Spectrum Spring 2016

Spectrum

Spring / 2016

È Hospital Development Update È Treatment in Cystic Fibrosis È Independent Living Working Group È Opening of the new CF Unit in Mayo È Fundraising Updates

Spectrum | Spring 2016

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Foreword The key message of this year's CF Awareness Week is that the incoming Government has to act urgently if they are to sustain recent progress in CF care in Ireland. CFI recently met with 53 TDs in Buswells Hotel Dublin. We sought cross party support for: The approval of Orkambi and the extension of Kalydeco; the critical staff shortages in some of our CF centres; the need for full committment to and dedicated resources for the inpatient units in Beaumont Hospital and Cork University Hospital (paediatric) and the change in the organ donor law from 'opt in' to 'soft opt out'. A key message from the general election to all parties is that our health services, along with homelessness, has to be the number one priority for the new programme for government.

This issue of Spectrum is published to coincide with our awareness week and 65 Roses Day (Friday 15th April). Thanks to the support of our CF charity ambassadors including Joe Brolly; Keelin Shanley; Jenny Dixon; Nuala Carey; Bevin Murphy; and Bryan Dobson we have received a lot of coverage in the national and local media in recent weeks. Thanks to all who volunteered to fundraise over the week and indeed over the last year.

We have published an impact report (2014 and 2015) and our audited accounts (2015) along with our annual report. These give you a very clear picture of how we have sought to work in partnership with clinicans, hospitals; our 19 branches around the country and our many supporters.

Many thanks to the Southern Branch of CFI who organised the well attended information meeting in Cork University Hospital on 10 March. It was great to see so many familiar and new faces at the event and we will have a summary podcast on our website shortly.

Philip Watt (CEO) Samantha Byrne (Editor) Front Cover: Jennie Dixon and Joe Brolly at the Launch of 65 Roses National awareness week

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CONTENTS Latest News | 2Ñ4

Information | 9 - 12

È Orkambi and Kalydeco extension: Progress to date È Hospital Developments

È Independent Living Working Group

Research | 5Ñ8

Spotlight | 13 - 16

È Ensuring the patient perspective is central to the Health Technology Asessment È Treatment in Cystic Fibrosis - What really matters?

The patient perspective

È Opening of the new CF Unit in Mayo General È My life with CF - Daniel McDonald

Fundraising | 17Ñ33 È Challenges and Events È Fundraising calendar È Thank you È Statement of Guiding Principles for Fundraising

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

Spectrum | Winter 2015

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Latest News Orkambi and Kalydeco extension: Progress to date The National Centre for Pharma Economics (NCPE) is the body that advises the Government on the reimbursement of a new therapy. To date the following progress has been made in respect of CFTR related therapies from Vertex:

18/11/15 - Pharma Company submitted NCPE rapid review form to the NCPE for Kalydeco 2-5 year olds 26/11/15 - Pharma Company submitted NCPE rapid review form to the NCPE for Orkambi 22/12/15 - NCPE informed Pharma Company full submission is required for both applications 14/1/16 - Pharma Company submitted NCPE rapid review form to the NCPE for R117h

The Pharma Company met with the NCPE on Orkambi on 9th February and they anticipate that they will submit their full application for Orkambi by early next week. The NCPE will be required to assess this within 90 days.

It will probably be assessed more quickly. The likely first decision, like Kalydeco will be a 'no' on grounds of cost or other factors, but it could also be an outright 'no' with no further negotiations. There is a possible second stage whereby the HSE/NCPE say no initially, but will negotiate with the company to reduce price or enter into some form of 'shared risk'arrangement. After these negotiations there will be a final decision made on reimbursement or not. In short the choices to reimbursement open to the NCPE/HSE are: 1. Yes 2.

No with no further negotiation

3.

No, but with further negotiation, followed by a final Yes or No.

CFI have drawn up a submission on Orkambi and this has been submitted to the NCPE. We are currently seeking more information on follow up clinical studies that might provide further evidence in support of sustained lung function improvements/fewer exacerbations in particular (see article by Katie Murphy in this issue of Spectrum).

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Hospital Developments Temple Street: Temple Street Hospital: The CEO of Temple Street Children's Hospital has recently written to parents attending the hospital to advise them that they are recruiting new consultants and to advise them that some appointments have been postponed. CFI has urged that a full CF service should be restored as soon as possible. We would welcome feedback from parents on the difficulties they experience to Sam in the office sbyrne@cfireland.ie

Crumlin Hospital: The CEO and coordinator of member services and parents met with the senior management team in Crumlin Hospital and highlighted issues such as: The need for refurbishment in St Michaels's ward; access to education by children with CF; delays in routine procedures requiring access to operating theatre time (PEG and PICC lines). The meeting was very constructive and we will seek a further meeting in April to assess progress on these issues.

Cavan Hospital: 2 room inpatient facility and related reconfiguration of the paediatric inpatient services has now commenced and will be completed before the end of 2016.

Limerick Hospital: In-patient facility partially open (5 rooms); Out-patient facility now open.

Additional staff being recruited. This project is also benefitting non CF patients who can use the inpatient rooms when they are not being used

by CF patients.

