Spectrum - Issue 32

Mar/Apr 2013

SPECTRUM

Published by Cystic Fibrosis Ireland

IN THIS ISSUE:

• 'For the Roses' Ñ 50th Anniversary Book • Annual Conference 2013 • CF Ireland wins Irish Healthcare Award • Two Transplants Later, By Olivia Coen • Camino Walk 2013 • 65 Roses National Awareness Week

Issue 32: Mar/Apr 2013 1 www.cfireland.ie

Spectrum / Issue 32

Dear All, This edition of Spectrum highlights some of the events to mark our 50th anniversary. Many thanks again to all who participated in the remembrance and thanksgiving ceremony in the Mary Immaculate Church in Rathmines in February. Judging by the many cards that came into the office since, it is clear that the day meant a lot to the 500 people who attended.

As part of the ongoing initiatives to mark our 50th anniversary, CFI has published a book 'For the Roses' which traces how the Association was formed. It shows that the association was at the heart of many of the key improvements in CF services over the years. The book is available from the National Office for Û15 including post and packaging.

It is good to report further progress related to better CF services in Ireland. The new paediatric outpatient centre in Drogheda is well underway and should be completed by the autumn of this year. Kalydeco, the new drug for those with at least one copy of the G551D gene alteration became available from 1 March 2013. We know from talking to many of our patients that they have already commenced treatment with this new drug. We will keep you up to date about new therapies becoming available in Ireland over the next few months.

We have an exciting line up for our annual conference this year in the Killashee House Hotel in Naas, Co Kildare, and we hope that you will be able to join us for at least part of the weekend.

While this is clearly a period of hope and progress within CF care at some levels, it is also a period of worry for many of our families coping with CF. For example, the forthcoming replacement of the mobility allowance/motorised transport grant could mean that many people with a disability, including those with CF, could have much more restricted access to independent mobility in future.

CFI was built on the determination of our founders and we would like to think that this ethos continues to drive us forward 50 years later.

Kind regards, Philip Watt (CEO) Alica May (Editor)

Front Cover: Bridie Maguire and Anne O'Dwyer, pictured at the thanksgiving and remembrance service.

DISCLAIMER: The views of contributors, when expressed in this publication, do not necessarily reflect the position or policy of Cystic Fibrosis Ireland.

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Mar/Apr 2013

Section 01:

LATEST NEWS : Page 3Ñ11

ÔFor the Roses' Anniversary Book of the CFAI Remembrance and Thanksgiving Service CF Ireland Annual Conference 2013 CF Ireland Wins Irish Healthcare Award!

Organ Donation Update Public Consultation Ñ Review of Mobility Allowance and Motorised Transport Grant Easy Guide to Rare Diseases in Ireland Launches Update on Building Work in Drogheda --

Section 02:

PWCF SPOTLIGHT : Page 12Ñ13 Two Transplants Later, By Olivia Coen --

Section 03:

EVENT FOCUS : Page 14 Camino Walk 2013 --

Section 04:

FUNDRAISING : Page 15Ñ21 One in 1000 Social Media National Awareness Week 12Ñ19 April 2013 Community and Local Challenge events Overseas Events Ongoing Fundraising Initiatives Special Projects Corporate Fundraising Thank You --

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FOR THE ROSES THE CYSTIC FIBROSIS ASSOCIATION OF IRELAND AT 50 1963 – 2013

FOR THE ROSES better CF services in Ireland by buying this book. 100% of the proceeds will go towards supporting CF specialised units, research and services.

are supporting the improvement of 1963 –You2013

It is a story of how the political and medical skills of doctors, especially Colman Saunders and Eddie Tempany in those difficult early years, helped kickstart CF services in Ireland with support from CFAI.Despite recent progress Much remains to be done. Ireland still has the FIBROSIS highestASSOCIATION rate of CF in the world and we still have a deficit IRELAND AT 50 of services.

If there is a consistent theme that emerges from this book it is the power of people to effect change by working together, even when the odds are stacked heavily against them. This is the inspiring story of how the Cystic Fibrosis Association of Ireland (CFAI) was founded in 1963 and has since developed into one of the best known patient groups in Ireland. It is a story of how in the early 1960’s two young women and mothers, Anne O’Dwyer and Bridie Maguire worked with parents and doctors to demand basic services for children with Cystic Fibrosis (CF).

The story of the Cystic Fibrosis Association of Ireland

FOR THE ROSES

If there is a consistent theme that emerges from this book it is the power of people to effect change by working together in the face of adversity.

Price: €15.00

This is the inspiring story of how the Cystic Fibrosis Association of Ireland (CFAI) was founded in 1963 and over the past 50 years has developed into one of the best known patient groups in Ireland.

It is a story of how in the early 1960's two young mothers, Anne O'Dwyer and Bridie Maguire worked with parents and doctors to demand basic services for children with Cystic Fibrosis (CF).

THE CYSTIC OF

You are supporting the improvement of better CF services in Ireland by buying this book. Thanks to sponsorship, 100% of the proceeds will go towards supporting CF specialised units, research and services.

To order your copy for Û15 (includes post and packaging) please visit www.cfireland. ie or visit our online shop. Alternatively, please send a cheque/postal order/bank draft made out to CF Ireland to: CF Ireland, 24 Lower Rathmines Road, Rathmines, Dublin 6.

For more information please contact: e:info@cfireland.ie or t: 1890 311 211 FOR THE ROSES THE CYSTIC FIBROSIS ASSOCIATION OF IRELAND AT 50 1963 – 2013

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e political and ors, especially d Eddie Tempany in ears, helped kickeland with support ecent progress Much reland still has the the world and we ervices.

he improvement of Ireland by buying he proceeds will go CF specialised units, .

