone for any organisation.

MDI Update was launched in autumn of 1986.

22 MUSCULAR DYSTROPHY IRELAND

On the wider front, the decade was also notable for scientific advancements in the understanding of muscular dystrophy, which were relayed to members through editions of MD Update.

A major development came in 1986 when researchers led by Dr Louis Kunkel at the Howard Hughes Medical Institute, Boston Children’s Hospital, discovered the gene which causes Duchenne muscular dystrophy. In late 1987, the research team further announced that this gene was responsible for producing a muscle protein which had a key role in muscle function. Researchers named the protein dystrophin and identified its absence as a root cause of Duchenne muscular dystrophy. These landmark discoveries, which were financially backed by the Muscular Dystrophy Association of America (MDA), are the bedrock of much of today’s ongoing scientific research.

The 1980s ended with the presentation of a Discussion Document which sought members’ input into the organisation’s future development. Members emphasised the need to spend more income on care and welfare, and for at least four family care officers. It was also decided that research should be funded on a budget basis agreed in advance with research agencies and not as a percentage of total income.

Amidst the chronicle of MDI’s development as an organisation, there were also a myriad of individual stories of accomplishment during the decade. In March 1989, for example, young Rory Macken won a McDonald’s Child of Achievement Award at a ceremony in Dublin.

Rory, who has sadly passed on, wrote about his experiences in MDI Update: ‘Another boy with muscular dystrophy was an award winner too. He was Raymond Callaghan, Athy, Co Kildare. We did not meet but I saw him going up to collect his trophy.’ He kept his eye out for celebrities, even spotting Twink, and enjoyed a nice lunch. ‘The only let-down on the day was a puncture in my wheelchair,’ he wrote. ‘It was a great day. I will never forget it.’

Rory was born in 1976 and diagnosed with muscular dystrophy in 1984. His mum Sheila had sensed ‘there was something wrong’ but the ultimate diagnosis came as a great shock.

Sheila and her husband, John, became aware of MDI through the Central Remedial Clinic and they met other families affected by muscular dystrophy through both entities. ‘Mothers such as

‘I MIGHT BE’ - a poem composed by Donal Seamus Leavy, Dundalk, aged 11 years. It was published in MD Update, spring 1988.

Joan O’Reilly, a fantastic character, we met her through the Central Remedial Clinic. We used to meet and then we got involved with the association itself. A group of women would meet on Tuesdays at the Gresham for a talk and a chat,’ recalls Sheila, who cites Tríona O’Brien from Tallaght and Marie Magee from Finglas as among the mothers who regularly got together. She noted how MDI’s events and annual general meetings ‘always had something special for the children and always put the emphasis on the whole family’.

This was especially important if families had a long journey to Dublin, she notes. Sheila also cites the 1990s as a time when the organisation was ‘changing rapidly’ under the direction of Catherine Hickey: ‘Catherine did her utmost in terms of getting grants and was totally clued in.’ For the family in general, the support offered by interaction with other parents was vital. ‘I used to find going to the association and getting ordinary people’s impressions about their own sons kept us going...if it wasn’t for MDI we wouldn’t have really known children with that disability. It was a lifeline, as it were.’

MUSCULAR DYSTROPHY IRELAND 23

1990S GETTING

24 MUSCULAR DYSTROPHY IRELAND

IN GROOVE

O

ne of the most significant landmarks on MDI’s journey was the appointment of its first full-time director in 1990.

Catherine Hickey, who was chosen for that role, would serve the organisation with distinction for a decade, building on developmental services such as family care and introducing youth and respite care. Members remember Catherine’s knowledge and perseverance in finding new funding streams and her empathetic approach with families.

Catherine stepped in to an organisation with strong, hardworking and imaginative personalities whose volunteerism had heralded huge advances, and they served as her ‘reference points’ as she integrated into her new position. Chief amongst them were Chairperson Judy Windle, Secretary Jimmy Murray, and Martin Naughton.

‘Martin Naughton was for me, along with Judy, one of the driving forces at the time,’ recollects Catherine. ‘And Martin - who is a fantastic person really, there is no other way to describe him - was always thinking ahead... how could we do things better? How could we improve things?’

But resources were few and far between. Two part-time administrators – Hubert McCormack and Antoinette Roche– comprised the core staff and these positions were then dependent on community employment schemes. Just before Catherine’s appointment MDI had also piloted a family care officer post and Hennie Walsh was actively fulfilling this role in Dublin, Kildare and Wicklow.

Hennie was originally from the Netherlands and had an interest in muscular dystrophy as a member of her family had the condition. ‘I was involved with the Dutch association because my youngest brother, Marco, had Duchenne muscular dystrophy,’ explains Hennie. ‘When I arrived from the Netherlands in 1981 I looked up an association dealing with muscular dystrophy and found MDI.’ Hennie got involved in a voluntary capacity and, with her background in typesetting, helped MDI to establish a newsletter.

Catherine Hickey, Director of MDI 1990 – 2000.

Joe Jameson, whose son Simon presently serves on MDI’s Board and whose late son Ed was very active in the organisation, remembers Catherine Hickey’s tenure as a time when services for people with muscular dystrophy enhanced significantly. She was also ‘a lovely lady with an awful lot of empathy for the children and families’.

‘Funding was always the primary challenge, because funds were at the root of everything,’ recalls Hennie of the main challenges in the 1980s and beyond. ‘If we wanted to provide any services at all to members, we needed money. In the beginning most of the money went into research, but eventually it was decided that providing services to the members should be a very important part of MDI - not just Christmas parties, but other services. In order to find out which services were needed, I was commissioned to do a survey of the members. One of the results of that survey was that I was appointed as the first Family Care Officer.’

As Hennie recalls, her position covered an expansive geographical area encompassing the east coast.

MUSCULAR DYSTROPHY IRELAND 25

‘The first thing I did was visit every single family on our books,’ she explains. ‘For many of them it was the first face-to-face contact they had with someone from MDI. I was received like royalty in every single family and I must have gained three stone in the first year!’

Naughton and which was the first of its kind - was to increase awareness of muscular dystrophy and raise much-needed funds for the development of services. Some IR£14,000 was generated and the event expanded into a national awareness week in 1993. Today it is established as a firm fixture in the MDI calendar every February.

She sensed that the service had a strong impact on people.

‘I cannot stress enough how important it was for people to meet with someone “who understood”. The first question always was: “Do you have someone with MD yourself?” I also thought it very important to talk to siblings, being one myself, as they were often forgotten about. We started a women’s support group that met on a regular basis. The men’s support group wasn’t quite as easy, although foundations were laid and the men often made contact amongst themselves. I attended the Muscle Clinic at the CRC every month, where I made contact with members from around the country.’

Meanwhile, MDI’s move to Carmichael House in early 1990 gave the organisation more leverage. ‘That helped us a great deal,’ underlines Martin Naughton. ‘It gave us stability and meant that for the first time ever we didn’t have to think of where we would be...As far as we were concerned we were going to part of the Carmichael Centre for a long time to come and we were basically for at least the next 10 years.’

When Hennie had accepted the job, she made a list of priorities. ‘That list was added to on an ongoing basis,’ she recalls.

‘I represented MDI at fundraisers. I provided the odd bit of respite care. I organised events and I remember in particular Italia ‘90, which we attended with a group of young adults. It was great fun! I helped people getting their entitlements by informing them, following up etc.

‘And I attended funerals, too many of them...In the end, that was the reason I resigned from the job and went back to being a volunteer. Although MDI provided training in counselling and I had people to fall back on, I had known most of these children since they were first diagnosed at two or three and in the end it felt like attending my baby brother’s funeral over and over again…

Maybe I became too involved with the families, but for me that was the only way I could do the job.’

Hennie’s recollections underline just how important the commencement of this service was, and Catherine Hickey was to examine several funding paths to develop this and other services. ‘It was a question of tapping in to whatever was available,’ remembers Catherine.

One of Catherine’s earliest duties was to oversee the logistics of MDI’s first ever Coffee Morning/National Awareness Day in May 1990. The aim of the event – the brainchild of Martin 26 MUSCULAR DYSTROPHY IRELAND

The new Coffee Morning/National Awareness Day in May 1990 made the front page of MDI update.

By autumn 1990, MDI had made considerable gains. The family care officer scheme had been implemented with Hennie Walsh continuing her role in the Eastern Health Board area,

Early 1990s snap: Left to right are Mervin Taylor (Minister for Justice), Seán Mac Réamoinn (President, MDI), Judy Windle, Catherine Hickey and Hubert McCormack at a conference in the Westbury Hotel, Dublin, to launch the first Awareness Week in 1993.

first national Activities in Dublin to publicise MDI’s awareness week in 1993.

Awareness-raising activities in Dublin in 1993.

ormack A promotional picture of Hubert McC n. uctio prod Lir for the Children of

A re-modelled national awareness week was launched in 2002. Pictured are RTE Fair City cast members(from left) Denise McCormack, Sabrina Brennan, Orlaith Rafter with MDI member Ed Jameson.

Pictured during national awareness week activities in 1993 are (left to right) Olga Lorenzo, Niamh Fawl, Bernadette Kennedy, Catherine Hickey and Hubert McCormack.

erine Hickey, Bernadette Olga Lorenzo, Florence Dougall, Cath h Fawl pictured Kennedy, Hubert McCormack and Niam . week during the 1993 awareness

From Russia with love! Pictured on a youth exchange to Russia in the 1990s are (left) Deirdre Dooley, Family Support Worker, Dublin, Liann O’Halloran, Cork, and Meg Fitzgerald, Family Support Worker, Cork.

Visit to Áras an Uachtaráin: MDI members and EAMDA delegates visit President Mary Robinson in 1997.

Spanish exchange students on the return trip to Ireland, 1994.

An MDI visit to the Áras an Uachtaráin in 1997. Pictured are Catherine Hickey, Seán Mac Réamoinn, Judy Windle and Joe Mooney.

Young members enjoying the entertainment at an MDI function in the mid-1990s.

MUSCULAR DYSTROPHY IRELAND 27

Meg Fitzgerald appointed to liaise with members in the Mid Western, Southern and South Eastern Health Board areas, and Katherine O’Daly installed as a visiting family care officer.

By the end of 1990, MDI had also secured funding from the People in Need Trust to further develop the family care officer service and in 1992 the Department of Health agreed to fund MDI through the area Health Board to the tune of IR£75,000 which would become an annual payment. The organisation was gaining serious traction. In December 1993, the Minister for Social Welfare Dr Michael Woods allocated IR£20,000 from the Respite Care Trust Fund to MDI, enabling the establishment of a pilot respite care service. It aimed to meet the needs of people requiring care and carers for respite.

‘Getting the core funding was very important to us and getting the staff,’ underlines Catherine. ‘Pay in the voluntary sector was quite low generally in the 1990s....there wasn’t a lot of money to pay people at all, but at least we had low overheads as part of the Carmichael Centre. We could manage our overheads and manage our expenses.’

By the end of 1991, MDI had also brought on board a youth and information officer – Gráinne McGettrick and Aisling Towey respectively. Deirdre Dooley replaced departing family care officer Hennie Walsh, who stayed very actively involved with MDI through its Dublin Branch.

Family Support Worker Deirdre Dooley pictured with Peter Newman.

28 MUSCULAR DYSTROPHY IRELAND

Deirdre Dooley, now a family therapist, was a central figure as the family support service developed during the 1990s and became its coordinator. ‘I’d definitely say my learning began in MDI in terms of becoming a good therapist. It was a very significant time for me,’ says Deirdre, who recalls MDI as a ‘very nurturing place’ in terms of staff development. The family support service was built up slowly but surely. ‘Sometimes people didn’t know what it was about [initially] – it depended on the family support worker as well. We were all about providing practical information, setting them in the right direction.’ Deirdre’s own style had a strong emphasis on ‘listening support’ and there would have been a number of families she visited particularly regularly. She says the level of interaction depended on each family’s needs, which were all different. ‘It was a great place to work in many ways and I really valued the people I met and the impact this had on me in terms of understanding loss and hope.’

Indeed, Deirdre holds warm memories of the colleagues and families she met, some of whom have since sadly passed on, and she is still in touch with a number of people who she first met through MDI. Aisling Towey, who came on board as Information Officer for one year in the early 1990s, also remembers a dynamic group of people surrounding MDI at the time and indeed ‘the fun’ that was had, especially with the vibrant teenage members.

She responded to queries from members and the public, and also helped out with youth activities. She is now a clinical psychologist.

Gráinne McGettrick was the first Youth Officer, having just graduated from university with a social science degree at the time of her recruitment. ‘MDI, through Catherine Hickey’s vision, had decided it wanted to pursue and support younger people, and that’s where I came in.’ She recalls not knowing too much about muscular dystrophy before taking on the role, but when she began meeting members ‘it didn’t take long to identify the issues’ . Due to the nature of muscular dystrophy – and particularly its more serious forms – there were a lot of ‘tough times’ faced by the young people that Gráinne met, but she credits the dogged determination of MDI members and staff to improve the support, activities and facilities available.

In particular, she recalls the encouraging presence of Martin Naughton, Hubert McCormack and the late Ursula Hagerty – ‘that really steady senior gang who were really supportive...’.

remembers Catherine. ‘That was a very important initiative in giving members of MDI and others - who maybe would have had very little possibility of moving out of their own home into independent living - the opportunity to do that... The EAMDA connection was important in that, looking at best practice in other European cities.’

The first information officer, Grainne McGettrick pictured (left) with MDI member Elizabeth Bridcut.

In fact, Gráinne remembers a hugely impactful group of people surrounding MDI at that time including its director Catherine Hickey who was ‘very supportive’ and Judy Windle who ‘carried such credibility and the respect of everybody’. She also recalls visitors from afar, such as Gordana Rajkov who worked with MDI in the early 1990s. ‘She was a real tour de force in terms of disability and feminist politics...an amazing woman.’ MDI gave voice to its members, says Gráinne, but the challenge arising from this was to meet their needs. Given funding constraints, this was difficult – but MDI always tried its hardest.

Looking back, Gráinne sees MDI as having been facilitative ‘of so many major things that happened in the disability space in the following decades’.

One particularly crucial development in the lives of people with disabilities was the establishment of the Centre for Independent Living (CIL), which MDI members helped to found with other activists in 1992. The aim of the CIL was to create an environment where people with disabilities could live independent lives and one of its early initiatives was a dial-a-ride service known as Vantastic, which catered to the transport needs of people with disabilities in the absence of a government-led response.

‘Martin Naughton set up the Centre for Independent Living (CIL) with some of the members of MDI [namely] Hubert McCormack, Ursula Hegarty, and he had me involved as well,’

Pictured left to right are MDI’s Florence Dougall, Mervin Taylor (Minister for Justice), Arthur O’Daly (Finance Officer, NRB) and visiting disability activist Gordana Rajkov.

The EAMDA connection worked both ways. Gordana Rajkov, who became the first person with a disability to be elected to the Serbian parliament in 2007, was heavily influenced by time she spent with MDI and the CIL in Dublin in the early 1990s. She had first met MDI members through EAMDA and came to Ireland for a meeting in 1992. Due to the hostilities in the former Yugoslavia, she stayed for several months and it was during this period that she developed her theoretical understanding of independent living, although she had been practicing the concept herself for years. After her return from Ireland, she initiated the setting up of the Centre for Independent Living Serbia in 1996.

Another area that MDI began to focus on was the need for genetic testing and counselling. As a young doctor in the early 1990s, the now prominent consultant neurologist Dr Orla Hardiman remembers MDI pushing for change in this regard.

‘It’s hard to imagine that we had no gene testing at the time....

MDI was one of the groups that worked very hard to build a momentum to get geneticists into the country.’

MUSCULAR DYSTROPHY IRELAND 29

On a broader front, she says MDI was crucial in assisting its members during the cutbacks of the late 1980s and early 1990s. ‘The [State] services for people with disabilities were really, really poor. And MDI, along with other groups, were very important in filling the gaps for people who needed services which weren’t being provided by the State. Unfortunately that role is being taken up again now.’ Orla also refers to MDI’s inclusivity and says the organisation had people with muscular dystrophy in prominent roles from early on.

She credits MDI and Martin Naughton with helping to establish the Centre for Independent Living, and says Martin has been such a hugely influential figure. His ‘very full and active intellectual life’ has ensured he is ‘a hugely coveted member of various think tanks and groups and committees...I remember being hugely impressed by that as a young doctor in the early 1990s. In the story of MDI, Martin’s role in normalising disability should be hugely celebrated as well.’

As always in MDI, volunteerism continued apace around the country. Branches in Dublin, Cork, Dundalk, the South-East, Donegal and Mountbellew were all active, while a Galway city branch held its inaugural meeting during 1991. According to Catherine, the constant work in the branches demonstrated ‘the dedication and commitment by people affected by the condition and by parents’. A women’s support group was also up and running by the early 1990s, while the first annual youth camp for members was held in Co Donegal in 1992.

home number and she was away on holidays!’ says Janet, chuckling now at the memory. Once Judy returned, she got in touch with Janet and it was the beginning of a truly beneficial association. ‘The only word I think that really sums up MDI is ‘support’ in every shape or form,’ says Janet, who doesn’t know ‘how you would have coped” without knowing others in similar situations. Steven, now 33, and the family made cherished friendships through MDI and together they got through so many ups and downs – ‘laughter and tears’, as Janet aptly puts it.

The Fun Cycle in May 1990, which she and husband John organised, was from Finglas to Ashbourne and back again. It was followed by a céilí in the local community centre which was replete with haystacks for the occasion. Janet fondly recalls Hennie Walsh helping to make the sandwiches and rolls and indeed many others pulling together for a good cause. She also has great memories of the family support worker at the time, Deirdre Dooley, ‘a fantastic girl and a great support’. Steven made many great friendships through MDI, and the organisation’s trips and events allowed boys to be boys. Aside from that, MDI provided really practical and sustainable support, says Janet, who says Steven undertook a course for the European Computer Driving Licence (ECDL) through MDI. Today he is still very much computer savvy. ‘Yes, it’s the only thing really that he can do now,’ says Janet, ‘that’s his lifeline.’

Branch activities included awareness days, raffles, education evenings, media engagement, flag days, fundraising for the Cork Mini Marathon (Cork Branch), the annual Gresham Dance organised by Dave and Valerie Toner (Dublin Branch) and a Fun Cycle organised by John and Janet Fitzpatrick in May 1990 (Dublin Branch).

John and Janet Fitzpatrick from Dublin were strongly involved with MDI for many years. Their son Steven was diagnosed with Duchenne muscular dystrophy in the mid-1980s and MDI brought the family so much support, says Janet today.

Janet recalls looking for a support network out of an understandable sense of ‘desperation’ after Steven’s diagnosis.

She came across a phone number for MDI and rang it – again and again. ‘I didn’t know until later that it was Judy Windle’s 30 MUSCULAR DYSTROPHY IRELAND

Horizon Project participants pictured left to right in the front row: John Conneely, Gareth O’Kelly, Anthony O’Dea, Liann O’Halloran, John Carroll, Edward Caulfield, Paul Butler, Shane Ryan, Anne Wilkins. Back row: Ethna Haverty (course tutor), an MDI support worker, and Niamh Fawl (PR, Horizon Project).

In April 1992, a particularly exciting project was launched for members interested in developing media and journalism skills. The Horizon Project was jointly funded by MDI and the European Social Fund and linked participants with expert tuition in communications and writing at home and in the classroom. The participants were Paul Butler, John Conneely, Gareth O’Kelly, Anthony O’Dea, Anne Wilkins, Kevin Condron, Sean Walsh, Liann O’Halloran, Bobby Curran, John Carroll, Edward Caulfield, Shane Ryan and Finbarr O’Riordan.

