Spectrum - Issue 39 Final

SPECTRUM

Published by Cystic Fibrosis Ireland

IN THIS ISSUE:

• Update on Building Developments in Drogheda, Cavan and Mayo • Launch of CFI Impact & Annual Report 2012/3 • Fertility Grant Scheme 2014 Ñ Now Open • 'My Life with CF', Spotlight By Christopher Collopy • Tough Mudder 2014 with Pat Divilly • The One in 1000 Countdown Begins May/Jun 2014

Issue 39: May/Jun 2014 1 www.cfireland.ie

Dear All, I remember at my first CFI conference in Cork in 2009, I asked many of those attending 'what can the association do better?'. The most frequent responses back to me were: • Better communication from the national office • The need to improve CF centres outside of Dublin as well as in Dublin • Better transparency on where fundraising was spent While recognising we will always be on a journey, hopefully you will have seen a major difference over the last 6 years as we strive to meet our many goals.

This issue of Spectrum looks back as well as forward. We feature updates on two completed building projects; Drogheda and Cavan, that will make a big difference to CF services in the north east of Ireland.

We review our recent annual conference in Galway 'Better Together', which remains a highly enjoyable as well as informative event. If you missed it, why not tune in to the podcasts on our website.

We highlight the work of CFI over the last couple of years through a new Impact report. We thank some of those who have fundraised and supported us in recent weeks and we put the spotlight on many positive developments.

It's been a difficult time for some families too. It was very moving to listen to Bernie and Colm Priestley on the Late-Late Show talk about her daughter Triona. We take time to pause and to remember Triona and all the roses at this time.

Kind regards,

Philip Watt (CEO) Alica May (Editor) Front Cover: Lana and Emily Woodward with their mum Zoe getting ready for 1 in 1000.

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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Section 01:

Section 04:

LATEST NEWS:

PWCF SPOTLIGHT:

CF Transplant Rates Still Holding Up in 2014

My Life with CF, By Christopher Collopy, PWCF Age 17 from Co Limerick

Page 2Ñ8

Shortages of Staff and Government Cutbacks

Page 13Ñ15

Meeting with Minister Reilly on Beaumont Hospital

The Road to Transplant and Fundraising for my Local Branch, By Aoife McKiernan, PWCF Age 30 from Co Cavan

Agreement in Cork

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Building Developments in Drogheda, Cavan, Mayo 'Stepping Up' Ñ Transition in Care Project wins 2014 'Crystal Clear Health Literacy Award' Universal Health Insurance Tipperary PWCF, çine Stafford, Honoured at 2014 Pramerica Spirit of Community Awards

Section 05:

FUNDRAISING: Page 16Ñ21

Challenges and Events

CFI Annual Conference 2014 and Photo Gallery

1 in 1000

CFI Impact & Annual Report 2012/3

Community Events

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Thank You 65 Roses National Awareness Week 2014

Section 02:

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RESEARCH: Page 9 Research on the TOBI Podhaler Ð Can you Help?

Access to Orphan Drugs and Therapies --

Section 03:

INFORMATION/ SUPPORTS: Page 10Ñ12 Fertility Grant Scheme 2014 Ñ Now Open!

Liquid Therapy Ð Now Available in Ireland Exam Time Ð Best of Luck to all PWCF! Respiratory Bugs Common in People with CF Nutrition For Your Baby Travel Insurance and Travel Tips --

May/Jun 2014

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LATEST NEWS

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CF Transplant Rates Still Holding Up in 2014 It's great to report there have been 6 CF double lung transplants (adults) undertaken in the Mater since 1 January 2014 There were 9 CF undertaken in 2013, which was a record year.

Most of the new Whitty wing in the Mater Hospital which is where the transplant unit will be located is now opened. However one floor remains closed due staff shortages. CFI met with the CEO of MMUH in March 2014 and have urged that the remaining floor is opened as soon as possible. We have been told this will be done on an incremental basis as resources become available.

CFI took a leading part in organ donor awareness week in March 2014 and CFI played a significant role in securing Û2.9m additional resources for organ transplantation in the 2014 HSE budget. This means that 19 additional staff will be recruited this year which will benefit all transplant programmes.

The vacant cardio-thoracic post in the Mater once held by Mr Freddie Wood has recently been filled through the appointment if Ms Donna Eaton, a transplant surgeon who until now was covering for surgeon Ms Karen Redmond who is on maternity leave. We congratulate Ms Eaton on her appointment and thank Professor Jim Egan for his great commitment to improve lung transplant rates in Ireland, including for CF. The first annual report of the National Office for Organ Donation and Transplantation will be published shortly.

Shortages of Staff and Government Cutbacks The lack of replacement of key CF staff who are on maternity and sick leave remains a major priority for CFI advocacy. We have had an increase in reports from inpatients and parents that CF nurses appear to be very stretched and under pressure in their work. CFI will be meeting with the hospital on this issue shortly. It is very worrying that the HSE are already issuing warnings to hospitals to reduce their expenditure for this year. Disciplines that are particularly affected are nursing, dietetics, physiotherapy, psychology and social work. In some CF centres, key CF staff such as psychologists have never been appointed. This is completely unacceptable and is undermining the care of our patients.