LATEST NEWS

SECTION 01

PAGE 3Ñ11

ÔFOR THE ROSESÕ Publication Marking 50 years of the CFAI

FOR THE ROSES THE CYSTIC FIBROSIS ASSOCIATION OF IRELAND AT 50 1963 – 2013

t theme that ok it is the power hange by working the odds are st them. This is how the Cystic of Ireland (CFAI) and has since of the best known and. It is a story 960’s two young , Anne O’Dwyer worked with parents nd basic services for Fibrosis (CF).

Mar/Apr 2013

FOR THE ROSES THE CYSTIC FIBROSIS ASSOCIATION OF IRELAND AT 50 1963 – 2013

The following is an extract for our book 'For the Roses' to mark our 50 years. Anne O'Dwyer was the founding Chairperson of the association and Bridie Maguire our first CEO. To order your copy of the book for Û15, including post and packaging, please contact the National Office.

There was a lot of information and photos we could not include in the book, so please check out our website where over the next few weeks we will be posting information, especially photos and press cuttings from our branches.

Anne O'Dwyer Anne O'Dwyer, nee Saunders, began her career as an air hostess with Aer Lingus. As with many women in State and semi-State companies at that time, she was required to give up her job once she was married. Anne Saunders became Anne O'Dwyer when she married Se n and they went on to have four children of which three, including twin boys (John and Michael) and a girl (Fiona), were born with CF. Anne discovered her twins, John and Michael, had CF when they were very young because her father was Professor Colman Saunders, the Medical Director in Crumlin Children's Hospital.

Anne recalls, "My children were always ill and vomiting. Dad [Professor Saunders] was in the garden one day watching John and Michael and said he was almost sure he knew what was wrong with them.

He told me that it was likely the boys had cystic fibrosis. I remember he started to say "it is a terrible disease..", but then he realised what he was saying and stopped himself to spare my feelings and said that "there has been tremendous advances in recent years, of course"."

Anne continued, "He sent me to Dr. Conor Ward who did the sweat test [a diagnostic test for CF still used today]. I think in those days if I remember they put practically the whole child into a bag to help stimulate the sweat they needed to carry out the test. Crumlin Hospital had only opened in 1956 and I think my children were among the first with CF to attend Crumlin. My Dad could not treat the two boys because he was their grandfather, but he was always around to advise me on the various treatments being prescribed."

"Fucidin was an effective but very expensive antibiotic which was used if they got very sick. In those days I ran the house on £8 a week, which was quite a lot in those days. A bottle of Fucidin cost £5 pounds and it took 2 bottles to clear an infection. We were crippled with the costs."

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The kindness of doctors is recalled by Anne "Dr. Niall V. O Donoghue in Temple Street was my doctor. He never charged us consultancy fees even though he was supposed to, because he knew we could not pay."

Anne remembers meeting Minister for Health, Se n Flanagan in the late 1960's to lobby for state support for cost of medicines and doctor's fees, "He was a gruff sort of man, but he agreed that CF would be covered by a Long Term Illness Scheme. We went out of the meeting walking on air!"

Bridie Maguire and Anne O’Dwyer.

The living conditions of some poorer families with CF were dreadful, she recalled.

"We used to call out to see one mother in Summerhill [inner city Dublin tenements] who lived in one room. She had a sick child, no running water and was living in awful conditions. We pulled and pushed and got in touch with every one and we eventually got her a house thanks to the support of Declan Costello [Attorney General, 1973-1977]."

Bridie Maguire Bridie Maguire was involved in CFAI from the early 1960s until she retired in 1995. Bridie became involved in the work of the CFAI after seeing a letter in the Evening Herald by Anne O'Dwyer, shortly after CFAI was established. Bridie offered herself as a volunteer and thought she would be 'licking stamps', but soon found herself helping Anne O'Dwyer to provide advice and support to parents and to help the newly formed CFAI committee to lobby the government for better services.

Bridie Maguire was born in Newry, Co Down. In the early 1950s, she emigrated to New York in search of work along with tens of thousands of other young Irish men and women at the time, although she emphasises in her case "it was because I really wanted to experience New York, I was under no pressure at home to emigrate or to find work outside Ireland." Bridie was employed in a medical insurance firm 'Blue Cross' in Manhattan, but in the late 1950s she decided to return to Ireland. She married Tommy Maguire, also from Newry, and they settled in Rosemount Avenue, Artane on the northside of Dublin.

Bridie and Tommy's first two children, Anne-Marie and Siobh n, were born with CF but sadly both died before two years of age.

Bridie remembers in the absence of basic services, an important part of her work with CFAI was to travel to many parts of Ireland visiting and providing support to parents who often felt isolated and abandoned and unsure of what to do for their very sick children.

The poor social conditions in Ireland also contributed to the high death rates among children with CF at the time, she recalls, "The poverty was appalling. We spent much of our time in those early days getting medicines and proper houses for many of our families."

Bridie also recalled the impact of working with CFAI had on her own family life, "I was working very long hours. I remember well a Christmas day when a child with CF from Ballymun took ill and myself and Tommy spent Christmas day making sure we got the medicine that child needed. We had little time to ourselves for our family life."

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REMEMBRANCE AND THANKSGIVING SERVICE Event Overview

A remembrance and thanksgiving service took place in the Mary Immaculate Church in Rathmines on Saturday 23rd February. This was the first major event to mark Cystic Fibrosis Ireland's 50th year.