Tuition was led by Ethna Haverty and Niamh Fawl and one of the aims was to establish a Communications Co-Operative to enable participants to provide services in journalism and media communications.

For six weeks we were living in an apartment together; there should have been a television documentary made about it.’

Paul Butler from Lehenaghmore, Co Cork – and now residing in Blackrock, Cork with his wife Frances - remembers the experience as a magical journey which broadened horizons.

‘Many of the participants had never been away from home or family before and certainly not in another city,’ he remarks.

‘I had just finished school, so it was a very exciting time for many of us. In addition to the monthly journalism workshops held in Dublin, participants were given personal computers to work on their studies at home. These were interlinked via dialup modem on a communications network called EIRTRADE (before the internet or email went mainstream in Ireland). All the participants on the project could send each other notes, brainstorm or submit work to the journalism instructor Niamh Fawl in the MDI office at Carmichael House.’

Some of the cast of “Children of Lir” at the City Arts Centre, Dublin. (l-r) Shane Ryan, Paul Butler, Hubert McCormack, Edward Caufield, John Conneely, John Carroll and Ann Wilkins (front).

Below: promotional photograph for The Children of Lir.

During the course of the project, Paul also collaborated with fellow participants Shane Ryan and John Conneely to write a play entitled ‘Like Father, Like Son’ - the story of two estranged brothers who are forced together in order to care for their father who is getting weaker due to muscular dystrophy.

The script came second when entered into the Young Playwrights of Ireland Awards 1994, where it was ‘highly commended’. Paul also acquired experience as a researcher on the RTÉ television programmes Fair City and Dempsey’s Den as part of the project.

He says the participants’ production of Michael Scott’s The Children of Lir at the City Arts Centre Dublin in May 1993 was a particularly special highlight. ‘Everything – the sets and costumes – were built by ourselves,’ says Paul. ‘It was brilliant.

MUSCULAR DYSTROPHY IRELAND 31

Writing in the autumn/winter edition of MDI Update, participant Anthony O’Dea caught the excitement and tension as the group prepared for and performed The Children of Lir. We arrived early on opening night, changed into our costumes, then went for make-up. There was an air of excitement, but also a certain nervousness, I think we all just wanted to get on with it.

The performance that opening night was a little edgy and fast, but as the week progressed, we became more relaxed and our acting and timing improved vastly. I think the performance on our last night was the best, in front of an audience of family and friends...When the idea of the play was first discussed, I must admit I had grave misgivings about taking part but I will always remember the sense of achievement and satisfaction which I felt at the end. The rapturous applause and ovations were also spine-tingling sensations.

The production had a big impact on Gordana Rajkov, who was enormously enthused to see a performance organised and produced by people with disabilities and held in a city centre theatre. ‘In this great theatre performance of The Children of Lir – an old Irish legend – some of the participants had the most serious Duchenne muscular dystrophy so they did not live much longer after that. But it was amazing to see how happy they were to do all of these things...and the ordinary citizens could come and see this performance. It was a really great shift from the situation and perception about people with disabilities that was there years before. As I understood, a lot of people with muscular dystrophy had lived in the institutions from early childhood and MDI put a lot of effort into supporting active and independent living and to get people included in the society. It was a new shift at that time; today it is more normal. It was almost 20 years ago and attitudes were completely different.’ The stunning production is now available to view on video-sharing website YouTube.

Another promotional photograph for The Children of Lir.

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Successful completion of the Horizon project resulted in a European qualification in journalism. Looking back, Paul Butler describes the project as having been ‘groundbreaking’ and is deeply saddened that many of his fellow participants have since passed away. Soon into the project, Paul also took it upon himself to contact 106FM Cork Hospital Radio where he received further training and became pivotally involved in its Sunday Beat show, which he hosted for some time.

Pictured on a visit to FM104’s studios in Dublin are Paul Butler (front), Niamh Fawl, Jonathan Philbin Bowman, Terry Dineen and an FM104 representative.

Indeed, during most of the 1990s Paul worked with 106FM, presenting and producing children’s broadcasting and he gigged as a nightclub/mobile DJ. Paul was also an editor of MDI’s magazine when it was being operated from the Cork office and was pivotal in producing a professional publication alongside the likes of John O’Connell, Anne and Eileen Wilkins, Anthony O’Dea, Sheila Curran, Peter Towe, Pat Crowley, Claudagh Caulfield, Finbarr O’Riordan, Philip Barry, Maria Lucas and Clare Louise Creedon among others.

Paul won a Gulbenkian Gold Award in 1996 – as did fellow MDI members Steven Fitzpatrick (Silver Award) and Gary Corrigan (Bronze Award) in the same year – for all his activities. Later he pursued further training in web and graphic design. It is also important to note the impact MDI had on Paul’s love life. He met his now wife Frances Finucane, a disability equality trainer, when she was working in the same

building as the MDI Cork Office, with the Cork Centre for Independent Living. Their mutual interest in the ethos of independent living led them to travel across Europe together, visiting centres and promoting the empowerment and social model at the core of independent living. They spent several months in Germany, amassing research and gaining experience from well established groups before moving on to Belgium in 1999. It was in Brussels that Paul and Frances got engaged and they were happily married in the summer of 2000.

MDI Update also kept readers informed about the early promise of a singer-songwriter called Fergus O’Farrell and his band Interference. The outfit has since gone on to great things and featured in the 2006 Oscar-winning film ‘Once’, in which they played their song ‘Gold’. Fergus has also collaborated with fellow artists such as Gavin Friday, Glen Hansard, Maria Doyle Kennedy, Nina Hynes and Mundy.

MDI followed and promoted Fergus’s career from the very beginning and here is a snippet of an interview with the musician published in MDI Update in autumn/winter 1993.

In the piece, Fergus talks about his love of music and approach to having muscular dystrophy: Well primarily I got into music at school because I didn’t play sports and I’ve stuck with it ever since. With my Leaving Cert under my belt I headed to Dublin to start a rock band. I was green but keen, and it’s taken the best part of five years’ hard graft to release our first EP single. It’s been a long and ongoing apprenticeship, but the experience and contacts we have gathered mean we are able to record, mix and produce our own records. We also design our own artwork and handle our own public relations.

So, if the record sells, it will be the first step to an independent income.

In terms of muscular dystrophy, it has made things awkward but certainly interesting. Obviously access and the usual problems associated with the wheelchair exist, but the house and studio have been completely adapted for independent living. The transition from walking to sitting was very difficult in terms of performing live, but my electric wheelchair has given me great confidence through independence. I don’t like being pushed around! And the great thing, I think, about the arts is it’s primarily expressive and therefore completely adaptable to one’s own ability – if you can’t get over an obstacle, go around it.

With the advancement in computer technology and ‘mouse’ systems, all sorts of occupations are now Musician Fergus O’Farrell. open from accounting to music composition, graphic design to the sciences (to list just a few). These are now viable career opportunities, providing you can get over the initial hurdles. That’s what I’m trying to do and Interference’s debut release ‘Looking for Someone’ will be another firm footstep on the road to the rest of my life.

The re-titled MDI Magazine followed up with Fergus in an interview in summer 1996. Paul Butler was the man posing the questions, one of which queried Fergus on whether having muscular dystrophy impacted on his writing.

Paul: Being a talented songwriter and musician, would you say that living with a disability such as muscular dystrophy has influenced your writing in any way?

Fergus: I would say so because I tend to write quite serious songs and even if it was a love song there would be other stuff going on in between the lines. On the other hand then, because you’re in a wheelchair you spend a lot more time at home on your own - well I live alone you see - than most ordinary people, which actually works out quite good because it means you’ve got a lot more time to concentrate on what you’re doing as well...it sounds a bit trite, that thing about God never closed a door but opened a row of cottages or whatever, well for what you lose, particularly if you’re using your mind a lot and music is great that way, it kind of expands you a little bit...

One of the standout moments of the 1990s, undoubtedly, was when 50 members of MDI visited Áras an Uachtaráin to meet President Mary Robinson, MDI Patron, on 24 January 1994.

Young Gary Corrigan recounted events in MDI Update’s spring 1994 edition: As we made our way up the ramp provided for us – the tension began to mount. The long passage with all the busts of Presidents MUSCULAR DYSTROPHY IRELAND 33

had a certain aura about it. When I saw the room full of familiar faces I started to relax. We waited for a few anxious minutes before the big moment arrived. We were all a little speechless at first and then we settled down. Mrs Robinson moved in an anti-clockwise direction around the room – meeting everybody individually.

When she came to me I was lost for words and it was up to my mother to do the talking...Mrs Robinson thanked all those who worked for the association, particularly those who worked with the youth. She assured us that she follows all our developments very closely and that she was honoured when she was asked to become our Patron. My visit to and meeting with our President was not as nerve-racking as I thought it would be. Indeed President Robinson’s natural ability to talk on any subject proves that she is a worthy representative of our country, at home and abroad.

MDI’s youth camps also grew in popularity with Gary Corrigan – again – proving a great reporter in his description of the get-together in Spiddal, Co Galway in 1994: This year’s MDI Youth Camp took place in Spiddal, Co Galway.

Eighteen enthusiastic members travelled on two wheelchair accessible buses. We took a pit stop in Ballinasloe on the way. The more ‘experienced crowd’ bedded down in a bungalow while the ‘novices’ stayed in a youth hostel. We were well fed by Catherine Hickey and Siobhan Windle. During our stay in Galway, we made a day trip to the Burren, the Cliffs of Moher and we enjoyed a scenic drive around Connemara. In Galway we took a trip to the cinema and had a splash in the newly adapted swimming pool in the Salthill Leisure Centre. All of us who were on the Youth Camp would like to thank all the MDI staff and volunteers for making the trip possible. As usual some new and lasting friendships were made and we are looking forward to next year.

Pictured at Áras an Uachtaráin (left to right) are Jimmy Murray, Gary Corrigan and Deirdre Dooley.

34 MUSCULAR DYSTROPHY IRELAND

It is no surprise that Gary Corrigan was such an able reporter of events.

According to his mum, Anne, he had the ability to be involved whilst also being an impartial observer.

The family first got

involved in MDI in the late 1980s. Gary had been diagnosed with muscular dystrophy at the age of five, and with the onset of symptoms three years later Anne and her husband Peter looked for a wider network of support.

Gary Corrigan pictured with Catherine Hickey.

There is no doubt that MDI provided that – in fact, it became ‘a second family’ to the Corrigans and today Anne would have ‘no hesitation’ in picking up the phone to at least two dozen people who she met through MDI, even if they hadn’t spoken in years. ‘The connection would be instant,’ she says.

Anne was Chairperson of the Dublin Branch for over ten years, largely during the 1990s. ‘There was a lot of support,’ she remembers, ‘everything we did was generally well supported.

The more difficulties you have to achieve something, that brings people together... Everyone was in the same boat, everyone knew how everyone felt.’ Taking on a role on any committee is always a serious commitment, but Anne was happy to contribute to an organisation that gave so much in return: ‘You get so much out of it yourself that you’re happy to give something back,’ she explains of that time.

Gary sadly passed away in 1999. During his life he was very active in MDI and especially loved the summer camps, where he made so many friends. In recognition of the connection between the family and MDI, Anne stayed involved for a number of years after Gary’s death while his sister Laura helped out during youth camps. ‘I’d encourage anybody to be involved,’ underlines Anne, ‘take from it what you want and there are only positive things to be taken from it...you can’t put a price on it. I have nothing but good memories of MDI.’ The year 1994 also saw an exchange between people with muscular dystrophy in Ireland and Spain. Shane Ryan, writing about the Spanish trip, revealed: The food and drink in Spain was really good, and it didn’t take me long to order a pint in Spanish! When we met up with the

Spanish muscular dystrophy association the language barrier made things difficult at first. After a day or two we worked our way around it, they knew a small bit of English and I picked up a few Spanish phrases.

For Spanish woman Olga Lorenzo, the connection between the two associations in Ireland and Spain led to a collaboration with MDI throughout 1994. During this time, she amassed experiences and memories which she treasures to this day.

‘In Barcelona I was involved with MD Spain as a volunteer and that gave me the opportunity of joining MDI and helping them in a very special project,’ remembers Olga today. ‘At that time, Michael and Thomas Keegan, who both had Duchenne muscular dystrophy, decided to change their lives. They asked CIL [Centre for Independent Living] for help because they wanted to take control of their lives and live independently - only that they did not know how. The Keegan brothers had spent most of their lives in a hospital for mental disorders. They had not developed many social skills and making decisions was very difficult for them because they never had the opportunity of doing it. Nevertheless, they had the courage to make a phone call and ask for help. With that action they started taking control of their lives, but they needed a lot of support in practical and in psychological aspects. At this point my role was assisting them in their efforts, facilitating the process of being independent, helping them to deal with situations which are simple for most of us but were new and therefore difficult for them.

Examples were shopping in the grocery store, making a budget, deciding what to have for dinner, asking for a beer in the pub, etc.’

was a fantastic experience for all of them, but especially important for the Spanish group,’ says Olga. ‘They could share experiences with the Irish members of MDI and above all, they realised the importance of your own attitude to get what you want. So they came back to Barcelona stronger and encouraged.’

Most of all, Olga remembers the people who she met. These included Judy Windle and her daughter Siobhan (‘my warm Irish family, truly dedicated to helping people’); Catherine Hickey (‘the sweetest and toughest negotiator I’ve ever met’); Michael and Thomas Keegan (‘innocence and zeal of learning and living’); as well as Florence Dougall, Gordana Rajkov, Mairéad Manton, Martin Naughton, Hubert McCormack, Joe T Mooney and ‘the sweet Ursula Hagerty’, to name but a few.

Indeed, Olga says her experiences working with MDI helped her to overcome a difficult health situation in her own recent history, ‘remembering that life is too precious to waste complaining about how difficult it is’.

Further developments at MDI during 1994 included the establishment of a research committee and a trust fund committee. ‘Some funding from the branches went to the research committee and some funding from the branches went to the trust fund committee,’ notes Catherine, ‘so general purpose funding had to be found from other sources.’

MDI’s first bus, parked outside its first permanent office at the Carmichael Centre, North Brunswick Street, Dublin 7.

Olga Lorenzo – centre of picture - pictured with Hubert McCormack (left foreground, with hat and long hair!), Florence Dougall (left), Catherine Hickey and Bernadette Kennedy (right).

Olga also had the opportunity of working with MDI to organise the summer camp exchange between Irish and Spanish people with muscular dystrophy which took place in 1994 and 1995. ‘It

Fundraising on behalf of MDI was pivotal. In 1994, the Peter Allis Golf Classic at the K Club raised enough funds to purchase nine new wheelchairs, and a donation of some IR£20,000 from UCD Commerce students combined with IR£8,000 from the People in Need Trust permitted MDI to buy its first ever wheelchair accessible bus. The UCD Commerce students also held a Christmas party for young members in 1994.

MUSCULAR DYSTROPHY IRELAND 35

enabled me to get assistance for going to the toilet, picking things up, organising papers etc. To make sure nothing could go wrong I had a backup computer and printer. In the end I obtained more than enough points for my chosen course.

Joe Mooney (left) and Michael Keegan pictured in 1994 holding a cheque for over IR£43,000 raised by UCD Commerce students. The money was used to purchase MDI’s first bus.

Going to ordinary local, national and community schools had enabled me to make friends from my own area, who I still see regularly. I had the same expectation and ambition to go to college as my friends, since many third-level colleges are wheelchair accessible. Whenever possible I would encourage others with Duchenne to attend ordinary schools. It isn’t easy-going, but now that I’m in college, I find that the combined efforts of myself, my friends and my schools have really paid off.

The year saw the launch of a new Youth Group which organised recreational and social activities, while there were also amazing individual stories of achievement against the odds.

This was reflected in a most illuminating article by Conor O’Reilly in MDI Update in spring 1994: I am eighteen years old and I have Duchenne muscular dystrophy.

I use an electric wheelchair and need assistance for all activities.

Having completed fourteen years at my local primary and secondary schools, I am now studying Applied Computational Linguistics at Dublin City University after doing my Leaving Cert in June 1993. The course is a combination of German, Computer Applications and Linguistics to enable computers to translate.

In fifth year I began studying seven subjects for the Leaving Cert.

At this stage I had learned to type in school and had begun to do English essays and other school work using a word-processor. I decided then that the best way to do my Leaving Cert would be to use a computer. However, a computer was only suitable for four of my subjects: English, Irish, German and Geography. Using a computer for Maths, Physics and Applied Maths was too difficult due to calculations, graphs etc, so I managed to write these three exam scripts. My school was extremely helpful in arranging with the Department of Education for me to use a computer for the exams since this was the first time anybody did a full Leaving Cert on computer. All the teachers I had while at school were really supportive, and gave me any assistance required.

In the exams themselves I used a computer in a separate room from the other exam centres in the school. I had an individual supervisor and an assistant/attendant in the room along with me. This 36 MUSCULAR DYSTROPHY IRELAND

Conor O’Reilly pictured with Maeve Binchy.

Conor and his younger brother Killian, from Sutton, Co Dublin, had been diagnosed with Duchenne muscular dystrophy in spring 1982 at the respective ages of six and two. Their parents, Seamus and Joan, thereafter began to attend MDI meetings having already known about the organisation due to the fact that a nephew of Joan’s had had the condition. As Joan recalls, the first meeting they attended was at the Ormond Hotel in Dublin in autumn 1982 and almost immediately, a network of support began to form for the family. ‘We went along to this meeting – there was probably a speaker – and somebody I now know for a long time, who was a social worker in Baldoyle Hospital, made herself known to us,’ remembers Joan.

The opportunity to talk with other parents was invaluable. ‘It definitely was,’ says Joan. ‘We met people such as Peter and Tríona O’Brien and they had two sons as well [with Duchenne].’

It was a ‘revelation’ that such similarly difficult and uncommon circumstances were also being experienced by other families, and the O’Reillys felt much less alone in this respect.

In time, Conor and Killian began attending the organisation’s Christmas parties and going on trips in Ireland and abroad.

Joan notes how the latter served a valuable double purpose, offering respite for the families and fun for the kids. ‘As Conor got older, he went on several European holidays such as to Barcelona and Holland. Another time he went to Vienna as an MDI representative at a EAMDA meeting. Killian went on holiday to Denmark at one stage.’

says Joan. ‘He got an A in English. He was good at maths and physics...he was a good all-rounder.’

As suggested in Conor’s article, the O’Reilly family was clear that both Conor and Killian would attend mainstream schools – an accepted concept nowadays but one which came from leftfield at the time. Conor was intellectually gifted while Killian was a steady performer, and both progressed well through their schooling despite very significant obstacles.

Conor’s course at DCU was four years long and included a year abroad at the University of Bielefeld. Due to his circumstances, Conor was unable to move overseas for an entire academic year but it was arranged that he would spend one term in Germany. The college put assistance in place and he stayed with the Irish-German Hayes family in a converted farmhouse just outside Bielefeld.

During primary school, the O’Reillys organised for home help to assist the two boys during toilet breaks but ‘regularly I’d get a call to say she couldn’t come’, remembers Joan. It meant she was always ‘on call’ to assist at any given time.

‘It was the greatest experience that he ever had,’ says Joan. ‘All the people he met were fantastic.’ Joan says her husband Seamus, who accompanied Conor to Germany to help him settle in, often tells the story of how Conor immediately began to speak German upon his arrival. He was so intent on getting the most out of his time there.