Meeting with Minister Reilly on Beaumont Hospital In April, a CFI team including Philip Watt, John Coleman and Katie Murphy and including Professor McElvaney, met with Minister James Reilly TD to highlight the lack of adequate number of inpatient rooms in Beaumont Hospital. There are only 4 CF inpatient rooms in Beaumont Hospital when it is clear that from present numbers 13 are needed. The estimated cost of building these rooms is Û2.5m and there will be additional staffing costs for the hospitals. CFI will continue to advocate and fundraise on this issue.

Agreement in Cork CUH and Build4life, a locally based CF charity have reached an agreement on funding for the proposed adult CF unit in Cork University Hospital. The proposal to have an agreement was put forward by CFI have a three months impasse on this issue. We have been told by CUH that a contractor will be appointed shortly. CFI urges that the unit is built as soon as possible as there has already been considerable delay on this project.

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Building Developments The Paddy Kierans Outpatient Unit Opens in Drogheda The official opening of the new CF paediatric outpatient unit at Our Lady of Lourdes Hospital, Drogheda took place on Thursday 3rd April and hundreds of people turned out for the occasion.

The new unit is the culmination of many years of dedicated hard work undertaken voluntarily by the Louth, Meath and Dundalk Branches of CFI. "For all those people that have suffered the lack of services for CF in the past something great has happened here today," said Cyril Gillen, Chairperson, Drogheda Branch, CFI. The new outpatient unit was dedicated to the memory of the late Paddy Kierans, the Drogheda man who was a tireless champion for CF Ireland. According to Cyril, Paddy was "a man who turned family tragedy into a national mission to improve the situation for others. He would have loved to have been here today, it was part of his dream to see this unit open."

The clinic cost Û670,000 to build of which Û570,000 was raised through fundraising and charitable donations. The remaining Û100,000 was provided through a grant from the national lottery supported by Minister for Health, James Reilly TD.

Cyril Gillen, Chairman of the Drogheda Branch CFI, Julia Kierans, Peter Hughes, Drogheda Branch CFI, Mayor Richie Culhane and Loretta Allen Byrne and Maire Gallagher of LM4CF.

Martha and Malachy Reilly (PWCF) with their children at the opening of the new unit.

Mayo Build Update The Mayo building project, which will provide a new CF outpatient clinc in the west for PWCF, started on the 26th of January 2014.

The contractor is Mountain View construction from Castlebar, Co Mayo.

The build is progressing on time and within budget with outer walls and the second floor being finished at this point, the roof is due in place in the coming weeks. The project cost is Û1.3 million and is due to be finished at the end of 2014.

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Cavan Outpatient Suite Opens Dr. James Reilly, TD, Minister for Health officially opened the Cystic Fibrosis Outpatient Suite at Cavan General Hospital on Friday, 11th April.

The new suite contains two outpatient treatment rooms, which provides a separate designated area for both adults and children with CF to receive their care and treatment in and reduce the risk of cross infection. This project was a joint initiative between Cavan and Monaghan Hospital and the Cavan Branch of CFI. "This new facility will improve the quality of life for CF patients in Cavan and in the surrounding areas by facilitating ambulatory daycare as close to home as possible" commented the Minister.

Raymond Dunne, Chairperson of the Cavan Branch of CFI said "It is truly an historic, watershed moment in the lives of people with Cystic Fibrosis (PWCF) from the area. The new Cystic Fibrosis Outpatient Suite at Cavan General Hospital represents a major step in the avoidance of cross infection and will bring peace of mind to PWCF. It makes specialised, complex, multidisciplinary care deliverable in a safe environment. I would like to record our appreciation and gratefulness to so many in HSE associated with this project and to Minister Reilly for all your help in making the realisation of a vision/dream come true in this most welcome, wonderful, magnificent facility".

L-R: Felix Gormley, Rosaleen Cronin and Raymond Dunne at the official opening of the new unit.

Facilities in the new suite will greatly improve services for PWCF attending Cavan hospital.

'Stepping Up' Ă‘ Transition in Care Project wins 2014 'Crystal Clear Health Literacy Award' The 'Transition from child to adult care for young people with chronic diseases' study is nearing completion. Researchers at the school of Nursing and Midwifery at Trinity College Dublin (TCD) are currently evaluating data and developing recommendations for best practice for preparing young people with chronic conditions, including cystic fibrosis, transitioning from paediatric to adult care.

Cystic Fibrosis Ireland (CFI) representatives have worked on this project from the beginning and are assisting in the writing of recommendations for PWCF, alongside the research team and CF specialist healthcare professionals.

An additional piece of this project saw the development of an online resource which helps young people become more aware of transition and also provides useful tips and tools to help make a smooth transition. Bevin Murphy (PWCF) and Daniel O'Carroll (PWCF) contributed greatly to this resource and you can have a look at what they hves to say about their experiences of transitioning to adult CF care by visiting the website at www. steppingup.ie. We would like to congratulate all of the team who have been working on this project on winning the Crystal Clear Health Literacy Award.