Beaumont Hospital: The CEO of the Hospital has confirmed that the 20 room CF inpatient facility will in included in the plans submitted by the hospital for a new High Dependency/Emergency Department block in the hospital. We are pleased to confirm that a registrar has been rcruited and will start work in June. This post is funded by CFI and CF Hopesource (100k in total).

The need for this facility was highlighted by some politicians during the election campaign, most notably Finian McGrath TD (Independent) thanks Finian!

Cork University Hospital: CFI met with the Minister for Health in January has highlighted CUH, Cork University Hospital (paediatric) and Beaumont (adult) as the most critical projects. There is no HSE commitment, for example, to start or complete the CF inpatient facilities in CUH. Further, the staffing levels in CUH (and in many other CF centres) are far below recommended EU standards.

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Mater Hospital: Seven pre/post-operative rooms in the Mater Hospital and an operating theatre remain mothballed and closed in the Mater Hospital because of lack of staff. CFI will seek a meeting with the CEO of the Mater on these issues.

St Vincent's Hospital: The issues of access to fridges for the storage of food has been highlighted by patients. CFI is looking at how other CF hospitals have addressed this issue. It is of particular importance for those needing extended inpatient care.

Elections and the next government The CFI Election manifesto was well received by our members and we know from feedback from TDs that the issues were raised at doorsteps!

We will have a big task to ensure that the new health Minister takes into account and acts on the most important issues facing our members, including access to new therapies and the staff shortages in most of our hospitals. A report from TCD in 2014 estimated that over €4billion has been taken out of the health system since 2008. Some of our centres are 20 posts short of what they should be by European standards. While much of the focus has been on emergency services and trolley waits, it is imperative that the next minister also focusses on the needs for long term illnesses which demands a different approach.

Year out for Tomas Tomas Thompson one of our well know patient advocates is taking a one year's leave of absence from CFI to pursue personal and professional goals. Good luck on your year out Tomas from all of us in CFI and thanks for your most recent work, especially in relation to the development of the new outpatient unit in Mayo Hospital.

TLC4CF TLC4CF were honoured to be chosen by Shannon Group as their Charity of the Year 2015, with Milford Hospice. The Shannon Group of companies includes Shannon Airport and world renowned heritage sites like Bunratty and King John's Castle.

The Shannon Group hosted four fantastic fundraising events: a cake sale, a 100k Shannon to Gort Cycle, a night at the dogs in Limerick and the phenomenally successful midnight airport runway run in Shannon Airport.

The runway run booked out within 36 hours and featured in a subsequent airport documentary.

Over €54,000 was raised for charity and TLC4CF received a cheque for €28,500! Our sincere thanks to the stellar charity committee members, airport management and staff.

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Research Ensuring the patient perspective is central to the Health Technology Assessment Following the completion of the Rapid Review of: • Orkambi - people with CF (PWCF) with two copies of f508del aged 12 and over • Kalydeco - expanded use for children with a 'gating mutation', such as G551D aged 2-5 years • Kalydeco - expanded used for adults, aged 18 and over, with genetic mutation R117H All have been recommended to undergo a Full Health Technology Assessment (HTA) by the National Centre for Pharmacoeconomics (NCPE), as expected.

What is a HTA? Health technology assessment (HTA) is a multidisciplinary activity that systematically examines the safety, clinical efficacy and effectiveness, cost, cost-effectiveness, organisational implications, social consequences, legal and ethical considerations of the application of a health technology - usually a drug, medical device or clinical/surgical procedure .

The HTA broadly focuses on two main questions: • Clinical effectiveness - how do the health outcomes of the technology compare with available treatment alternatives?

• Cost-effectiveness - are these improvements in health outcomes commensurate with the additional costs of the technology?

Once the HTA commences with the NCPE, a 90 stop clock system is put in place - whereby the NCPE have 90 working days to carry out the assessment. It is important to note that should the assessors (NCPE) have any questions or queries which require clarification or additional input from the company, the clock stops.

Once the NCPE receive all requested information the '90 working days' clock resumes.

It is widely recognised that there are challenges and limitations associated with carrying out a HTA on drugs or medical interventions for rare diseases, such as cystic fibrosis (CF). Ultimately, with fewer patients for a company to recoup costs of drug development, it follows that the cost per patient can be considerable and often exceeds the national threshold of up to €45,000 per QALY. What is a Quality Adjusted Life Year or QALY? The outcomes that need to be measured when considering a treatment or medical intervention have two basic components - the quantity and the quality of life.

A quality-adjusted life-year (QALY) takes into account both the quantity and quality of life generated by healthcare interventions, in our case CFTR corrector therapies.

It is the arithmetic product of life expectancy and a measure of the quality of the remaining life-years. A QALY places a weight on time spent in different health states. A year of perfect health is worth '1' and a year of less than perfect health is worth less than '1'.

In Ireland, Irish society or the general public have been asked to state their preferences for various descriptions of health. These valuations or preferences have then been used to calculate the impact of technologies (or drugs) on quality of life and this then informs how decision makers decide what to fund. QALYs are calculated based on Irish society's preferences for health.

While QALYs provide an indication of the benefits gained from a variety of medical procedures, in terms of quality of life and survival for patients, they are far from perfect as a measure of outcome.

CF Ireland's role in ensuring your voice is incorporated in the HTA for Orkambi and Kalydeco for expanded use.

