Download PDF - Commemorative Issue - MS Ireland

FOREWORD
Message from
President
Mary
McAleese
‘For half a century now, you
have been giving generously
of your time and skills’
IT GIVES ME great pleasure to send my warmest greetings to
Multiple Sclerosis Ireland on your 50th anniversary.
Throughout my Presidency I have had the great privilege of
seeing at first hand a wide range of social and community
initiatives across Ireland, which were only possible because of
the drive and effort of volunteers. I am always impressed by
their quiet dedication and desire to make a positive
contribution to their community. For half a century now, you
have been giving generously of your time and skills to advise,
help and empower people living with MS. You do not do it for
money or recognition, but out of true human decency.
I congratulate you all. I thank you for your wonderful work
and I wish you continued success in the future.
Mary McAleese
President of Ireland, Patron of MS Ireland
Message from the
Chief
Executive
HELLO AND WELCOME to the
50th anniversary edition of ‘MSnews’. It’s an incredible
achievement for an organisation that was set up by
volunteers in 1961. Fifty years on and we continue to do
the work that our founder Dr Brian Pringle had intended
us to do.
My story with the Society began six years ago when I was
appointed Chief Executive. My time here has been just one
part of the MS Ireland jigsaw, but I hope I’ve helped in
piecing that jigsaw together.
For me, there have been many highlights, both personal
and professional.
MS Ireland has played an important role in increasing the
number of neurologists in Ireland through our work with the
Neurological Alliance of Ireland. As this publication goes to
press, the HSE is recruiting 13 neurologists, and we can say
we played a leading role in advocating for and getting those
positions put in place. It’s been a job well done.
Another great achievement has been the introduction of
the Getting the Balance Right programme. My eureka
moment was matching the donation from Tesco with the
Dormant Accounts Fund, which made Getting the Balance
Right possible. I hope it will have a long-term impact on the
lives of people living with MS.
We have made improvements to the MS Care Centre, our
flagship service. We have forged closer working
relationships with many organisations including the HSE.
We have broken down barriers internally, and are
taking a more joined-up approach. Internationally, we
continue our work with the European MS Platform and
Multiple Sclerosis International Federation, and share
information with MS societies worldwide.
In terms of MS generally, during my time here, I’ve been
lucky enough to see some amazing breakthroughs in the
treatment of MS. From the introduction of Tysabri to the
more recent mobility and oral treatments, all are having a
positive impact on our lives. Certainly, we are moving in the
right direction.
In 2011, as we undertake a strategic review and face the
financial challenges that a recession can bring, we are
managing our resources to give us the most relevant and
effective outcomes for people affected by MS.
When I think of all the achievements of MS Ireland I
believe collaboration and working together is the strongest
feature. We have so many staff, volunteers, fundraisers and
friends who have worked with passion and dedication to
benefit people with MS. It is they who are the heart of MS
Ireland and should read this publication with pride.
I am stepping down as Chief Executive in October. I would
like to thank the Board, my senior management team, PA,
staff, Branches, volunteers, community groups, corporates,
the HSE and other agencies for the wonderful support
shown to me in my time with MS Ireland.
Wishing you all good health and happiness as MS Ireland
embarks on the next 50 years.
Anne Winslow,
Chief Executive, MS Ireland, 2006-2011
2
MS Ireland, 1961-2011

FOREWORD
Message from the
Chairman
AS WE CELEBRATE 50 years of
MS Ireland I think it is fitting that
we mark the anniversary with a
look back at some of our successes over the years.
The MS Society has played a different role in each of
our lives, and this document highlights some of those
who have given much to, and got much from, the
organisation over the years.
I was diagnosed with MS in 1985 and became involved
with MS Ireland in 1993. At my first meeting of the Cork
Branch I was elected Treasurer. As the years
progressed, I became involved nationally, first acting as
a Branch representative on the Council and then being
elected onto the Board. I think it is vital to get people
from the Branches to sit on the Board, and I hope this
will continue in years to come.
MS affects the whole family, not just the individual,
and I am pleased that MS Ireland has recognised this,
changing its mission statement to include all people
affected with MS. At various times, MS Ireland may
have been important to you. The beauty of our
organisation is that the individual can decide for
themselves when they dip in and out.
We are greatly indebted to Dr Brian Pringle and all
the others who co-founded the Society in 1961. At that
stage, the Irish public was mostly ignorant about the
disease. Yet these individuals started to advocate for
the rights of people with MS. From demanding better
access and grants for people with disabilities to
achieving the postal vote, the Society has truly played
its part in shaping the future of Ireland.
In a broader sense, we have punched above our
weight on international boards, and continue to be
respected by members of these organisations.
I’m very hopeful for the future of people with MS and
that a breakthrough will come soon. I honestly believe
there will be no MS Society in 50 years’ time as there
will be no need. But until then I know the Society, its
staff and volunteers will continue to perform at the
highest professional level and I hope you will continue
to use it when the need arises.
Allen O’Connor,
Chairman, MS Ireland, 2003-2006, 2009-2011
CONTENTS
How it all began 4-5
Society developments 6-15
A history of MS 16-17
Branches and regions 18-24, 29-41
A special timeline 25-28
Advocating for MS 42-43
The MS Care Centre 44-45
Researching MS 46-48
Significant collaborations 49-51
Providing information 52-53
Fundraising fun 54-55
17
5 19
45
THIS VERY SPECIAL publication has been produced to
celebrate the 50th anniversary of MS Ireland. What
follows is a collection of events and activities that have
taken place over the past half century. However, MS
Ireland is an organisation made up of people without
whom it could not function. With this in mind,
throughout the document, you will find the stories of
people who have all played some part in the Society
over the years. Each has their own special story to tell
about their MS Society. What’s yours?
www.ms-society.ie
3

ORIGINS
How it all began
MS Ireland started as it meant to go on – with a passion for improving
the lives of people with MS
IT WAS SOME time in February 1961 when the first seeds of
the Multiple Sclerosis Society of Ireland were officially sown.
In that month, a newspaper advertisement called on
volunteers to attend the inaugural meeting at Lumsden Hall
in Dublin, which they did in good numbers.
At that meeting, led by renowned physician Dr (Robert)
Brian Pringle, a provisional council was elected and ideas
discussed. Dr Pringle, along with other founding members,
wanted to improve the lives of people with MS and provide
information on the disease.
Over the next four months, the Society enlisted the help of
Dr Pringle’s brother, solicitor Denis Pringle, to draft the
constitution and rules.
Dr Pringle began to make contact with MS societies in
England and further afield to share best practice, and the
Society approached the Organisation for Rehabilitation to
secure a room for its meetings.
The Multiple Sclerosis Society of Ireland’s first annual
general meeting was held at 43 Fitzwilliam Square in Dublin
on 8 June, 1961.
The founders and MS Ireland’s first volunteers are listed in
the minutes as: Mr J F Kempster (Chairman); Mr W A Ryder
(Honorary Treasurer); Miss L U Keating (Honorary Secretary);
and Council Members Miss C Carney, Mrs Harman, Miss
Lahiffe, Mrs O’Reilly, Mrs O’Loughlin, Mr E Lyons, Mr J F
Mangan and Mr Breen.
At that AGM, the aims of the Society were confirmed: to
help the medical profession conduct research; to provide
information about MS to its members and the wider public;
and to improve the living conditions of its members by
encouraging them to take part in social activities and become
active members of the community.
Despite working quietly in the background for the first
eight months of its existence, it wasn’t until October 1961
that the MS Society introduced itself to the wider public at its
first public meeting.
On 20 October, the venue for the inaugural public meeting,
the Overend Hall at St John Ambulance Brigade
headquarters on Upper Leeson Street in Dublin, was so
packed that some people had to stand.
It has been 50 years since that meeting, and while much
has changed in MS Ireland, the passion to volunteer and the
desire to learn about all facets of MS still pulsates through
the organisation... and hopefully always will.
My Society
- William Lonergan
I FIRST MET Dr Pringle at an MS Ireland meeting in the
late Seventies. At that stage he was retired from the
Society but continued to have a great interest in it. He
was a great man with a big presence. He called a spade a
spade and was well respected for it.
I was diagnosed with MS in 1975 at the age of 30. I soon
learned of the MS Society of Ireland. Despite initial
protestations, I joined my local Branch in 1976.
For the past 29 years, I have had a connection with the
Society. I was first elected to the Executive Council in
1983/84. My first contact with the international movement
was in 1989 when we went to New Delhi to make our play
for the international conference in Dublin in 1990. I was
Vice-Chairman then. In early 1990 the Chairman
Laurence Blake resigned, and I moved into his role, which
meant I was Chairman at the conference.
MS has changed hugely since my diagnosis 30 years
ago. The production of Tysabri was like finding gold, and
the outlook for people with MS has improved greatly.
I did extremely well for the first 20 years, and kept
working. I’ve been going to Lourdes regularly since 1975
and I’ve always had a fierce belief in the work Our Lady of
Lourdes has done.
Everyone has to find their own way. Mine was to get
involved in the MS Society and play an active role in
dictating my own future. I like to think I’ve done that.
4
MS Ireland, 1961-2011