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Universal Health Insurance Ð Public Consultation The white paper on Universal Health Insurance (UHI) has been published and is open for consultation until the 28th of May 2014. Cystic Fibrosis Ireland (CFI) is engaging in the consultation process and is preparing a paper to be submitted on behalf of PWCF and their families. CFI welcomes discussion and debate on how the health system in Ireland is structured and financed. Our key concern, naturally, is how people with CF (PWCF) and their families will fare under the proposed new UHI. The short answer from the perspective of CFI is that it is very unclear whether UHI will improve the care given to PWCF and their families and indeed there are a number of concerns that have already emerged and highlighted in this submission.

Some of our primary concerns include; lack of detail provided in the white paper, the very short timeframe for consultation, the focus on adapting the 'Dutch Model of Care' which we feel is a flawed system and alternative models need to be explored, concern around the concept of a 'health basket and commission' and a concern for the future of the Long Term Illness scheme.

In our submission we have also taken the opportunity to highlight the need to not only protect services already in place, but to improve the care being afforded to PWCF. In particular, around access to medicines (including high-tech, orphan drugs), meeting the necessary staffing levels, the continued need for single, isolation rooms for the treatment of all PWCF and suggesting ways to improve the OPAT service, of which PWCF are the heaviest users of in Ireland.

The white paper is available for public view and we encourage PWCF and parents to have their voices heard by submitting their views through public consultation. The White Paper is available for viewing at the following link: http://health.gov.ie/future-health/universal-health-insurance/the-whitepaper-on-uhi/

Tipperary PWCF, çine Stafford, Honoured at 2014 Pramerica Spirit of Community Awards çine Stafford, PWCF aged 18 of Clonmel, Co. Tipperary, has been honoured at the 2014 Pramerica Spirit of Community Awards. çine and 19 other Pramerica Spirit of Community finalists received Û500, an engraved silver medallion and were praised by Republic of Ireland Football Manager, Martin O'Neill. çine fundraises for cystic fibrosis and volunteers for the Society of St. Vincent DePaul. "I have lived with cystic fibrosis for 18 years, but I believe nothing should hold anyone back," says çine. The money she raises will be given to the new cystic fibrosis facilities at Waterford Regional Hospital.

2014 Pramerica Spirit of Community Awards finalist çine Stafford from Clonmel pictured with Republic of Ireland Football Manager, Martin O'Neill and Andrea McBride, Vice President - Systems, Pramerica Systems Ireland Ltd. Photo

by Paul McGuckin.

çine also set up the St. Julia in her school for the Society of St. Vincent DePaul. After raising Û4,000 for the charity, she continues her legacy of giving by mentoring her peers on how to continue her work. çine has also travelled to Lourdes, France, as a volunteer and helps connect older people with their families abroad by teaching them basic computer skills, how to use Skype and how to send email.

Congratulations to çine from everyone at CFI! May/Jun 2014

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CFI Annual Conference 2014 Many thanks to everyone who attended and tuned in to our recent annual conference held in the Galway Bay Hotel in March. Minister of State Ciaran Cannon TD, opened the conference for CFI. Delegates heard from a number of inspiring people with cystic fibrosis including 17-year-old Donnacha Gutteridge who spoke about life since Kalydeco, and 29-year-old Paul Wynne who last year underwent a double lung transplant and welcomed a new baby girl into the world Ñ all in the space of two weeks.

Patrick Dempsey also spoke about his journey to a double lung transplant and played a very moving video that documented this process (available on request).

GAA commentator Joe Brolly was also presented with a special recognition award for his campaign to change the law in relation to organ donation and support for cystic fibrosis care. Awards were also given to the Drogheda/Louth Branches of CFI, the Cavan Branch of CFI and Michael Hickey (who paid tribute to his wife Bridie) of the Tipperay Branch.

With many thanks to the Galway Branch, especially Mary Lane Heneghan, and her assistance with conference preparations and for welcoming us all so warmly to Galway.

Just a reminder that presentations and talks that took place in the main hall are available on our website should you wish to review or watch for the first time: www.cfireland.ie/index.php/conference2014 Workshops Did you miss any of the workshops from the conference?

Deal with the Difficult Questions, Dr Alistair Duff Airway Clearance Techniques and Exercise Tips, Irene Maguire Infection Control in the Community*, Prof Philip Murphy and the Community cross-infection group Compliance & Adherence in CF*, Dr Alistair Duff, St James University Hospital, Leeds New Parent Discussion Group, Dr Mary Herzig, UHG & Caroline Heffernan, CFI (note that it was agreed by the group to not take notes at this seminar) • Transition from Paediatric to Adult Care, Prof. Imelda Coyne, TCD • • • • •

You can watch those marked with an asterisk online at www.cfireland.ie/index.php/conference2014.

Summary notes are also available at the same link.

If you have any feedback from this year's conference, please email info@cfireland.ie or call 01 4962433.