In December 2015, we invited you, our members, to share their views on 'CF and treatment' - what really matters to you?. Almost 500 of you responded to this survey and we thank you most sincerely for taking the time to support this work, which has formed the basis for our 'patient interest group submission of evidence', which has been submitted to the NCPE for inclusion during the HTA. The purpose of this submission is to provide the NCPE with information they do not already have. The clinical

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results of all of the trials and follow up studies are widely available to read, and clearly demonstrate the clinical effectiveness of CFTR corrector therapies. Very often, it is extremely difficult, if not impossible, for assessors to consider the patient perspective, as it has not been presented to them in an evidence-based and robust manner, and this is what CF Ireland have aimed to do. Working in partnership with both the CF Trust in the UK and the NCPE, the survey you completed has helped to create a clear picture of what it means to live with CF (directly and indirectly), what you 'value' in a new treatment and what you consider to be an important outcome, be it clinical or otherwise.

Although we cannot share all of the information we have submitted, due to the privacy of patients who have provided testimonials, we have a summary document available on our website at the following link https://www.cfireland.ie/images/CFI_Submission_to_ NCPE.pdf

The HTA are due to begin very shortly, and once they are completed we will expect one of three recommendations: a. We recommended (the product) for reimbursement b. We do not recommend (the product) for reimbursement

c. We do not recommend (the product) for reimbursement at the submitted price As has been the case previously if a product is 'not recommended for reimbursement at the submitted price', the HSE Corporate Pharmaceutical Unit and Drugs Committee will then work with the pharmaceutical company to negotiate a fairer and more sustainable price, something which CF Ireland have supported in the past.

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If you would like to read more about the Health Technology Assessment, visit www.ncpe.ie where you will find lots of the information in relation to the assessments and measurements.

Also, we will be hosting a session on the topic of 'Access to new therapies - how are decisions made' at our national conference on the 9th of April in Sligo.

In Feb 2013 - Kalydeco was 'not recommended' for reimbursement at the submitted cost following negotiations between the state and the pharmaceutical company, a price was agreed and Kalydeco was made available to eligible patients

Treatment in cystic fibrosis what really matters? The patient perspective Introduction Historically, medications and therapies prescribed for people with CF (PWCF) focused on managing the symptoms of CF, but more recently we have seen an increase in new therapies and treatment which target the underlying cause of CF, the defective CFTR protein.

The arrival of this group of drugs, called CFTR correctors - modulators and potentiators, signals a breakthrough in how CF is treated, & has the potential to significantly improve the quality of life and life expectancy of people with CF.

As these corrector therapies are trialed and marketed for the treatment of cystic fibrosis, it is becoming increasingly important to assess 'value' both financially and from the patients' perspective. Health-related quality of life (HRQL) and other clinically validated patient-based assessments, such as the Cystic Fibrosis Questionnaire Revised (CFQ-R), are important for understanding the impact of treatment on patient well-being & functioning. However, the extent to which these outcomes can be used to evaluate and communicate the effect of new drugs and devices is a subject of much debate.

The primary aim of this survey was to gather information from both people with CF, and their families about experiences and views of treatment options for cystic fibrosis and ultimately - what matters to them. Results from this survey provide a unique insight into the main challenges facing PWCF and their families in Ireland, but also highlighted what this population 'value' when seeking a CF related treatment.

Methods and Materials Data for this study was collected using an online questionnaire, which was developed by the Cystic Fibrosis Trust (UK), and adapted by Cystic Fibrosis Ireland (CFI) for an Irish population, with an advisory input from the National Centre for Pharmaceconomics (NCPE).

The survey was distributed to adults living with CF, and parents of people with CF (PWCF) using CFI's database (N=891). Participation was also promoted via social media platforms, namely Facebook and Twitter.

A total of 493 people whose lives are effected by cystic fibrosis responded to the survey, see table below.

How would you describe yourself?

Adult living with CF A parent/carer A partner/family member of PWCF Other

N 145 248 52 35

% 30 52 11 7

The number of respondents who identified as an adult living with CF, represents almost a quarter of the adult CF population in Ireland (23%), according to data from the Cystic Fibrosis Registry of Ireland . The majority (51%) of adults living with CF, were aged 25-34 years old.

Results The substantial time commitment needed to manage CF and treatments, was highlighted throughout this survey as a major challenge of living with CF, impacting on employment, education, family life and financial security, as highlighted in the following image;

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Intravenous (IV) antibiotic therapy is typically seen as one of the most disruptive treatment in the day to day lives of PWCF. Respondents told us what a reduction in IV antibiotics would mean to them (data below was extrapolated from free text); • Improved quality of life (54%); • Improved family time and a reduction of stress place on family/loved ones (33%) • Increased opportunity for employment/education (27%) • An ability to plan for future (27%)

When asked "What you would most like a treatment to achieve during a chest infection?", adults living with CF most sought increased FEV1 (83%) and increased energy (66%), while parents/carers reported a reduction in overall cough; as the most important improvement they would like a treatment to achieve (74%), followed by an increased in FEV1 (66%). Participants were then given an opportunity to elaborate on "what you consider important when taking CF treatments" with time overwhelmingly highlighted as the most important consideration. One person said; "...having to dedicate 2-4 hours per day on treatments is not realistic and impacts on study and employment opportunities while also impacting on both family and social commitments. Helping PWCF to be well more often should be a priority. This will have the natural effects of making them more employable, provide more educational opportunities and allow them to live more normal lives and interact socially and spend quality time with family".