ORIGINS
A true gent
Dr Brian Pringle, founder, MS Society of Ireland
A FORMIDABLE MAN with a desire to help people, Dr
Brian Pringle was a major driving force in the foundation
of the MS Society of Ireland (his first name was Robert
but he was known as Brian since childhood).
He had a great interest in MS. Not only was he
concerned about the disease but he was also concerned
about its effects on individuals and their families.
Born in 1905, Dr Pringle was educated at Castle Park
School in Dalkey before attending Haileybury College in
England. Upon receiving a scholarship for a classics
degree, he went to Gonville and Caius College at
Cambridge University.
He’d always wanted to be a doctor, a surgeon in fact,
and at the time a classics degree wasn’t an unusual
thing to do before going on to medical training. Upon
graduation, he became clinical assistant at St Thomas’s
Hospital in London.
Dr Pringle’s illustrious career saw him become house
surgeon at South Devon and East Cornwall Hospital
before moving back to Dublin where he would take up
the roles of physician at Mercer’s, Dr Steeven’s and
Stewart’s hospitals.
He had a keen interest in occupational medicine, and
was subsequently appointed chief medical officer at the
Guinness Brewery. At the time, the Guinness family were
unusual employers due to their philanthropy and focus
on the well-being of staff. They hired doctors to take
care of their employees, many of whom lived in the
poverty-stricken area of inner city Dublin.
Dr Pringle’s daughter, Amanda Park, recalls: “His
patients adored him. He was very much an old-school
kind of doctor who had time for people.”
Perhaps it was at Guinness that Dr Pringle developed
his desire to improve the lives of people with illnesses.
He advocated for better treatment for patients in
hospitals, had a 50-year relationship with St John
Ambulance and was affiliated with both the British Red
Cross Society and the RAF Benevolent Fund.
“In the very early part of my life my father was more
involved with St John Ambulance. I always understood
that he set up the Society because he saw so many
patients coming into him and realised there was so little
help for them,” says Ms Park.
Behind every great man is a great family, and Dr
Pringle was part of a very happy family. He was married
to his wife Jane for 56 years, and they were described as
inseparable. They had two daughters – Gemma and
Amanda.
His daughter Gemma Boyd Maunsell has fond
memories of him and remembers his commitment to the
Society and other causes.
“He was a great father. He was a very kind man, well
adjusted and wonderfully unnerving. He cared about the
way people should be treated,” she recalls.
Amanda and Gemma remember both of their parents
actively participating in the Society.
“They used to go together to conferences in other
countries to try to glean ideas and talk with people who
were doing the same sort of thing,” says Ms Park. “They
threw themselves into the whole thing.”
The Society was, of course, just one part of Dr
Pringle’s life. He was a keen tennis player, and at one
stage was one of Ireland’s leading squash players. At
various points in his career, he was also medical officer
with the Commissioners of Irish Lights, medical advisor
to the Bank of Ireland and a lecturer in occupational
health at Trinity College Dublin.
Speaking at MS Ireland’s Pringle Lecture in 2010,
Professor Michael Hutchinson, who first met Dr Pringle
in 1978, said: “I would sum [Dr Pringle] up as a philanthropist,
a man who loved people and did good things.”
Ms Park says: “He was a very gentle, thoughtful
person. I don’t say that just because he was my father.
He’d never tell you what he’d done and he’d done a lot;
the MS Society was one of those great achievements.”
www.ms-society.ie
5

DEVELOPMENTS
In good
company
From its inception in 1961, the MS Society was driven by a growing
cohort of dedicated and visionary members who ensured it gathered
momentum decade by decade
FOR THE FIRST few years of its existence, the MS Society
operated on a purely voluntary basis. It concentrated on
bringing people into the Society and established a register of
people with MS to identify what they needed assistance with.
By 1967, 466 people had registered.
SIXTIES
In 1963, the Society registered as a charitable organisation for
income tax purposes. The following year, it moved into offices
in Merrion Square and appointed its first paid member of
staff, a part-time secretary to work in the office five mornings
each week.
Fundraising was a serious concern for the fledgling
Society. The first ever Flag Days were held in the Sixties, now
a staple earner. Irene Brindley, one of the attendees of the
first meeting and an active volunteer, recounted the Society’s
first flag day activities in the 40th anniversary edition of
‘MSnews’.
“[We started out in] borrowed premises in Pearse Street –
old, rickety, lit by gas light. Loudspeaker on car roof, hoarse
voices yelling ‘Help the MS Society'. We looked on flag days as
a sort of combat – our team versus the public.”
As early as 1965 an appeal was launched for funds to open
a rest centre. At the launch Dr Brian Pringle said that the
Irene Brindley, co-founder of the Society; and Lord Iveagh of the
Guinness family who was the Society's first President in 1969
centre was not an attempt to cure – “that is just not on the
cards at the moment”.
The Society hoped to buy a house in Clontarf to be used as a
day centre. This, it said, would enable people to have a change
of surroundings for brief periods.
In 1969, Lord Iveagh, who was chairman of the Guinness
Group, became the first president of the Society. He was also
honorary treasurer of the Irish Heart Foundation.
‘MSnews’ was first published in the Sixties, giving readers
the opportunity to learn of developments in MS and the
Society. The readership was very active, and contributed
poems, brain-teasers, recipes and quotes.
Cecil H E Chamney, Honorary Secretary of the MS Society in the
Seventies
NEWS BITES
n In 1964, a World Rehabilitation Congress was held in
the RDS in Dublin, which was attended by members
of the Society who “manned an attractive stall”.
n In 1966, UK TV personality Ted Moult appeared on
‘The Late Late Show’ and promoted the Society. It is
unclear what his connection to MS Ireland was.
n A women’s soccer festival was held in Dalymount
Park, which raised the profile of the Society through
the TV and radio coverage it garnered.
6
MS Ireland, 1961-2011

DEVELOPMENTS
SEVENTIES
In 1972, a new Constitution and Rules were adopted;
these went on to be amended in 1975, 1980, 1989 and
1992.
The formation of Branches began in earnest. At the
1975 AGM, it was noted that Branch representatives from
Ballina, Galway, Kilkenny, Limerick, Meath and
Westmeath attended. It was envisaged that the Branches
would become autonomous but work “harmoniously” with
the Council.
Throughout the decade, fundraising grew, which helped
support the emerging services of the Society. In 1974 the
Society introduced a car sticker and brooch, which were
available to buy through the Branches and National Office.
The sticker was a steal at 10p and the brooch a mere 25p.
The distribution of ‘red boxes’ became popular as
volunteers were asked to place the collection boxes in
local shops and businesses. Flag days were the most
lucrative activity of the decade. In 1976 the Society made
₤14,536 from flag days around the country.
In 1975, the Society held its first holiday for people with
MS at the Central Remedial Clinic in Clontarf. Three years
later, it set up a holiday committee to administer £15,000
for members' holidays.
Practical solutions for people with MS were a strong
focus of the work of the Society in the Seventies. A
number of exhibitions were held, and ‘MSnews’ was full of
helpful information about aids, appliances and mobility.
One of the talking points of the ‘Rehabaids 1976’
conference was the demonstration of the ‘possum
typewriter’, which was operated by blowing or sucking
into a tube. It was very novel at the time.
Research was a significant feature of the Seventies for
the MS Society. The motto ‘Help to Unlock the Mystery of
MS’ was adopted, along with a key symbol. The first
dedicated research fund was established in this decade,
and in 1975 it was agreed to donate £5,000 each year to
research.
NEWS BITES
n In 1975, MS became a recognised disease on the
Health Board’s Long Term Diseases and Disabilities
scheme. This gave people with MS access to a variety
of free medications, equipment and treatments.
n In 1976 the Society held a national ‘Day of Prayer’
for people with MS.
My
Society
- Paul Hogan
I GOT INVOLVED with the MS Society in the late
Eighties. At that stage I’d had MS for a number of
years, having being diagnosed with the primary
progressive form of the disease in 1972.
When I was diagnosed I was shocked but I went on
working as best I could. Eventually it came to a point
where I had to retire. I had to assess what I was going
to do next. I live in Sandymount and at that time the
headquarters of the MS Society was at the bottom of
the road. The rest is history.
Throughout the years, I’ve had the pleasure of
being involved in a number of developments with the
organisation.
I was on the Board of the Care Centre in Rathgar
and was involved with the merger of the Care Centre
and the Society. It was a longish process and
sometimes I thought we wouldn’t be able to carry it
off, but in the end we did.
In 1990 I was involved in bringing the international
conference to Ireland, which was a huge event for the
organisation and one of its highlights to this day.
In the early Nineties, I was chosen to lead the small
committee for a strategic review, which we presented
to the Board in 1992. It was a clear strategy that we
wanted, and we insisted that we bring unity to the MS
movement, with one voice operating.
Today, I sit on the strategy committee, and will play
a role in formulating the upcoming strategic review.
I’m also on the nominating committee, which is really
to screen potential Board members, make
recommendations to the Board, and hopefully decide
who might be invited to become a member.
Most importantly, I made wonderful friends over
the years, and I’d put that at the top of the list of
benefits from the organisation.
The Society for many people is an insurance policy.
It is there when you need it, but hopefully you won’t.
It’s a very professional organisation; there’s no
doubt about that.
www.ms-society.ie
7