Cystic Fibrosis Ireland was formed in 1963 by parents, with support from the few doctors who were treating people with CF at the time. The first meeting was held on a cold November day in a small lecture theatre in the recently opened Crumlin Children's Hospital in Dublin. The resolve of the small group of people who attended that first meeting has continued to this day. This service allowed us the opportunity to remember and give thanks to those founders and all the subsequent members and supporters of our association, people with CF, their families and friends, the doctors, nurses and clinical teams and all those who have contributed to our work over the past 50 years.

The Dublin Gospel Choir were at hand to sing throughtout the service and covered numbers such as 'Lean on Me' and 'Stand by Me' to name but a few. Many members commented that their involvement brought something very special to the service.

A Special Guest Address was provided by Professor Muiris X. FitzGerald, the first CF adult consultant in Ireland in St Vincent's University Hospital. Here is an excerpt of his speech: "So, 37 years on from the first CF patient's arrival at St Vincent's, my abiding memories of the first two decades are many; the courage of the young men and women with CF and their families whose fortitude and good humour in facing adversity profoundly moved me; the dedication, enthusiasm and resilience of the wonderful band of medical and health professionals involved in CF care at St Vincent's Ă‘ doctors, nurses, physiotherapists, dieticians, psychologists, porters and medical scientists that I was privileged to work. Their camaraderie and team loyalty enriched my life. And, most of all, the joy of witnessing how life for CF patients is now so much better every year."

During the Service of Light, members were asked to light the candles of remembrance and place them on the alter.

Some photos from the event are included on the next page. Log on to our Facebook page to view many more that were taken on the day.

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CF Prayer Patricia Tinsley and Michael Hickey.

O' Lord God Heavenly Father, Whose hand is ever stretched out, In blessing and healing upon those who are ill, We pray for the work of Cystic Fibrosis Ireland, We give thanks to the voice and determination of people with CF, We give thanks to our wonderful parents, families and friends, We give thanks for the skill and dedication of our doctors and nurses, Grant all of us compassion and understanding, Through good times and bad times, And bless all who support us in our struggle, That we might find justice, encouragement and peace, Through Jesus Christ Our Lord, Amen

Rory and Sarah Tallon with baby Florence.

CF Nurses from St. Vincent's.

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Back L-R: Professor Muiris FitzGerald, Colm Warren, Philip Watt, John Coleman, Cubby O'Connor. Front L-R: Kevin O'Connor, Bridie Maguire and Anne O'Dwyer.

Mar/Apr 2013

CF IRELAND ANNUAL CONFERENCE 2013 12th-14th April in Killashee House Hotel, Naas, Kildare

This year's CF Ireland Conference will be taking place on the 12th-14th April in Killashee House Hotel, Naas, Kildare.

2013 marks the 50th year of the Cystic Fibrosis Ireland (CFI) and on the Friday evening we will be launching a special book 'For the Roses' that traces how far we have travelled since our foundation in 1963. The official opening and launch of our 65 Roses Week will take place on the Friday evening which Minister of State for Primary Health Care, Alex White TD, will be attending to give a Ministerial Address. This will be followed by an award ceremony honouring the founding members of CF Ireland with outstanding contribution awards for Bridie Maguire, Anne O' Dwyer and Prof. Muiris X FitzGerald. A special media recognition award will be presented to Joe Duffy for the exceptional work of Liveline in highlighting CF issues over many years.

As per previous years, Saturday's agenda offers a wide range of seminars and talks on new innovative therapies, genetics and screening, tips for parents, advice and inputs from PWCF. Our special guest, Ed Owens, CEO, UK Trust will discuss a UK perspective on CF care.

We also have two sessions of three parallel seminars running in the morning and afternoon. We invite members to come and join these informal workshops and interact with other members.

11.45am: • Tricks of the Trade for Parents • New Therapies: further discussion • Positive Mental Health for Families 3.15pm: • The Benefits of Adherence and Exercise • Infection Control and Equipment Care • Fertility & PGD Over the course of the weekend please come up and say hi to the staff of CF Ireland and we look forward to welcoming new members and meeting with friends old and new.

Killashee House Hotel, Naas, Kildare is the location for the CFI Annual Conference in 2013.

The conference will take place from 12th-14th April.

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CF IRELAND WINS IRISH HEALTHCARE AWARD! Outstanding Contribution for 2013

Cystic Fibrosis Ireland won the Irish Healthcare Centre 'Outstanding Contribution' award for 2013 at an award ceremony hosted by Bryan Dobson of RTƒ in the Marine Hotel, Dœn Laoghaire on Friday 8th March.

John Coleman, Chairperson of CF Ireland, accepted the award on behalf of the Association and during his speech conveyed thanks to all our members, branches, friends and supporters whose work made this award possible.

John Coleman, Chairperson of CF Ireland, accepted the award on behalf of the Association.

CFI was nominated for the award by a panel of independent judges and we won through an online vote. Many congratulations also to Orla Tinsley who won the 'Healthcare Person of the Year Award' at the same event.

CHANGES TO ORGAN DONATION LAW WILL ONLY HAVE PARTIAL IMPACT IF OTHER CHANGES NOT MADE Irish Donor Network Calls for Further Consultation

The Irish Donor Network (IDN) have made clear to government that the proposed change in organ donation to 'opt out' needs widespread consultation and will only be truly effective if accompanied by other major changes in our donation/transplant system.

These changes include the appointment of Donor Co-ordinators in major Intensive Care Unit (ICU) hospitals; the better use of existing donated organs (in particular lungs and hearts); the development of an online registry through which the public can indicate their preference for donation and the need for a properly resourced National Organ Donation and Transplant Office, which is chaired by Professor Jim Egan in the Mater Hospital.