When asked how cystic fibrosis had impacted on their lives in the past 12 months, respondents highlighted that planning ahead (63%), daily activities (66%), work/education (60%) and family life (54%) had all been impacted negatively.

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The word cloud, generated using the free text responses from participants when asked "What is it like to live with CF?" The themes of 'everyday' and 'constant' feature heavily. There is a sense that managing CF can be like 'groundhog day', as one adult with CF said; "My day always starts and ends the same way. My medication is the first thing I think about when I wake up and the last thing I do before I go to bed".

Discussion Cystic Fibrosis Ireland support PWCF & their families on a daily basis. From our regular communication with the CF community coupled with the findings from this recent survey, the time taken to manage the care and treatment regime for CF, and the consequential disruption to daily life, is one of the biggest challenges faced by the CF community. For most PWCF medications and treatments available to them focus on managing the symptoms of CF often adding to the already heavy and time consuming treatment burden.

The emergence of new therapies and treatments which target the underlying cause of CF, like Orkambi, offer hope to the CF community as results from the clinical trials for CFTR corrector therapies report a significant reduction in the number of exacerbations experienced by participants in the trial.

The majority of respondents of this survey (92%) agree with the measurements captured in the clinical trial for Orkambi, benefits of the treatment in terms of FEV1, Body Mass Index (BMI) and reduction in number of chest infections over a 6-month period, represent what is important to them. Despite this, many respondents highlighted the need to consider the quality of life and broader societal benefits associated with therapies like Orkambi. One person said; "Take into account the things people are saying about the physical, emotional and social impact Orkambi has had on their lives, that they stay out of hospital longer, that they can exercise more and build their strength up to fight CF better, that they bounce back faster from exacerbations, that they can continue to work or study, knowing CF is less likely to get in the way, that they can plan ahead, that they can see a healthier future rather than a progressive decline"

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Information Independent Living Working Group The first meeting of the new working group took place in March.

Thanks to new and innovative therapies, better care and increased understanding of Cystic Fibrosis, People with CF are increasingly participating in third level education; full time or part time employment and going on to have families of their own and generally living more independent lives.

This is a very positive development, although it is also important not to over generalise and acknowledge also that because of health or other factors, such as difficulties accessing an independent income, many people with CF will remain dependent on the close support of family As with the general population in Ireland, there is a wide spectrum of young people with CF who have a diversity of educational attainments; employment experience and financial status and personal development skills that contributes to independent living.

It should also be emphasised that there are also many degrees of independent living that may or may not involve living in the parental home or which may involve part time rather that full time employment or which involves the support of a life partner.

Independent living has been a matter for discussion at the annual conferences of Cystic Fibrosis Ireland and among the PWCF group in particular, and these discussions have shaped this terms of reference.

The key factors that increase the opportunities for independent living are one of more of the following: • • • • •

• • • • •

Access to a sufficient income Educational opportunities and attainment Employment opportunities and attainment Empathetic workplace policies and practice Equality/non-discrimination policies in the workplace and provision of goods and services Access to accommodation that facilitates independent living Personal development/social skills The on-going/sustained support of family, friends and partners Health, both physical and psychological Ambition for independent living

Role of CFI CFI has identified independent living as a key priority in our strategic plan.

CFI already contributes to limited extent in creating the conditions for independent living through for example:

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•

Improving CF health care in Ireland

•

Providing information on some of the of the factors that contribute to independent living

•

Providing personal advocacy with PWCF on issues such as access to Third level colleges; deferment of exams; travel abroad, in cluding for employment purposes

•

Highlighting personal success stories in Spectrum

• Crucial role of the advocacy officers in CFI who can draw on life experience •

Role of PWCF group in identifying issues

The group is chaired by Particia Duffy Barber, Board Member and consists of the following members •

Philip Watt, CEO

•

Caroline Heffernan, CF patient advocate

•

Sam Byrne, Senior Member Services Coordinator

•

Katie Murphy, Senior Research & Policy Coordinator

•

Fiona Bodels, Board member, Parent

•

Rebecca Horgan, Parent

A key priority as set out by the group is the drawing up of a survey to be undertaken by people with CF aged 17 and over that would cover issues such as: Full/part-time education Educational attainment Full/part time employment Those living in the parental home/those living independent of parents Factors that militate against independent living Issues that PWCF would like to see prioritised (list of main issues)

The identification of the key issues that CFI will prioritise/can make an impact on. For example: Third level education access and support policies Practical Advice on accessing employment Highlighting success stories in employment Supports for personal development

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Opening of New Unit at Mayo General Hospital Extracts of speech given by Martina Jennings at the opening An Taoiseach, Ladies and Gentleman, I would like to start by quoting the words of a Cystic Fibrosis Patient I've realised that my life is not normal, it's not ordinary. My life is anything but. My life is amazing, my life is special. I've learned and I've experienced.

I've failed and I've succeeded. I've laughed and I've cheered. I've cried and I've sobbed. I've achieved some of my goals and I've fallen short of others.

In 30 years I've lived anything but a normal life.