The boys went on to attend Pobalscoil Neasáin in Baldoyle for their second-level schooling and the family continued to do their utmost to make things work. In essence, they were paving the way towards the facilitation of mainstream schooling for people with disabilities. ‘My daughter used to take Conor to the toilet during lunchtime and his friends helped him with his food. When Killian went there, my daughter was at college and one of Conor’s friends used to take him to the loo. The school applied for assistance but nothing was forthcoming.’

At this point MDI stepped in and ‘came to our help in a very substantial way’, recalls Joan. Indeed the organisation arranged for Killian to have assistance from morning until lunchtime during his first term in 1992. ‘That was the greatest help,’ says Joan. The Department of Education eventually relented on its stated embargo and ‘they did sanction a part time person. From then on, help was available.’

While Killian’s education continued at Pobalscoil Neasáin, Conor was studying Applied Computational Linguistics at Dublin City University. He had attained a stellar Leaving Certificate of A and B grades. ‘He was very good at languages,’

Conor flourished at university and immersed himself in his studies. ‘He enjoyed every minute of DCU,’ says Joan. ‘He had a PA [personal assistant] at that stage – a guy who never missed a day and, really, the people who were assisting Conor and Killian never let them down.’

‘He spoke German from the moment he entered the liaison office at the college, he was a determined kind of guy,’ says Joan. Indeed, this determination continued to be reflected in his academic performance. Conor attained very high results following completion of his third year and he headed into his fourth year well on his way to an outstanding degree grade.

‘He went back for his final year,’ says Joan, ‘and, unfortunately, he died.’

The day that Conor died in January 1997, he had gone to college as usual and suddenly passed away that night. His degree was awarded posthumously in a fully merited acknowledgement by college authorities of his impeccable academic record.

Seamus and Joan received the degree parchment on Conor’s behalf. ‘It was very hard to go and receive it but very good for us as well,’ recalls Joan. ‘They [college authorities] came over and spoke to us – they said it wasn’t a piece of paper and was based on his work.’ Joan also learnt from the college that Conor’s achievements had changed some attitudes with regard to the potential of students with disabilities.

MUSCULAR DYSTROPHY IRELAND 37

Killian would also attend DCU following the completion of his Leaving Certificate in 1998. He studied for a degree in computer applications. While Killian didn’t have the physical strength of Conor or the same level of academic brilliance, he was a good student who surmounted very difficult circumstances. ‘Killian was doing fine at DCU but unfortunately he only got one term – he died in January 1999,’ says Joan. ‘He enjoyed his time there. His PA was a great fellow as well, a very attentive guy. They were really lucky with the PAs that they had.

They had a charmed period in DCU really. I was bringing them back and forward to college...Life was pretty hectic. We wanted them to reach their potential and they were happy guys. We did our best.’

MDI was a great support in good times and bad, suggests Joan.

‘I must mention Catherine Hickey,’ she says. ‘She was the most compassionate person. She always had time for people and we were blessed with her involvement.’ The family support worker, Deirdre Dooley, was also a wonderfully supportive presence, notes Joan.

All the kids got a chance to milk the goat, hold the chickens, pet the rabbits, view the peacocks and go in with the pigs (not too many takers for that one)...

Amidst the fun, the serious work involved in running MDI was ongoing. As outlined in Chairperson Judy Windle’s report on 1996, the key areas of focus at the time were the family support service, respite care service, holidays/exchange programme and youth programme. Judy noted that the respite care service was being used by thirty-five families and individuals on an on-going basis and it was difficult to keep the service within budget such was the demand.

Undoubtedly, the standout year of the 1990s for MDI was 1997. This was the year when MDI celebrated its silver jubilee and two other special moments made it one to remember.

MDI continued to make headway during the mid-1990s: an organisational evaluation was commissioned and a Fas community employment scheme was established in Galway with the CIL, providing personal assistance as a means to independent living.

By spring 1996, MDI also had offices in Cork and Galway and the organisation was expanding its services across the board. Initiatives such as the Cork Office Open Day in March 1996 contributed to widening national awareness of muscular dystrophy. ‘Information was fed into the punters’ heads through PC slide shows to the sound of Riverdance...,’ wrote the witty Shane Ryan, one of the organisers. ‘At the end of the day we were well worn but we do believe our escapade was a resounding success with our visitors walking out of here a little less bewildered and a little more educated – maybe.’

The fifth annual youth camp for young members was held at the Lucan Youth Centre in July 1996. Thirty-two young members aged from 8 to 14 years came together for a week filled with sunshine, fun and memorable outings such as to Morell Farm and the Butterfly Exhibition in Straffan, Co Kildare. Catherine Hickey reported on the farm visit in the winter 1996 edition of MDI Magazine: 38 MUSCULAR DYSTROPHY IRELAND

A EAMDA exchange visit to Áras an Uachtaráin in 1997. Pictured (left to right) are Seán Mac Réamoinn, Judy Windle, Joe Mooney and EAMDA delegates from across Europe.

The first of these unique occasions happened over ten days in late August. Some 67 young people and their assistants from 21 EAMDA countries gathered at UCD for an MDI-led EAMDA youth exchange under the theme ‘Towards Empowerment and Independence’. The activities included seminars on independent living, computer workshops and cultural outings. The highlight was a visit to Áras an Uachtaráin to meet President Mary Robinson in what was one of her last days in office.

The second memorable occasion was the presentation of a national People of the Year award to the then Chairperson of MDI, Judy Windle. The event took place at the Burlington Hotel in Dublin and represented the third occasion on which someone associated with MDI had been accorded this

exceptional honour, with Martin Naughton and the late Denis O’Brien being previous winners in 1995 and 1979 respectively.

Although Judy is keen to emphasise that the award in November 1997 was an acknowledgement of all those who’d contributed to MDI over the years, it did constitute a particular appreciation of her own steadfast work. As Catherine Hickey wrote afterwards: Judy has been the backbone of MDI for the last decade in particular and can be proud of the supports now in place for people with muscular dystrophy and their families - for example, home-based respite care, counselling, holidays, and exchange projects. She was also instrumental in founding the Inherited Disorders Organisation, an organisation which has campaigned for the introduction of Genetic Counselling Services in Ireland and monitored developments in these services since they commenced in 1995.

A founder member of the Community Services Project and what is now known as the Carmichael Centre for Voluntary Groups, one of her attributes has been her ability to network with other organisations and to get them to ‘buy into’ the concept of sharing resources and supporting each other.

Branch activities were ongoing during the silver jubilee and included a sponsored cycle to Tralee from Gormonston by Corporal Gerry Martin and Private Paul Gaughran which was organised by Declan Dooley of the Dundalk Branch, a colleague of the two soldiers (the cycle raised IR£2,000).

Another prominent fundraiser was a golf outing at Blackbush Gold Club, Dunshaughlin, Co Meath organised by the Irish Fire and Security Association which resulted in a donation of IR£11,800 to MDI. This money went towards the purchase of essential equipment.

Moreover, on Christmas morning 1997, staff at University College Hospital Galway raised some IR£3,000 for MDI through a sponsored swim. The donation was gratefully received on behalf of the organisation by the Mountbellew Branch. Afterwards, branch secretary Kathleen Healy wrote that it had given the organisation’s volunteers a boost: Fundraising events like the swim remind all of us working in the association that while the public may at times seem pre-occupied with their day-to-day lives they are in fact more than willing to be generous and supportive.

The year was also noteworthy for the exchange with the muscular dystrophy association in Denmark and a Fashion Show at Blanchardstown Shopping Centre organised by fifth year students at Coolmine Community School in support of MDI. And, as always, the annual Lucan Youth Camp proved a hit. As Paul Twomey and Caroline Farquharson wrote in the winter 1997 edition of MDI Magazine:

Judy Windle (second from right in front row) pictured with fellow People of the Year Award winners at the presentation ceremony in the Burlington Hotel, Dublin, in 1997.

These events added to the celebration of 25 years of MDI, with a family day including a four course meal in the Stand House Hotel, the Curragh, Co Kildare attended by over 200 members and a concert by American singer-songwriter Rich Wyman in Cork among the commemorative activities which also took place.

Members in Mountbellew, where it all began, also held a special dinner at St Anne’s Guest House in the town, where a presentation was made by branch Chairperson Oliver McHale to Matt and Florrie O’Connell.

Any illusions we may have had about getting a good night’s sleep were soon dissipated as some characters decided that a little thing like going to bed shouldn’t stop the fun. However, as the week wore on, the action packed days began to take their toll and soon everyone was sleeping peacefully a few minutes after lights out.

The days had been carefully planned by MDI’s upper echelon and it showed. Each morning soon after a hearty breakfast, we all piled into buses to begin the day’s adventure. We visited many local places of interest including a preserved steam-engine room at the steam museum in Straffan and Fry’s model railway in Malahide Castle which amazed everyone with its meticulous detail and beauty.

MUSCULAR DYSTROPHY IRELAND 39

Over the course of 1997 and 1998 a number of grants were also successfully attained. Examples included a grant of some £65,000 from the Eastern Health Board towards the purchase of equipment such as hi-lo beds, electric wheelchairs, mattresses, and a stairlift. The Combat Poverty Agency also granted £8,000 towards research into the impact of muscular dystrophy on the family, while the Southern Health Board granted £1,000 towards MDI’s work in the Cork/Kerry area.

In November 1998, Bank of Ireland selected MDI as one of nine charities to benefit from its Music Programmes, which involved evening recitals at the Arts Centre, Foster Place in Dublin. Professor Peter O’Brien presented ‘A Jazz Piano Odyssey’ which even MDI’s jazz-hating Hubert McCormack thoroughly enjoyed. The opportunity was also taken to sell MDI Christmas Cards at the event.

Day 2: I woke up at 07:40 and breakfast was at 08:00. Before we set sail today a practical drill was held where everyone had to be up on deck with their lifejackets on within 6 minutes. The crew who were to go aloft were shown how and where. With 13:00 approaching preparation to sail began in earnest. The gangway was pulled up and the buoys brought in. All hands were on deck as she sailed out of Puerto Rico on her way to La Palma. A wonderful lunch was served shortly after sailing.

At 15:00 I began my mess duty. This included preparation of meals and washing up the dishes for all the crew. Everyone had to do twenty-four hours of this duty which excused you from all other duties. That evening, the oncoming watch and ourselves were eating our dinner when one of the crew spotted whales in the distance. Jumping from our seats, we gazed at the whales which began to come closer to our ship. This was the first time that I saw whales spurting water and disappearing as suddenly as they appeared. I was very surprised to see this.

During that same year, one member of MDI had a pretty unique experience. Anne Wilkins, writing in the spring 1998 edition of MDI Magazine, described her time as a crew member on board the Lord Nelson ship, which was designed so that people with physical disabilities and able bodied people could sail together. Below is an extract from Anne’s article, entitled ‘Adventure on a Tall Ship’.

More good news came in 1999 when MDI purchased a new wheelchair accessible vehicle thanks to the Civil Service Charities Fund and the People in Need Trust, while some 21 members graduated in ECDL (European Computer Driving Licence) exams at a ceremony in Dublin’s Conrad Hotel in November of that year.

My adventure all began on 23rd of February this year, when I left our Irish wet weather behind and was greeted by warm sunshine.

When I arrived in Las Palmas I was met by the representative from the Lord Nelson. We got a taxi to the quayside where she [Lord Nelson] was berthed waiting for her crew to sail her away on the ocean waves.

MDI was also alive to the growth of ethnic diversity in Irish society towards the end of the 1990s. As Catherine Hickey noted in her service plan for 1999, MDI was working closely with ‘a Bosnian refugee family, families from different ethnic minorities and families from the Travelling community, all of whom have one or more members with muscular dystrophy’.

That night there was a briefing at 19.15 by the Captain and an introduction to the permanent crew including the most important member, the cook Martin!! George the Captain also informed us that we would sail the next day at 13.30 and the route would be from Gran Canaries to Las Palma to Tenerife to Gran Canaries.

On the wider front, the establishment of a Neuromuscular Clinic at Beaumont Hospital and the National Centre for Medical Genetics at Our Lady’s Hospital Crumlin, both in 1994, were important developments during the 1990s

On the quayside that night a traditional barbeque took place, where everyone was getting to know each other. Finally after my long day I aimed for my bunk and there I met my buddy Sue who was our leader and who told me our watch was responsible for the aft [rear section] starboard area of the ship. Having heard that, I bid goodnight to all.

40 MUSCULAR DYSTROPHY IRELAND

Reflecting on the decade, Catherine says that people affected by muscular dystrophy and their family members were always at the heart of the organisation. Catherine, a qualified barrister, is now Director of Funding and Development at FLAC (Free Legal Advice Centres) in Dublin, having departed MDI in 2000 for pastures new. As has been reflected in the memories of members, her legacy to the organisation is considerable.

POETRY/FICTION CORNER ‘VALLEY

OF POTENTIAL’

By Gareth O’Kelly

I often wonder where we stand, upon the banks of our river of friends where bridges are being slowly laid down, when we never thought of crossing them. and I met you at our cliff of shouting distance waiting to receive from you an echo because you had built yourself defences, that stopped you ever looking down below.

And as our cliffs drifted due to erosion, so too did we drift apart because it was caused by an explosion making the distance seem so very far.

-published in MDI Update, autumn 1992

‘CONTRASTS’

By Conor O’Reilly The hill rises in the distance, The trees black against the sky, The rest of the land is flat, Seeming empty of people.

The view moves west, The roads start to fill, The buildings come close, The people move apart.

‘I AM A REAL WHEEL WARRIOR’

By Edward Caulfield 1. If you see me coming down the street you might stop and stare, you might say look at him, he’s in a chair and I say to you I don’t care I am what I am and proud of that.

2. I am a real wheel warrior that’s what I am, I am a real wheel warrior that’s what I am.

3. I have what I have and I am proud of that so I say to you if you’re feeling blue turn on rock music that’s what you do.

4. Since I was born I’ve been close to death but so full of life, I’m not going to give up I am going to fight.

5. I am a real wheel warrior that’s what I am, I am a real wheel warrior that’s what I am.

6. In a wheelchair shouldn’t cause you rejections who are they to criticise our intentions.

7. Ride wheel warrior ride to the back door of heaven to the other side I want to know the danger of a kiss at midnight ride wheel warrior ride. Yes I learned my lesson I got a story to tell so I make my confession in a Swedish motel ride wheel warrior ride, I could try my best side but I ain’t got the money and I ain’t got the time ride wheel warrior ride.

8. I don’t like people out there that tell me what to wear and tell me how long to have my hair and I say to the people out there I don’t really care.

9. I am a real wheel warrior that’s what I am I am a real wheel warrior that’s what I am.

10. On four wheels I guess that’s how I have to roam around the land, don’t try to see the world in different ways because I am a real wheel warrior that’s what I am.

11. Lookin’ back when I was a kid I never really went to school I didn’t like it silly fool people say, it’s because I’m in a wheelchair but I say to you you don’t know and you don’t care because I am a real wheel warrior that’s what I am.

The End

As the view reaches the coast, The land disappears, Flooded by concrete, The change is complete.

-published in MDI Update, autumn 1992

-published in MDI Update, autumn 1992

MUSCULAR DYSTROPHY IRELAND 41

‘MOCKBA’

‘MY SCHOOL DAYS’

By Bob Curran

By Sean Walsh

Moscow was to me, a foreign and strange city,

Each day I sit and dream about The days I went to school I thought they were the hardest days My God I was a fool

in the heart of Russia, the capital of the former USSR. The vast city of Moscow, with its many statues and monuments dedicated to its many heroes and Red Square where the body of Lenin lay.

The tall and bleak buildings, were put firmly in the background, when I saw the splendid Cathedrals and the beauty of Red Square.

The Moscovites going about their daily business, amazed by electric wheelchairs, and taxi drivers, who drove fast and furious.

To the late night parties, where the champagne flowed, and the many sing songs, enjoyed by all.

Alas, all good things come to an end, and we headed home with Aerflop, to Andrew, Igor and Innessia, a sincere thanks for all your help.

-published in MDI Update, autumn 1992

When I close my eyes and think about Those days I went to school I wish they were all here again I wish but that can’t come true.

When I was young and went to school I wished my life away I hoped that I would grow up fast And try to get away.

There were some good and bad days I thought that they were all bad But now when I look back again My God that makes me sad.

I used to look towards holidays So there would be no school I’d look around the town for work But find there’s nothing doing.

The jobs that are available Were dirty and hard to do I gladly took on all of them Because the shillings were few.

I had to do this dirty work Because money was very scarce I worked for very long hours And for seven days a week.

The days were long and very hot For kids as young as me I had to do it for some cash Or there would be no tea.

I’d work one week to buy a shirt The next to buy some boots The next to buy the socks to match And then to buy the food.

It was hard but it was honest It kept me on my toes But nowadays it’s just not there And the kids are on the dole.

-published in MDI Update, spring/summer 1993

42 MUSCULAR DYSTROPHY IRELAND

‘MY MOTHER’

‘WHITE BLACKNESS’

By Anne Wilkins

By Paul Butler

She brought me into this world, Watched me as I grew up, Taught me right from wrong And the morals of life,

They said that the silent stage was magical, It is, for we were together in worlds Of clashing myth, throughout the friendships Gathered within it.

Nursed me in my sick bed, She waited patiently for my first word, And encouraged me to take my first step.

The lights of joy, the sounds of freedom, Backstage whispers into mirrored vision, Characters calling words of expression, Into the thought of caring.

Then the time came when I had to learn my ABC, And how to write and add 2+2.

These were the first of my school years She took me by the hand and led me on my way.

Lost in times before this day was now, We found the life of Tuatha Dé Danann, Leaving our lives behind while Taking the staged place

Now looking back, I thank my Mother For her support and encouragement She gave me when I needed it most, And for being there when I needed

Scenes we set for to bring open views, Now open hearts to the world in which we know the Children of Lir, There you will find us, Waiting in anticipation for the opening call.

An ear to listen, a shoulder to cry on, And most of all for her understanding.

Thank you Mother, you always hold a special place in my life.

-published in MDI Update, autumn/winter 1993

‘MYSTERIOUS FELLA’

This poem is dedicated to my Mother.

A Short Story by Agnes Smith, Dundalk

-published in MDI Update, autumn/winter 1993

It all started back on the 9th of March 1999. A new fella entered my life and home. For the first couple of weeks we got on famously together, we had a few things in common, we both had the same taste in music and liked playing cards together. Then I noticed a change in his attitude. He started to take over my life and my home. I would give him simple instructions to carry out and he would snap back at me “what is this?” Some days he would have me stressed out or panic stricken. I decided if this was going to work out I would have to at least try to get on with him, give him a few months trial or he would have to go. As time went on we began to build a better relationship and understanding of each other. He is still with me today and I’m delighted that I didn’t ask him to leave.

Have you guessed who it is??? Yes it is my friendly computer.

-published in MDI Magazine, Issue 13, 1999 MUSCULAR DYSTROPHY IRELAND 43

‘A POEM

TO UNDERSTAND’

By Bernard O’Donovan

‘REMEMBER ME’

If it happened to you and not to me, What would we do? Cry for you? no I say, as you I think not.

Still a life with all the feeling of being a person with some change. But still with my head above but yet under the clouds I dream as always I try to get on with all.

But I am only human not a ghost or spirit just me.

I am the shadow in your sunlight Don’t forget me!

Remember me as I am; Not for the tubes, and for the monitors, And for the alarms, And for the mucus rattling in my throat.

Remember me as I am; My mind is your mind.

I need to love and be loved, As you do.