When the IDN met with Minister of Health, James Reilly T.D. recently, the Minister agreed to a consultative process to consider a change in the organ donation law.

This commitment was welcomed by the patient groups represented in the IDN, including CFI and the Irish Kidney Association. At this meeting, the Minister also acknowledged his understanding of the IDN position that improvements in the transplant infrastructure are needed. The IDN looks forward to seeing detailed proposals from the Government on these issues as part of the consultative process.

The Irish government has indicted that it will be changing the present organ donation law in the forthcoming Human Tissue Bill to be published later this year. The present system in Ireland is that you have to 'opt-in' to organ donation and even if you carry an organ donor card your next of kin (NOK) will have the final decision on whether your organs are made available for transplantation.

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Details of the new organ donor law have yet to be published but it is likely that it will be a 'soft opt-out' law which will mean that in future it will be presumed that you have granted consent to have your organs donated, however (crucially) your NOK will still have final say on whether your organs are used for transplant or research purposes.

The IDN has indicated to the Minister that it is likely that there would be less support for a change in the organ donation law if the government was to support a 'hard opt-out' approach, which means that NOK are not consulted.

Based on our knowledge of other countries such as Austria, the IDN understands that even where a country has a hard opt-out approach on paper, in reality NOK still continue to be consulted. In short, hard opt-out does not work, even where it is official policy.

The IDN have contended for a long time that the present infrastructure for organ donation and transplantation in Ireland is not adequate. The system is overly reliant on the (excellent) commitment of individual staff in the organ procurement service in Beaumont; our transplant surgeons and co-ordinators and their multi-disciplinary teams.

Joe Brolly (right), RT commentator and barrister, has been a great ambassador for organ donation in recent months.

The IDN is concerned that the loss of a key person within the present infrastructure could have serious implications for transplant and donation rates in Ireland. If the government is serious about improving organ donor and transplant rates in Ireland then the move to a new opt-out system must not be presented as a panacea. Opt out can only make a substantive change in organ donor and transplant rates in Ireland if accompanied by donor co-ordinators in major ICU hospitals; the national donor registry and the other measures identified in this article.

CFI will keep our members up to date on the consultative process being developed by Government and will ensure that our members will be able to have their say.

EASY GUIDE TO RARE DISEASES Launched on Rare Disease Day 2013

An Easy Guide to Rare Diseases has been produced to increase awareness about the challenges of living with a rare disease and to highlight the priorities that need to be included in the forthcoming National Plan for Rare Diseases (NPRD) in Ireland.

Launched by Minister Alex White TD, Minister of State for Primary Care, on Rare Disease Day 2013, the Easy Guide aims to: • Explain what a rare disease is • Highlight the challenge of living with a rare disease in Ireland through patient profiles • Identify priorities that should be included in the National Plan for Rare Diseases in Ireland (to be completed by the Irish Government by 2013) • Contribute to the development of a National Clinical Programme on rare diseases in Ireland

The Easy Guide to Rare Diseases is now available on www.cfireland.ie.

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One of our own members, Gerry Walker, also features in the patient profile section of the easy guide. Gerry recounts his journey to receiving a double lung transplant in Newcastle. Other patient profiles include those with Friedreich's Ataxia, Ehler-Danlos Syndrome Type 3, Batten disease and 22q11.2 Deletion Syndrome, to name but a few.

The Easy Guide is published by the Task Force on Rare Diseases which brings together key patient networks and advocacy organisations concerned with rare diseases in Ireland.

At the launch was Eibhlin Munroe, CEO, Irish Platform for Patients Organisations Science and Industry, Minister Alex White TD, Minister of State for Primary Care, Philip Watt, CEO CFI, and Ms Avril Daly, Chairperson Genetic and Rare Disorders Organisation.

To access the guide, log on to the publications section of www.cfireland.ie.

REVIEW OF MOBILITY ALLOWANCE AND MOTORISED TRANSPORT GRANT Public Consultation

The Minister for Health, Dr. James Reilly T.D. and the Minister of State for Disability, Equality, Mental Health and Older People, Ms Kathleen Lynch T.D., appointed a project group on 21 February 2013 to review the Mobility Allowance and Motorised Transport Grant schemes. The purpose of the review is find the most appropriate solution or solutions to address the priority transport needs of those who require supports, which will be fully compliant with equality legislation and can be delivered within available funding. These two schemes have recently been closed by the Government, because the Ombudsman has found that they were not consistent with the Equal Status Acts.

The review group is independently chaired and includes representatives of people with disabilities, relevant Government Departments, the HSE, the National Disability Authority, the Citizens Information Board, Pobal and other individuals with relevant expertise. It will report to the Government before the end of May. As part of the review, a public consultation is taking place. Details of how to participate in the process can be found on the Department of Health's website: www.dohc.ie/consultations/open/ Mobility_Allowance.

An online version of the form for submission should be available shortly, but in the meantime the submission document can be downloaded in Word/PDF formats.

Submissions must be made on or before 17:00 on Wednesday 17th April 2013.

Mobility Allowance and Motorised Transport Grant schemes are a vital part of the support infrastructure to help our members live and to be active in the community. Please take the time to highlight the consequences of changes to these schemes for people with Cystic Fibrosis.

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UPDATE ON DROGHEDA PROJECT Completion Likely in Autumn

Work is progressing well on the new CF paediatric outpatient centre in Drogheda. It is expected that building work is on target and that a completion of August 2013 is likely.

See below for photographs of current work.

Progress on the new CF paediatric outpatient centre in Drogheda.