DEVELOPMENTS
My
Society
- Sean Murphy
My
Society
- Maura Lillis
MY WIFE JOSEPHINE was diagnosed with MS in 1975
just after the birth of our first son John. That had a
deep effect on our lives at the time.
However, a visit from the Society’s Community
Worker gave us hope for the future. Pat put us in touch
with the local Cork Branch, who visited us in our home
and informed us about its work.
It took us two years to get involved with the local
Branch, as neither of us was ready to do so at that time.
An invitation to the Branch Christmas dinner in 1978
was our first involvement.
What I remember most about it was that, in order to
save money, the Branch had done a deal with the hotel
regarding food and waiting staff; the hotel would cook
the food and the Branch would serve.
Yes, my first introduction to the Society was as a
waiter!
In 1979 I was co-opted onto the Cork Branch and
since then both Josephine and I have been involved with
all aspects of the Branch's work.
I was Assistant Treasurer, Treasurer and Chairman
from 2002 to 2005, and this year I am back again as
Treasurer, assisted by Katherine O’Flynn, due to the
size of our Branch.
In 2005 I was elected to the Board of MS Ireland, a
position I truly value.
Looking back over the years, I see a different society
from the time I first joined; now we have 38 local
Branches, where volunteers are doing great work for
people with MS in their area.
We now have 10 excellent Regional Offices, an
amazing Care Centre and a professional National Office.
The staff is doing excellent work in these economic
times.
The future is looking good. We all, ie the Resource
Centre, Regional Offices and Branches, can work
together to make this Society the best for people with
MS and their families.
SOME YEARS AGO, a friend asked me if I would be
free to help with voluntary work for the MS Society.
I readily agreed and am happy that I have continued
to do so since.
Admittedly, I didn’t know very much about MS
then but, in the meantime, I have acquired a store
of knowledge.
I am involved mainly in the South Dublin Branch –
a very active group indeed. Having served on the
national Board for a year, I am now the council
representative for the Branch.
We hold committee meetings regularly
throughout the year, when we discuss all relevant
matters such as research, therapy, social events,
holidays and fundraising.
Apparently, in earlier days, only people without
MS would take part in these discussions but this
does not apply any longer.
The late Brendan Kenna, founder of the West
Dublin Branch, was one of the first members who
suggested that people with MS were quite capable
of becoming actively involved. In fact, Brendan’s
wife, Sarah, his sons and family are still very much
to the fore.
As we are aware, the founder-members of the
Society in 1961 included Dr Brian Pringle, Irene
Brindley and P Ervin Stewart. They worked
tirelessly in the interest of people with MS and were
always available to give any help and advice that
could be beneficial.
In later years, the MS Care Centre in Bushy Park
was opened and began offering respite to people
with MS. I believe this is a wonderful facility and is
much sought-after by members who like to have a
break there once or twice a year.
MS Ireland has evolved in the same way as other
organisations and is appreciated by its members
who make the MOST of LIFE and the LEAST of MS.
8
MS Ireland, 1961-2011

DEVELOPMENTS
Mike Murphy; Jackie Johnston, Member of Welfare Advisory; Dr Brian
Pringle, Founder, MS Society; and Mary Kirk Allen, Honorary
Secretary, MS Society, at the joint Health Education Bureau/MS
Society press reception on 12 July, 1982
EIGHTIES
The biggest development of the early Eighties was without
doubt the emergence of people with MS as members of MS
Ireland’s Council and Executive Committee. People with MS
were considered invalids who couldn’t help themselves – a
view of people with disabilities that permeated Irish society.
Paul Hogan, ex-Board member and person with MS, says:
“For many years, the MS Society was operated with the
charitable idea that it needed to look after these ‘unfortunate
people’. Then, there was no question of these ‘poor
unfortunate people’ being involved in the organisation. It was
regarded as an impossibility.
“The big change was people with MS discovering
themselves and taking over and running the Society. There
was a whole revolution.”
That revolution came about in 1982, 21 years after the
Society’s inception, when some members with MS got
together and agreed that Mary Kirk Allen would go forward
for the role of Honorary Secretary.
She recalls: “I met with ferocious opposition from people
who didn’t have MS. There was debate going backwards and
forwards across the room. The candidates weren’t allowed to
speak, so everybody was speaking about us. Back in those
days they used to call us patients; they referred to ‘our
patients’. There were people who were doing very good and
useful work and raising money but it was in a charitable way
and at that stage we weren’t interested in charity. We just
wanted to get on with our lives, and mostly what we wanted
was information. Eventually it went to the vote and was
elected.”
After Ms Kirk Allen’s election a number of other people
with MS were elected to council. Within a year, the MS
Society had its first chairman with MS in its 22-year history
when Tom Connors was elected in 1983.
In an interview in June 1983 in ‘The Irish Times’, Mr
Connors said having MS was “no immediate qualification for
the job” but conceded that his election was “an indication of a
move away from the old ‘tea and sympathy’ approach
towards a more positive outlook on the disease”.
In 1982, the Society appointed its first Development Officer,
Mervyn Taylor, who, according to Ms Kirk Allen, was very
important to its development.
“The name MS Ireland was born some time in the early
Eighties when the description of the organisation as a
‘society’ was beginning to sound archaic,” Mr Taylor recalls.
“It was around that time the term ‘patient’ died out, as
younger people diagnosed with MS organised into self-help
groups and challenged their effective exclusion from full
participation in some Branches. A lot of attitudes were
challenged in those years.”
By the end of 1982, the Society decided to set up new office
structures and move to established community services by
introducing community workers to support members.
It also purchased premises at Sandymount Green, and on
27 May, 1983, opened its headquarters there (moving out of
the very inaccessible Merrion Street offices).
In 1983, a five-year development plan was launched after a
Welfare Advisory Report put forward priorities for staffing,
counselling and residential care.
The Eighties represented a turbulent time for the Society,
which experienced both organisational and financial
difficulties. This turbulence was also experienced by
members, as harsh State cuts early in the decade
particularly affected people with MS.
Yet there were many people who made everlasting impacts
on the Society during this time.
“Norah Draper of the South Dublin Branch led a long
campaign for the postal vote for people with disabilities,”
says Mr Taylor.
“The architect Peter Stevens played a leading role in
highlighting the need for better grant schemes to enable
people to make appropriate alterations to their homes and so
continue living in them rather than in institutions. Declan
Roche, a psychologist, helped get the counselling service
under way, and among the first trainees was a beautiful and
noble spirit Charlotte O’Connell (nee Von der Schulenburg)
whose father had plotted against Hitler.
“Tom Breen, whose father had MS, and his wife Mary
Lohan were drivers for change, and solid figures like Leo
Markey helped keep us rooted in the hard realities of finance,
as did the formidable administrator Vivienne Lloyd-Blood.”
Throughout the Eighties a number of internal reviews took
place. A professional review committee was set up in 1988,
and an organisational review was carried out by Stokes
Kennedy Crowley in October 1989.
In the review it was recommended that the Society be
incorporated as a company.
www.ms-society.ie
9

DEVELOPMENTS
their support to the MS Society and appeared on TV and
radio shows. TV personality Mike Murphy helped the
campaign, as did Niall Tobin and Maureen Potter.
In 1989, the Society’s long-term ambition to open a respite
centre was finally realised when the MS Care Foundation
was formed and purchased a premises at 65 Bushy Park
Road in Dublin.
Community Workers Mary Leonard, Michael Shemeld, Josephine
Tinneny, Ann O’Kelly and Sean Megahey with Welfare Services
Coordinator Maureen Gilbert in 1989
Research continued to be the focus for the Society. In 1981
it opened a research laboratory with St Vincent’s Hospital and
in 1983 the Medical Advisory Committee gave members an
update of 11 projects being conducted in Ireland. A special
research edition of ‘MSnews’ was published in 1987.
The Society continued to give voice to the concerns of
people with MS. Capitalising on the 1982 ‘Year of the
Disabled’, it launched a Housing Grants campaign to
pressurise the Government to adequately fund the cost of
housing adaptions for people with MS. The Society also joined
forces with the Irish Wheelchair Association in 1983 to lobby
on residential care, and made a submission to Dublin City
Council on the access issues of people with MS.
The Eighties saw a number of high-profile activities for the
Society, all planned to highlight the situation of people with
MS. In 1982, to coincide with the Society’s 21st anniversary, a
public awareness campaign was launched. A number of
members with MS appeared on various TV shows. In 1988 RTE
produced a documentary called ‘Not So Different’ to highlight
the challenges faced by people with disabilities.
Over that period a number of famous personalities also lent
NEWS BITES
n In 1981 the Society conducted research on the living
conditions of people with MS. Some 314 people
responded. The survey found that only 10.6% of
people with MS were working, while 10% lived in
institutions.
n In 1985 Dr Brian Pringle, our founder, met Pope
John Paul II.
n The first Pringle lecture was given in 1989 by Dr
George Ebers of Canada in honour of the Society's
founder who had died two years previously.
Our
Society
CARLOW-BASED COUPLE Ned
and Margaret Burke both have
a long-standing relationship
with the MS Society –
Margaret and Ned Burke
with their five children; something they credit with
the photo and an article strengthening their own
by the couple appeared in
a 1990 issue of ‘MSnews’ relationship.
Margaret was diagnosed with
relapsing-remitting MS 29 years ago. She and Ned have
been very active in the Society ever since, with Margaret
currently sitting on the organisation's Board.
Although she experienced symptoms as far back as
1976, it was some time before Margaret was diagnosed.
“I was getting numbness in my face and back,” she says.
She was put on Valium, which made her worse, but her
symptoms did subsequently subside.
Six years later, she began experiencing symptoms
again. This time, while expecting the fourth of the
couple's five children, Margaret was told she had MS.
Having worked as a nurse, Margaret had seen MS both at
its mildest and its worst, so she knew what it could
mean. Nevertheless, she felt a certain relief. “Once I
could put a label on it, I could cope with it,” she says.
For Margaret, the fact that not just her husband but her
whole family have got involved in Society events has
meant a lot. She has always enjoyed being involved in the
Society. “I feel I am giving something back,” she says.
For his part, Ned has served as Carlow Branch
Chairman several times, and filled various other roles.
When he first became involved, he did not realise the
Society would become such a big part of his (and
Margaret's) life. He says the common interest helped
them as a couple.
“We were working together at local and national level,
and when people do things together, it strengthens their
relationship.”
10
MS Ireland, 1961-2011