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Better Together

May/Jun 2014

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CFI Impact & Annual Report 2012/3 CFI published it's Impact & Annual Report in March 2014 to reflect the work of the association and to highlight our impact over 2012/13.

By working in partnership with the dedicated CF centres around the country, our Branches and our many supporters at a national, regional and local level, the report illustrates the advances in CF care that have been made in Ireland throughout this period.

Some of the most important developments include: • The opening of the new daycare and inpatient centre in St Vincent's University Hospital in August 2012 • The Irish Government's decision to approve the use and payment of the ground breaking drug 'Kalydeco' in February 2013 • The rate of CF double lung transplantation increased from 4 in 2012 to 9 in 2013 • Û2.7m committed by CFI to build CF inpatient and outpatient units around the country in five hospital centres • Û314,000 spent on essential grant assistance for PWCF and their families (see overview below) • Û176,000 spent on CF research projects undertaken in Ireland • CFI was awarded CMG 'Outstanding Contribution to Healthcare' award for 2013 • CFI celebrates and remembers 50 years of work to improve CF services and supports in Ireland from 1963-2013

To read the full impact report, and to access previous annual and financial reports, go to: www.cfireland.ie/index.php/annualreports

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RESEARCH

SECTION 02

PAGE 9

Research on the TOBI Podhaler Ð Can you Help?

Bernadette McNally from McNally and Associates is undertaking research on the TOBI Podhaler on behalf of Novartis Pharmaceuticals. Bernadette is looking for people with CF who are taking the TOBI Podhaler as an alternative to nebulised Tobi to answer a short questionnaire on the TOBI Podhaler.

PWCF willing to participate will have to fill out a CF patient research consent form which will be sent to you from CFI if required. PWCF who participate will receive a gift card as a thank you for your time.

If you are interested, please contact Bernadette directly on t: 01 2788148 / 086 6082121 e: bernadette@mcnallyassoc.com

Access to Orphan Drugs and Therapies At a recent EURORDIS (European Rare Diseases) conference CF Ireland were invited to take part and speak about the role of patient advocacy in the reimbursement of new, expensive therapies Ñ using Kalydeco as an example.

Having attended the conference and spoken with people representing a myriad of rare diseases, it is very evident that the limitation of health economic assessment for rare diseases is a common worry for all disease groups. As medical treatment moves to a more personalised medicine approach, there is a rise in the number of new innovative therapies for rare diseases. This is great news for people living with rare diseases where there are often no alternative treatments available; however, access to these therapies causes a great deal of stress and anxiety. Current health economic assessments are limited in their ability to accurately and fairly assess the 'cost-effectiveness' of orphan drugs. Some of the limitations include: • Numerous limitations with the QALY (Quality Adjusted Life Years gained) Ñ no consideration for wider, long-term savings to be made (joining the workforce, prevention of other treatments being needed, etc) • Presumption that health economics can accurately value the quality of a person's life • Lack of understanding of implications of living with a particular illness, such as QoL, levels of suffering, etc.

• The utilitarian view Ñ "the greatest good for the greatest number" • Lack of comparators in the Health Technology Assessment • Placing a price on a person's life is degrading for people living with illness These limitations have been recognised by national Health Technology Assessment (HTA) agencies and communication between patient groups and national and international bodies are improving. There is a gradual move towards assessing 'patient-reported outcomes' more formally and incorporating these views into the assessment process. However, we are still have a way to go to find a fair, transparent process to assess the 'costeffectiveness' of orphan drugs. CF Ireland is working alongside other rare disease groups to ensure our voices are heard and to push for the reshaping of health economic assessments for rare diseases.

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INFORMATION/SUPPORTS

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Fertility Grant Scheme 2014 Ñ Now Open!

The CFI Fertility Grant Scheme provides financial support to people with cystic fibrosis (PWCF) and their respective partners who wish to undergo fertility assessment/treatment in the hope of becoming pregnant. Since this scheme was first rolled out in 2010, a total of 41 fertility grants have been awarded to members.

"Receiving the fertility grant was a huge relief to us Ñ without it we simply could not have afforded the procedure. We are eternally grateful to CFI for helping us in this huge step towards creating a family."

PWCF, Co Tipperary How much funding is available?

The value of the grant for first-time applicants is Û3,000. The value of the grant for second-time applicants is Û2,000. Applicants can now apply a third time to this scheme. This decision was made in response to feedback from PWCF. The value of the grant for third-time applicants is Û1,000.

How do I apply?

A Fertility Grant Application form must be completed and supporting documentation from your CF centre and the fertility clinic you plan on attending must be sent to the CFI National Office. Members are advised to read the fertility grant guidelines in advance of applying for this grant.

What is the deadline for all applications?

The deadline for submitting the application form and supporting documentation is Friday 26th September 2014.

Where can you get more information about this call?

Log on to www.cfireland.ie to access the application form and guidelines. Alternatively contact Alica, Services and Information Officer t: 01 496 2433 e: amay@cfireland.ie

Robert Cook, with his son Callum, also benefitted from this scheme.

Kelli Maples with her daughter Aoibheann, shared her experience of fertility treatment in a previous issue of Spectrum.