Building work is going well for the new outpatient unit in Drogheda.

A completion date of August 2013 is likely.

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PWCF SPOTLIGHT

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PAGE 12Ă‘13

TWO TRANSPLANTS LATER...

By Olivia Coen

I found it hard to listen to those words, the words you always knew you would hear at some stage, but wanted to avoid hearing for as long as possible. Those words that made you look at accepting your decline in health. "At this stage you should start thinking about the assessment for the lung transplant".

I am a very independent person and have been from a young age. Growing up with Cystic Fibrosis I considered the usual daily routine of taking nebulisers, tablets, etc a small part of my day. To me filling my day with other interests was much more important. CF was something that was always there but I didn't let it define who I was. After school I trained as a Montessori teacher and later as a Play Therapist and have worked with children ever since. I traveled a lot in my twenties, working with children in the States and in Australia. I needed to be organised when traveling and have any documentation required in relation to carrying medicine, especially traveling through countries like Malaysia and Thailand! Likewise when living in Australia I looked up a Cystic Fibrosis specialist to check in with every few months. I found once I had those basic things organised, I could push it to one side and just get on with having a good time.

"Your living is determined not so much by what life brings you as by the attitude you bring to life" (Kahlil Gibran) So when it came to the stage that I was advised to go for the transplant assessment there was a definite change in my mindset. I couldn't push it to the side anymore. At that stage I was put on oxygen, I was struggling for my breath doing the smallest of tasks and I would soon have to give up my job. There was a realisation, which I was stubbornly trying to ignore, that pretty soon my only option was a lung transplant. At 30 years of age that is a hard thing to accept.

So I went for the assessment in 2003, which at the time was in Newcastle in the UK. You have to meet certain criteria to be put on the list. It is based on your lung function, frequency of intravenous treatment, your BMI and your general quality of life. It's a tricky balance, you have to be bad enough to need the transplant but strong enough to go through the surgery. The transplant team checked in with me every time they were in Dublin and I was eventually put on the list in November 2006.

Before I had time to get used to being on the list I got the call, 12 DAYS later!! I was in complete shock. That night was a whirlwind of emotions. Along with all the panic and worry, I was aware that the lungs may not be fully compatible so I had to prepare myself for that too. On the flight over in that little six-seater plane the enormity of the situation hit me. I kept thinking of the family that were saying goodbye to someone they loved and making that generous decision that was about to have a massive impact on my life.

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The transplant team must do final checks on the organs after retrieval to ensure they are fit for transplantation. So I had an hour and a half wait before I found out that the surgery was definitely happening, the longest wait of my life. The news came back that the transplant would go ahead.

A flutter of worry ran through my stomach but I had no time to think as I was promptly wheeled into surgery. The operation was a success and even though the recovery was tough initially I was home within a month.

It is hard to put into words how fantastic it felt to breathe so easily after the transplant.

I was amazed at all this new energy I had and all the things I could do without struggling for my breath. There was a real sense of freedom, especially around the house where I wasn't tied to the oxygen machine anymore. I joined a gym for the first time ever, climbed my first mountain and got a dog! Things I would never have the energy for before. I could immediately feel the difference of going from 16% lung function to 100%! It allowed me to start living a normal life again. I returned to work, caring for children with special needs and couldn't believe how I was able for such a physical job. I continue to use my new lungs to their full capacity and they continue to serve me well.

Olivia was on the transplant list for only 12 days!

Unfortunately one of the side affects of the anti-rejection medication is it can be toxic on the kidneys. Two years ago my kidney function began to decline. Early last year I was started on dialysis and shortly after I was put on the kidney transplant list. Everyone reacts differently to dialysis but I didn't tolerate it well and was very sick whilst on it. So I was delighted to get the call for the kidney in October.

I knew the kidney transplant was a more straightforward operation compared to the lungs so it was a very different night when I got the call to come out to Beaumont. I was allowing myself to be excited! The recovery after the kidney is also very quick, I was home within a week. I noticed the benefits of having a new kidney straight away. No more horrible headaches or feeling sick from the build up of toxins in the body. Best of all I could eat everything I wanted again and say goodbye to that boring renal diet.

So two transplants later I feel fantastic and realise how lucky I am. It is hard to put in to words how grateful I am to my two donors and their families. They have allowed me to live a whole new life that I continue to cherish everyday.

Note: Olivia will be speaking at this year's conference. She will deliver a workshop on 'Tricks of the trade for parents'. As she mentioned in her article she is a child care worker, qualified Montessori teacher and Play Therapist, working with children for the past 18 years. During that time she has worked in a supportive role with the parents of the children in her care. Working with children of all ages in various childcare settings, Olivia brings a wealth of experience to what should be a very interesting workshop.

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EVENT FOCUS

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PAGE 14

CAMINO WALK 2013 Fundrasiing Target Û2,000

A nice walk, some good food and wine Ñ enjoy the local customs and unique atmosphere of it all!

The chosen part of the Camino de Santiago for our group goes across the last 100km of the Camino Frances (the French Way), from Sarria to Santiago de Compostela.

From Sarria, the Camino soon enters woodlands and follows wall-lined paths and dirt tracks, running through farmlands and hamlets. You will also pass by numerous "horreos", Galicia's traditional pillar raised granaries and will soon discover the taste of pulpo (octopus), the pride of Galician people. The green undulating landscape of Galicia will be part of every days walk, until the very end when you reach the mythical city of Santiago de Compostela.

Santiago de Compostela Cathedral.

Bridge-Miño-Portomarín.

The famous arrow and scallop shell.