DEVELOPMENTS
My
Society
- Mary Kirk Allen
My
Society
- Maureen Gilbert
I GOT INVOLVED with the MS Society in the early
Eighties. I’d had MS for a number of years and one day
I saw a talk by Dr Geoffrey Dean advertised, so I went
out of curiosity. At that, I met some people and took
some phone numbers.
A short time later I became the first person with MS
to be Honorary Secretary of the Society. My
appointment was a breath of fresh air.
We (people with MS) were going to take over and
develop services, as opposed to just charity.
I’m a biochemist by training and had taken early
retirement from my job because I physically couldn’t
keep up the pace.
Back in the early days, even before I was involved
with the MS Society, I used to spend hours in the
library in Trinity looking up information, so I was quite
knowledgeable.
One of the highlights for me has been the
development of the MS Care Centre. I was involved in
choosing the property and I remember when we
bought the house in Bushy Park Road. It was a fine
house and had a huge garden.
When the Centre opened it was quite separate from
the MS Society, which we had done mainly to protect it.
At that stage the Society was still very amateur, and
the Care Centre needed to be professional.
It was a marvellous development, especially for
those who were very disabled. It offered them respite
and access to people who knew how to deal with MS. I
used it myself a couple of times, and thoroughly
enjoyed my stays.
My commitment to MS Ireland was an outlet for me
because I was involved in developing services.
Under the leadership of Mervyn Taylor it was also
very educational, because when you work in science
you don’t really communicate with anybody.
It was also very sociable. You could be talking to a
psychologist one day and a bus driver the next – on the
same subject. Through the Society I made life-long
friends and acquaintances.
MY INTEREST IN MS Ireland was sparked by an ad in
‘The Irish Times’ in 1986. In that ad the Society called
itself a “dynamic community-based organisation”.
The idea that a disability service provider in the
Eighties could call itself dynamic and communitybased
set MS Ireland apart from other organisations in
Ireland. It also set it apart from most MS societies
throughout the world, which were still working to a
charitable model and were very focused on research.
While MS Ireland was keenly interested in research,
as an organisation it was primarily coming from an
angle that was really about people. Supporting people
with disabilities to live independent lives in the
community was radical back then.
I joined the Society as Head of Community Services
on 2 January, 1987, and worked there for four years.
During that period, MS Ireland expanded greatly. For
the first time the community work service received
Health Board funding, showing at last that the health
service recognised there was real community
development work going on. MS Ireland’s trained
community workers tried to assist people to get on
with their lives as independently as they could.
Other developments included the encouragement of
Branches away from the traditional charity model; the
development of carer support groups; initiatives for
newly diagnosed and younger people with MS; and the
expansion of MS Contact and the counselling service.
We were all young and wildly enthusiastic and really
wanted to make a go of it. There were all kinds of
difficulties, financial and personal and otherwise, that
got in the way. We were not very good at putting
boundaries on what we did, so the job demanded a lot
and we were often worn out.
I’m delighted I worked for the Society. I think it was
a very exciting, innovative, stimulating time to be
involved. If you were interested in a transformative,
empowering, liberating model of ensuring that people
with disabilities lived their lives in the way they
wanted, then the MS Society was the place to be.
www.ms-society.ie
11

DEVELOPMENTS
My
Society
- Mervyn Taylor
MY EARLIEST MEMORIES are linked to MS. I
remember as a very young boy in the late Fifties
watching my father, Robert Taylor, trying to kill a rat
he had cornered in the scullery of our house in west
Wicklow. He was supporting himself with a long crutch
under one arm as he used a turf spade to deadly
effect. He died in St Colman’s hospital in Rathdrum in
1980 and the memories of his life with MS, and my
indomitable mother Annie Taylor’s constant care for
him over many years, still haunt me.
In 1980 I came back from London to work with the
MS Society. I ran out of energy in 1985 but got my
‘second wind’ in 1988 when I was asked to get the
long-hoped-for dream of a national MS Care Centre up
and running. Of all the many pioneering projects I have
worked on over the last 30 years it is the one I look
back on with most satisfaction.
There are so many people to remember and thank
for their contribution. Dr Brian Pringle, his devoted
wife Jane Inez, Irene Brindley, Josephine Tinneny,
Professor Peter Gatenby, the late John Paul, one of
Ireland’s leading builders, who was as honest and
honourable as the day was long. There was also the
wonderful volunteer Jim Frawley, of the family that
ran the once famous store on Dublin’s James’s St. I
remember him, aged 80 and with one lung, dancing
around the room at the first Christmas party in the
Care Centre with a bottle of Southern Comfort in one
hand and Aoife O’Neill in the other.
Two people who to me best represented the
outgoing and progressive organisation we were
striving for, were the late Garda Tom Connors, the first
Chairman of MS Ireland with MS, and Mary Allen, who
followed him as Chair.
Tom was afraid of no one and called it as he saw it.
Mary was the diplomat whose sweet reason and
charm won over the po-faced and the powerful.
Together, and with the help of so many others – too
many to possibly mention – they played a major role in
making MS Ireland the organisation it is today.
Staffing levels increased during the Nineties as the Society
continued to meet the growing needs of people with MS
NINETIES
Much of the Nineties was focused on organisational
change for the Society, as it saw a huge growth in service
provision.
At the beginning of the decade, Brendan Ingoldsby was
recruited to the position of Director, on secondment from
the Department of Health and Children.
Throughout the Nineties, regional offices were opened
around the country and community workers employed to
help families access services and entitlements.
MS Ireland also intensified its advocacy service. In 1990,
it made a submission to Dublin Corporation for an Access
Officer to be appointed in the planning department. Other
submissions were made on the status of women, Dublin
transport and social housing.
In 1990, the Society also hosted the International
Federation of MS Societies’ annual conference, which was
considered the most successful in the organisation’s
history. To coincide with the conference it published a
special edition of ‘MSnews’. In the same year the first
telephone support line was introduced.
A counselling service was also introduced by the Society
in the early part of the decade. It gave people with MS a
chance to speak to an independent, qualified counsellor
about the impact MS was having on them and their family.
In what was described as ‘breaking new ground’,
Ireland’s first MS shop opened in 1992 with the help of
Bray Branch.
In 1992 another strategic review group was established
and headed by Paul Hogan. It made 86 recommendations
in its report in 1993.
At the time, the Society had a turnover of £1.5 million
and 50 staff, nine of whom were in the national office, but
just 1,866 registered members. It was governed by a
Council of 57 members and an Executive Committee.
Importantly, the review group recommended a major
12
MS Ireland, 1961-2011

DEVELOPMENTS
reorganisation and reduction in the size of the Council and
the abolition of the offices of President and Vice President.
In 1996, Allen O’Connor, an elected council member of
MS Ireland, sat on the Commission on the Status for People
with Disabilities.
Moving with the technological times, MS Ireland launched
its website www.ms-society.ie on 20 March, 1998.
Throughout the Nineties the profile of the Society was
raised as politicians and personalities such as John Wilson
TD, President Mary Robinson, Ray D’Arcy, Pat Kenny, the
Chieftains and Ronan Keating supported various events.
Upon the recommendations of the 1993 review report, it
was agreed that the Society would become a limited
company. After much negotiation it was formed on 1
January, 1999, with William Lonergan as Chairman of the
Board. The company took over all assets, liabilities and
undertakings of the former MS Ireland and MS Care
Foundation, which previously managed the Care Centre.
Delegates at the IFMSS conference in 1990, which was hailed a huge
success
NEWS BITES
n In 1991 President Mary Robinson launched a video
on MS in Galway.
n The IFMSS designated 1992/93 ‘International
Multiple Sclerosis Year’.
n Beta interferon was the first drug to be approved
for relapsing remitting MS in 1998; it was the first
drug developed to treat the disease rather than the
symptoms.
My
Society
- Brendan
Ingoldsby
I HAVE FOND memories of my time with the MS
Society. I joined in the early Nineties on secondment
from the Department of Health. It was a very exciting
time, and people with disabilities were taking
greater control of their own affairs and asserting
their rights worldwide. It was pretty timely too in
relation to the development of the Society. When I
joined it was at a turning point where the ownership
of services and decision making and the ownership
of branches were being very much grasped by
people with MS.
During that period there was a concentration on
the development of Society policy and formalising
the relationship between the voluntary committees
and professional staff.
During my time with the Society we also fostered a
working relationship with each of the eight health
boards. We negotiated a four-fold increase in
statutory funding. It removed much of the
uncertainty from our financial forecasting at the
time. Up until that point the Society had relied
almost entirely on voluntary contributions and
imaginative fundraising. Forecasting was difficult.
With the formal agreements with health boards, we
were in a position to have very sound predictions.
There was always a very healthy tension, if you
like, between the Branches and National Office, and
one thing I felt I achieved as director was to
establish a closer relationship between central
administration and the various voluntary Branches.
I was with the Society for nearly four years as
Director but continued to assist in a voluntary
capacity after my contract ended. I was delighted to
serve as Vice-Chairman for two years. During that
time the executive started steering the Society
towards more formal strategic planning.
I’m very grateful to have met so many great people
in the Society, and to this day I enjoy many personal
friendships with staff, volunteers and people with
MS. I wish the Society every success in the future.
www.ms-society.ie
13