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Liquid Therapy Ð Now Available in Ireland 'Mauli Ola' in Hawaiian means 'Breath of Life' and it is under this banner that a group of Californian surfers have been operating for the past seven years bringing over 1,000 people with CF into the ocean to experience its therapeutic benefits through the joy of surfing. This year this service is available in Ireland!

Salt water (sodium chloride) is known to irritate the build up of mucus on the lungs and enables individuals to cough it up leaving their lungs feeling fresher and cleaner.

Being in the surf has many benefits; from emotional release to physical recreation, surfing allows the individual to work their body, mind and soul in an environment that produces positive energy! Whether it's experiencing the ocean for the first time to catching your own waves, on your own or with your friends, Liquid Therapy provides the platform for people with CF to reach their aquatic potential.

Liquid Therapy is an award winning, not for profit foundation that was founded in 2011 in Donegal. They provide one to one surfing experiences that are catered to the needs and level of the individual. 2014 will see them running their first full-time ocean program, enabling them to offer surf therapy to individuals with CF, not only in Donegal but also across the country.

Liquid Therapy caters to all ages and abilities and is run by a highly experienced and passionate group of surfers and volunteers. Now in their fourth year they will be running a full-time program starting in June, allowing individuals to sign up for a first time surfing experience or an entire week of riding waves! They will also be running surf clinics across the country. To find out more please check their website: www. liquidtherapy.ie or find them on Facebook. To speak to the team call t: 087 7023134 w: www.mauliola.org/mof-tv

Exam Time Ð Best of Luck to all PWCF! CFI staff would like to wish all PWCF doing both the leaving cert and junior cert the very best in there exams this June.

For PWCF who are looking to go on to 3rd level we recommend that they start to plan for college once exams are finished. If you know where you would like to attend you should make contact with the Disability Office or Officer in relation to accommodation and start date. The Disability Officers can assist PWCF in securing campus accommodation which is ideal for PWCF. We would also like to remind PWCF that you can still change your CAO application up to July 1st Ñ for CAO change your mind applications see www.CAO.ie. Student grants are now also open for applications via SUSI (Student Universal Support Ireland) website www. susi.ie. For more information on going to college see www.cfireland.ie/ pdf/Guide_Third_Level_2012.pdf.

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Respiratory Bugs Common in People with CF What is it? Where do you get it? How do we treat it? These are some of the questions frequently asked in relation to respiratory bugs common in people with CF. People with cystic fibrosis are vulnerable to germs that can cause serious infections. These infections are often difficult to treat with antibiotics so it is important to keep these bugs from spreading. A new information sheet is now available that outlines some of the most common respiratory bugs in people with CF. You can view it online at www.cfireland.ie. Alternatively please contact the National Office and we can send you out a copy, or email amay@cfireland.ie.

Nutrition For Your Baby Good nutrition plays an important role in your child's overall wellbeing. A child's special nutritional requirements is explained in this information sheet for new parents as well as what is needed to ensure a baby grows well and gains weight. It also includes information and advice on which milk to feed your baby with CF, pancreatic enzymes, vitamin supplementation and weaning.

This information sheet will be included in the support pack that is sent out to new parents following their babys' diagnosis. It was produced by CFI in association with the CF Dietitian Specialist Interest Group.

You can also view this information sheet online at www.cfireland. ie or contact us to request a hardcopy.

With thanks to Abbott Laboratories Ireland Limited who sponsored CF Ireland with an unrestricted educational grant to print these resources.

Travel Insurance and Travel Tips Going anywhere nice this year? CF Ireland have drafted up a few helpful tips to help with preparations. From health and travel documents to medical devices and medications, all the information you should need is included in our 'Travel Tips' and 'Travel Insurance for People with CF' information sheets!

Both documents are available on our website but if you'd like a hardcopy just give us a call and we will send one out to you.

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PWCF SPOTLIGHT

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My Life with CF

By Christopher Collopy, PWCF Age 17 from Co Limerick I'm Christopher Collopy, 17 years old, and I was diagnosed with Cystic Fibrosis when I was four years of age.

When I was diagnosed it came as quite shock to my mother, as it would any mother. A heart-breaking moment to hear that one's son has been diagnosed with such a life-threatening disease.

Over the years, it became more and more difficult, not only for me, but for my parents. I would be admitted to hospital frequently due to continuous lung infections Ñ two weeks at a time, every other month.

However, as I became older I would spend a week or so in hospital, and a week at home on IVs. My mother would undertake the IV antibiotics, getting up at all hours to organise my medication for the upcoming day.

I found 2006 to be one of the hardest years yet. At nine years of age, it was extremely hard for me and my body, being admitted to hospital every few weeks for lung infections that just never seemed to leave.

It took a toll on my parents too, having to care for both my younger brother and I.

Chris with his mum Noelle on holiday in Lanzarote last year.

It was early 2013 when I was told that because of my G551D mutation of CF, I would be a suitable candidate for the Ivacaftor (Kalydeco) drug.