It wasn’t my fault it happened to me, One of those things that happens To the best of us, And to the bravest of us, My dreams didn’t die when my body did, But sometimes I wonder Is courage in fantastic deeds?

Or here in this room, Watching reflections track their way Across the ceiling?

It would be easier if I felt peace, But let me be honest; Peace will never lie easily on these bones.

It is lonely here in this room, When I remember happier days.

I don’t want to be an object of piety, Or of social responsibility.

I want your humanity.

I want the rough and tumble of life, Like an otter in some wild stream.

I don’t want to be the shadow In your sunlight; To bring darkness to your days.

But if I am the shadow in your sunlight, Maybe some of your sunlight will come to me.

-published in MDI Magazine, winter 1996

‘WHY IS?’

by Gearoid O’Donnell Why is it?

Why is the sky blue?

Why is the sun yellow?

Do monkeys like living in the zoo?

Is a cloud a big marshmellow?

Why do cats purr?

Why do dogs bark?

What’s so great about fur?

Who’s afraid of the dark?

Why does a tree take So long to grow?

Why are caged birds not let free?

And why are snails so slow?

Why is it?

-published in MDI Magazine, winter 1997

44 MUSCULAR DYSTROPHY IRELAND

By Graham Pearson

[MDI Magazine, autumn 1999]

‘LA VIDA’

‘LIFE’

La vida es una gran escuela que esta liada por momentos Los buenos hay que aprovecharlos puede que algunos no surjan mas Los malos solo son pruebas que nos pone el destino Hay gente que por si mismo no lo pueden superar Hay que ayudarles al igual que nosotros nos gustaria que nos ayudaran.

De todo esto tiene la culpa la sociedad que se rige por el dinero y la codicia.

Cuando hacemos algo mal no debemos de frustrarnos - de los errores se aprende y se coje mucha experiencia y sabiduria.

Guiate por el corazon, Siempre por el corazon No por lo material.

Esto te ayudara a conseguir la meta que te propones Y recuerda al fin y al cabo solo estamos de paso.

Life is a great school that is connected by moments The good ones should be taken advantage of it may be that some will not occur again The bad ones are only trials that are put to us by destiny There are people who by themselves cannot overcome them We must help them just like we would like someone to help us.

Of all of this society is to blame with its tearing apart over money and greed.

When we do something wrong we should not get frustrated - we learn from our msitakes and gain much experience and wisdom.

Be guided by your heart, Always by your heart Not by the material.

This will help you obtain the goal you set for yourself And remember in the end we are all just passing through.

Participants in an Irish-Spanish exchange programme in 2003.

Pictured left to right are Siobhan Windle (MDI) with Mercedes, Gustavo Jose, Felix and Walter from the Federación Española de Enfermedades Neuromusculares- ASEM (Spanish muscular dystrophy association).

Group shot of participants in the Irish-Spanish exchange programme in 2003.

MUSCULAR DYSTROPHY IRELAND 45

2000S NEW ERA

46 MUSCULAR DYSTROPHY IRELAND

PRESENT

T

Joe was born in 1965 and raised in Carndonagh, Co Donegal.

He was diagnosed with muscular dystrophy as a boy, as were two of his six siblings who have sadly since passed on.

His bright, airy office at MDI’s Centre of Excellence in Chapelizod, Dublin – a state-of-the-art complex which opened in April 2011 – is neatly dotted with paperwork, filing cabinets and the usual office fare. What particularly captures the eye are the rows of memorial cards which are resting on the lefthand side wall ledge. The smiling faces on these memorials are those of MDI members who have passed away, including members of Joe’s family. One immediately senses the deep personal connection between the Chief Executive and the wider organisation.

Joe’s mother and late father were profoundly influential on their seven children and ensured they all of them lived an active life. ‘Way back then, ‘everyone’ had Duchenne muscular dystrophy, there was no other type of muscular dystrophy,’ says Joe, who has central nuclear myopathy. ‘Basically that would have meant that your lifespan would probably have been 16 to 17 years. That was the outlook but at the end of the day that didn’t stop anything that we did – we still kept going. My mother was very much of the opinion that it didn’t matter what was wrong with you, you did whatever everybody else did.’ Tin whistle class, the local chess club, the brass band – Joe did it all. He also attended the local school just like all the other local kids.

HE STORY of MDI from the 2000s to today is closely linked to that of its Chief Executive, Joe T Mooney, who has carefully guided the organisation to new heights since taking over in 2001.

Today, MDI’s network of support extends to almost 4,000 people including parents, carers, siblings and professionals in the health and education fields. As of March 2012, there were some 602 individuals with neuromuscular conditions registered as members, an increase of 93 people from 2009.

Joe T Mooney heads an organisation employing 28 staff and 18 respite workers nationwide and which offers national support services such as family support, information, respite and home support, transport and youth services (i.e. camps and youth clubs) and counselling services. All of these services are coordinated from MDI’s Centre of Excellence, which encompasses wheelchair accessible offices, meeting rooms, a board room and a four bedroomed ‘Home from Home’ apartment for short term respite breaks for members.

There are also regional offices, in Cork, Galway, Kells, Letterkenny and Tullamore, while family support is available throughout all of the HSE regions and Youth/Respite Workers are located in the east, south, west, midlands and north-east.

The organisation holds five holiday camps a year for different age groups of children and adults.

It is quite an operation. The manner in which MDI grew out of meetings in sitting rooms to its status today owes much to its dedicated volunteers through the years. Its current Chief Executive was one of them and his own story is very much intertwined with that of MDI. It is one which informs and inspires his ongoing work.

Joe Mooney, CEO, Muscular Dystrophy Ireland.

‘My mother would be a very determined person – so would my father have been. They were both well met. Nothing would beat them. My mother worked as a teacher and my father was a full time builder. I remember, growing up, it was like a well-oiled machine. My father would get me up; my mother would get my brother up and my granny would get my sister up. We all needed assistance getting dressed in the mornings, but if any one of those cogs broke, the whole thing would go haywire.

‘My father was a builder and might have been working an hour away...you had to go where the work was. He was trying to make a name as a big contractor and he was building for Fruit of the Loom at the time. He was the main contractor so he had to be MUSCULAR DYSTROPHY IRELAND 47

there for that type of work. But my parents managed and there was never any complaining. If you talk to my mother today, she’d say that she’d do it all over again. Everybody was happy enough and life was fairly good.’

Joe got involved in the Donegal Branch of MDI in the early 1980s. ‘I would have heard about MDI through Martin Naughton,’ recalls Joe. ‘I don’t know how we became friends – probably through my brother Seamus, God rest him. Seamus was very much involved in the independent living movement and he probably hooked up with Martin in some way through that. Martin was the first person to live independently with a disability in Ireland.’

Aged in his late teens at the time, Joe was one of the youngest at the Donegal Branch’s monthly meetings and he got the opportunity to go on some trips with MDI. Joe recalls one such excursion to Denmark when he was around 17 years of age and which changed his outlook forever. The Danish hosts organised a personal assistant for him, and this hugely impacted on Joe in terms of imagining what his adult life could be like.

‘I have to say that I did the most growing up in my life that I ever did in two weeks,’ he recalls. ‘Being there without mammy, daddy – for a lot of people with muscular dystrophy the main carers would have been mammy, daddy, maybe granny, granddad, that kind of setup. But I had my eyes opened over there because mammy and daddy were quite a bit away from where I was and I was there for two weeks.

‘I was able to do what I wanted, when I wanted. At home you had to go to bed whenever mammy and daddy were going to bed, so this freedom was unbelievable. I said “this is definitely how I want to live”. I came back to Ireland full of the joys of spring.’

Upon his return he spoke to his brother Seamus about the experience. ‘How do we do this?’ Joe asked him. It was a question which would find answers over time.

In the interim, Joe kept up his involvement in MDI and began to arrange youth camps in Co Donegal. One of the earliest was in 1987 when he organised for ten young people from Dublin to come up for the Carndonagh Festival. An anonymous writer captured the scene in the autumn 1987 edition of MD Update: 48 MUSCULAR DYSTROPHY IRELAND

Participants at one of MDI’s first youth camps in Donegal in 1987.

We stayed in a rather old primary school which looked dreary from the outside. But when we unloaded all our gear and went inside we were quite amazed at the warm reception we received. We all felt at ease the minute we stepped inside. Everything was well organised. Three classrooms were converted into bedrooms with up to four beds in each and then there was a kitchen which was the size of a classroom. During our stay we were treated like kings as all our meals were prepared for us and our washing up done by four charming young ladies, Anna Mooney, Joe T’s sister, Caroline Callaghan, Maggie Laverty and Carol O’Kane...The night life in Carndonagh was amazing. For the festival we went to the Arch Inn where we spent hours chatting to Joe T and his friends which was practically the whole population of Carndonagh. From the pub we would go to the local disco down the road where we all mingled with the crowd.

Joe says these youth events were very important to members: ‘Anybody we took away really, really enjoyed themselves. They’d be raving about it for weeks. Everyone had a great time.’

Before he moved to Dublin in the early 1990s to take up a role in the independent living sector, Joe trained in areas such as entrepreneurship, information technology and bookkeeping and attained a wide variety of experience working in different sectors in his native Co Donegal, including managing a mushroom farm for some years. The resourceful Carndonagh man also invented the ‘Mooney Buggy’ in 1986.

It was a battery powered lift that wheelchair users could operate to lift themselves out of and into the wheelchair (e.g. such as to move from the wheelchair onto a bed or into a car). In conjunction with the Institute of Industrial Research and Standards (now Enterprise Ireland) Joe launched a version of this device.

to be grateful rather than expectant when it came to services.

Joe had to encourage a shift in mindset.

It was a great achievement but the world of invention and engineering was not where Joe’s future lay. From a young age, people in the Donegal Branch of MDI had observed Joe’s people skills and this quality provided an ample clue concerning the road ahead. As Fergus Friel, who was heavily involved with the Donegal Branch for many years, remembers: ‘When Joe T came to local meetings you’d come away...well, Joe’s positivity was always what I took from it.

His can-do attitude rubbed off on other branch members. There was no can’t do, that’s the one thing I associate with Joe; it was what could be done rather than what couldn’t be done. The branch was very proud Fergus Friel. of Joe in that sense.’

The issues involved were multifaceted: some people with disabilities who had personal assistants (PAs) were more inclined to focus on the needs of their PA rather than their own. There were others who wanted to put on a show of power when interacting with their PAs, while some just over-relied on them.

It was around 1993, as Joe recalls, when he departed Co Donegal for Dublin to take up a role as community employment supervisor with the Dublin 7 Centre for Independent Living (CIL). ‘Initially I was supervisor of the scheme and one of the projects was Vantastic, it was a dial-aride transport system for people with disabilities. I was in that role for four years, then I moved to a job in the Independent Living and Community Services –it was a partnership between CIL in Dublin and the Rehab group. I started there as a national leader and coordinator and that role was to support people with disabilities to try to move to the independent living movement.’

In essence, Joe was helping others to tackle the question he had discussed with his brother Seamus: how do we do this? How do we ensure that people with disabilities have the opportunities they deserve? Joe had a keen sense of his own rights as a human being, but some people with disabilities had been conditioned

‘Why can’t you stay up till three in the morning if you wish to do that? Why do you have to go to bed at nine o’clock? My role was to try and change the attitudes of people with disabilities.’

‘I had to try to find a medium, a way to draw the balance as such,’ says Joe. ‘It was a tough enough number, I have to say. As I always say, with independent living comes a lot of responsibility. You’ll have no-one making up your mind for you – what you’re going to wear today and what you’re going to wear tomorrow, is there milk in the fridge and, if not, who is going to put it there. Mammy and daddy are not there anymore, you have to sort it out....independence means a lot of different things to different people.’

Joe continued in this role as treasurer on the board until his application for the vacant position to become director of MDI – a position he successfully attained in July 2001. Through the years, following his move to Dublin, Joe had remained heavily involved with MDI mainly as national treasurer of the organisation and he was confident that over time he could lead it to even greater heights.

A nice early boost for Joe and MDI was the donation by Control Aer of a Volkswagen Caravelle adapted for wheelchair use. The new van was based at MDI’s head office at the Carmichael Centre in Coleraine House and proved invaluable for transportation to youth clubs, appointments and holidays throughout the year.

It was a busy few months for MDI in the wake of Joe’s appointment, with the organisation’s AGM in September 2001, the re-launch of the MDI Youth Group in the Dublin region (with Steven Valentine very actively involved), a newly established Youth Group in the Southern region and the appointment of a new Youth Officer, Mary Rose Howell.

MUSCULAR DYSTROPHY IRELAND 49

By this stage in its development, MDI had secured good levels of State funding for respite and family care services in some but not all regions. It continued to rely heavily on fundraising efforts to carry out its wide ranging work – as it does today.

Back in the early 2000s, the main national fundraisers each year were the Dublin Ladies Mini Marathon and the sale of Christmas cards.

Upon taking over, one of Joe’s key missions was to increase public awareness of muscular dystrophy and the role of MDI. A central strategy to achieve this was launched in early 2002.

The new approach would involve a much more focused national awareness campaign centring around Valentine’s Day. Part of the plan was to sell a product linked with the celebration and MDI duly secured handmade chocolates from Lily O’Brien’s to sell during this period. This arrangement has formed the bedrock of the MDI national awareness week to the present day, a signifier of its success.

Ed and Simon Jameson pictured with cast members from RTE’s Fair City at the launch of the MDI awareness campaign in the Mansion House, Dublin, on 11 February 2002.

The remodelled national awareness week proved a huge success and secured a high profile launch by Tánaiste Mary Harney TD and the Lord Mayor of Dublin Michael Mulcahy on Monday, 11 February 2002 in the Mansion House, Dublin.

The concert also proved a joyous occasion and one which Hubert McCormack, in particular, will never forget. Hubert performed with Christy Moore on the night - the stuff of memories. Hubert, who is himself a singer songwriter, wrote afterwards:

Hubert McCormack pictured with Christy Moore prior to performing on stage together at MDI’s Awareness Day Concert in 2002.

In tandem with this new departure, MDI announced that a concert would be organised for Valentine’s Night at the Royal Dublin Hotel, O’Connell Street, Dublin. The line-up included the four part harmony group The Parson’s Nose and Friends, family outfit Blue Moon and a special guest appearance by the legendary Christy Moore, among others.

Hubert McCormack, Simon Keogh (Fair City cast member who played Floyd Phelan) and Joe Mooney, at the launch of the MDI awareness campaign in the Mansion House, Dublin, on 11 February 2002.

50 MUSCULAR DYSTROPHY IRELAND

To wrap up his performance Christy invited myself on stage to sing a duet with him, ‘The Voyage’. Words cannot express what a privilege it was for me to sing with a legend and such was it received, we ended up doing a second song, ‘Ride On’. It was an experience I will treasure.

Launch of the MDI awareness campaign at the Mansion House, Dublin, on 11 February 2002. Pictured left to right are Sam and Jimmy Murrary, Orlaith Rafter (Fair City cast) Hubert McCormack, Denise McCormack, (Fair City cast) and Joe Mooney.

Actors from RTÉ soap opera Fair City were particularly helpful in publicising the awareness week, a valued association which has continued over the years. According to the March 2002 edition of MDI News Update, approximately €25,000 had been raised through the sale of chocolates at that point and the annual campaign has since gone from strength to strength in all respects.

Meanwhile, some significant staff additions had been made during 2001. These included the appointment of Information Officer Karen Pickering, who is still working diligently with MDI over ten years on and has made huge efforts in informing members of new research developments and other requested information in an accessible way. Hazel Bridcut also took up the position of book-keeper with the organisation having been a committed volunteer in this and other areas of MDI’s work over the years.

Hazel first got involved in MDI after the diagnosis of her daughter Elizabeth. Sometimes female carriers of the muscular dystrophy gene have what are called ‘manifesting symptoms’ and this is what has affected Elizabeth. Indeed, Hazel says that in many ways her family’s situation differed from others involved in the organisation – for example Elizabeth got a ‘very quick diagnosis’ whereas some other families were ‘sent from Billy to Jack’ before they finally received a medical conclusion as to what was affecting their children.

Exciting activities continued around the branches. Before the year was out, the Donegal Branch was rightfully proud of Darren McDonagh who won a Child of Achievement Award from Share A Dream and got to go to EuroDisney with his family. RTÉ were so impressed with Darren that they sent the Nationwide team to his home to let the people of Ireland know how courageous Darren had been. As has often been the case, many branches made special efforts for members at Christmas time and the activities of the Midlands Branch particularly stood out. A trip to Santa’s Kingdom - which had its gateway in Co Kildare – caught the imagination of children and adults alike. Brendan McElligott of the Midlands Branch wrote in MDI News Update in January 2002: We boarded a shuttle which brought us to the cave where the Ice King and Queen lived and there we met the elf who was our guide to the kingdom. He brought us through to the workshop where the other elves were busy making all the toys that would be needed for Christmas.

Ursula Hagerty (left) and Judy Windle (right) pictured with fellow MDI members and friends at the launch of the MDI awareness campaign in 2002.

Respite trips also continued to be a very important part of MDI’s range of activities during 2002 and the organisation developed new types of regular outings, as exemplified by a football trip to Old Trafford in February to see Manchester MUSCULAR DYSTROPHY IRELAND 51

United play Nantes in the European Cup. Steven Valentine reported in MDI News Update:

The lyrics to ‘The Ketchup Song’ could not be located for the purposes of this book.

As the team came out there was a buzz around the stadium and the away supporters made themselves heard. They were just behind us. Nantes scored the opening goal, which was not appreciated by most of our group, but in no time United had equalised from a David Beckham free kick. In a superb game United ended up winning 5-1. We all left the stadium in good spirits.

Other developments around this period included the employment of two youth workers, one covering the eastern region and one in the southern area, and the restructuring of the family support service in order to ensure members would be visited more regularly if required. Plans were also afoot to assist Dr Orla Hardiman - a firm supporter of MDI through the years - in the establishment of a new specialist clinic at Beaumont Hospital for adults with neuromuscular conditions.

MDI members in sunny Madrid on an Irish-Spanish youth exchange programme in 2002.

An exchange with the Spanish muscular dystrophy association resulted in a trip to Madrid in autumn 2002. The exchange, which was supported by Léargas, saw eleven MDI members, four staff and five personal assistants spend an amazing ten days in fabulous Madrid. A dispatch by MDI member Colin Boland and Youth Worker Noeleen Fagan read: The Irish group learned the words to the Macarena, joined in dancing to it and also learnt the moves to the new song that is to be a big hit in Ireland soon ‘The Ketchup Song’!!

52 MUSCULAR DYSTROPHY IRELAND

In early 2003, sporty members got a boost through the creation of the MDI Sports Group, with the first activity being power soccer, an adapted game for people using electric wheelchairs. Later that summer, MDI held its first national power soccer day in the Irish Wheelchair Association sports hall in Dublin with 16 young members and their friends from around the country. The Person of the Tournament award went to Serena Brennan from Mullingar, Co Westmeath for her ‘pure guts and determination’.

The year also saw MDI increase its presence around the country. MDI members in the south-east officially formulated a South East Branch in June 2003, with the branch’s first ever committee comprising of Chairperson Linda McDonald, Vice-Chairperson Mary Stevenson, Secretary Sandra Richter, Treasurers Packie and Heather Larkin and PRO Stephanie Richter. A branch was also formed in Kerry during the year The summer saw members of the Spanish muscular dystrophy association come to Ireland for the second leg of an exchange with MDI and one of the Spaniards penned a poem in appreciation of his Irish hosts:

‘THANKS TO EVERYONE’

By Gustavo Adolfo Aguilar For all those who have helped me, this gift I have reserved for you.