DEVELOPMENTS
My
Society
- Louise Wardell
I AM ONE of a few people who have worked with the
MS Society without anyone in their family having MS. I
joined the Society at Meath Branch level in 1989
because I was asked to look after the books. Initially I
had no interest because I didn’t know anybody with MS
and was heavily involved with adult literacy. I think
people tend to react if you ask them specifically, and it
was on that basis that I got involved.
Back then there wasn’t a huge cohesion between the
Branches and National Office. Not only that, but I think
everyone was pulling in all sorts of directions. At that
stage too, the Society was a smaller entity than it is
now. Like a lot of voluntary organisations in this
country it grew very rapidly, and it was during that
growth period that I got involved with National Office.
I became a Board member in 2000 and remained
one for eight years. Just prior to that, importantly, we
became a limited liability company. A major
importance was the funding from Tesco and matching
funds from the Dormant Accounts Fund, without which
we would not have been able to go ahead with the
Getting the Balance Right programme.
Any organisation needs a strong chief executive, a
strong board and a strong chairman who gets on well
with the chief executive. I was extraordinarily lucky
that Anne Winslow and I were strong people. She and I
worked very closely together and we were quite an
effective pair. Her resignation now will be a big loss to
the Society.
While I’ve stepped back from National Office, I am
still very much a member of the Society and involved
with the East Wicklow Branch where I now live. The
Society is very close to my heart and I hope to become
involved with National Office one day again.
I’m an intense sort of personality, so once I get
involved in something I throw myself at it. Volunteers
always end up getting more out of anything than they
put in. Personally, I ended up with a great number of
friends and a huge feeling of satisfaction.
2000 ONWARDS
At the turn of the century, the sale of Sandymount
Green was completed, with a promise that proceeds
would go towards research. MS Ireland made good on
that when it donated £30,000 to the Sylvia Lawry centre
for research in Munich.
The National Office moved temporarily to the
grounds of the Royal Hospital in Donnybrook. At this
point, the Society decided to purchase permanent
headquarters that would be accessible to all.
By 2000, plans were under way for an extension and
refurbishment of the MS Care Centre in an investment
worth over £2 million. On 28 June, 2002, 14 years after
the Care Centre was first launched, it was officially
opened by the then Taoiseach Bertie Ahern.
In 2004, MS Ireland’s first national convention, MS
Uncovered, took place, with 900 people attending.
The MS Living convention was held in 2007, with
1,200 attending.
On 22 April, 2005, the then Tanaiste Mary Harney TD
officially opened the MS Society’s national offices at
80 Northumberland Road, Dublin. Accessible to
wheelchairs, it is now the permanent home of the MS
Society of Ireland.
Also in 2005, MS Ireland acquired another asset after
JP McManus donated €250,000 to the society. The Tara
Centre in Limerick was officially opened in 2008 and
has been a huge addition to the Midwest region.
The Society continued its strong policy of advocacy
throughout the ‘Naughties’. The Disability Act, which
came into force in 2005, included MS in its definition
after lobbying from the Society. MS Ireland joined the
Neurological Alliance of Ireland to improve
neurological services, and played a strong role in the
newly launched Brain Awareness Week.
In 2006, MS Ireland was awarded Tesco Charity of the
Year, which saw Branches around the country raising
almost €1 million.
This amount was then matched by funds from the
Government’s Dormant Accounts funding.
A new chapter was written in MS Ireland’s story in
June 2008 when the Getting the Balance Right
research programme was launched. This was the first
research project to be initiated by the MS Society, and
will have far-reaching effects on the lives of people
with MS.
From 2009, the Society began to experience the full
effects of the recession as fundraising and government
funding was reduced. It looked to administration costs
and began to streamline operations.
14
MS Ireland, 1961-2011

DEVELOPMENTS
NEWS BITES
n Stem cells were discovered in 2002, giving great
hope for the future of MS research.
n The first World MS day was held in 2009 and
declared a great success.
n In 2009, the first Young People’s Groups of the MS
Society were established in Cork and Dublin.
My
Society
- Aidan Larkin
Top: Olga Estridge, Services manager; Minister John Moloney; Aidan
Larkin, Services Development Manager; Dr Susan Coote, University of
Limerick; and Joe Cahill at the launch of the Getting The Balance
Programme in June 2008
Above: Some of the staff from the National Office in 2011
THE FUTURE
In 2011 MS Ireland launched an organisational review asking
service users, volunteers, staff and the HSE for feedback on
the services and relevance of the Society. Financial resources
are diminishing as reductions in statutory and fundraised
income take effect. However, the Society is adamant that
resources are used in the best way to maximise outcomes
for people affected by MS. The review will see the Society
refocus its priorities on the services valued most by people
with MS. The Society has grown enormously in the past 50
years, and further growth is anticipated. The strategic review
will be a mandate by the people and the new structure will
pave the way forward, setting us up for the next 50 years.
I HAVE A very mixed background of arts, community
work, law and health promotion, and have worked with
MS Ireland since 1994. Previously, I worked with a youth
organisation.
Over the years there have been a lot of changes and
developments not only in the organisation but in the
services I have worked with. When I started, for
example, there were no disease-modifying therapies,
only one neurologist on the western sea board and MS
was viewed, by many, as a very hopeless condition. Now,
however, with great advances in understanding the MS
puzzle, new treatments and a significant increase in
neurologists and MS nurses, it is a more hopeful time.
While my main focus was case work, I was also
responsible for developing a variety of programmes.
These included programmes related to newly
diagnosed, fatigue management, symptom
management, young people who have a parent with MS,
and more.
One of the more far-reaching programmes was an
exercise and health promotion programme called
Optimise. This was the precursor to the national Getting
the Balance Right programme which I was seconded to
coordinate. For me this has been the most dynamic and
successful programme that MS Ireland has offered our
members.
My role has changed, and I now hold a national brief
based in the western region. My work is now more
about service development, grant application and
building alliances with other groups. These have
included the HSE, the National University of Ireland,
Galway and the University of Limerick with which we
have designed many physio-related research projects.
These have not only improved the quality of life of
people with MS but they have improved the knowledge
base of the medical community.
MS Ireland has offered me many opportunities to
grow and develop and I look forward to continuing the
journey with people with MS and my colleagues. There
are exciting times ahead.
www.ms-society.ie
15

THE MS STORY
A
rollercoaster ride
The history of MS is peppered
with hopes and disappointments,
madcap 'cures' and promising
theories
IN THE SIXTIES when the MS Society of Ireland was
established, not much was known about multiple sclerosis.
At the time, it was ranked third among neurological
conditions after brain tumours and cardiovascular disease but
the exact prevalence in Ireland was still unknown. It was
thought that just 1,500 people had the disease here, but this
was later discovered to be a gross underestimation.
Today, we know that MS is the most common disabling
neurological condition among young people. Although it can
affect people at any age, it is usually diagnosed between the
ages of 20 and 40, with women outnumbering men.
Symptoms include walking difficulties, fatigue, tremors,
balance, muscle spasm and stiffness, vision loss, speech and
swallowing difficulties and bladder and bowel problems.
The fact that we can paint that picture is due to years of
research, and a history that well precedes the creation of MS
Ireland in February 1961.
AN EARLY HISTORY: 1395-1900
The first recording of MS was almost 600 years earlier, when
a 15-year-old Dutch girl, Lidwina von Schiedam, fell while iceskating.
She spent the next 38 years experiencing periods of
deterioration (blindness, paralysis of her arm and cramps)
followed by temporary improvements.
The first scientific recordings of MS appeared in 1838 when
Scottish physician Robert Carswell and French anatomist and
pathologist Jean Cruveilhier discovered damage to the spinal
cord. Carswell published drawings of the damage in 1938,
shortly before Cruveilhier. He is hailed as the first person to
describe MS. However, Germany’s Friedrich von Frerichs was
the first to discover the physical and cognitive symptoms of
the illness.
As the 19th century progressed a number of scientists and
pathologists became interested in MS. In 1870, German
pathologist Eduard Rindfleisch recognised that inflammation
is the cause of nerve damage in MS. French pathologist Jean
Martin Charcot established the connection between the
symptoms and nerve damage.
For the rest of the 19th century and early in the 20th,
European neurologists and pathologists dominated research
into MS. In 1884 Pierre Marie put forward the theory that an
infection triggers MS, a theory that continues to be
researched today.
LIFE BEFORE MS IRELAND: 1900-1961
In 1906 a new theory that poisoning destroyed myelin was
proposed by Austro-Hungarian Otto Marburg. This theory was
to abound for decades, during which people had their
amalgam and mercury fillings removed from teeth. It has
since been disproven.
The first lumbar puncture to test for MS was carried out in
1913. In 1919 abnormalities of the spinal fluid were
recognised for the first time. In 1935, MS was established as
an auto-immune disease when American Thomas Rivers
provoked an illness similar to MS in rodents.
In the two decades before the inception of MS Ireland a
number of events took place that would improve the profile of
the illness internationally.
Sylvia Lawry set up the first MS Society in the US in
1945 when her brother became ill with the condition. Four
years later an MS symposium in New York was the first
‘stocktake of MS’; it defined the treatments and stimulated
new research.
“In the Forties and Fifties much of the focus was on the
epidemiology of MS and understanding our environment and
genetics in the cause of MS. One of the key opinion leaders in
that research was Dr Geoffrey Dean,” says leading neurologist
Prof Michael Hutchinson.
In the years prior to the establishment of MS Ireland,
people with MS longed to find a cure, and without any real
developments or causes identified, grasped potential cures
with both hands.
16
MS Ireland, 1961-2011