Having come to grips with what this drug was to do for people with my gene, I was ecstatic, but at the same time cautious as to whether it would work for me. All in all, I was excited to hear that a new drug, with effects as great as these, was being given to patients Ñ at a very high price, mind you.

"It is now a year since I started taking Kalydeco, and the effects it has had are amazing...it has changed my life beyond measure" March of 2013, I got a phone call from my mother who told me that she had over Û19,000 in her purse. My immediate thoughts were "What has she done...?!". She went on to explain that she had the drug that could possibly change my life. Without any shadow of a doubt, it did.

It changed my life beyond measures.

Chris with his girlfriend Katie who is a huge part of his life.

It is now a year since I started taking Kalydeco, and the effects it has had are amazing. My lung function has improved about 40%, seeing to maintain around the 120% region now. My weight has increased by over 10kg and my overall happiness and well-being has improved hugely. It has been a good four years since I was admitted to hospital for IV antibiotics Ñ I have no words to express how I feel about this.

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Kalydeco, I was told, was not a cure. And sure, it isn't. I continue to take my medication I was taking ten years ago, but the change my body has made is overwhelming for me, at times. I continue to grow more and more everyday, and feel a sense of relief at times, not having to go through what I did as a child, knowing that if I continue the way I do, CF won't hinder my life.

Cystic Fibrosis has been hard to live with, yes, however, it has given me more and more reason to be happier each and every day I continue to live.

I will continue to be happy, no matter what. Right now, I'm the happiest person in the world.

L-R: Chris's 10 year old brother Adam, mother Noelle, girlfriend Katie and Chris.

The Road to Transplant and Fundraising for my Local Branch

By Aoife McKiernan, PWCF Age 30 from Co Cavan My name is Aoife McKiernan and I have CF. As we all know CF is a degenerative disease and most of us will need a double lung transplant at some point if we choose to go down that route. I made the decision that I wanted to have the double lung transplant.

In September 2012 I got a very bad chest infection and my lung function went down from 30-31% to 22%. I was finding the most basic everyday tasks a struggle so after some consultation with my doctor in Cavan we decided it would be best if I began the process of getting accepted on the transplant list.

It took many months of persuading and tests and more tests before they considered me. I was not 100% reliant on oxygen but I was using it at night and more frequently during the day as well as the bi-pap in the evenings for a couple of hours. It took a lot of persuading for me to convince them that I was ill enough to go on the list but eventually in May 2013, after meeting all the surgeons, I got a call one Friday evening saying I had been accepted. I was both scared and delighted.

I quickly put it to the back of my mind but always remembered to have my phone on me and to let the team in the Mater Hospital know if I was going away for a few days.

Aoife with her boyfriend of ten years Damien O'Reilly.

"Only five weeks on the list and I got a call one Sunday evening and the Mater Lung Only five weeks later on the 30th June, I got a call one Sunday evening Co-ordinator told me there and the Mater Lung Co-ordinator told me there was a match and to was a match and to come up come up as soon as I could. I was very scared, but I was also certain as soon as I could" I would be going home that night as I knew from other friends that had been called several times that they don't just call one person. As it turned out there were two other people called for the same lungs that night. At 1.15am, the Co-ordinator came in and said that the lungs were a perfect match and the surgery was going ahead. To say I was shocked was an understatement. I was quickly brought down to surgery and the last thing I can remember is saying goodbye to my mother and partner.

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While I was in hospital recovering, a very good friend brought me in a signed Ireland Rugby Jersey. I was delighted with it and asked her if she would mind if I raffled it off to raise money for the Cavan Branch of Cystic Fibrosis Ireland (CFI) as they were in the process of building new units for PWCF. She agreed that it was a great idea and we started coming up with ideas of how we could get the most money. In the end, another good friend, Cyril O'Keeffe, suggested a great idea. He is part of the Cavan Rugby Male Voice Choir, and he suggested that we hold a concert and have a raffle to auction off the Rugby Jersey. I got in contact with the local Hotel, Errigal Country House Hotel, in Cootehill Co.Cavan and they said I could use the venue for free as it was for such a good cause. The 21st March was set as the day of the concert.

Word got around and more and more people and businesses came forward with spot prizes and vouchers for me to raffle off. Cavan GAA donated a signed Cavan Jersey and local man, referee Joe McQuillan donated a football from the 2013 All Ireland Football final.

The Rugby Choir performed at the concert.

Cyril O'Keeffe (choir member), Aoife McKiernan (PWCF), Thomas Farrell (choir member), Rosaleen Cronin (Treasurer, Cavan Branch CFI) and Ray Dunne (Chairman, Cavan Branch CFI).

Local singers and dancers came forward and offered to play at the concert, so very soon it went from a small concert to raffle off a Rugby Jersey, to a big concert with lots of artists and great spot prizes. The rugby choir and I decided we would auction the Jerseys and football on the night and have raffle tickets for all the spot prizes. Almost 300 people attended on the night. The rugby jersey went for Û800, the Cavan jersey for Û160 and the All-Ireland football for Û200. In total the night raised Û7,365.