The last 7 years have been a journey made up of passion, belief, renewed friendships, new friendships, and a true example of what commitment, volunteerism and teamwork can achieve when everyone is working towards a goal to improve the lives of Cystic Fibrosis patients and give them the very best chance at normal life.

When Caroline, Brendan and I started Friends of CF our aim was to provide practical support to help PWCF and their families. We underestimated the level of support we would get and before long we were sitting in a coffee shop in Castlebar with Dr. Michael O'Neill promising him that we would deliver a State of the Art clinic for CF patients in Mayo.

Indeed in Mayo we were also blessed with our first CF Consultant Dr. David O'Kane who was a true pioneer for Cystic Fibrosis and who along with my Dad, back in the early 80s secured the 2 private rooms in the paediatric ward, long before the importance of having isolation rooms was really known. I want to thank the medical and catering staff of the paediatric ward for looking after our patients so well, and for making their long term stays that little bit easier. These rooms are still available to us today. Dr. O Kane was a huge loss to the CF Community, and we were delighted to name the other consulting room within the clinic after him, and are honoured to welcome his wife Irene here today along with their son.

Cystic Fibrosis is multi-disciplinary, and physio and diet are vital parts of the ongoing treatment. We would like to thank Marie Fraser and Sara Canny for all they do for our patients, and for always ensuring they get to see them, whether in outpatient appointments or as in-patients. One of the reasons for building this clinic was to ensure the whole medical team had one place 12

they could work together to treat our patients. We wish you luck in the future in this clinic and thank you all for everything you do on a daily basis.

The HSE HR department must have a pre requisite in their job descriptions by saying that only Gentlemen Must Apply. Because, the CEOs of Mayo University Hospital that we have worked with have been complete gentlemen to deal with. Tony Canavan was CEO when we approached him and quite simply said that "if you give us a site, we will give you a clinic". Tony said NO to the site that we had quite cheekily picked out ourselves, and had in fact picked a much larger site, which is where the clinic is built. Tony, thank you so much for believing in us and for being so supportive of us, and we are delighted to have you here today. Tony was succeeded by another gentleman, in Charlie Meehan.

Charlie thank YOU so much for all of your help and support, and for always making yourself available to us. You have been so approachable and generous with your time. I would also like to thank Karen Reynolds for all her help last year in getting the doors of the clinic open to patients last September. I would also like to wish her luck on her new post within the HSE, and I know she will be very successful. Huge thanks also to Martin McGoff, Vincent and the maintenance team for working so closely with MVS to get the clinic open. Also, thank to Des and the MVS team for building the clinic and for ensuring the project was complete in super quick time.

Firstly, Tomas Thompson, who oversaw the building project, and liaised between MVS, the hospital, the architects and the branch. Tomas, myself and yourself Spectrum | Spring 2016

have had so many arguments over the last 7 years, as you couldn't find 2 people who look at everything completely differently. But we always managed to come to agreement as we both had the same goal in mind. Tomas, thank you so much for your patience, time and commitment. I knew you and your family as a child growing up with Cystic Fibrosis, and I'm sure your mum Maud and my mum Maureen are raising 2 vodkas to us in heaven this evening.

Caroline Heffernan, where do I start and where will I stop!! Not alone are you Fundraiser extraordinaire, you have incredible energy.

Caroline I am delighted that we got the chance to renew a childhood friendship, and we would not be here this evening without your energy. In thanking you from the bottom of my heart, I also want to thank your husband Frannie, your son Jamie and your daughter Anna for their help and support. It would not be right to thank you without giving a special mention to the people of Tuam, and your 2 wing women Norma and Virginia. Ladies I don't think there's a road in Mayo you haven't travelled, and you are all now adopted Mayo women.

Ladies and Gentlemen, it's very important to note that both Caroline & Tomas are also PWCF, and do incredible work throughout Ireland in their official roles as Patient CF Advocates. Over the last 7 years they have put their hearts and souls into this project, and have done this at times when their own health hasn’t been great. We thank you both for everything you have done, and wish you both every success in the future. Its time now to look after yourselves.

On a personal note I would like to thank my own family. Doing something to improve the services to 13

So ladies and gentleman, we now had the plans, the site, the planning permission, the HSE Support, CFAI Support, Government support but we still had an incredible mountain to climb. We needed to raise â‚Ź850,000 at a time when the country was facing a massive recession, and that's where all of you came in. I can't name everyone out that raised this money for us, but over the last seven years we have been constantly amazed at the calls we received to say there was another event being organised for us.

Over the last 7 years ladies & gentlemen you Ran Marathons Organised Marathons Climbed mountains Days in the bog Posed nude for Calendars Made me pose Nude for Calendars Organised and attended Black Tie Balls Bucket Collections, church collections, street collections, matchday collections Chose us as your charity of choice Used our national games of hurling and Football Mock weddings and Mock 18ths Cycled the greenway, organised Cycles of the greenway Sent small and large donations Golf Classics Cake and cookery demonstrations.