THE MS STORY
Sylvia Lawry with her brother Bernard, who had MS and inspired
her to start the first MS Society in 1945
Some treatments being tested in the Sixties included
cortisone-like agents, aspirin and injections of tuberculin
into the spinal canal. People had even tried a vaccine made
in Russia, which was later found to have strains of the
rabies virus. In the Seventies and Eighties, people tried
snake venom, bee sting and hyperbaric oxygen.
“In desperation people with MS have gone through the
gamut of unorthodox treatments,” says Prof Hutchinson.
“Postulated therapies in MS need to undergo rigorous
double-blind control trials where neither the patient nor
the doctors treating them know what drug they’re on.
That’s the only way to establish that drugs work.”
AN AGE OF TREATMENT: 1970-2000
The Seventies saw MS Ireland report on a number of
medical advances. In 1972, Britain’s Ian McDonald and
Martin Halliday introduced a new diagnostic method that
didn’t demand invasive intervention.
In 1978 computed tomography (CT) scanning was used to
diagnose MS. Just three years later the more accurate
magnetic resonance tomography was used to diagnose the
condition.
“The investigation of the pathology of MS by magnetic
resonance imaging (MRI) has been an enormously
important development,” says Prof Hutchinson.
There was an explosion of drug trials in the Eighties and
Nineties. While cortisone, an anti-inflammatory hormone
produced in the body, was found to be beneficial in the
treatment of MS in 1980, it wasn’t until the Nineties that
significant developments occurred in the treatment of MS.
The first major advance of the decade came in 1993
when beta interferons were used for the first time to treat
relapsing remitting MS. The drugs were available in Ireland
from 1998.
Leading Irish Neurologist Prof Micheal Hutchinson pictured after
delivering the 2010 Pringle Lecture. With Prof Hutchinson are MS
Ireland Services Manager Olga Estridge and Lecture Chairperson
Eithne Fitzgerald, National Disability Authority
A NEW MILLENNIUM
The past 11 years have been a period of accelerated
change in the treatment of MS. In 2006, a major
breakthrough came when Tysabri was approved in the EU
and US. Administered by infusion, the drug is considered
more effective than its injected counterparts.
Drugs to treat the symptoms of MS also started to
emerge. They included Tizanidine and intrathecal baclofen
to treat spasticity, and others to help with bladder control,
fatigue and sexual problems. In 2012 Ireland will see the
introduction of the first oral therapy for people with MS.
Gilenya will be used as a second line therapy, like Tysabri.
Other drugs like Cladribine, Fampridine, Rituxan and
Campath are also on the way.
One theory, proposed in 2008, was chronic cerebrospinal
venous insufficiency (CCSVI), which describes the
compromised flow of blood that affects the central nervous
system. Many neurologists have challenged this theory.
It is becoming more accepted that the environment plays
a role in MS. “Going back to what Geoffrey Dean showed,
there is evidence that the environmental factor in MS is
probably vitamin D,” says Prof Hutchinson.
WHERE TO NOW?
While we do not know the exact cause of MS, Prof
Hutchinson says this is not needed to find a cure.
“Rheumatoid arthritis, for example, can be treated very
successfully without knowing the cause."
And so, the story of MS forges ahead to the next chapter.
Scientists hold out hope that stem cell research will
uncover treatments and cures, though Prof Hutchinson
describes the lack of a stem cell treatment as the biggest
disappointment in MS for 20 years.
Nonetheless, the future is bright, he says.
www.ms-society.ie
17

ACROSS THE COUNTRY
United we stand
All of MS Ireland's successes have been borne of the collective efforts
of staff and volunteers
AT THE CORE of MS Ireland’s history is a passionate, loyal
and hard-working band of volunteers. Throughout the
length and breadth of Ireland, volunteers fundraise, provide
services, create awareness and offer local support to the
estimated 8,000 families affected by MS in Ireland.
The vast majority of volunteers donate their time,
knowledge and professional expertise through their local
Branches, helping their communities to create a better
place for people with MS. Many other volunteers help out in
national fundraising campaigns, administration in local
offices or as part of committees, working groups and
collaborative partnerships. MS Ireland could not survive
without the truly amazing efforts of volunteers. You are and
will remain at the heart of MS Ireland.
In the Eighties and Nineties MS Ireland grew its staff in an
effort to meet the growing needs of people affected by MS.
The emergence of the Community Workers and the Regional
Offices was a major development as members struggled to
access services and feel supported through difficult times.
Another significant staff group are the many nurses, care
staff and administrators who run the MS Care Centre. Our
‘home away from home’ is the only centre of its kind in
Ireland and is hugely valued. There is staff in the regions
and national office that provide other services (information
line, research, website) and administrative support.
The greatest achievements of MS Ireland have only been
realised when volunteers and staff used their collective
talents to meet the needs of people with MS and their
families. It is when we work together, complementing and
supplementing each other's skills and talent that we truly
impact upon people’s lives. Let us continue to do so.
The following section demonstrates the synergy of our
staff and volunteers through the work of our regions and
Branches. It is only a snapshot of the many varied activities,
services and supports offered by our staff and volunteers
across the country.
Southwest Dublin & Kildare
The three offices in the Eastern Region offer breaks for teenagers
whose parents have MS
COVERING SOUTHWEST DUBLIN, Kildare and west Wicklow,
the Southwest area office currently has 520 clients.
Roseanna Dukes has been working with MS Ireland for the
past 12 years, having previously been the Care Manager of
the MS Care Centre. She moved into community services
four years ago, and today is Regional Coordinator with the
Southwest area office.
She says one of the main aims of the office in the past
four years has been developing supports for people with MS
to meet more locally.
“We have six well-established venues where we meet
quarterly throughout the year. This is an opportunity for
people with MS to meet others in an informal setting, and
has proven very popular. We also provide a forum for carers
to meet in a friendly and supportive setting,” says
Roseanna.
“Providing personal contact is a large part of my work as
people try to come to terms with the changing nature of
their condition. Social opportunities are a big part of keeping
physically and emotionally healthy.”
Case work is also a vital part of the service, and Roseanna
and the Southwest area team work on an individual level
with people with MS and their families, whether they are
18
MS Ireland, 1961-2011

ACROSS THE COUNTRY
members of the MS Society or not and whether they are
newly diagnosed or have had MS for a long time.
“We also run various events throughout the year for
people with MS and their families,” says Roseanna.
Developing good working relationships with health
professionals has been important for the progress of the
regional office, according to Roseanna.
“We have close links with disability services and health
care professionals in the area including the MS nurses in
the Adelaide and Meath National Children’s Hospital, St
James’s Hospital and St Vincent’s Hospital.”
Information is another important element of the office’s
work. Newly diagnosed information days and other
information days with particular topics (including for health
professionals) are provided.
DUBLIN WEST BRANCH
In 1993, the Dublin West Branch was formed to cover newly
developed areas in west Dublin. It was felt there was a need
to form the Branch to provide social events, activities,
counselling and home visitations in the area.
In 1995, Branch members, 136 adults and lots of children
attended the annual Garden Party hosted by Baldonnel Air
Base. The highlights of the day were the glorious weather
and the delicious food.
In 2001 the Branch held a Race Night in the Cuckoo's
The Kildare Branch held a greyhound race night in Celbridge in
2005
Nest pub in Tallaght. The night also included a raffle and a
birthday surprise for Monica Jones.
KILDARE BRANCH
The first seeds of the Kildare Branch were sown in 1981
when two meetings were held, and it was hoped to form a
full branch in early 1982.
In 1990, the Branch visited the Royal Hospital,
Kilmainham and the Botanic Gardens on one of its
memorable day trips.
In 2005 it held a race night at the Celbridge Greyhound
track. In addition to the odd bet, members were treated to
food, entertainment and face painting (for the kids!)
My
Society
- Michael Fox
FOR MANY PEOPLE with MS it can be a good thing to talk
to someone in the same situation, and that’s exactly how
I felt when I was diagnosed in 1989 at the age of 41.
Soon after my diagnosis I heard about a newly
diagnosed group that had been set up by MS Ireland. It
held monthly meetings facilitated by a counsellor. I found
that a huge help, and when it finished I thought it would
be a good idea to keep the group together.
MS Ireland told me that if I found a venue it would
supply the counsellor, so off I went and found a room in
Mount Argus Community Centre. The group was known
as the South Dublin Support Group, proved enormously
popular and got so big that we eventually moved up to
Cheeverstown House in Templeogue. The group ran for a
number of years but unfortunately I had a heart attack
and was no longer able to organise and facilitate it, so it
eventually broke up.
As it turned out, Brendan Kenna (RIP) was setting up
the West Dublin Branch in 1993 and I was asked to assist
him with the publicity for our first inaugural public
meeting in the Green Isle Hotel. I’ve been Chairman of
the Branch on numerous occasions and am Vice-
Chairman at present.
I’ve spent a lot of time fundraising and have
campaigned on many issues over the years. I am the
Chairperson of ACTS (Accessible Community Transport
Southside) and a member of the South Dublin County
Council Disability Consultative Panel. For many years I
have been involved with the Dodder Valley Partnership
and am a member of its Disability Interest Group and
Community Development Advisory Group.
Through my time with the Society I’ve met many
wonderful people whom I would never have met if I had
not been diagnosed with MS. I take this as one of the
positives of having the condition.
www.ms-society.ie
19