Your way on the Camino is made easy by clear sign posting. The famous arrow and the scallop shell will show you the way. Although sometimes physically demanding, it only requires a reasonable level of fitness. Moreover, if you feel tired and need a rest, there are several bars and restaurants along the way.

The tour package includes: • • • • • • • •

Return flights Accommodation in double/twin room. Limited singles available on request and with supplement 7 nights, 8 days, with 5 walking days and 1 free day in Santiago Breakfast, packed lunches on route, six dinners + one gala dinner (17th September) included Luggage and airport transfers Guide Camino pack containing: walking notes, pilgrim passports, maps Travel insurance

The fundraising target for this event is Û2,000. Single room supplement Û120 (limited availability).

For further details and advance itinerary, please check the enclosed brochure, visit our website and get in touch!

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FUNDRAISING

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PAGE 15Ñ21

Fundraising activities at both National Office and Branch levels continues to be very busy with many events planned. It is important to remember, however, that reduced disposable income available to the giving public impacts on the bottom line. For this reason, we ask our volunteer fundraisers to go that extra mile in encouraging more supporters to give to the cause of CF. Our National Office fundraising team, Martin, Eufemia, Rosie and Ciara are contactable at 1890 311 211; 01 4962433; and fundraising@cfireland.ie to answer your queries on Garda permits, insurances, and support materials such as t-shirts, posters, sponsorship cards, balloons and collection buckets. You can contact Martin after hours at 087 2627326 if needs be.

We welcome and appreciate the support and efforts of all our volunteer fundraisers. You help us to finance a wide range of services to the CF community.

ONE IN 1000 Blaze a Trail for Cystic Fibrosis this Summer!

Our search for 1000 women to participate in the Flora Women's Mini-Marathon is now well under way, and we need your help to reach the magic number. Supporting this year's campaign we have Actress & TV Presenter Caroline Morahan, RT Lotto & Weather Presenter Nuala Carey & Actress & Model Vivienne Connolly.

The One in 1000 campaign was founded by Zoe Woodward and family after the diagnosis of daughters Emily and Lana (now aged 7 and 5) the family wanted to do something for CF together, so in turn rallied a group of 1000 women into doing something incredible. Since its founding, the campaign has raised over Û500,000 for Cystic Fibrosis Ireland. The aim of the campaign for 2013 is to raise much needed funds to provide new and additional isolation units for children and adults with CF throughout Ireland.

Outlining her reasons for supporting the campaign Caroline Morahan encourages everyone to get involved.

"Whether you're a seasoned sprinter, a jogger or would rather walk Ñ doing the Flora Mini-Marathon in aid of CF is a great way to raise crucially needed funds for those affected by this disease, while doing something good for yourself in the process. Ireland has the highest rate of CF in the world yet our services fall far behind those available in other countries. So grab your friends and lace up your runners on June 3rd! It's a fun day out where you'll really get to make a difference."

Vivienne Connolly with Emily and Lana Woodward at the launch of 1 in 1000.

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L-R: Lana Woodward, Nuala Carey, Caroline Morahan, Vivienne Connolly, and Emily Woodward.

So Ladies, join Caroline, Nuala & Vivienne in supporting Cystic Fibrosis, your support on June 3rd will mean that people with CF can have centres with adequate facilities to avoid cross infection when they attend hospital. These services are not an option for better health, they are essential and they are needed now. So Ladies, let's blaze a trail for CF, join us in making a difference to the lives of adults and children with Cystic Fibrosis in Ireland.

Registration for the Flora Women's Mini-Marathon opened on February 20th and closes April 17th (be warned Ñ registration is filling up fast, so make sure to sign up ASAP before the cut-off point) To sign up with Cystic Fibrosis Ireland and for more information: Call 1890 311 211 or email Ciara at runningforcf@cfireland.ie

SOCIAL MEDIA Contribute to our Online Community

In keeping with communications media, we are successfully using our Social Media sites to build an online community of support and friendship, and to create and maintain awareness of CF in the community at large. Like us at Cystic Fibrosis Ireland on Facebook, and follow us on twitter at CF_Ireland.

CFaces Photoshoot As part of the CFaces Campaign, our online social media campaign promoting the lives of people with Cystic Fibrosis (PWCF), we were delighted to have some wonderful members of CF Ireland get involved and take part in a photo shoot. So make sure to keep an eye out for our up and coming fundraising packs which will star Se n Kavanagh (14), Saoirse Brophy (5), Megan Canavan (10), Ollie Bacon (4) & TJ Tipper (2). Thank you for taking part and raising awareness for Cystic Fibrosis.

Clockwise from left: Se n Kavanagh (14), Saoirse Brophy (5), Megan Canavan (10), Ollie Bacon (4) & TJ Tipper (2).

NATIONAL AWARENESS WEEK 12Ñ19 APRIL 2013 Fast Approaching

Our 65 Roses National Awareness Week is now less than 2 weeks away!

We are delighted to announce a lot will be happening during the month of April thanks to our cohort of volunteers, who rolled up their sleeves and undertook the responsibility of organising events and covering a number of shopping centres throughout the country.

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You may see Megan Canavan (10) on billboards that will be around the country during Awareness Week!

What will be happening?

There will be a number of Coffee Mornings held locally, look out for our posters. Below are just but a few of the events which will be taking place: • 5th April: The Abbey Tavern Night, Howth, Co Dublin • 11th April: Pub Quiz, RT Sports and Social Club, Donnybrook • 12th April: Charity Night, Maldron Hotel, Tallaght • 19th April: Boxing Night in Ballyfermot United Social & Sports Club • 19th April: Cabaret Night in Doyle's Pub, Enniscorthy [447] CF 48 Sheet (FA).indd 1

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A number of our charity partners for the year are also involved in organising events or selling our emblems on their premises. A number of schools have also joined us and will be running their very own purple day or charity day!