Thanks to your generosity, I have been able To put out the flames of adversity.

You always worry for me, trying to make me a little happier.

Every time that sickness takes hold of me, you do everything possible to come and visit me.

In you I have been able to find support social and sentimental, in you I have been able to find, the vaccination against loneliness.

You have made me understand that not everyone in this world moves out of self interest and although some of you I will not see for a long time, do not worry.

Because in the album of my memory you will remain.

There were a number of personal highlights for MDI members during the year too. In June 2003, Neil Sheehan from Offaly received two tickets from MDI to the Heineken European Rugby Final in Dublin between Toulouse and Perpignan. The following is an article Neil wrote (with some help from dad) afterwards.

I awoke Daddy at 7.30am on the morning of the rugby game. We drove to Portlaoise where Daddy had to collect some parcels. We stopped at a service station for a breakfast roll outside Portlaoise.

We had some time to spare when we got to Dublin so we visited the Square shopping centre in Tallaght. Here we got a birthday present for my aunt Mary and a present for mammy and my brother Louis. I bought some cool stuff in the joke shop. For lunch we had a KFC before heading to the match. As we arrived at the match fighter jets screamed over the stadium. The weather for the game was fine and we took our places in front of the loud Toulouse supporters. I enjoyed their singing in French, beating their drums, twirling their twisters and blowing their trumpets and horns. The game started and Toulouse were playing the better. They scored a try towards the end of the half in front of us (and I was on TV for the replays of the try). Toulouse were 19-0 ahead at half time

having played with the wind (Daddy explained). Daddy queued at half time for a hot dog and this took almost all the half time break. At the start of the second half a man ran onto the pitch with no clothes on and he must have been freezing! The guards led him away and the game continued. Perpignan came back into the game and their supporters began to roar and make lots of noise (the roar from these guys was unbelievable). It wasn’t until the last few minutes that Toulouse got the score to secure the win and their fans erupted behind us. They sang and chanted until after the final whistle. We watched to see the cup presentation and the Toulouse players came down near us to salute their fans. As we headed back to the car I told Daddy what an enjoyable day I had and we started work on this report on the way home.

Neil Sheehan from Offaly, Age 7 Meanwhile, Stephanie Buckley wrote a poem in memory of her aunt, Belinda Lacey, who was a member of MDI and had sadly passed away. The poem was published in MDI News Update, September 2003.

‘THE BUTTERFLY’ I describe you as a butterfly because like them you had so many magical ways, like their colours everyday you sparkled, your presence wonderful as it was, touched so many lives and even now you’re gone, the butterfly will carry on.

I do believe you are a butterfly, every time I see one your wonderful presence is felt, I do believe you are a butterfly that heaven has sent.

I always told you you were beautiful, never believing a word I said, I do hope now you believe me, look what heaven has sent. You may not have been able to walk or go to some destinations, in your dreams, now you’re a beautiful butterfly, you can go anywhere because God has given you wings!

MUSCULAR DYSTROPHY IRELAND 53

MDI continued to benefit from fundraising drives – vital for the support of members – and these included one by the Falcons Parachute Team, Hacketstown, Carlow, which raised over €4,000 for the MDI Cork and Dublin Youth Clubs.

Highlight of the year for many, following months of hard work and preparation, was a dream trip to the Disney resort in Paris which 90 people (including eight helpers) attended.

The Midlands Branch’s holiday in Lanzorote was also a great occasion for members, as Youth Worker Sinead Kenny reported: The children even got a chance to go on a camel ride. We also had great nights too, one of which was the Wild West show. We almost came home with less people than we went with, after wild cowboys hi-jacked our bus, shot some of our members and kidnapped the children!!! We didn’t make Sky News, however, as it was all part of the show (luckily for the Daddies who had taken a bullet).

Reviewing the year, the Chairperson Jimmy Murray noted how an increase in the number of Family Support Workers had resulted in more support for members, as had the appointment of two additional Youth /Respite Workers. MDI also marked the European Year for People with Disabilities with a family day in Portlaoise for members and their families.

For member Darragh Tyrell from Wexford, 2004 kicked off in style when MDI organised a ticket to the Ireland versus Brazil soccer match at Lansdowne Road in Dublin. He reported: It was a top class Brazilian team who were really great to watch and although it was a good achievement to hold them to a draw, Ireland were very unlucky not to win on the night. I thought we had scored several times. The most memorable near misses came from Clinton Morrisson and Robbie Keane, but John O’Shea and Graham Kavanagh came close also. It was a really exciting game and I think that Brian Kerr has a great team for the future. I was lucky enough to get to meet Brian and some of the players after the match. I got some autographs and had some photographs taken as well...Thanks again to MDI for the tickets.

More serious matters than football, even, were discussed at a Dublin conference which MDI held in June in association with the Muscular Dystrophy Campaign (MDC) in the UK. The All Ireland Symposium on Neuromuscular Conditions 54 MUSCULAR DYSTROPHY IRELAND

aimed to raise awareness among health professionals in Ireland about muscular dystrophy and the needs of people with the condition. A range of professionals including occupational therapists, physiotherapists, social workers, psychologists and community care doctors were in attendance.

MDI’s influence went into the mainstream (and big screen) in October with the release of a movie called ‘Inside I’m Dancing’.

A number of MDI members were involved in the research and making of the movie, which tells the story of two disabled men’s fight for independence. Actor James McAvoy, who played the role of a man with Duchenne muscular dystrophy, spent time with MDI members in order to research the condition and learn how it affects people living with it.

The original story for ‘Inside I’m Dancing’ was conceived by Irish writer Christian O’Reilly and was inspired by his own experiences at the Centre for Independent Living in Dublin, where he worked closely with one of the centre’s founders, Dermot Walsh. At the time, Christian also met many MDI members including Martin Naughton, whose spirit, energy, irreverence and wit was an inspiration for the project.

When Christian first pitched the idea of the story to producers, they immediately responded to it – particularly its universal themes of appreciating each day and of learning to love oneself.

It was felt that it could be a highly original, provocative and moving film. Christian developed the story and Jeffrey Caine was commissioned to write the screenplay, which became a powerful story of friendship and liberation.

MDI’s activities during 2005 continued apace, as evidenced by a trip to the Dogs in April attended by up to 80 members and friends of the Dublin Branch. The get together at the Shelbourne Greyhound Stadium in Dublin made for a night of ‘betting, boozing, winning, losing, fun and frolics’ as Hubert McCormack concisely put it, and was ably organised by Jean Butterly (Chairperson, Dublin Branch) and Ephraim Purcell (Treasurer, Dublin Branch). The night was ‘one of the best attended events organised by the Dublin Branch in recent years’, underlined Hubert.

In respect of more sober matters, MDI continued to gather stellar line ups for AGMs. The 2005 event included Joseph Irwin, Honorory Director of Research with the Jennifer Trust

for Spinal Muscular Atrophy; Dr Ian Graham from Royal Holloway, University of London; Professor Kay Ohlendieck of NUI Maynooth (who reported on the findings of his MDI-funded study ‘Identification of novel therapeutic targets in dystrophic muscle fibres’); and Michael McGrath, Executive Director and co-founder of the Muscle Help Foundation in the UK and who had become the first person with a disability to conquer both the north and south poles.

In September 2005, a questionnaire was issued to members to determine their satisfaction with the services that MDI provided. The results suggested that although members were generally happy, they were not aware of all the services that they may have been entitled to access. To overcome this, MDI developed a new Members’ Information Booklet the following year.

A further highlight in 2005 was the selection of MDI member Eamon Nolan as an O2 hero, with both Eamon and Joe T Mooney attending the Annual O2 Community Awards event in London.

The New Year period came and went, and Tánaiste Mary Harney opened MDI’s new office on North Brunswick Street in January 2006. The organisation and its profile were continuing to grow and this was underlined in the successes of activities such as fundraising events. In March 2006, a Fundraising Dance at the Kilbride Community and Leisure Centre in Roscommon, organised by MDI member Marcella Gavigan and her friends, raised some €20,000 for MDI’s summer camps and research into muscular dystrophy.

They were also busy in the northwest, where Jimmy Mooney and friends from Donegal raised a total of €41,800 for research purposes. Jimmy, whose son Liam has the condition, raised €31,075 by running his first ever marathon in Belfast on the May Bank Holiday Monday. And a few weeks later, Jimmy was presented with a cheque for €10,725 by the organisers of the North Pole Challenge – a climb of Slieve Sneacht and a cycle ride around the Inishowen Peninsula in Donegal. All of the proceeds went towards exon skipping research being conducted in the UK.

The year rounded off with the screening of the MDI Midlands Youth/Drama Club short film entitled ‘The Brandy Hotel’ which was shown at the 1st Annual Rush Film Festival in the Irish Film Institute in December. ‘The film was well received and got good reviews,’ noted MDI News update.

The then Tánaiste and Minister for Health and Children, Mary Harney, pictured with Florence Dougall, Chairperson of MDI, at the opening of MDI’s new offices in North Brunswick Street, Dublin, in January 2006.

Tánaiste Mary Harney being presented with a token of thanks by MDI member Simon Jameson at the opening of MDI’s new offices in North Brunswick Street, Dublin, in January 2006.

MUSCULAR DYSTROPHY IRELAND 55

Later in the year, a Greyhound Night in Newbridge raised over €20,000 for MDI. Organised by the aforementioned Eamon Nolan – a dedicated member from the town - the night proved a huge success with members from the Dublin, Midlands and the South East Branches attending. One of the main sponsors, Parfit Ltd, from Cloghran, Co Dublin, and local track bookmaker Ber Dillon were also thanked for their generous support.

The MDI stand at the Harley Davidson (HOG) Rally 2006, Gleneagles Hotel, Killarney – manned by MDI staff and volunteers.

Given this connection, MDI had been contacted by MDA Europe and invited down to Killarney to participate in this event. MDI merchandise such as chocolates, key rings and pens were sold, along with the 2006 edition of the Harley Davidson MDA Pins, which proved very popular.

Greyhound Race Night organiser Eamon Nolan (left) and Jim Pouch (prize sponsor) presenting Elaine McDonnell with 1st prize from a raffle on the night. She accepted it on behalf of her brother Enda.

A very special event involving MDI happened in late June when Harley-Davidson owners from all over Europe rode into Killarney for their 15th European Harley Owners Group (HOG) Rally. Up to 10,000 Harley-Davidson bikers exhibited their bikes, partied and paraded through the Ring of Kerry in what was a terrific and thunderous sight. With entertainment over the three days from Suzi Quatro, Bonnie Tyler and The Counterfeit Stones, among others, it was the place to be if you were a ‘biker or bopper’, according to Hubert McCormack writing in MDI News Update.

As Hubert also noted, it wasn’t all music and motorbikes.

Because of the cooperation between Harley Davidson and the American Muscular Dystrophy Association (MDA) the HOG also fundraise for muscular dystrophy associations in Europe at all official Harley-Davidson rallies and events, with money raised presented to muscular dystrophy associations within that particular EU country.

56 MUSCULAR DYSTROPHY IRELAND

Joe Kleuters and his wife Carina from MDA Europe in Holland, who invited members to this rally and helped raise a total of €3,100 for MDI, were commended for their support.

Thanks were also extended to Kieran Quinn from Kilkenny and Sean O’Brien from Waterford, both members of the Celtic Thunder Ireland Chapter of the Harley Davidson Group and who donated their MDA Harley Pins for auction on the last night and raised a further €300 for MDI. More support during the year came from IBM when it chose MDI to participate in an exciting project known as the Accessibility Work Grants Project. It aimed to create increased web accessibility and usability opportunities for people with disabilities, employing newly-developed applications based on Linux software. Elsewhere in the business world, International Fund Services (Ireland) Limited in Drogheda, Co Louth generously donated €10,000 to MDI. The year 2006 also saw MDI join the Medical Research Charities Group and launch its new booklet ‘Members’ Guide to MDI’, which was part-funded by Comhairle. The booklet gave members a comprehensive overview of the structure of the organisation, the supports available and how to access them.

Chief Executive Joe T Mooney and Information Officer Karen Pickering travelled to Portlaoise, Monaghan and Macroom to launch the new publication and consult members on their vision for the future development of MDI. In August 2006, MDI received an invitation from the Chairman of the Joint Committee on Health and Children to make a presentation on research advances in the potential treatment of Duchenne muscular dystrophy. This invitation arose from the interest in the UK consortium’s exon skipping research.

On 26 October, a delegation from MDI arrived at Dáil Éireann to present to the committee. This delegation consisted of Joe T Mooney, Karen Pickering, Kate Power (Respite Coordinator), Hubert McCormack (Administrator), Jimmy Mooney (MDI member) and Dr Matthew Wood (member of the MDEX consortium, from the University of Oxford).

After an address from Joe Mooney, Kate Power gave an introduction to the supports that MDI provided to members.

Karen Pickering informed the committee about Duchenne muscular dystrophy and the present steps to manage the condition. Dr Wood spoke about the status of the exon skipping research, and the need for further funding to ensure its progress.

Personal highlights during the year were notable for MDI’s Fundraising Officer Steven Valentine, who represented Ireland in the World Boccia Championship in Brazil, and came home with a silver medal in the pairs’ competition. Boccia (pronounced ‘botcha’) is similar to bowls and was originally designed as a sport for people with cerebral palsy, but is now played by many sections of society at a number of different levels.

MDI’s connection with sport was also maintained through its ongoing participation in the Dublin Flora Mini Marathon, which remains an important fundraiser for the organisation.

Participation is always strong and in June 2007, for example, MDI had over 100 participants who raised over €11,000 for the organisation.

A new development during 2007 was the Integr8 project, an interactive youth work DVD aimed at increasing awareness

of the needs, desires and wants of young people with physical disabilities. Funded by MDI, the Irish Youth Foundation, Irish Wheelchair Association and Foróige, the DVD was launched in Blanchardstown Library by Minister of State, Sean Haughey TD. Meanwhile, MDI member Eileen Gormley from Galway received a wonderful honour during the year when she was nominated as regional Young Person of the Year in the Junior Chamber International (JCI) awards. She then won the national title at a ceremony in Fota Island in Cobh, Co Cork.

Generating accessible information for members remained a priority and in March 2008 MDI held an information day in Dublin on advances in the care of Duchenne muscular dystrophy, in conjunction with consultant paediatric neurologist Dr Bryan Lynch. Presentations were given by Professor Kate Bushby from the University of Newcastle in the UK; Dr Damien McCormack, paediatric orthopaedic surgeon; Pamela Foley, physiotherapist; Dr Dubhfeasa Slattery, respiratory paediatrician and Dr Colin McMahon, paediatric cardiologist.

The purpose of the conference, which was funded by the Department of Health and Children, was to ensure that all families affected by Duchenne were kept updated on how treatments were advancing and to ensure that members were getting as much support as possible. Chaired by consultant neurologists Dr Orla Hardiman and Dr Ronan Walsh, the forum was extremely well attended and proved to be a highly informative and interesting day for everyone.

MDI held another information day the following month – but this time for politicians. The event in Buswells Hotel was a new departure for MDI and it aimed to inform TDs about muscular dystrophy and the role of MDI in supporting its members. In particular, MDI wanted to highlight a number of urgent funding needs including the €1.5 million necessary to ensure that exon skipping research ran to its conclusion and to the potential development of a new therapy. Further issues raised were the need for a multidisciplinary team at the adult muscle clinic in Beaumont Hospital and funding for the Respiratory Team in the Children’s University Hospital, Temple Street, to ensure that all children with muscular dystrophy were monitored and treated for respiratory problems.

MUSCULAR DYSTROPHY IRELAND 57

Also highlighted was the need for the recruitment of physiotherapists and occupational therapists (OTs). MDI noted that there were 97 members who had no access to physiotherapy despite requiring it, and 240 who received it intermittently but needed a more regular service. Likewise, there were 20 members who could not access an OT and some 42 members were waiting to receive equipment that they needed urgently.

Another information event – vastly different from all that had gone before – was held in July 2008 when MDI hosted a Speed Dating Night at the Prince of Wales Hotel, Athlone, Co Westmeath. Organised by MDI member Sammy Brill, it was lots of fun and the good music consoled those who didn’t find love.

I have to say I always love going on the MDI summer camps.

It rejuvenates me, there is a lovely friendly and supportive atmosphere. This year was no exception. In May this year I went to Clarenbridge in Galway and had a great week - it was great, the craic was good, the food good and it was lovely just to relax and enjoy the beauty of this place, both inside and outside. We were blessed with the weather too. On Thursday night we went to the dogs - some of us won, some of us lost but we all came out smiling.

We had a lovely time going around Salthill. We went shopping, had some lovely meals, and there we had music, singing and dancing to our taste. We had our own sing song on one night (with the help of the karaoke machine) - we were not as good as the band but we had a laugh anyway...There is always a little touch of sadness with me when I am preparing to go home because I am hoping I’ll meet everybody again next year.

Every fundraising activity and information event revolved around one main aim – enhancing the lives of members. This support was vital, as underlined in an article in MDI News Update by member Bill Hayes in May 2008.

I sometimes feel like a bit of a fraudster as I am now approaching my seventy third year and I can still walk a little, get out of bed, stand in the shower etc. However, I had not been able to shop for clothing for over four years and to help with this, my Family Support Worker from MDI, Julie-Ann Coleman (who is wonderful), organised for a van and a driver (Karen Mooney, MDI Youth/Respite Worker) to take me shopping. I was a bit apprehensive heading off in my wheelchair, but off we went to Gorey, and the joy of being able to go into a big department store in a chair and do one’s shopping without any problems was marvellous. Both Julie-Ann and Karen were so helpful and great fun to be with too, nothing was a problem and we never stopped laughing and as you would say, ‘the craic was mighty!’ After shopping we went for a bite to eat before the drive home. I would like to take this opportunity to thank both Julie-Ann and Karen from MDI for a day I will never forget. Perhaps we might do it again some day - who knows! I am sorry for rattling on a bit and probably boring the pants off you all! But I just felt like telling people what MDI is all about, and to thank them for all their support – God bless you all and thanks again.

Similar themes were expressed in an article by Dublin-based member Mary Costello, with regard to an adult camp she attended in May 2008: 58 MUSCULAR DYSTROPHY IRELAND

A festival of fun: a collage of youth camps through the years.

More praise came from Aisling McElligott, who wrote about a camp she was attending that same summer.

events was great. Over €19,000 was raised and presented to MDI members from Cork.

My name is Aisling. I am eleven years old. I have one little sister and her name is Eimear. She is five going on six in October. I have three brothers. Their names are Barry who is 18, Steven who is 16 and David who is 14. My mammy’s name is Elaine and she is a teacher in Tullamore College also known as the Tech. My Daddy’s name is Brendan and he is a lorry driver. I am going into fifth class in September. I am writing a story about my time at summer camp with MDI. I went to Armagh on the 30th of June and got there at 2.30pm. I had sandwiches at 3.45pm. I had my dinner at 6.30pm, lasagne and chips (with a little salt) and icecream for dessert! I then played buzz! (the music version) and went to bed at 10.00pm. On Tuesday we went to do archery and on my first go ever I got really good and then we played a competition and my team won by two points. At 5.00pm we left to go back to where we were staying for the week. We got back at 5.25pm.

The place we were staying was called Tí Chulainn in Co Armagh.

We were going to plan a slumber party for Tuesday night but it was late and we had to get up early on Wednesday morning for shopping. So we then had a slumber party on Wednesday night.