Sponsored walks You have given a masterclass in what can be achieved through the power of community and volunteerism. Each and everyone of you have ensured that NEVER AGAIN WILL A PWCF HAVE THEIR IV CHANGED IN A STORE ROOM NEVER AGAIN WILL A FAMILY HAVE TO WALK THE CORRIDORS OF THE HOSPITAL LOOKING FOR SOMEWHERE PRIVATE TO RECEIVE DEVASTATING NEWS YOU HAVE ENSURED THAT THE PWCF OF MAYO WILL BE TREATED WITH THE DIGNITY AND RESPECT THEY SO RICHLY DESERVE, AND YOU HAVE GIVEN THEM THE VERY BEST CHANCE AT LIFE!!!

Thank you all so very much!

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My Life with CF

By Daniel McDonald My name is Daniel McDonald, I hail from Co. Laois. 27 years ago, I made my arrival on this earth. A jovial and affectionate baby, all appeared to be well - until the confirmation of a bowel obstruction indicating Cystic Fibrosis brought the world of my nearest and dearest crashing down. A sweat test eventually confirmed the diagnosis of CF.

Initially, family members found themselves in a state of perplexity. I had 5 other siblings who were miraculously unaffected by the condition - given it is a hereditary condition. Having an ill child was new territory to my parents. Albeit, despite the apparent quandary that presented, they espoused to provide and care for their nurturing new born bundle of joy - to the best of their ability - with endearing commitment, strength and affection.

It was imperative to my parents that I was provided with a normal, functioning childhood. They had insisted to teachers and my counterparts that I wasn't to be wrapped in cotton wool - in essence, essentially devoid of the special treatment factor. They actively refused to let my CF define who I was as a person. There was to be no conspicuous element. My mother nor my father wanted me to be labelled. CF, in their view was not the impediment that national media had portrayed it as. Not only was I emboldened by their approach - those I interacted with, also followed suit.

Adolescence followed a happy, carefree childhood. Now Cystic Fibrosis would show its hand. I endured my first hospital admission at 13. I experienced haemoptysis (lung bleed), a common complication of CF. I was admitted to hospital - the haemoptysis slowly began to dissipate.

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The following years brought prolonged reasonably good health. I had considered myself lucky as the stories other CF patients found themselves in dominated the national media. It was a damning indictment on our health service at the time. I discovered a newfound equanimity with life and CF in general. I had surmounted my fears and conquered certain obstacles that lay in my path. I had acquired a new found affinity for attending hospital appointments, regularly consulting with members of the CF medical team - resulting in a proactive, positive approach to keeping CF in check.

In September 2015, CF tested me to my limit. The months prior had been turbulent health wise, therefore not unexpected. I became the latest victim of a debilitating flu epidemic which appeared insidious initially. I found myself in a hospital bed. My lung function had dropped to 23%. I attempted to ascertain as to how it nosedived. Adamant and determined to claw back lost lung function, a cocktail of intravenous antibiotics in combination with treadmill running - assisted by supplementary oxygen was the ultimate remedy. Pft's increased from 23% to 44% after one week, further increasing to 53% after the second week.

Today, I adhere to a strict routine consisting of various nebulisers with additional airway clearance. Being compliant with secreting mucus from the airways is a fundamental must in Cystic Fibrosis. Halting permanent lung scarring for as long as possible is crucial to the 15

battle. Running intermittently in conjunction with an emphasis on airway clearance is also incorporated into the daily routine. Supplementary oxygen is no longer required during exertion - therefore I am free to pound the pavements and treadmills unaided - without the worry of blood oxygen saturation decreasing. A wholesome, balanced diet composed of good fats also applies including 8 hours of adequate sleep. I've a tendency to execute my routine with precision which originates from the old saying, "it's half the battle!".

CF is not the alarming sentence it was once interpreted.

Yes, it poses huge challenges and is defined as a lifelimiting illness - but I will defy the general consensus that exists relating to the condition. Somehow you reconcile yourself to a terminal prognosis - taking it in your stride.

I refuse to acknowledge that I have a soon to be expiry date. Patients are living longer than ever with advancing new innovative medicines. Soon, I hope to access a new drug therapy combination that has potential to enhance and prolong the life of mine and others. In the interim, it is critical to endorse a positive and buoyant approach to life as a person with Cystic Fibrosis!

Daniel McDonald.

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Fundraising Challenges and Events For further details on any of our fundraising events, visit our website www.cfireland.ie, contact the CFI Fundraising Team on (01) 4962433 or email fundraising@cfireland.ie April 11th to 17th: CFI National Awareness Week Cystic Fibrosis National Awareness Week takes place from Monday 11th April to Sunday 17th April 2016. We are looking for support to help raise funds and increase awareness of Cystic Fibrosis across the country during this week. There are 3 ways you can help support PWCF during National Awareness Week:

1)

65 Roses Day - Friday 15th April

65 Roses Day takes place on Friday 15th April. This is our National Flag Day and our emblem - the Cystic Fibrosis Purple Rose will be on sale across the country for just â‚Ź2. We are looking for volunteers to sell our Roses in every county. If you can help us, please get in touch by emailing fundraising@ cfireland.ie. 65 Roses Day will be advertising for 3 weeks commencing 28th March on RTE Radio One featuring our ambassador Keelin Shanley. The campaign will also be supported with a heavyweight media coverage on TV, Radio, Press and Social Media. We are calling on everyone available in the CF community to volunteer to sell Purple Roses on 65 Roses Day so that the public can support PWCF on our National Flag Day.