In addition our volunteers will be out in force selling our emblems in various shopping centres around the country. For the most updated list of available centres, please visit our website. A heartfelt thank you goes to all those who have been working hard to ensure our 65 Roses National Awareness Week will be a success. We will report back on how it all went in the next issue.

Thanks to JCDecaux CFI wishes to acknowledge the fantastic ongoing support of JCDecaux for CF Awareness Week. JCDecaux have supported the association in our public awareness programs over many years and the extent of our campaign would not be possible without their support. JCDecaux have demonstrated their corporate responsibility in many ways in Ireland including their support for the Dublin Bike Scheme, shortly to be extended to other cities in Ireland.

COMMUNITY AND LOCAL CHALLENGE EVENTS Update

Great Ireland Run Ñ Sunday 14th April Join Ireland's leading running event! Contact Rosie or Martin on the fundraising team for a sponsorship pack. To register, log on to www.greatirelandrun.org Thunderbolt Boxing Night Ñ Friday 17th May 2013 Are you looking for a challenge to get fit? Or are you just looking for a challenge?

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Thunderbolt Boxing Bootcamp are organising a boxing night in aid of Cystic Fibrosis and you are welcome to get involved. The boxing night will take place in the Ballsbridge Hotel on May 17th.

Doors open at 7pm and the first fight starts at 8pm. In advance of the night, Thunderbolt Boxing are running a 6 week bootcamp to get you fit and ready for the night. The bootcamp will start on April 8th, it is open to men and women of any age, and any level of fitness.

For further information on the bootcamp and on the night, please contact Jonathan on 085 8118939, email thunderbolt1obrien@yahoo.ie or visit www.thunderboltboxingbootcamp.com.

Hell & Back Apollo Ñ Saturday 15th June Are you up for a Midsummer's challenge? To register log onto www.hellandback.ie. Contact Rosie or Martin on the fundraising team for a sponsorship pack.

Trafalgar Square to Puck Fair Cycle Ñ 3rd to 9th August Fancy joining Ray Crowley and his cycle team from London to Kerry? Or join in for a day or two?

A fully equipped support vehicle will accompany you throughout. For more details contact Ray Crowley email: crowleyray@gmail.com Dublin Marathon Ñ Bank Holiday Monday 28th October 2013 Join Team CF Ireland and run the Dublin Marathon in 2013! Registration is now open so sign up today! To register log on to www.dublinmarathon.ie. Contact Rosie or Martin on the fundraising team for a sponsorship pack.

Skydive for Cystic Fibrosis Are you up for a challenge this Spring? Would you like your company to get involved in a group jump? How about 5,000 feet!

The first thing to do is contact The Irish Parachute Club and express your interest in taking part in a charity skydive. The Irish Parachute Club, Clonbullogue Airfield, Edenderry, Co Offaly or tel: 1850 260 600 / www.skydive.ie Once you have received the information from the Parachute Club, please contact Rosie in the National office to receive your Fundraising pack.

OVERSEAS EVENTS Marathons and Walks

We have a number of overseas events taking place this year. If you would like further information on any of the events listed below, or would like to get involved, please contact Martin or Eufemia @ 01 4962433 or email esolinas@cfireland.ie / mcahill@cfireland.ie London Marathon 2013 The Virgin London Marathon 2013 will take place on April 21st.

Good luck to our Team!!

Camino Walk 2013 Ñ 12th /19th September 2013 We are delighted to announce the launch of our first Camino Walk. For full details see Events Focus section and enclosed brochure

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Paddy Kierans Memorial Walk Ñ Tuscany 2013 Ñ 5th /12th October 2013 Our Tuscany Walk 2013 has so far raised a huge amount of interest. Most places are now allocated, with a few remaining. Do not miss the opportunity to walk the wonderful hills and vineyards, while soaking up history, sunshine and enjoying good food and great company, while raising much needed funds for CF. ING New York City Marathon 2013 Ñ 3rd November Details for the ING New York City Marathon 2013 are now available.This is the most sought after marathon event for run lovers and entries are already sold out. Your only way to ensure you are part of it is by joining our Team.

Places are available as a Tour package only, which includes return flights, 4 nights accommodation, transfers and guaranteed entry. Interested? Contact us soon as we only have a limited number of spots and places are allocated on a first come, first served basis.

ONGOING FUNDRAISING INITIATIVES See Below for More Details

Wedding Favours Getting married in 2013? Make your wedding favours truly memorable by donating to Cystic Fibrosis.

Donating in this way is a unique way of thanking your guests for celebrating your wedding. It is the perfect finishing touch to your big day and is a more meaningful gift than traditional wedding favours. In return we can provide you with one card per table.To order Wedding Favours please log onto www.cfireland.ie or email fundraising at fundraising@cfireland.ie Recycling for CF Get your school or company involved. Full details under Fundraising on our website www. cfirleand.ie or for queries please contact the CFI Fundraising team at LoCall 1890 311211 or email fundraising@cfireland.ie

SPECIAL PROJECTS Fundraising is Underway

Waterford Hospital Project The fundraising drive to raise Û250k, which is the estimated cost of refurbishing 4 rooms for paediatric isolated ensuite facilities in Waterford Regional Hospital for Cystic Fibrosis has well and truly started.