Earlier we went shopping and then to the cinema and I saw ‘The Chronicles of Narnia: Prince Caspian’. I had popcorn, chocolate and diet coke. On Thursday we did power soccer and a table quiz.

I went to bed at 10.20pm. On Friday we did canoeing and we watched a movie called ‘Fantastic Four: Rise of the Silver Surfer’.

Today is Saturday and Trish is painting my nails blue with yellow dots. Then Oonagh will curl my hair. After lunch we will go bowling. Bowling is one of my favourite activities. When we come back we will have a party. Tomorrow we are going home. I am sad because I will miss my new friends but I am happy to go home to my family.

The annual MDI awareness campaign continued to go from strength to strength, with the sale of chocolates raising over €109,000 in 2009. All such fundraising efforts were part of improving services for people with muscular dystrophy and enhancing research into the neuromuscular conditions.

Meanwhile, MDI’s staff continued to flourish in their endeavours with Driver/Fleet Coordinator Darren Lyons – who is still working hard with the organisation – receiving a plaque to mark his runner-up position in the MiDAS Driver Competition Awards in December 2008.

A review of the year would also not be complete without acknowledging the support of the Cork Federation of the ICA, which chose MDI as its nominated charity for 2008.

Throughout the year many events were organised in Cork to raise money for MDI and the support and attendance at these

In September 2009, MDI ran a survey that was open to all people in Ireland living with muscular dystrophy and related neuromuscular conditions. This survey enabled people to highlight their experiences in relation to medical services, accessing equipment and adaptations, respite and personal assistance, and education, training and employment.

This survey highlighted that some 56% of people with neuromuscular conditions were not registered on the National Physical and Sensory Disability Database, a record managed by the Health Research Board which assists in informing regional and national planning of services for those affected by disabilities. The survey also found that adults with neuromuscular conditions were less likely than children to attend specialist medical services for assessment and management of their condition and that some 47% of people had experienced delays in accessing essential aids and appliances. Moreover, it found that 42% of adults with neuromuscular conditions were unemployed and 61% believed that living with their condition had negatively affected their ability to earn. Additionally, 65% believed that living with their condition had negatively affected their quality of life, while 30% had gone on a respite break in the previous five years, mainly at a break or camp organised by a voluntary organisation.

These statistics were a reminder of the difficulties and challenges which many people with neuromuscular conditions have faced – and continue to face. The information also underlined the need for State and NGO players to constantly support and develop better services, and promote the needs of people affected by such conditions.

Meanwhile, a number of MDI members excelled in their chosen pursuits during the year. In September 2009, Eoghan Clifford participated in the inaugural Race Around Ireland, MUSCULAR DYSTROPHY IRELAND 59

one of the toughest and most gruelling cycling events ever to have been held here. Eoghan did extremely well but injury scuppered his chances of a possible third place finish and he had to retire from the race prematurely.

Eoghan, who has a neuromuscular condition, cycled nearly 1,400 km and raised over €7,000 in funding for the Central Remedial Clinic and MDI. Despite personal disappointment, Eoghan’s efforts certainly helped others.

Inspiration could also be found in the film ‘Extraordinary Measures’, which had a special screening in February 2010 in Dundrum hosted by MDI, the Genetic and Rare Disorders Organisation and the Irish Platform for Patients’ Organisations, Science & Industry. The film was inspired by the true story of two parents who went to great efforts to find a treatment for their children who have a rare neuromuscular condition known as Pompe’s Disease.

Simon Jameson, MDI Board member and airsoft enthusiast.

Film-making was also on the agenda of Simon Jameson, son of Joe and Ita and a very active member of MDI who presently serves on the Board. Simon scripted and produced a film which introduced viewers to the sport of airsoft and captured his own involvement. The movie was dedicated to the memory of his brother Ed, a highly courageous young man who sadly passed away on 6 June 2009. In 2010, Simon told MDI News Update: 60 MUSCULAR DYSTROPHY IRELAND

I was in the middle of writing the script last year when my brother died. This was a very difficult time for me, but it also encouraged me to continue with this project and to complete it in Ed’s memory. It took about four weeks to get the equipment (cameras etc) organised and to arrange for everyone to get together.

It then took a further two days to shoot all the scenes and many more weeks thereafter for editing and sound mastering. I was determined to also ensure that the dedications and credits at the end were also appropriate. It was a great experience making this film and although stressful at times, it has definitely inspired me to do more.

Simon’s ‘Project Tank Dedication Video’ can be viewed through the following link: https://www.youtube.com/ watch?v=7ZtNQvFwVNg. More innovative work was done by Alan Collins, who raised over €13,000 for MDI by skate boarding from Mizen Head to Malin Head in July. Alan completed the skateboard challenge of around 835km in 11 days.

A major development for MDI as an organisation, and one which was a huge boost to members was the commencement of work on the Centre of Excellence in July 2010. It had been ‘a dream’ of many members for this to happen, remarks Joe T Mooney today, and on 4 April 2011 the dream became a reality. After a busy weekend of moving furniture and office equipment, the 6,000 square foot premises became the new and permanent Head Office of Muscular Dystrophy Ireland. As well as fully accessible administrative offices and a board room, the second floor of the building consists of a self contained fully accessible four bedroom apartment which is available for short term respite breaks for MDI members. It can also provide accommodation to MDI members and their families from outside Dublin who need to attend clinic or hospital appointments or visit members in hospital, etc.

On Saturday 30 April 2011, MDI held its first official event at these new offices when it hosted an informal open day and invited all members to come and visit the new premises for a guided tour and some light refreshments.

The facility, which hosts a range of equipment and appliances that can be loaned to members, is among the finest

New premises under construction.

Original Building.

Contract being signed – l-r: Pat Ried (Builder), Elaine

Keys being handed over to Joe Mooney by Pat Ried.

McDonnell (Chairperson MDI), Joe Mooney (CEO) and Joe Jameson (Former Treasurer).

achievements of MDI, particularly in respect of its recent history. Its development essentially brings the story of the organisation up to the present day.

Research remains an important area for members and MDI has stayed committed to backing scientists and keeping members updated.

‘We’re only here a year so this is a whole new chapter, if you like, in the history of MDI,’ says Joe T Mooney. ‘What we can offer now is endless. Whether it’s training, whether it’s computer classes, whether it’s information, a social outing, a game of cards, or if people just want to come and have a break from their own scenario. I’m very excited about the building.

It’s here for members and members have to come and tell us what they want. Some people don’t want to be part of the organisation and that’s quite okay – we’re here when you need us. We’d never push our way into anybody’s home and we never tell people what to do.’

Today MDI provides a comprehensive range of services to its members, from family and youth support, respite and holiday camps, equipment lending, information and research support to clinic liaison.

Bedroom in the ‘Home from Home’ Apartment.

Outside new building.

Boardroom in MDI Offices.

Kitchen in the ‘Home from Home’ Apartment.

MUSCULAR DYSTROPHY IRELAND 61

Indeed since its inception in 1972, MDI has been funding research into neuromuscular conditions and it has directly provided over €300,000 towards research in the past ten years alone. In addition to this, €64,775 towards muscular dystrophy research was provided to MDI by the Health Research Board/ Medical Research Charities Group Joint Funding Scheme.

‘MDI places a great deal of importance on funding and promoting research,’ says MDI Information Officer Karen Pickering. ‘Over the last ten years, the field has grown so much and we now have international clinical trials taking place trying to identify new therapies. While our primary remit of providing support and information is essential to make people’s lives a little easier now, we are involved in research to try to help advance the understanding of the conditions and to develop treatments for our members and for future generations.’

MDI’s research fund mainly consists of money from branches, donations and fundraising (when fundraisers have specified that they would like the funds to be used in this way). The organisation believes that there should be a dedicated State funding stream for rare conditions, as this area of research has been neglected in the past.

Nevertheless, MDI’s carefully-chosen funding projects – which are selected with assistance from an external review team have furthered understanding of different forms of muscular dystrophy and contributed to the development of clinical trials which have the potential to dramatically improve the lives of people with the condition.

‘One of the main challenges with promoting research to our members is trying to balance the hope and optimism that one day - and we hope that this day comes soon - there will be treatments available, with the reality that research can be slow and that only one in ten products actually make it through the clinical trial process and get to market,’ explains Karen Pickering. ‘However, the more research and trials that are taking place, the better the chance that there will be a positive outcome. MDI’s members provide an essential support by fundraising for the research fund. It is a challenge that research can be very expensive and our fund is therefore limited. However, one of the most effective things that MDI can do is to provide seed funding or start up grants to researchers to allow them to build up some evidence to 62 MUSCULAR DYSTROPHY IRELAND

support their approach. They can then use this evidence to apply for larger grants from international bodies to carry on the research into the future.’

Professor Kay Ohlendieck, Head of the Biology Department at NUI Maynooth, has been among the recipients of funding from MDI. One particularly vital area of his research has been in the area of exon skipping, a form of gene therapy which seeks to lessen the effects of Duchenne, the severest form of muscular dystrophy.

Funding from MDI, the Health Research Board and Science Foundation Ireland helped Professor Ohlendieck’s team at NUI Maynooth and partners at the University of Western Australia to confirm the effectiveness of exon skipping in the treatment of muscular dystrophy.

Their research, published in January 2009, showed that experimental muscles treated with a particular type of gene therapy led to the restoration of the malfunctioning dystrophin protein which causes Duchenne muscular dystrophy.

Through gene therapy or ‘exon skipping’ over the malfunctioning part of the dystrophic gene the muscle produces an alternative protein product that re-establishes dystrophin and reverses the wasting process. Importantly, the MDI-funded study found that this treatment reversed some of the secondary damage caused by the condition.

‘That was actually a very successful publication where we showed that when you do exon skipping, the secondary abnormalities are rectified,’ comments Professor Ohlendieck.

The research contributed to the growing optimism that exon skipping will provide a viable treatment in substantially reducing the effects of Duchenne. Trials are currently ongoing around the world in this respect.

‘Certainly exon skipping is one of the more promising approaches where one can actually sort of convert a very severe form of muscular dystrophy into a much more benign form. That’s probably the way forward,’ says Professor Ohlendieck.

At present, the team in Maynooth is collaborating with colleagues at the University of Western Australia and the

University of Newcastle using knowledge gained during this research to carry out a clinical study on samples from Irish boys with Duchenne muscular dystrophy.

On a human level, he has also been impressed by how MDI keeps its members at the heart of the organisation. ‘Several times at annual meetings it was very interesting to hear a patient speak instead of just the doctor or scientist...’

‘We would be more on the diagnostic side and overall understanding of the molecular pathology and not so much on developing new treatments,’ adds Prof Ohlendieck of his own team’s expertise. ‘The research MDI is funding [in this respect] is called proteomics. Traditionally in biology or biochemistry it was always that, say, single proteins or single genes were studied. For around 10 years, this new method has been developed which is called proteomics, which tries to take from one cell – for example from a muscle cell – all the proteins and isolate them, separate them and then analyse them in parallel. This is what proteomics is and this is what we do.’

At the moment, Professor Ohlendieck is also involved in a three year study where ‘we analyse, using the proteomics technique, different kinds of muscle in the dystrophic phenotype’. In the long-term, this investigation ‘might help to improve diagnostics and maybe identify novel therapeutic targets and generally understand the pathology of the entire process’ A previous 3-year project by Professor Ohlendieck, which was funded by MDI, showed that pharmacological treatment of the defect in calcium handling might be a way to counteract muscle degeneration in muscular dystrophy, and the scientific results were published in six peer-reviewed international journals from 2003 to 2005.

Professor Ohlendieck compliments MDI for its commitment to basic research, a process which seeks to broaden scientific understanding and which is especially important in discovering more about presently incurable conditions such as muscular dystrophy. ‘They are very open to all different kinds of research,’ adds Professor Ohlendieck. ‘I’ve really only good experiences with them.’

Karen Pickering MDI Information Officer and Joe Mooney CEO of MDI presenting research funding to Professor Kay Ohlendieck (pictured centre) in 2011.

According to Karen Pickering, prior to the AGM every year, MDI holds a session on research where different researchers that it funds attend to present on the work they are doing.

This is essential to show how research is progressing and to demonstrate to members how the funds that they have worked hard to raise are being used.

Members are also kept updated through the MDI newsletter which always includes updates on research and the progress of clinical trials, while there is also a relevant section on research on www.mdi.ie.

MUSCULAR DYSTROPHY IRELAND 63

RESEARCH

THAT

MDI

HAS FUNDED OVER

THE LAST TEN YEARS INCLUDES: 2012

2010

Dr Aisling Ryan, Cork University Hospital and Prof Orla Hardiman, Beaumont Hospital.

Funding to undertake a population-based survey of adult neuromuscular disease in the Republic of Ireland, with particular emphasis on the identification of conditions for which therapeutic options are now available. A secondary aim is to generate specific care programmes for patients with adult onset neuromuscular conditions in the context of two national referral clinics in Dublin and Cork.

Dr Matthew Wood, University of Oxford (and member of the MDEX Consortium which is currently running the exon skipping clinical trials in the UK). Enhanced systemic delivery of antisense oligonucleotides for exon skipping in Duchenne muscular dystrophy.

Additional funding for one year to improve the delivery of antisense oligonucleotides to target all muscles including the heart.

Amount funded: €28,666

Amount funded: €20,000

2011 Prof Richard Costello, Beaumont Hospital.

Funding to purchase ten oximeters. These devices can be worn overnight at home and give a simple measure of respiratory function, reducing the need for adults with neuromuscular conditions who require assessment of respiratory function to have an overnight stay in hospital for a sleep study.

Amount funded: €8,000 Dr Keith Murphy, University College Dublin Novel treatment for Charcot-Marie-Tooth Disease.

2009 Dr Bryan Lynch, CRC Dublin.

Funding to employ a Clinical Research Fellow performing audits of care management and researching bone density in boys with Duchenne muscular dystrophy Amount funded: €34,500

2008 Dr Matthew Wood, University of Oxford.

Enhanced systemic delivery of antisense oligonucleotides for exon skipping in Duchenne muscular dystrophy.

Amount funded: €33,752

Amount funded: €4,543 Prof Kay Ohlendieck, NUI Maynooth.

Establishment of a protein biomarker signature for x-linked muscular dystrophy: Identification of novel integral muscle proteins by mass spectrometry-based proteomics

Dr Deniz Yilmazer-Hanke, University College Cork.

Contribution of the inflammatory reaction in the muscle in Duchenne muscular dystrophy to depression: development of new treatment strategies.

Amount funded: €37,616

Amount funded: €20,000

64 MUSCULAR DYSTROPHY IRELAND

2006 MDEX Consortium, UK. Restoring dystrophin expression in Duchenne muscular dystrophy: A UK consortium for preclinical optimisation and a Phase I/II Clinical Trial using antisense oligonucleotides Amount funded: £100,000 sterling, including €49,775 from the HRB/MRCG Joint Funding Scheme towards one part of the project.

Prof Kay Ohlendieck, NUI Maynooth.

Identification of novel biomarkers in dystrophic heart and muscle fibres using comparative proteomics.

Amount funded: €30,000, including €15,000 from the HRB/ MRCG Joint Funding Scheme.

2002 Prof Kay Ohlendieck, NUI Maynooth.

Identification of novel therapeutic targets in dystrophic muscle fibres.

Amount funded: €22,500

MDI therefore maintains a balanced approach towards backing research and ensuring members have the services that they need – such as liaison at the muscle clinics for people with muscular dystrophy, which are run monthly at the Central Remedial Clinic, Beaumount Hospital and Temple Street Children’s Hospital in Dublin. MDI’s Family Support and Clinic Coordinator, Margaret Goode, is available to support members and their families who are attending these clinics.

According to Margaret, MDI tries to respond to any need which a member has at a clinic. This may include assistance with information, emotional support, and fixing or rearranging appointments. A close relationship has been built up with consultants and their secretaries and this makes the whole process much easier for members.

The support also extends to family members. As Margaret notes: ‘For the younger members, when the wheelchair is being introduced, it can be a very difficult time for their parents.’

As with the family support service, the skill of being able to listen in a non-judgmental fashion is vital. ‘To be a really good listener – that’s hugely important. To have empathy with them – not sympathy but empathy.’

There is no doubt that MDI’s member-focused approach has impressed those who have liaised with the organisation, including leading medical professionals working in the area of muscular dystrophy.

Dr Bryan Lynch, consultant paediatric neurologist at the Central Remedial Clinic and Temple Street, has always found MDI’s representatives ‘extremely helpful’ and ‘a great resource’ for families over the years. Muscular dystrophy is often diagnosed in early childhood, notes Dr Lynch, and therefore families can feel overwhelmed by the nature of this long-term challenge. In such cases, ‘they learn a huge amount from being involved with an organisation such as MDI’ and he notes the ‘heroism of what these families can get through in organising their daily lives’. He says MDI offers families a ‘community’ of people who know what each other are going through. ‘Because of what I do, I’m involved with many patient organisations with a wide variety of disorders,’ continues Dr Lynch, ‘and I find MDI very collegial and easy to work with. They have the interests of the community at heart.’

MUSCULAR DYSTROPHY IRELAND 65

Another facet of MDI’s work which has continued to impress is its growing public profile and diverse fundraising events.

Awareness Day Promotional Photo.

Selling chocolates.

Ronan Collins, Naglis Montvilas young member of MDI and Ireland Bike Fest, Killarney.

Ladies Mini Marathon.

66 MUSCULAR DYSTROPHY IRELAND

Alan Collins, Malin to Mizen Skateboard challenge.

According to Fundraising and Public Relations Coordinator Amy Bramley: ‘Muscular Dystrophy Ireland has many national fundraising events held throughout the year including the National Awareness Campaign on 14 February, Dunne Stores National Bag Pack, Fire Walk Challenge, The Newbridge Greyhound Race Night and National Draw and Ireland Bike Fest and National Draw. MDI members, friends and supporters also take part in local fundraising events such as table quizzes, marathons, church gate collections and parachute jumps.’

bike village set up at the Gleneagles Hotel. One of the highlights of the festival is a spectacular parade of bikers and a bucket collection through the streets of Killarney in aid of Muscular Dystrophy Ireland.’

MDI also continues its active membership of alliance organisations such as the Genetic and Rare Disorders Organisation (GRDO), a coalition of voluntary groups representing the views and concerns of people affected by genetic or other rare disorders.

GRDO, of which MDI is a founding member, acts as a watchdog in relation to legislation concerning disability to ensure that the rights of people with genetic or other rare conditions are protected.

R

eflecting on his tenure so far, Joe refers to his main aims for the organisation upon taking charge. ‘Our idea was two-fold – to create awareness of the condition and also to seek more funding to develop our services for supports, and that’s what we did. There was more money floating about back then. Today the HSE is in crisis and they’ve no money so what we have we’re trying to hold.’

His work so far has been a ‘challenge’ but it’s one which Joe welcomes. ‘I’ve enjoyed it and hope to enjoy it for a lot longer,’ he remarks.

There has been deep sadness too. Many members have passed away over the years due to the condition. The impact that each cherished loved one had on their families, friends, communities, and on MDI, will never be forgotten. The strides that MDI continues to make in enhancing life for people with neuromuscular conditions are made in their memory.

One of the most eye-catching events is the Ireland Bike Fest and National Draw which has been running since 2006. It is a three-day biker festival at the Gleneagles Hotel, Killarney, Co Kerry which sees over 30,000 motorbike enthusiasts, Harley Davidson owners and visitors from all over Ireland and parts of Europe ride into Killarney to participate in a family-friendly biker festival. ‘Muscular Dystrophy Ireland are delighted and very appreciative to be nominated as the official charity for the festival,’ says Amy Bramley. ‘The three-day festival has been an overwhelming success and there is always a great atmosphere at the

Those who’ve volunteered, worked or been associated with MDI are full of praise when assessing how far the organisation has come.