2)

65 Roses Challenge

Why not organise organise a fundraising challenge to help raise funds to support PWCF during National Awareness Week. It can be any kind of fundraising event, just give it a 65 theme. Some events already planned for this year include, coffee mornings, table quizzes, a gym group doing 65 exercises in 65 minutes, purple days in schools and even a group taking on climbing the 7 highest peaks in Ireland in seven days. Make sure to get involved and why not get your school, workplace or gym buddies involved too. If you are feeling brave, you can sign up for our 65 Roses Skydive Challenge which will be happening on 17th June.

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3)

65 Roses Text Donate

Support our 65 Roses Text Donate campaign and Text 65Roses to 50300 to donate €2 to Cystic Fibrosis Ireland. We will send out a webtext during CFI National Awareness Week. Please support and Text Donate and most importantly SHARE the Text with all your contacts.

100% of your donation goes to CFI across most network operators. Some operators apply VAT which means that a minimum of €1.63 will go to CFI. Service Provider: LIKECHARITY. Helpline: 0766805278.

April 9th: Annual Conference Raffle It could be you!

The CFI Annual Raffle will take place on Saturday April 9th in The Clarion Hotel, Sligo at our Annual Conference. Tickets are priced at €2 each or a book of 12 for €20.

There are lots of great prizes to be won including an iPad Air, 2 night stay in The Clarion Hotel, Sligo, €200 Sunway Holiday Voucher, Asus 10" Tablet, Kindle e-reader and much more!

Tickets were posted out in the Conference pack. If you are looking for additional tickets or did not receive the conference pack and would like to request tickets, please contact the fundraising team in CFI on 01 496 2433 or email fundraising@cfireland.ie Remember - If you are not in, you can't win!

April 16th: Challenge The Greenway Challenge The Greenway will take place on Saturday 16th April 2016. This is a 26 mile/42km cycle along the world famous Great Western Greenway - a picturesque off-road trail which traverses the idyllic Atlantic coast. The traffic-free greenway follows the route of the renowned Westport to Achill railway. So why not get away for the day and take in the beauty of the west coast. You will experience dramatic views of Clew Bay, spectacular mountain ranges and pass through many picturesque villages along the way.

Registration is now open on: www.challengethegreenway.com

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May 12th to May 15th: Malin2Mizen Cycle For CF CFI are currently recruiting cyclists to take part in our upcoming Malin2Mizen cycle which will take place from Thursday 12th May to Sunday 15th May. Registration is open on our website www.cfireland.ie. Below are details of the route for the 4 days:

Day 1: Malin Head - Bundoran Day 2: Bundoran - Claregalway Day 3: Clare Galway - Charleville Day 4: Charleville - Mizen Head

If you feel the full 4 days is not for you there is also the option to take part for 1 full day, registration is open on our website. We also plan to hold a 50km cycle on day 4 for the less experienced cyclists. These will be organised in conjunction with the Local Sports Partnerships with the support of local cycling clubs and the local CF Branches. Further details of the 50km cycle is available on our website.

This will be a major fundraising event for Cystic Fibrosis Ireland raising funds and awareness for CF across the country. We would urge anyone thinking of taking part to sign up now.

June 6th: One in 1,000 Ladies, start your journey now!

The VHI Women's Mini Marathon takes place on Monday June 6th 2016. This year, Cystic Fibrosis Ireland aim to have the largest Charity Contingent taking part. To achieve this we need YOU! Will you be One in 1,000 for CFI?

The One in 1,000 is the largest event in the CFI fundraising calendar.

However, it is so much more than that. It is a fun day out and a day of celebration for the CF community. Each individual participant matters and the One in 1,000 campaign recognises each individual's contribution as part of a larger team. Your support, participation and funds raised can help improve the quality of life for people with CF in Ireland.

You might be wondering whether you should take part as you are not sure if you would be able to complete the 10k. However, the Mini Marathon is suited to all levels of fitness so you can walk, jog, run or skip - it is not a race, it is the taking part that counts. If you're still unsure, just remember you will be part of a 1,000 strong CF community who will help you every step of the way!

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The VHI Women's Mini Marathon attracts over 40,000 participants annually, but the only number that matters is One, that's you! Whether you are a regular participant re-joining us in 2016 or a first timer looking to undertake new challenges, this event is for you. So if you are aged 14 or over we would ask you to be One in 1,000 for CFI and take part on June 6th.

Take part as an individual or gather your friends, family, classmates or colleagues and enter as a team.

On the day, CF provide a base in DTwo Hotel, Harcourt Street with a cloakroom, refreshments and entertainment both pre and post-race. There is always a fantastic atmosphere and a great sense of fun and we want you to experience this.

So, the question is - Will you be One in 1,000 for CFI in 2016? This is our key National Fundraising Event of the year, so please come out and help support PWCF on the day.

For further information on the VHI Women's Mini Marathon and the One in 1,000 Campaign visit www.cfireland.ie, contact Nuala by email at nmcauley@ cfireland.ie or phone our office (01) 4962433

August 27th & 28th: Achill Ultra Back to Back CF Ireland are delighted to announce that we have been chosen as charity partner for the Achill Ultra Back to Back 2016.