ACROSS THE COUNTRY
North County Dublin & City
THE NORTHERN AREA office was set up 15 years ago to
serve people in north Dublin and Fingal. It now has 540
registered clients.
Sean Kinsella has worked with the regional office for 11
years and says that the demand on services has grown
hugely during his time with MS Ireland.
“My predecessor had worked alone, as I did for a couple of
years. However, our team has grown as the demand on
services has increased. This means we are able to provide
better services to many more people, and we are able to
provide many more services,” he says.
Sean says group services have been especially popular.
“We have developed quite a lot of group programmes,
ranging from yoga to personal development groups to
exercise groups. We’ve formed strong links with the VEC,
which has enabled us to put on extra courses such as tai
chi. We’re aiming to develop groups that will be selfsustaining,”
he says.
“The office takes part once a month in an MS clinic in
Beaumont Hospital, so we work closely with the health
professionals,” says Sean.
“We are also in regular contact with hospital and HSE
community personnel. An example of co-operative
working was a physiotherapy course last year when the HSE
provided a physiotherapist and we organised and funded the
venue, and transport for those who needed it.”
DUBLIN NORTH BRANCH
In February 1976 the Branch held its AGM in the Central
Remedial Clinic. It reported the introduction of many new
young members who offered to run various flag days and
the annual Branch holiday.
In 1992, the Branch took part in a North/South exchange
visit. The Co Down MS Group was welcomed by members of
the North Dublin Branch. It was a great success.
In 1993, Dublin North launched its fundraising parachute
jump. Branch members Patricia O’Rourke and Sean O’Brien
both 'jumped' at the chance to take part.
My
Society
- Willie Phelan
I WAS FIRST diagnosed with MS when I brought my sick
child to the doctor, who noticed I was slurring. She
sent me for an MRI scan in Beaumont, and I was told I
had MS.
It was a shock. I was in my 40s with two young
children, and in the back of your mind the fear is that
you are going to be incapacitated in a year or two, but
you have to remain positive.
Even though I have limited mobility, I am still fairly
active. I go swimming two or three times a week, I
insist on getting up early in the morning and bringing
the kids to school and I like spending time working on
the garden.
I am very involved in the North Dublin Branch and am
now the council representative for the area. We do all
the usual collections – church gate and shopping
centre – and we organise a social once a month that
takes a fair bit of work.
I made contact with the sandwich company
Freshways and it has been fantastic to us, as has
Volunteer Ireland.
I see a lot of people who are much worse off than me,
and in a way that is my driving force. You have to make
the best of what you have. I had to retire from work
when I was diagnosed. I was a bus driver, and having
done shift work for 20 years one of the things I found
very hard was winding down from that.
Getting involved with the Society gave me something
to do. You have to stay positive and find something to
keep you active.
I am lucky in that I have my children and my family
and the Society – it is amazing how much time that can
take up!
I cannot emphasise enough, especially for newly
diagnosed people, how important it is to remain 110%
positive at all times.
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East Coast Dublin & Wicklow
physiotherapy services continuing on from the Getting the
Balance Right project. The office also tries to organise
outings annually, alongside other regions, for children and
teenagers who have family members with MS.
Jason Power, Vice-Chairman of the South Dublin Branch and
winner of the Volunteer of the Year Award in 2010, with Margaret
Maguire, MS Care Centre Manager
DUBLIN SOUTH BRANCH
In April 1977 the Dublin South Branch held its annual Mass
for members in the Order of Malta Hall on Clyde Road.
Supper and entertainment were provided afterwards.
In 1994, the Branch held an Annual Harvest Service, which
was attended by many members and also joined by
residents of the Care Centre.
In 1985, the Branch awarded Norah Draper with an
illuminated address after she was instrumental in
winning the right for people with disabilities to have a
postal vote.
INFORMATION IS A highly important aspect of the East
Coast Dublin and Wicklow Area office’s work. Based in
Greystones in Co Wicklow, the office publishes a quarterly
newsletter and places a huge focus on meeting with clients
throughout the year.
Looking after the south Dublin and east Wicklow areas, it
currently has 378 people on its books.
Community Worker Geraldine Dunne joined the office in
2008, moving from the Southwest area. She says that, in the
past three years, the office has tried to continue to impart as
much information as it can to people affected by MS.
“It’s in the mission statement of MS Ireland that we want
to help people affected by MS, and that includes families
and carers,” she says. “We provide our services to all people
affected by MS, and we try to give them as much information
as possible about the illness and its management.”
The office’s work is split between carrying out case work,
and organising events and programmes. Case work, as
always, remains an integral part of the office’s activities.
“Meeting with people individually or families collectively
and providing them with information and supports can
alleviate them of some of their fears,” says Geraldine.
She adds that the office has tried to sustain its good level
of services over the past few years.
“What programmes we put in depends on the funding we
get, but we apply for National Lottery funding every year.”
Programmes offered throughout the year include a
programme for carers, newly diagnosed days and
Persis Quinn and her husband Aidan, centre, with Mark Mitchell,
Chairman of the East Wicklow Branch, and Wolfgang Truetzschler,
committee member
EAST WICKLOW BRANCH
(formerly the Bray Branch)
In 1992, the Bray Branch was instrumental in opening
Ireland’s first MS shop in Bray.
It re-established itself as the East Wicklow Branch on 9
October, 2009 with the aim of providing services beyond the
Bray catchment area.
At the 2010 Annual Awards held in Cavan, long-term
volunteer Persis Quinn scooped the coveted MS Carer of
the Year. Persis, who cares for her husband Aidan, was a
long-standing member of the Bray Branch and continues
her work with the new Branch.
www.ms-society.ie
21

ACROSS THE COUNTRY
The West
Left: The Western regional office opening on 26 March, 1990.
Above: Members of the Roscommon Branch celebrate the 25th
anniversary of the Branch with country singer Sandy Kelly
SET UP IN Galway in the early Eighties to cover Galway,
Mayo and Roscommon, the Western Regional Office has
evolved over the past three decades, responding to the
needs of people with MS and their families in the region.
When Regional Coordinator Aidan Larkin joined the office in
1994, there were 350 people with MS registered; now there
are more than 620.
Aidan says direct work with people with MS and their
families has always been a key aspect of work in the region.
“We provide a great deal of case work, and are led by what
individuals want. We encourage people to use us as a dip-in
and dip-out service. The model of case work that we use is
solutions-focused. We try to troubleshoot, and if someone
comes to us with an issue we will try to sort it out,” he says.
“Over the years we have developed many different
services, and those that have had the most impact on
people with MS have been the Getting the Balance Right
physiotherapy programme, our Soul Feast weekend, selfmanagement
programmes and our programme for young
people who have a parent with MS,” he says.
The Soul Feasts have little to do with MS, says Aidan, but
that is their attraction. “From my own research I found that
people with MS tend to socialise with other people with MS
through a health platform – talks from professionals,
symptom management courses etc. The Soul Feast
weekend is an opportunity to let MS step into the
background and for people to have fun, relax and meet
people in a very social and joyous way.”
Over the years, the office has developed excellent
relationships with the local university, health services and
others. One of the more dynamic relationships has been
with FAS.
“Our Community Employment Scheme provides a valuable
outreach service to people with MS in their homes and has
expanded hugely in recent times,” says Aidan. This year the
office launched a scheme whereby people on the
Community Employment Project ware trained to FETAC
level 5 as physiotherapy assistants.
“This has been an amazing opportunity for MS Ireland and
has offered us the chance to respond in a new way to some
of the needs of people with MS who are unable to mobilise
and who have poor access to in-home physiotherapy. It is a
great demonstration of how MS Ireland, FAS and the HSE
can work really well together,” says Aidan. “We look forward
to the next 50 years developing new programmes and
building new and better relationships.”
ROSCOMMON BRANCH
In 1976 the Roscommon Branch was established. In January
of that year it held its first get-together in the Four Mile
House. The event began with Mass and was followed with
tea and a sing-song.
In December 2006, the Branch was able to buy an
accessible bus after numerous fundraisers.
In 2009 the Branch opened a memorial garden in honour
of Nuala Cunnane, a long time fundraiser, volunteer and
friend to the Branch who passed away in 2008.
At the 2010 annual conference Pat Burke was named MS
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MS Ireland, 1961-2011