Joe Jameson feels there has been huge advances in the care and representation of people with muscular dystrophy – and that MDI has had a major role in this. Joe recalls that when his late son, Ed, was diagnosed some 27 years ago, the prevailing societal attitude was one of inertia. ‘The attitude when my son was diagnosed was “there’s nothing we can do for him”, but since MUSCULAR DYSTROPHY IRELAND 67

that time the attitude has moved to ‘there’s a lot we can do and how much more can we do?’

Joe feels that MDI has had much to do with such advancements, although this is ‘not to lessen the input from the CRC and Temple Street’ in terms of the enhancement of medical services for people with muscular dystrophy. From an organisation that began in living rooms, the health authorities in Ireland have come to see MDI as a ‘first delivery agent’, notes Joe. Peter O’Brien, another parent who became involved in the 1980s, says the organisation has ‘moved on leaps and bounds’.

Peter drifted away from direct involvement after his two boys sadly passed away in 1991. In addition, the early 1990s was a time when MDI was beginning to employ staff and naturally many of its tireless volunteers such as Peter and Tríona could take time out. Nevertheless, the O’Briens have maintained their interest in MDI’s progress over the years and indeed Tríona is on the Trust Fund committee.

Beryl Ryan, who gave much personal time and effort to MDI for some two decades, is also impressed by MDI’s development and pleased to note that two committed employees from the early days are still going strong: ‘Fair dues to Hubert, he put in tremendous work, and Antoinette never let us down.’

Susan Peoples, who founded the Donegal Branch with her husband Matthew, is still a committed volunteer and serves as Donegal Branch Chairperson. Sadly, her eldest son Liam passed away in 1999 and son James in 2008. Her remaining son John is happily working away following a heart transplant on 22 December 2002 – the exact same date on which his brother James had the same operation six years previously – while the couple also have a daughter, Margaret Mary. Susan says the family remains in regular contact with MDI Chief Executive Joe T Mooney, who keeps them ‘up to date’ and always responds ‘if there’s something bothering us’. She says that MDI’s support has remained a constant through the years: ‘Anything they could do, they always did.’

Martin Naughton, a champion of disability rights and a key member and supporter of MDI to this day, says each decade has seen huge advancements and achievements for the organisation. The 1970s saw it get up and running, while in the 1980s the organisation had the vision to see beyond 68 MUSCULAR DYSTROPHY IRELAND

research whilst staying committed to backing scientific studies.

Martin says the organisation got a ‘handle’ on this vision in the 1990s, with services expanding significantly under the direction of Catherine Hickey. ‘If I take the last decade in particular, if we look at what we have here [MDI Centre of Excellence], this is not just a building… you have to have the lived experience of muscular dystrophy to fully appreciate it. Of course it’s a building with walls and doors, all of that, but if you go into one of the bathrooms or any of the corridors, you have all type of accessible supports – kick pads so the door opens automatically. The sense of freedom and independence that this brings, you’d need to feel it to believe it.’

Martin underlines that this key development was not something that ‘happened by chance’ but ‘by believing we could do this’. It would be fair to suggest that no-one believed more than Chief Executive Joe T Mooney, yet it required not just belief but courage. As Martin remarks: ‘Some of the things that we did before, we didn’t have to see the end picture in order to be able to get to it, we just knew it was the way we wanted to go and if we worked hard it would happen for us. But for this piece of work he had to have it clear in his head, and start working on the plan.’

There was, you could say, no room for error.

‘There was no room for failure,’ responds Martin.

Florence Dougall, current Board member and a very active and committed presence through the years, notes that MDI remains ‘very member focused’ and maintains a ‘personal touch’ despite its growth. ‘I think our CEO has done great work and is very understanding of everybody. He’s always on call and we’re very lucky to have him,’ she notes.

Another current Board member – Jimmy Murray, who has served on the board in various capacities over the years – comments: ‘I think the main developments have been moving out of Carmichael House into our own offices on North Brunswick Street and then eventually here [MDI Head Office], and the increase in staff and services over the years. It’s come a long way since the Dublin Branch meetings in the Ormond Hotel...

‘It’s been quite a long journey but it has been progressing positively all the way...I think the main success really has been that we’ve been short on talk and more on action, that’s the way we’ve always

thought. It’s been a great experience for me. I’ve been involved since the early 1980s and I’ve made a lot of friends, lifelong friends, and I’m here for the long haul.’

everyday life,’ says Gordana, who adds that MDI promoted this balance within EAMDA as a whole.

Hennie Walsh, a dedicated volunteer over the years and the organisation’s first ever Family Support Worker, comments: ‘MDI has grown over the period of my involvement from a small organisation, run by parents, heavily relying on the British organisation, to a professional organisation providing much needed services to its membership. I am particularly pleased to see that MDI employs many people that have the condition themselves. The organisation now are the proud owners of a premises that not only accommodates the staff, but also provides members with a safe and secure place to stay when they have to attend clinics in Dublin, or are just visiting the city. The organisation has come of age and I am very proud that I have played a small part in its development.’

Judy Windle, who has also dedicated so much time and energy to MDI over the years, is encouraged by its progress and feels the CEO has ‘done tremendous work’. Judy’s view is echoed by former director Catherine Hickey who comments: ‘He has brought it to the next level and the real difference for members is that there are more sustainable services there for them... I think it was very courageous of MDI to go ahead and buy land and build.

I think it’s turned out to be a very good decision, and it will be a lasting, sustainable aspect of MDI with the challenges facing any organisation which is primarily funded by the HSE.’ Hazel Bridcut, who volunteered with MDI for many years and is now a staff member, says its evolution has been ‘truly amazing’ and the memories she holds dearest revolve around ‘friendships’.

Derek Farrell, another key player in the development of MDI, remarks: ‘It has thrived and now it has its own headquarters, which is a major achievement. It has earned a reputation as one of the premier organisations for people with disabilities.’

Over in Belgrade, Gordana Rajkov – who is just coming to the end of her term as a member of parliament in Serbia – says MDI has had a huge influence on people in Ireland and on EAMDA. ‘It has made a great impact on people’s lives in Ireland. It is one of the most active organisations and is always keeping this balanced approach between medical support and also supporting people in

Gordana Rajkov, pictured here at a EAMDA conference in Dublin in 1988, says MDI has been influential at home and abroad.

Hubert McCormack feels that MDI has substantially increased public awareness of muscular dystrophy. ‘People ask me who I work for and when I say Muscular Dystrophy Ireland, they say “ah yeah, I’ve heard of them”,’ says Hubert. ‘Moving from a one desk office, which is where I started in 1989, to our own four-bedroom apartment and fully functional office is unbelievable. There is a very efficient youth service, a very efficient family support service and a network of branches around the country which are all reasonably active in their own ways.’

Dr Orla Hardiman says MDI has been a great advocate for patient care and integrated services in the health sector over the years. She also feels the organisation has suitably widened its focus to encapsulate all the neuromuscular conditions.

‘When I knew them first they were very focused on Duchenne muscular dystrophy because some of the founder members had been personally affected by Duchenne. But over the years their role has appropriately evolved and they are quite a broad church now.’

She also credits the organisation with maintaining a balanced approach towards supporting both research and services. ‘We shouldn’t lose sight of the fact that people want a cure, but I think we also shouldn’t lose sight of the huge importance of providing decent and adequate services.’

MUSCULAR DYSTROPHY IRELAND 69

Orla says MDI has a pivotal role in supporting families and particularly in helping to normalise the lives of young people – and that this must continue in these difficult times.

‘Particularly now, with the cutbacks, the voluntary sector is having to take on and bridge a huge gulf that’s happening between what people should be getting and what people are actually getting.’

On a broad note, she says the presence of people with muscular dystrophy at high levels within the organisation is a huge asset. ‘It gives a perspective that you wouldn’t get otherwise and I think that’s very powerful. I have learned a lot from them. I have learned a lot from Joe [T Mooney] and also from members of the Board, many of whom have disabilities.’

Antoinette Roche.

Lots of things have changed in MDI over the years but the commitment and reassuring presence of administrator Antoinette Roche hasn’t been one of them. Antoinette joined MDI in February 1988 on what was a short-term contract but her potential and hard-work were recognised and she remains with MDI to this day.

Indeed, Antoinette has a unique standpoint on MDI’s development over the years and below she takes a short walk down memory lane…

In 1988, I went to the Fas training and employment authority looking for work and they set up an interview with Muscular Dystrophy Ireland and Derek Farrell, who became my boss. A lady called Beryl Ryan also worked in the office in Monkstown.

Before I attended the interview I looked up muscular dystrophy in the dictionary and it said ‘wasting disease of the muscles’ - the word ‘disease’, as I would learn over the years, became a politically incorrect term. I had never heard of this condition. Back in 1988, technology wasn’t what it is today and we had a landline phone and a golf ball typewriter (it would be considered Stone Age by the kids of this new world of ever-changing technology).

70 MUSCULAR DYSTROPHY IRELAND

As mentioned, I started with MDI on a Fas scheme on a one-year only contract known as a Social Employment Scheme (19.5 hours per week), three days per week in February 1988 in the office which was then in Monkstown. We shared it with the Union of Voluntary Organisations for the Handicapped (now known as the Disability Federation of Ireland). I was only there a few weeks when operations were moved to a prefab in Christchurch Place, Dublin. This would have been when I met Judy Windle who made a huge impact on me - she was a true professional and a great lady to work with. I am fond of her to this day and I am very grateful to her in respect of becoming a permanent parttime member of staff with this organisation. When the one year contract expired she asked me if I would like to stay on with MDI on a part-time basis on a similar salary as Fas had been paying (funds were low).

The rest, as they say, is history. About one year after I started a man called Hubert McCormack was employed by MDI. He is probably one of the reasons I’ve stayed so long with this organisation. I think we just clicked straight away. Little was I to realise he would become my constant companion and mentor over many years together. He taught me all I know about computers (no easy task I can tell you, I am not an easy student!). His computer skills are second to none. He is one of the most amazing people I have ever met - he never lets his disability deter him from living a very full and very happy life. He truly is an inspiration to me and I love my ‘Hube’ as I affectionately call him.

One of the things I remember about the office in Christchurch Place was protesting outside - our desks etc were out on the street in a protest about the lack of permanent office space for struggling voluntary organisations such as ourselves. I think we even managed to get a slot on RTE news that evening.

We moved again - this time to Carmichael House. We started off with one office and we also got a new boss, Catherine Hickey. I feel this lady was instrumental in helping MDI become a professionally-led organisation and I think it very important that herself and Judy Windle get the recognition they so deserve. We eventually got a second office in Carmichael House. It would have been around this time that we hired an Information Officer and shortly after that our first Family Support Officers, as they were then known, came on board. The hiring of Youth Officers followed.

In August of 1997 I took five months’ maternity leave after the birth of my son Leon. I returned to work in MDI in January of 1998.

We moved again, across the road to Coleraine House – more space and more workers. MDI was growing. Joe T Mooney became Director of MDI in 2001, I do believe. He too has worked tirelessly for MDI over his many years with us. At some point we moved again, this time to 71-72 North Brunswick Street which had even more space. I personally loved those offices as they were our biggest at that point. I spent six happy years in the heart of the city centre – great for the retail therapy!

The biggest move had yet to come, and it happened in April 2011 when we moved to our biggest and first permanent home at 75 Lucan Road, Chapelizod, Dublin 20. It’s a large bungalow designed first and foremost to be fully wheelchair accessible with an apartment upstairs. We have settled well here and any newcomers are suitably impressed with it being so wheelchair-user friendly.

There’s a nice garden too.

Going forward, I feel MDI really needs a famous patron to catapult us into a world where even more people know who we are and what we are about.

Jimmy Murray, Hennie Walsh (MDI’s first family support worker) and Hubert McCormack.

I feel I cannot finish without mentioning the long ongoing association I have with Jimmy Murray, Florence Dougall, Joe Jameson and Martin Naughton, to name but a few. Many staff

have come and gone over my many years with MDI. I think we have been exceptionally lucky with all the staff both past and present - there is great camaraderie and many a lunch time you will hear us talking and laughing together.

The one person I hope will never leave my side at MDI is, of course, my mentor and life-long friend Hubert – thanks my Hube.

Next year, come February, I will be working with MDI 25 years and although I may complain about this and that I wouldn’t still be here if I didn’t get some enjoyment. I hope I’m doing some good for this worthwhile organisation, which is my home from home.

Indeed, MDI remains a home from home for many, and its staff, members and supporters continue to impact lives. The following six MDI members took time out to explain what exactly this means for them:

MEMBER INTERVIEW - SAMMY BRILL Sammy Brill is captivated by the life and times of Marilyn Monroe, a fact that bears testimony upon entering her cosy home in Athlone, Co Westmeath. There are so many pictures of the Golden Globe-winning actress that you can almost feel Monroe eavesdropping on all that’s said. Sammy explains that she has long admired the classical beauty and talent of the late actress and notes how these attributes concealed Monroe’s considerable inner struggles. Sammy feels that people should ‘try to be happy’, but she understands that this can be hard for some.

Aside from a fascination with Marilyn Monroe, Sammy adores Bon Jovi (‘I almost met them once’), loves socialising, and hopes for a bit of romance. She sounds every bit the bubbly 33-year-old that she is, and yet she has faced challenges above and beyond her years.

Sammy was born with Anterior Horn damage, a neurological condition affecting the spinal chord’s nerve cells and the voluntary skeletal muscles of the muscular system. It is allied to muscular dystrophy and has resulted in Sammy being a wheelchair user since infancy. ‘Mum knew there was something wrong,’ says Sammy of her early years. ‘When I was crawling, I’d crawl with my hands twisted.’

In more recent times, Sammy has come close to death, endured a tracheostomy, spent a considerable time in hospital and MUSCULAR DYSTROPHY IRELAND 71

battled with the HSE for home nursing care. She credits the strength instilled in her by her mother and late father – and the support of MDI, where she is a Board member – with helping to see her through.

Originally from London, Sammy emigrated to Ireland with her mother at the sensitive age of 15. Her new home was near the small village of Lecarrow, Co Roscommon. It was a severe culture shock. ‘There were two pubs and a shop, and we lived two and a half miles out from that!’

But aside from practical supports, Sammy suggests that it has been the moral encouragement she’s received from MDI that has mattered most. ‘They gave me hope,’ she says. ‘It’s when I met them that I thought it was possible to move out [into independent living]...that’s kind of when I started fighting for my rights with MDI’s help. Joe [T Mooney, MDI chief executive] would have the same type of personality in terms of fighting for what we believe in.’

This support was especially vital when Sammy was confined to Portiuncula Hospital for nearly two years due to a lack of funding towards home nursing care. Her situation only changed when she personally relayed her case to the then health minister Mary Harney, who was opening two new units at the hospital in February 2010. Sammy got the home care she needed in May of that year and continues to live an independent life with the support of family, friends and carers.

Sammy says MDI’s support has echoed the encouragement she had received from her parents, who would always tell her to ‘get out there and get on with it, you are who you are’.

She strongly credits MDI as having people who understand the condition at the heart of the organisation. ‘We know what other people are going through; well, we kind of know,’ she says.

Sammy Brill, Co Westmeath.

At the age of 20, she went on to study for a social studies certificate for two years at Athlone IT and it was just after this period that she first became involved with MDI. Her initial contact with the organisation was through the family support service and she remembers MDI organising a carer for her one weekend so that she could travel to Galway.

‘I was able to do whatever the hell I wanted,’ she says, of this empowering experience. ‘I went to a night club, I went out. It was like...freedom.’

Sammy is presently serving on MDI’s Board, a platform which has helped her cultivate a voice. She is glad to have become involved, but initially felt a bit reluctant to put her name forward. ‘Siobhan [Windle] forced me to go on it,’ she says with a smile, before adding: ‘Not forced me, but coerced me.

I’ll think of another word – persuaded!’

In May 2008, Sammy headed to Brussels to attend the European Conference on Poverty and Social Inclusion as part of a wider European Anti Poverty Network (EAPN) network, with which she was linked by MDI. Sammy kept notes of the trip:

She has since been on numerous group trips with the organisation, including to Madrid, Lanzarote and Malaga and has benefited from MDI’s loaning out of equipment including wheelchair-accessible vans.

72 MUSCULAR DYSTROPHY IRELAND

Our group was Housing and Social Inclusion. We listened to all the presentations that had been prepared. I found them very interesting. Hearing that people all over Europe were experiencing the same problems and that Poverty and Social Exclusion was a

very wide problem...It was at this point that I really truly believed how important what I said and did really was. Michael, who had come representing the Simon Community in Ireland, and I did our presentation together...We spoke about the problems with Housing and Social Inclusion for homeless people, refugees, Travellers and disabled people in Ireland. I was very nervous but was very pleased when I had it done.

One matter which Pat has been discussing with Trudy recently is an upcoming visit to a doctor. This is a serious issue for Pat due to the disrespectful way in which he and his family were treated by the medical profession following his diagnosis with limb girdle muscular dystrophy three decades ago.

MDI has given her the encouragement to ‘pursue what I already had in me and use it a bit more...I am a fighter and I always fight. I fought to stay alive.’ Of course, there are days ‘when you say, for f**k’s sake, just give me what I need and stop making me fight for it’, but Sammy says her inner desire to improve her situation always kicks in.

‘I feel sorry for people who don’t have a big mouth like me and don’t fight like I do,’ she says. ‘Some people just don’t have it in them, don’t have the energy or are just not physically able. I wish I could fight for everyone.’

MEMBER INTERVIEW - PAT DOOCEY Pat Doocey from Middleton, Co Cork always looks forward to the visit of Trudy Renshaw-Walsh, MDI’s Family Support Worker in the Southern Region. Indeed, the visits have led him to a new friend.

‘There was another member down here in Middleton who I didn’t know about, her name is Mary Kearney,’ outlines Pat, who is 43. ‘Trudy used to come and meet us individually, and one day she said, why don’t the three of us meet up. So the three of us have been meeting together for about six years, every two months. It is great; I really look forward to it. We have a chat, we have a cuppa, we go for a meal normally, and if there’s anything we have to talk about to Trudy we do it there and then. It’s mostly to get me out of the house. We just get on really well.’

What if there is a concern that one wishes to discuss confidentially?

‘Trudy would call to me [beforehand] if I had something I needed to talk to her about or if there was something Mary wanted to talk to her about. She’d always give us time,’ explains Pat. In addition, there are nights out and outings organised which local members can go on if they wish.

Pat Doocey, Co Cork.

‘I was diagnosed 30 years ago and I haven’t seen a doctor since. I was thinking I should go and see someone to find out what’s the latest,’ says Pat. ‘All I remember is doctors being ignorant – zero manners, zero compassion. I remember when I was diagnosed in Ireland the same doctor would not even come out and meet my mother. He got a junior doctor to tell her…she will never forget it.

Trudy tells me things have changed, I hope they have. You don’t forget things like that.’

Pat can’t fully comprehend how attitudes were so: ‘I suppose they didn’t know much about muscular dystrophy. It was complete ignorance. Maybe attitudes have changed. Back then, a doctor was like a priest or a guard. They’d look down on you and you’d look up at them...the power thing. Hopefully the doctor I go to see is not like that.’