With approximately Û45k raised to date, the fundraising committee have organised a lot of events so far and we thank them for all their hard work. Follow them on Facebook: www.facebook.com/ WRH Cystic Fibrosis Project

Maria Phelan organised a Head Shave on 26th Jan in Kilkenny raised Û9,600 for the Waterford project. Pictured is Stephen Tobin, Conor Conway, Michael Kent, Paul Kenneally, Richie Davis, John Phelan, Titch Phelan, Joe Welsh and Sam Phelan.

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Upcoming Events There will be a number of events held locally, look out for our posters. Below are just but a few of the events which will be taking place: • 14th April: Willie Loughman Forest Rally • 26th April: Fashion Show, Dooley's Hotel, Waterford • 7th Ñ 9th May: Mizen To Malen Cycle, See Website: www.cyclesports.ie • 31st May: Charity Football Match, Waterford Beaumont Hospital Project We urgently need to raise Û2.5 million for 12 inpatient isolation rooms in Beaumont Hospital for people with cystic fibrosis, and we need your help. You can help us in a number of ways by: • Organising a fundraiser. See a list of fundraising ideas on our website: www.cfireland.ie/pdf/ fundraising_ideas_list.pdf • Taking part in one of our fundraisers such as the 'Head to Head Walk' (see below) • Buying a brick here for the CF unit for only Û10 Head 2 Head Walk Ñ Sunday 29th September 2013 The 1st CF 'Head 2 Head Walk' will take place this year on Sunday 29th September. All funds raised from this event will go towards the Beds for Beaumont Campaign.

The 26 mile route will take place in the beautiful surrounds of Dublin Bay. Participants can choose to walk from Howth Head to Sandymount or from Sandymount to Bray Head. The walk will start from 9:00 am.

See map and check back soon on our website for more details! If you would like to organise a fundraising event for this project please call the fundraising Team in the National Office.

CORPORATE FUNDRAISING New Charity Partner

Welcome 3M Ireland We would like to welcome on board 3M Ireland as another charity partner this year!

Would your business like to follow in the steps of 3M? Whether you are planning a long-term partnership or a once-off event, our team are here to support you, email fundraising@cfireland.ie to get involved, raise staff morale and make a difference to the lives of people with CF.

THANK YOU Overview Below

UCD Med Society We would again like to thank the UCD Med Society for their collection and raising Û3,500.

Hell & Back Winter Well done to all our winter participants who seriously mucked it out in the cold and an amazing Û10k was raised!

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David Ryan and Aoife Cooney from UCD Med Society presenting a cheque of Û3,500 for CF.

Hell and Back Participants, Donal O'Connor and Team.

A sponsored ride in aid at Kilcooley estate raised Û9,000 for CF.

RCSI Rag Week Thank you to all students of RCSI who raised Û2443.92 from their Rag Week in February.

Sponsored Horse Ride The photograph below was taken in Kilcooley estate on the 10th of October 2012 in aid of Cystic Fibrosis which raised Û9,000. It involved a horse and pony ride of 8 miles and a walkers course of 5 miles through a private estate.

Students from St.Davids CBS who did a cake sale to raise Û250 for CF. Back (L-R): Craig, Ali, Thomas, Goodwill, David and Tony. Front: Anne Maples and Kevin.

A Charity Hurling Match raised Û463.20 for CF.

St Andrews College, Dublin raised Û700 for CF.

St. Davids CBS Cake Sale Students from St.Davids CBS who did a cake sale to raise Û250 for CF. Ms Rowan and Kelli Maples nephew, Kevin McKenna, organised the fundraiser and all the boys and Ms Rowan baked for the cake sale. Kevin is holding up the cheque with his nanny Anne Maples.

Charity Hurling Match Thank you to Minchin family and friends for raising Û463.20 from Charity Hurling Match.

St Andrews College Ñ 'Copper Crawl' Event Thank you to 2nd year students of St Andrews College, Dublin who raised Û700 from a 'Copper Crawl' Event.

Barcelona Marathon We are lucky to have fundraisers who join amazing challenges and successfully complete them!

Gavin O'Flaherty (parent) and Paul Coveney from Mason Hayes and Curran, Solicitors, successfully completed the Barcelona Marathon in 2012, and while they funded their own trip, they managed to raise an outstanding Û6,848.20 for Cystic Fibrosis. A huge thank you and acknowledgement is due to both parties for such amazing achievement!

We offer this as an example of how much each one of us can achieve by setting up our own challenges, whatever locally, nationally or, as the above, internationally, and please don't forget the Fundraising Team are here to support your efforts at all times.

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About Cystic Fibrosis Ireland (CFI)

CFI is a registered charity CHY 6350 that was set up by parents in 1963 to improve the treatment and facilities for people with CF in Ireland. It is a national organisation with many Branches around the country.

CFI is committed to working to improve CF services in Ireland and our recent progress includes: ● Lobbying to ensure that the new national adult CF centre in St Vincent's University Hospital was completed with up to 34 in-patient beds for people with CF ● Providing funding towards new CF Units around the country including Crumlin, Drogheda, Galway, Mayo, Waterford, Beaumont and Limerick Hospitals ● Funding research in Cork University Hospital, St Vincent's University Hospital and University College Dublin ● Campaigning to improve the rate of double lung transplantation in Ireland ● Providing advice and expertise

ISSN 2009-4132 ISSN 2009-4132 ISSN 2009-4132

Cystic Fibrosis Ireland t: +353 1 496 2433 24 Lower Rathmines Road f: +353 1 496 2201 Dublin 6 e: info@cfireland.ie

Ireland w: www.cfireland.ie

Company Reg: 449954

Charity: CHY6350 22