ACROSS THE COUNTRY
Paddy Rafter, of Three Tenors fame, and his wife and two children
performed their musical debut in the Salthill Hotel in 2008. The
Galway Branch was the recipient of the proceeds
Members of the Hollister ULC Marathon team present a cheque to
the Treasurer and Chairwoman of the Ballina Branch
Person of the Year for his outstanding work and dedication
to the Branch. Pat has held many posts, and his passion for
helping people has been evident in all of them.
BALLINASLOE BRANCH
In October 1976 the Ballinasloe Branch held a most
enjoyable get-together for members in the Shamrock Inn.
The event began with Mass in Creagh Church and was also
attend by members of the Galway City Branch.
The Branch was very active in the mid-Eighties, and in
1985 it took an exhibition stand at the Agricultural Show in
the Emerald Ballroom in Ballinasloe. During the day it
showed the Society’s ‘It all depends on you’ film
continuously.
In 1986, the Branch provided swimming lessons for its
members, and later joined forces with the Irish Wheelchair
Association to provide more lessons.
TUAM BRANCH
The Tuam Branch was formed in 1982, the third of its kind in
Co Galway.
In late 1985 the Branch held its first ever church-gate
collection in Tuam, raising an impressive £2,500 in less than
24 hours. It presented £1,000 of that to the MS Society for
research.
In 1989 the Tuam and Ballinasloe Branches attended a
Taking Control of MS course, which looked at the medical
and emotional aspects of MS, maintaining continence, aids
and appliances, taking control of pain, fatigue and diet, yoga
and relaxation, among other things.
GALWAY BRANCH
The Galway Branch first appeared in the MS Society’s
records in 1975 when it attended the AGM. In the same year,
the Branch was helped considerably by the local Lions Club,
the Rotary Club and the Flower and Garden Club.
Christmas has always been a great time for the Branch,
as it sells Christmas cards and holds an annual Christmas
party. In 1986 it had a record turnout for its Merlin Park
Hospital Christmas party.
In 1994, it organised its fun run, with Cunniffe Electric and
Galway Bay FM coming on board as sponsors.
.
MAYO SOUTH BRANCH
In the spring of 1980, a group of people got together at the
Imperial Hotel, Castlebar, and the inaugural meeting of the
Mayo South branch of MS Ireland got under way. It was
estimated that 50 people with MS lived in the area at
the time.
The Branch has always had a great group of people
behind it.
In 2002 it raised €7,500 at the mini-marathon, and last
year Eamonn Connolly donated €2,320 to the Branch from
his CD ‘Chimes of Time'.
BALLINA BRANCH
In 1992 the Ballina Branch launched the video, ‘It all depends
on you’, to highlight the difficulties people with disabilities
experience as they go about their every-day activities. It was a
great learning experience for all involved.
Dr Aubrey Bourke, who passed away in 1984, was
Chairman of the Society and appeared in the film.
Advocacy has always been important to the Branch and in
June 1991 it held its first Access Awareness Day, which
involved people getting together to investigate access for
those with disabilities in Ballina.
The group investigated every aspect of the town, from the
train station to the post office.
www.ms-society.ie
23

ACROSS THE COUNTRY
My Society
- Anne-Marie Hayden
I WAS A successful,
competitive hairdresser when
I first started having MS
symptoms in 2002 after the
birth of my son. It wasn’t until
six years later that I was
finally diagnosed with the
illness, having been through
every test you can imagine. I
had deteriorated rapidly in the
months before my diagnosis, losing vision for six
weeks and experiencing chronic hand pain, on top of
all my other symptoms.
When I was told it was MS, I remember thinking 'at
least I have a name for it now'. All that uncertainty was
gone. As a young mother, it was terrifying not knowing
what the problem was, and having words like tumour
and Parkinson’s bandied about.
Still, it was quite traumatic. I’m a strong person and
when you are so incapacitated, it is hard to come to
terms with having to ask others for help. All that
form-filling stuff is terrible for somebody who is really
ill, and you need that support.
Thank God I had MS Ireland on the other end of the
phone. It was great to hear somebody who understood
what I was going through. It has completely changed
my life. I look at things much differently now, and
through the Getting the Balance Right programme I
have been rehabilitated and remain very active.
I am now a spokesperson for MS Ireland, providing a
voice for those who do not have one and working to
change egative and incorrect stereotypes attached to
those with MS.
Through hard times, I try to maintain a positive
mental attitude. With courage and strength, almost
anything can be accomplished. Setbacks happen. What
do you do when you fall? You get back up again.
My Society
- Maureen Feeney
MY HUSBAND JOHN was
diagnosed with primaryprogressive
MS in 1975. It was
at a time when there was no
physiotherapy, no home care
and no home help. We had got
married three years previously,
had just had our first daughter
Sharon and moved into a new
house in Castlebar, Co Mayo.
Two years later I had my daughter Michelle.
We were young when John was diagnosed and were
able to handle it. Nothing stopped us; we enjoyed life
for a number of years. We took it as part of life. My
daughter Michelle can’t remember John walking. She
was two when he went into the wheelchair, and would
‘ride’ on the back of the chair.
John had MS for 14 years before passing away in
1989 at the age of 43. It was in 1990 I got involved with
the Society. I wanted to help and to be there for other
people. I had gone through 14 years of it.
My friend Pauline Rodgers had just opened the South
Mayo Branch, so I joined. I threw myself into the branch
work. We organised holidays and brought our members
all over the country. In 1991 I became Council
Representative for the Branch, which involves going to
council meetings in Dublin four times a year.
My MS story has taken another direction. In 2003 my
daughter Sharon was diagnosed with relapsingremitting
MS. She has everything, compared to what
John had; she was put on Tysabri and has done
physiotherapy. She went on to marry, is an Adult
Educational Officer with FAS and, this year, gave birth
to twins. She got involved in the Branch here
immediately after her diagnosis, has been Treasurer
and is now heavily involved with newly diagnosed and
young members. We weren’t devastated when Sharon
was diagnosed. We realise there are a lot worse things.
Seeing my husband John go through it and continuing
to work with the Branch has made me more accepting
of other things in life. I know I can pick up the phone
and talk to Allen O’Connor or Anne Winslow if needs
be. It’s great to be part of this Society.
24
MS Ireland, 1961-2011

TIMELINE
50
1.
February 1961
First ever MS Society of Ireland
meeting
2.
8 June 1961
First AGM is held
events
for
3.
1962
466 members are
registered with the
MS Society
4.
1964
First staff member hired by MS
Society
years
505.
1965
Appeal to open an MS rest centre is
launched
As MS Ireland celebrates
reaching its half century,
we take a quick look back at
some of the more memorable
moments along the way
6.
1966
TV personality
Ted Moult appears
on ‘The Late
Late Show’ to talk
about MS
7. 1969
Lord Iveagh of
Guinness is elected
the Society’s first
President
8. 1971
First CT
brain scan is
carried out
9.
1972
New MS Society
constitution is adopted
www.ms-society.ie
25

TIMELINE
10. 1974
Car sticker and
brooch is launched
for fundraising
11.
1975
MS Society hosts its first
holiday at CRC, Clontarf
13. 1975
Medications become free as
14.
MS is added to the Health
Board’s Long-Term Illness
Scheme
1976
€14,000 is raised on flag days
12.
1975
MS Society commits
£5,000 to research
each year
15.
1976
Society holds
National Day of
Prayer
20.
1983
‘It all depends
on you’ MS film
is launched
16.
1981
Research laboratory project
in St Vincent’s starts
19.
1982
First honorary
secretary with
MS elected
17.
1981
‘Fight MS’ aeroplane
flies over Ireland
18.
1982
Society launches
Housing Grant
campaign
21.
1985
Dr Pringle
meets the
Pope
23.
1988
Roald Dahl
launches the MS
READaTHON
22.
1987
Research edition of
‘MSnews’ is published
26
MS Ireland, 1961-2011

TIMELINE
24.
1989
MS Care
Centre starts
offering
services
25.
1989
The first Pringle
lecture is held in
honour of our founder
26.
1990
Forum of People with
Disabilities meets for first
time
29.
1991
MS Ireland makes a
28.
1990
President
Robinson
launches MS
video
27.
1990
Society hosts
IFMSS
Conference
in Dublin
submission to Social
Housing Policy
30. 31.
1992
Counselling service
established by the Society
1993
Structural review
carried out by Society
32.
1993
First Disability Pride Parade
takes place in Dublin
35.
1995
First National
Pen Day is
held
34.
36.
1995
Interferons become
available in Ireland
1997
Pat Kenny
lends a hand
to the MS
campaign
33. 1993
The Chieftains
launch the
Camino Walk
37.
1999
MS Ireland’s
website is
launched
www.ms-society.ie
27

TIMELINE
38.
39.
2001
1999
MS Ireland starts
operating as a company
MS Ireland
2002
gives £30,000 to
the Sylvia Lawry
Centre for
MS Research
40.
Stem cell
research gets
under way
43. 2004
President of Ireland
and our Patron Mary
McAleese opens the
first national MS
Convention
42.
2004
EMSP
Conference
held in Dublin
41.
2002
An Taoiseach
Bertie Ahern
officially opens the
renovated MS Care
Centre
44.
2005
MS is defined as a
disability in the new
Disability Act
49. 2009
First World MS
Day is held.
Conference held
in Cork
45.
2006
Tesco announces
MS Ireland as
Charity of
the Year
47.
46.
2006
President Mary McAleese
holds a tea party for MS
Ireland volunteers
2008
The Tara Resource Centre
opens in Limerick thanks
to JP McManus
48.
2008
Getting The
Balance Right
gets under
way
28
50.
2011
Chairman Allen O’Connor wins James
D Wolfensohn Award for International
Person with MS
MS Ireland, 1961-2011