Before linking in with the family support service, Pat also went on a few holidays with MDI. ‘In 1989 I went to Switzerland and then I went to Barcelona on a group trip with MDI. I made some good friends. They would have been the first people I had known that have muscular dystrophy.

MUSCULAR DYSTROPHY IRELAND 73

When we went on a two week holiday to Barcelona I got to know some people and I stayed in touch with them. From then on, I went on holiday nearly every second year with them. The money was tight then so they didn’t have money for holidays and we used to organise our own holidays as a group. I went to Tenerife ten years ago and I met Hubert McCormack, and over the next couple of years after that Hubert used to organise our own holiday where we’d go off in our own group...it was mostly holidays and respite to get away from home. We’d never discuss our own situations; it was just nice to meet people as a group, and their helpers.’

Indeed, it is generally not Pat’s scene to be talking about his condition. He enjoys the fact that his chats with Trudy and friend Mary centre on life in general.

‘I have known Mary for six years and we’ve never spoken about it,’ says Pat, who adds that the types of muscular dystrophy they have are completely different and it is not an issue on which they seek common ground. They just chat as friends do. Pat adds that another good friend he met through MDI is Paul Butler.

Pat says that as a youngster he had little interaction with MDI, though his mother was involved.

MEMBER INTERVIEW ORLAITH HUMPHREYS Orlaith Humphreys is a high achiever. The Foxrock woman holds a degree in history and politics, an MA in equality studies (her thesis explored the representation of disability in recent Irish film) and a higher diploma in women’s studies, all from University College Dublin.

Presently Orlaith is Secretary of Greater Dublin Independent Living and Chairperson of the Disability Interest Group in Dun Laoghaire-Rathdown. She is also a long-time member of MDI and describes the organisation as having been ‘a constant presence’ in her life as far back as she can remember. She especially enjoys MDI-organised trips to places in Ireland and abroad.

‘The thing I really like about MDI is breaks away, camps and weekends away,’ she says. ‘They are always filled with so many activities. I remember getting the opportunity to go to Madrid and to go to Denmark, which was great.’ Activities can include going to the Dogs, the cinema, shopping, comedy clubs and the pub.

The first trip she went on with MDI was to Denmark in 1997.

‘I didn’t know anyone, which possibly wasn’t a good thing! It was ten days, so it was long enough.’

‘I was a young teenager and then headed off to college and I had no connection with MDI at all, I didn’t even know they existed,’ says Pat, who holds an IT degree from Waterford Institute of Technology. ‘My mother did at the time. I know she went to meetings and stuff, but I was away down in Waterford at college and had enough to be doing.’

Pat stayed in MDI’s Home from Home apartment just before Christmas and was very impressed. ‘It’s great, a brilliant idea.

It’s all equipped out. The air mattresses, the hoists, rolling showers, it’s perfect. There’s plenty of room and I’d be up there again I’d say.’

Overall Pat is ‘very happy’ with the support he gets from MDI. ‘If there was something wrong Trudy is the person I’d ring and she is always very helpful. I also get MD News Update in the door, and it is a fabulous magazine. Hubert does a great job on it. I think they are a great organisation and very helpful.’

Orlaith Humphreys, Co Dublin.

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Her favourite break was to Madrid a decade ago. ‘Again, it was eight to ten days’ duration. I was that bit older, and I had made sure that before I went to Madrid I had met with the people who were going. We went to the Prado Museum and different places of interest. And of course we went shopping!’

Orlaith remembers that the trip was also supposed to be a cultural exchange with the Spanish muscular dystrophy group, although cultural and language barriers meant that mixing wasn’t particularly easy.

or she can call out to the house and see how you’re doing and have a chat, that sort of thing.’

This kind of support is invaluable for people with muscular dystrophy, notes James, as there can be ups and downs associated with having the condition. ‘You feel that there is somebody there if you are really down or need help with some of the [State] supports which are so difficult to access nowadays.’

Nevertheless, the chance to chat and make friendships during such trips is important, suggests Orlaith. ‘I want to thank MDI,’ she adds, ‘they have been giving me great support and have been very important to me...They have always been there whenever I’ve needed them.’

Orlaith has also been there for MDI, one could say, as she served as Public Relations Officer with the MDI Foróige Youth Group and also speaks on behalf of MDI at some events.

Her ambitions are to ‘continue on with my work’. She is kept busy and likes to keep things in the here-and-now. At the moment, Orlaith is particularly concerned about how the current economic climate is affecting services for disabled people. ‘The big issue is that they are cutting money and reducing money in the area of PAs...It’s a real need, especially in the disability area. Do they not understand that if they cut the money there will be an even bigger [monetary] need in the future?’

MEMBER INTERVIEW JAMES DOWNEY James Downey first heard of MDI in the mid-90s after he was diagnosed with limb girdle muscular dystrophy As James recalls, it was likely his doctor who put him in touch with the organisation as the internet was not commonly used at that time. His first interactions with MDI would have been through the family support service. ‘Then a few years later we had the holidays in Galway,’ he notes.

James continues to benefit from the family support service. ‘If you have a problem you can ring [the Family Support Worker]

James Downey, Co Kildare.

The social outlets that MDI offers are also vital, suggests James.

‘We have a social club at the moment. It kind of was there for a couple of months and died out a bit but we’re trying to go to the Dog Races next Wednesday night. There could be ten of us.’

James also finds the trips to Galway a particular highlight and something he always looks forward to. ‘The holiday in Galway is a huge one for me. I really enjoy it and I know a lot of the lads do as well. We just spend five or six days in Galway; we have the support of PAs, transport and we all go out together and have a good old time.’

The holiday is an annual affair, usually taking place around August or September, and 20 or so people attend. ‘They have different age groups and we’re the over 50s.’

What types of activities take place?

‘Drinking, playing cards, having meals out, going to shows, dog racing, sight-seeing, shopping – most of the things that people do on holidays.’ On such occasions, James savours the banter with the lads.

MUSCULAR DYSTROPHY IRELAND 75

‘Some of them you mightn’t have seen for months and some of them you might only see once a year. There’s a great comradeship – we’re all in the same boat and can empathise with each other.’

The chat encompasses a wide range of subjects, however, and not necessarily the issue of muscular dystrophy.

‘Politics, the weather, anything you can name,’ says James. ‘But you might meet someone who has the same form of muscular dystrophy as you do and have a right heart to heart for an hour.’

As to other aspects of MDI’s work, James says the organisation offers good support in the area of transportation. ‘If they can help out, they will help out. It’s kind of...you know they’re there if you really need them.’

James also feels that MDI has a very authentic appreciation of the challenges that members face, as quite a number of people working for the organisation are themselves directly affected by muscular dystrophy.

‘I feel they know where we’re coming from and possibly better than other organisations they are able to offer you better supports because they’ve been there and understand the pressure.’

it,’ recalls Patrick. ‘I was very excited at the time, I thought it was a sort of special island where people with muscular dystrophy got to go and play and live and do all this fun stuff...I was very disappointed afterwards to find out she was just saying ‘Ireland’.’

Patrick’s disappointment didn’t last long however, and he greatly enjoys going on respite camps even if they don’t involve trips to muscular dystrophy island. ‘A large group of us go off to somewhere around the country and just kind of chill-ax and hang out for a week. It’s always a really, really great week. It’s one of the highlights of the year...it’s very beneficial. My group would be the 18 to 25 and there would be a large number of us around 19, 20... it’s just been just about the same people bar one or two changes each year, there has been a core group there for the last ten years or so.’

On MDI camps you can ‘talk to anyone about anything, which is a little different from everyday’, notes Patrick.

Sometimes people speak about muscular dystrophy itself and sometimes not. ‘I don’t think anyone ever goes consciously with the intention of talking about it but it is something that comes up organically - maybe not always in a very serious way, more in a light hearted way.’

MEMBER INTERVIEW PATRICK FLANAGAN ‘MDI really stands out as a brilliantly run organisation that really has supported just about every need that I’ve had over the years.’

These are the words of DCU student Patrick Flanagan, currently in the second year of his communication studies degree (at time of writing).

Patrick Flanagan, Co Kerry.

Patrick, who hails from Tralee, Co Kerry, was diagnosed with a form of limb girdle muscular dystrophy at the age of seven in 1999.

It was as a child on a visit to Our Lady’s Hospital, Crumlin with his mum and dad that he first heard of MDI - although all wasn’t what it first appeared.

‘We were introduced [to MDI] by an English girl and she was talking about Muscular Dystrophy ‘“Island”, as she pronounced 76 MUSCULAR DYSTROPHY IRELAND

MDI was also supportive when Patrick, who hopes for a career in the media, was weighing up his college options. ‘The Family Support Worker in Cork was very helpful in helping us identify suitable universities and finding out what supports were available,’ he recalls.

Patrick is heavily involved in power chair soccer and was on the Ireland team at the FIPFA World Cup Finals in Paris last November, under the auspices of the Association of Irish

Powerchair Football. Power chair soccer was first developed in Canada in 1979 but only arrived in Ireland in 2003 due to the efforts of MDI. ‘I always try to give MDI the most credit for this because they did set it up in 2003,’ says Patrick, ‘so MDI is responsible for a large number of people – 100, 150 odd people – in Ireland at the moment finally having a recreational sport, an activity to engage in and play and be competitive in. MDI have a lot of credit to take for that and for a lot of other things as well.’

His parents asked the doctor if Pádraig would live and he told them he would, but that he’d lose the ability to walk. The fact that the form of muscular dystrophy affecting Pádraig would not necessarily limit his life expectancy somewhat ‘eased’ the diagnosis for his parents, but it remained a difficult time.

In fact, the confusion persisted as to the form of muscular dystrophy that Pádraig had - one doctor said it was spinal muscular atrophy while another said it was limb girdle. ‘I’m 60 years of age and enjoying life up to this day and I still don’t know [which it is], and I don’t want to know,’ says Pádraig.

The Irish power chair soccer team –which also included MDI members Aoife McNicholl from Laois, Lee Fitzsimons from Dublin and Daniel Stack from Kerry - finished ninth out of ten teams in last year’s World Cup Finals: ‘On some levels it was heartbreaking and on another it was great that we weren’t last. I went into it with two attitudes - one was I’d be delighted if we win the whole thing and the other attitude was I’d be happy if we’re not last. So I didn’t come back delighted but I came back happy that we weren’t last.’

Alongside Daniel Stack, Patrick runs a Cork/Kerry power chair soccer team called Kingdom Rebels. ‘This will be disputed but we are the most successful club at the moment,’ says Patrick.

Pádraig McDonagh, Galway.

MEMBER INTERVIEW PÁDRAIG MCDONAGH Sixty-year-old Pádraig McDonagh is a native Irish speaker who feels more comfortable speaking in his mother tongue, but the reassuring presence that MDI has in his life still vividly comes across as Béarla.

Up until the age of 15, Pádraig could ‘do everything... football, a bit of rowing’ but then he began falling down for no apparent reason. ‘I lost a bit of the power in my legs,’ he says. ‘My parents brought me to doctors and specialists but nobody knew what was wrong.’

It was an immensely confusing time. Eventually a doctor at Merlin Park Hospital in Galway diagnosed Pádraig with muscular dystrophy. ‘Who had heard of muscular dystrophy?

Nobody. What was it?’ says Pádraig of the uncertainty at that time.

The period after the diagnosis also revealed the true power of friendship to Pádraig, who grew up in Lettermore, Connemara.

‘I went in to the hospital walking and came out in a wheelchair.

I was only 16 years of age. But I had great friends and they came around on the Saturday evening and they said, ‘come to the pub’.’

In the years after the diagnosis – notably during the 1960s, 1970s and 1980s – Pádraig got great support from the Irish Wheelchair Association and says he’d love to hear from people who he met through the organisation during these years.

Pádraig, who later worked for the Centre for Independent Living in Galway, remembers first hearing about MDI through disability champion Martin Naughton. Over the years, MDI has made quite an impression on him. ‘They are the only organisation I feel I can talk to, they have more understanding of the situation of muscular dystrophy than any other organisation.’

Essentially MDI can ‘answer your questions and help you out in any way’.

MUSCULAR DYSTROPHY IRELAND 77

When the MDI van is free, Pádraig makes use of it in order to travel to various personal and social appointments – a huge resource as Pádraig, like many people with muscular dystrophy, does not have the muscle power to operate a vehicle himself.

He adds that the family support service has been blessed with brilliant individuals who are friendly and professional.

MDI’s existence means that many parents have immediate access to support and information, unlike the situation that faced his own parents in the 1960s when there was ‘no-one who could tell me or my parents anything about it. MDI is there now and it is a great help’.

As MDI commemorates its 40th anniversary, what are Pádraig’s overall thoughts on the organisation?

‘Great people, great people,’ he says simply. ‘Without them, we’d be worse off. I thank them.’

MEMBER INTERVIEW ELAINE MCDONNELL The impact of MDI today can also be expressed through the story of current Chairperson Elaine McDonnell and her daughter Aisling.

Elaine is in her second year as Chairperson of MDI, having first become involved in 1998. In and around 2000, she got together with other parents to form a Midlands Branch.

The solidarity she experienced through involvement in the branch, and the national organisation, has been very important for the family.

‘The only people who really understand are other people in the same boat...they totally get where you are and totally understand,’ says Elaine. ‘I find that solidarity a great support. I suppose, for me, I’ve put a lot of time and energy into the organisation and one of the main reasons is that the organisation has provided the only support that we get, in terms of respite, youth workers...Once a fortnight the youth worker comes to my home, does homework with Aisling or arts and crafts or baking, and for those couple of hours it gives me a break from the care of Aisling.’ This is an important outlet for Aisling and allows Elaine some time to recharge her batteries.

78 MUSCULAR DYSTROPHY IRELAND

Aisling also loves the camps which are organised by MDI. ‘Aisling will go for a week and she has an absolutely marvellous time,’ says Elaine.

Family support, liaison at the clinics, counselling, equipment, short term loans – all of these services are provided by MDI, notes Elaine.

She describes the organisation’s headquarters as a ‘state of the art facility’, its employees as ‘committed’ and Chief Executive as ‘marvellous’.

‘The idea of the headquarters - it was Joe who envisaged that for the organisation and made it happen Aisling McElligott. really,’ adds Elaine. ‘Somebody who has muscular dystrophy in that position is brilliant - he totally understands the needs of members.’

As to her own involvement at national level, she remarks: ‘I believe in giving back to an organisation. I don’t leave it to other people to do stuff. When I started on the committee I enjoyed being involved in making decisions and sorting out problems. I really believe in the organisation and I think I have something to offer...

I’m very willing to do it because I believe in the organisation.’

There are challenges ahead, notes Elaine. These include provision of services in the face of health service cutbacks and maximising the potential of the Centre of Excellence. Involving younger members and ‘enabling them to get involved’ at an organisational level is another ongoing challenge.

Elaine’s expectations for 15-year-old Aisling are that she will have a future of independent living – college, job, her own place, relationships.

‘That’s my expectation and I’d like to have that expectation for everyone with muscular dystrophy.’

It is putting expectations into action which has marked out MDI from its early days to the present time and, no doubt, into the future.

POETRY CORNER ‘A WISH

TO FLY’

By Sarah Fagan, Dundalk, aged 10

Oh! How I wish that I could fly Up so high in the fluffy sky Swoop down so low Go up so high

‘LOOK DEEPER’ Words and music: Hubert McCormack Chorus: Look deeper, look deeper, tell me what you see. (x2) Look deeper, look deeper, here’s what you should see.

Look deeper, look deeper, just another you and me.

And wonder how it is to fly

We all have the same formation, but we may not look the same We all have the same requirements, our needs may not be the same We all speak with the same tongue, but we may not sound the same We perhaps believe in God, but we may not pray the same

Fly through the clouds

Chorus:

Fly through the sky

Do not see me as being different, cause I do not look like you.

Do not listen to me differently, cause I don’t sound like you.

Do not view me as being different, cause I do not think like you.

Do not view me differently, cause I’m a person just like you

Wouldn’t you like to fly?

I look at the birds up in the sky

Oh! How I wish that I could fly

-published in MDI Magazine, Issue 15, 2000

Chorus: Regardless of what you do Regardless of what you say Regardless of what you think We’re all the same if you look deeper We’re all the same if you look deeper Chorus: (from Hubert McCormack’s CD ‘Look Deeper’, released December 2003).

MUSCULAR DYSTROPHY IRELAND 79

MDI REPRESENTATIVES AND STAFF – 2012

FAMILY SUPPORT WORKERS

Patron - Eoin Liston

Brigette Disley, North Eastern HSE Area (North Dublin) Lorraine Duffy, East Coast & South Western HSE Area (South & West Dublin, Kildare, Wicklow) Kate McGuire, North Eastern HSE Area (Cavan, Louth, Meath, Monaghan) Lisa Fenwick, Western HSE Area & Midlands HSE Area (Galway, Mayo, Roscommon) Steph Apsel, Mid Western HSE Area (Clare, Limerick, North Tipperary) Marie Kealy, Southern Eastern HSE Area (Carlow, Kilkenny, South Tipperary, Waterford, Wexford) Trudy Renshaw Walsh, Southern HSE Area (Cork, Kerry) Jonathon O’Brien, Southern HSE Area (Cork, Kerry) Paula Coyle-Carberry, Community Support Worker, North West Region (Donegal, Leitrim, Sligo)

Honourary Vice President: Matt O’Connell MDI Executive Committee (Board of Directors): Chairperson: Elaine McDonnell Vice Chairperson: Garry Toner Secretary: Jimmy Murray Treasurer: Florence Dougall Board Members: Sammy Brill, Kathy LeBrasse, Simon Jameson

HEAD OFFICE STAFF Joe Mooney, Chief Executive Officer Kate Power, Respite Coordinator Margaret Goode, Family Support / Clinic Coordinator Amy Bramley, Public Relations & Fundraising Coordinator Kim Warnock, Fundraising & PR Officer Barry Buckley, HR & Development Coordinator Hubert McCormack, Administration Antoinette Roche, Administration Karen Pickering, Information Officer Hazel Bridcut, Accounts Administrator Sinead Ni Nuallain, Reception Catriona Jones, Research & Development Intern Anthony Browne, Premises Coordinator

YOUTH/RESPITE WORKERS Sandra O’Donoghue, Eastern Region (Dublin, Kildare, Wicklow) Brian Kenna, North Eastern Region (Cavan, Louth, Meath, Monaghan) Sinead Glennon, Midlands Region (Laois, Longford, Offaly, Westmeath) Aisling Tarmey, Western Regions (Galway, Mayo, Roscommon) Mary-Rose O’Driscoll, Southern Region (Cork, Kerry)

80 MUSCULAR DYSTROPHY IRELAND

DRIVERS Darren Lyons, Eastern Region Pat O’Callaghan, Southern Region

Company registered name: Muscular Dystrophy Ireland Company registered office: 75 Lucan Road, Chapelizod, Dublin 20.

Country of registration: Ireland Company Number: 60460 Registered Charity Number: 6489 Member of the European Alliance of Neuromuscular Disorders Associations Member of the Disability Federation of Ireland Member of the Genetic and Rare Disorders Organisation Member of the Neurological Alliance of Ireland

www.mdi.ie CREDIT: This book was written and compiled by journalist Catherine Reilly and based on interviews conducted between January and August 2012 with MDI founders, members, staff and supporters. Material was also taken from archived newsletters and the present-day MDI News Update which is edited by Hubert McCormack.

Muscular Dystrophy Ireland 75 Lucan Road Chapelizod Dublin 20.

Tel: Fax:

(01) 6236414 (01) 6208663

Email: info@mdi.ie Web: www.mdi.ie