I am forever grateful to all the people who helped me raise such a great amount. The night was a huge success and I was delighted to be able to hand over all the money to the Cavan Branch of CFI. It has been a long, hard road to recovery and getting my fitness and exercise tolerance up. There are still a few things I can't do, but I plan on climbing Cuilcagh Mountain on the 17th May this year in memory of my donor and to raise much needed funds for the Cavan Branch of CFI.

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FUNDRAISING

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Challenges and Events Tough Mudder 2014 Are you Tough Enough...for Tough Mudder? Join Pat Divilly Ñ fitness guru, motivator, and CF Ireland Ambassador in a team of 400 at Tough Mudder this October Ñ all with the goal of raising Û100,000 for CF Ireland.

Pat has set up a Facebook group for all who are registering, and posts daily tips and inspiration for you to drive your training and motivation Ñ go to his Pat Divilly Fitness Facebook page for more information: www. facebook.com/PatDivillyFit If you want to know more about Tough Mudder, check out the website: www.toughmudder.co.uk. For more information on how to enter and join Pats inspirational team contact fundraising@cfireland.ie

Pat Divilly, Ambassador for CF Ireland.

Tough Mudder Challenge.

Marathons Ñ Home & Away If you would like to set yourself the ultimate running challenge, and raise funds and awareness for CF Ireland, we are looking for participants for two marathon events Ñ at home & away.

The Airtricty Dublin Marathon takes place October Bank Holiday Monday and is open for registration right now: www.dublinmarathon.ie.

If you think you'd like to see New York City from a different perspective and get to run along those famous streets, the NY marathon goes through the 5 Boroughs. It's sure to be an amazing day and is one of the biggest sporting events of the year. If you are interested in finding out more and registering for the NY Marathon for 2014, please email us for further details: fundraising@cfireland.ie Calendar of Challenges and Events to July 2014 Liffey Swim Ñ May 31st, 2014 Flora Women's Mini Marathon / One in 1000 Ñ June 2nd, 2014 LeCarrow 10km for CF Ñ Saturday June 21st, 2014

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Spectrum / Issue 39

One in 1000 Ñ CF Ireland's Flora Women's Mini-Marathon Team The countdown is on to the Flora Women's Mini Marathon taking place on 2nd June, Bank Holiday Monday. We are still on target to reach the goal of having 1,000 women taking place in aid of CF Ireland.

As previous years, the base on race day for the 'One in 1,000' team is at The Harcourt Hotel, 60 Harcourt St, Dublin 2. From 11am onwards, you can leave all your belongings here before you take to the streets to take part in the event. Following the race, food and beverages will be served to all our fantastic ladies with entertainment being provided by a DJ.

Participants from 2013 celebrating outside the Harcourt Hotel, Harcourt St, Dublin.

Please note: We ask any members of the 'One in 1,000' Team to register to attend this event so we can comfortably cater for all attending.

If you wish to attend just RSVP Yes to Suzie on sbrock@cfireland.ie or LoCall 1890 311 211.

More participants from 2013.

Community Events Come along to a very special night of music taking place in aid of TLC4CF in Whelan's, Wexford St, Dublin on Thursday 5th June.

"Songs I Wish I'd Written" will feature well known artists performing original and classic songs. MC on the night is comedian Fred Cooke (Republic of Telly) with music from Niamh & Podge (Ham Sandwich), Gavin Glass, Superfly, the Walls and some VERY special guests.

Tickets are Û16 adv or Û20 on the door and all proceeds are going to TLC4CF. It's a night not to be missed!

You can purchase the tickets online at www. whelanslive.com/index.php/wav-tickets/songs-iwish-id-written-tickets/

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Thank You 65 Roses Ball On April 12th, one of our great volunteers, Michelle Weafer, organised a great night out as part of National Awareness Week.

The 65 Roses Ball took place in Fitzpatrick Castle Hotel in Killiney, Co. Dublin. There was food, music, dancing and a raffle with some amazing spot prizes including One Direction and Garth Brooks tickets. To date the ball has raised Û7,277.

A big THANK YOU To Michelle and her team for all their hard work.

5th Annual Western People West of Ireland Mini Marathon The 5th annual Western People West of Ireland Mini Marathon took place on Sunday 4th May with over 2,000 ladies (and some gentlemen!) taking part on behalf of many charities. CFWest is one of a few charities who have taken part over the 5 years, we were delighted to see many familiar faces taking part again this year.

CFWest would welcome and support all other CFI branches who would like to organise participants for next year's event. The 10km is held on the Sunday of May Bank Holiday each year.

Pyjama Day for CF Thank you to the junior infants in Newport Convent National School, Co. Tipperary for holding a Pyjama Day for CF and raising Û400 for the new hospital build in University Hospital Limerick.

Pictured at the back in green is Cillian Healy (PWCF) with his classmates.

A big thank you to all the students involved!

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Spectrum / Issue 39

DAA Charity of the Year Row Row Row Your Boat! A huge thank you and hearty congratulations to the Rowers of the Dublin Airport Police & Fire Service!

Over the May Bank Holiday, a team of oarsmen from the DAA rowed from Arklow across the Irish Sea to Aberystwyth in Wales as part of their fundraising efforts for the DAA, which chose charities for 2014 Ñ CF Ireland, Special Olympics Ireland and Jack & Jill Children's Foundation.

After 19 hours and 10 mins of rowing from Arklow to Aberystwyth in Wales through the night, the magnificent Dublin Airport Police & Fire Service rowing team came fifth in the men's section.

The team members for this amazing achievement were Ken Gorman, Mick Gurley, Danny McAlevey, Matt Butterly, Paul Furlong, John Walsh, Clive Geraghty, Scott Dexter, Shane Denver, Brian Conway, Tony Shannon and Brian Dempsey. They were accompanied by a fantastic support team comprising Chris Fox, Declan Duggan, Joanne Byrne and Eamon O'Leary.

Duleek 10K The Duleek 10k walk/run for Cystic Fibrosis Ireland saw over 460 take part in the race on the day.

To date, the event has raised just under Û20,000 with that total still climbing. Congratulations and thank you to Anne Noone and everyone who helped make the event such an amazing success!

Black Tie Ball A huge thank you to Niamh Molloy and friends for organising a Black Tie Ball in aid of CF Ireland. They managed to raise an amazing Û5,000 from the evening!

They chose CF Ireland as they were close friends with Triona Priestley (RIP) who recently passed away.

Pictured being presented a cheque are Triona's mum Bernie and brother Ciaran. Special thanks to Niamh's mum Leona, the staff of Westmanstown centre and everyone who contributed to make the evening such an incredible success.

May/Jun 2014

L-R: Niamh Molloy, Ciaran Priestley, May Daly, Bernie Priestley and Gavin McLoughlin.

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Conference 2014 The CFI Annual Conference was a great opportunity for the CF Ireland team to meet with fundraisers from all over the country.

Special thanks was paid to Gerry Walker and his wife Margaret who decided in the 50th Anniversry of CF Ireland to climb the 50 highest peaks in Ireland. The '50 Years, 50 Peaks Challenge' started on Saturday 28th June and raised an amazing Û3,000.

Margaret & Gerry Walker presenting a cheque to Philip Watt, CEO, CFI.

We were also presented with two cheques from Marie Duffy, one for Û4,200 for the 'Race for Grace' fundraiser, and the other for an amazing Û13,000 from McCabes Pharmacy!

McCabes chose CF Ireland as their 'Charity of the Year' in 2013 and they raised Û13,000 throughout the year with various collections and events.

A huge thank you to Marie and all the staff in McCabes for all their generosity and support, as well as all the people who participated in the race event!

Maria Caldwell, Fundraising Manager & Philip Watt, CEO with Marie Duffy at the cheque presentation.

Raffle Winners Below is the list of winners from our 2014 National Raffle that took place at the CF Ireland Annual Conference in Galway Ñ thanks to all who took part!

• • • • • •

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1st Asus Laptop, sponsored by PCP Ñ Audrey Dickson 2nd Midweek Dinner B&B, Galway Bay Hotel Ñ Karen Duffy 3rd Aniar Voucher - Mary Rose Ryder 4th Kindle, sponsored by Adlanti) Ñ Grainne O'Malley 5th Vichy Hamper, sponsored by McCabes Pharmacy Ñ Aiden McCabe (no relation!!)

5th Solaris Tea Hamper, provided by Solaris Ñ Emer Breen

Spectrum / Issue 39

65 Roses National Awareness Week 2014

A huge thank you to all of our supporters who took part in our 65 Roses National Awareness Week 2014!

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Help the CFI Ireland LIFE SUPPORT Campaign Because Ireland has the highest prevalence of Cystic Fibrosis in the world, many people will know someone who is living with Cystic Fibrosis. However, fewer may know how tough it is to stay well when you have CF and the support that Cystic Fibrosis Ireland provides to help people with CF stay well.

There is a constant daily battle for people with CF to maintain their health, often with scores of pills and other medications to take every day and a challenging regime of exercise and physiotherapy that will take at least 2 hours every day, even for those with CF who are comparatively well. For those of our patients who are less well and who may be constantly dependent on oxygen; waiting for a lung transplant or who will spend weeks as an inpatient after a worsening of their condition, the daily treatment regime is much longer and even more of a struggle.

There is a constant battle for funding for CF hospital facilities; for research, for equipment and assisted living. Those with CF and their families contribute daily through determination and perseverance of treatment, but with cutbacks we increasingly need public support to maintain crucial CF services.

With the support of Cystic Fibrosis Ireland and the current advances in medication and our wonderful care teams in CF centres, more people with CF can now hope to be a mum or a dad, perhaps even a grandparent Ñ a dream that was impossible when CFI was set up in 1963 and when children with CF were not expected to reach primary school.

Help us through your donations for CF Life Support.

Donate Details Text HelpCF to 50300 to donate Û2.

100% of text cost goes to charity across most network providers. Some providers apply VAT which means a minimum of Û1.63 will go to CF Ireland. Service provided by LikeCharity 01 4433778.

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 Spectrum / Issue 39

Charity: CHY6350 22