The event takes place on 27th and 28th August and consists of 3 races (Half / Full / Ultra Marathon) taking place on each day. The 13 mile loop, running along the 'Wild Atlantic Way' can be completed once, twice or three times.

The Atlantic provides a beautiful backdrop along with the islands of Clew Bay, Clare Island and the dramatic coastline of Achill.

Why not challenge yourself and your friends and make a running weekend out of it!

For more information and to register please see www.achillultra.com

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September: 27th to 22nd Paris2Nice CF Ireland are currently recruiting cyclists for the Paris2Nice Cycle - 2016.

For anybody looking for an incredibly enjoyable and rewarding challenge, Paris2Nice ticks all of these boxes.

Riders will arrive in Paris on Friday September 16th and begin cycling on Saturday 17th. You will pass through many beautiful villages and towns on quiet country roads with lovely scenery to admire along the way as you make your way southwards towards Nice. The cycle will finish on the Promenade Des Anglais where you will be greeted by the welcoming team followed by celebration dinner where you can relax with all of your new friends after a week cycling through the stunning French countryside.

The final information evening for Paris2Nice 2016 takes place in The Hampton Hotel, Dublin on Wednesday 13th April at 8pm and we would encourage potential participants to come along on the night. We also advise that anyone with an interest in this event should register for regular information updates on the Paris2Nice website at www.paris2nice.com

October 1st to October 8th: CFI International Walk 2016 in memory of Ita Minogue Would you like to explore the Wonders of Portugal?

Sign up to the 2016 CFI International Walk and take in the Wonders of Portugal while raising much needed funds to help PWCF. Departing from Dublin on October 1st, the eight day trip will take in the various landscapes and landmarks that Portugal has to offer including Jeronimos Monastery, the Belem Tower and the Mafra Forest. Walks will take place every day and will cater to various levels of fitness so that everyone can enjoy the scenery at a pace they are comfortable with. We are delighted to have singer Mary Duff take part again as Ambassador for our International Walk.

If you would like to raise funds to help PWCF and fancy a challenge, making new friends, soaking up the sun as you walk through the wonders of Portugal, then the CFI International Walk is for you.

The price of the walk is â‚Ź2,980 and this covers flights, bed & breakfast accommodation, dinners and guides. However, you also get so much more friendships, memories, experiences and the knowledge that you have made a difference for PWCF in Ireland.

The 2016 CFI International Walk is taking place In Memory of Ita Minogue, a past walker and person with cystic fibrosis who sadly passed away in 2015.

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October 30th: SSE Airtricity Dublin Marathon Sunday is no longer a day of rest, as the 2016 SSE Airtricity Dublin Marathon will take place on Sunday, October 30th! You can take part and still enjoy a day of rest on Bank Holiday Monday!

Are you looking for a Marathon Challenge?

Why not Run for CF? We are looking for participants to join Team CFI and take part in the SSE Airtricity Dublin Marathon. Whether you are a regular runner hoping to add another medal to your collection or a novice looking to complete your first marathon, we want you to run for CF! In this Centenary year of the 1916 Rising, Dublin is alive alive-o with activity. There will never be a better year, a better time or a better place to take part in a Marathon than Dublin 2016.

Registration costs â‚Ź70 and race entry is guaranteed upon payment. The 26.2 mile route is mostly flat and is a single lap which starts and finishes near Dublin city centre.

Still not convinced? The SSE Airtricity Series includes a number of racing challenges to help you prepare for the Marathon. For further information on the Race Series, the Marathon or for top tips on training and nutrition visit www.sseairtricitydublinmarathon.ie To register to take part in aid of CFI email Nuala, nmcauley@cfireland.ie

November 6th: New York City Marathon Registration is now open for the TCS New York City Marathon which will take place on Sunday 6th November 2016. This is a really popular marathon and it is almost impossible to secure a place in the New York City Marathon due to its popularity. With 2 million spectators and a carnival atmosphere, the New York City Marathon is an unforgettable experience.

We are pleased to announce that we have a limited number of Guaranteed Places for this event. We have had a lot of interest in this event, so we would encourage anyone thinking of taking part to let us know as soon as you can and we will provide you with full details of the tour package.

Please email Peter at pminchin@cfireland.ie or call us on 01 496 2433 for more information and to secure your place

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All Year: Kilimanjaro CF Ireland facilitate treks to Kilimanjaro each year and there will be a number of treks running during 2016. Spaces on these treks fill up quickly so if you are thinking of taking part in a trek in 2016, we advise that you book your place now.

Kilimanjaro is not only Africa's highest point but also the highest free standing mountain in the world. The 12 day itinerary includes 7 days of walking on the Machame trail, the most scenic route to the summit. The climb incorporates seven days on the mountain which allows for great acclimatisation and maximises chances of a successful summit attempt.

The route provides spectacular scenery and a wide variety of different landscapes. The sense of achievement after climbing Kilimanjaro and the view from the roof of Africa makes all the hard work and effort well worth it.

For more details and a full list of tour dates in 2016 please see our website www.cfireland.ie or contact Peter on email at pminchin@cfireland.ie

All Year: Skydives CF Ireland are delighted to announce that this year we are holding a 65 Roses Skydive which will take place in the Irish Parachute Club in Clonbullogue, Co. Offaly on Friday, 17th June. Our aim is to get as many people as we can to take to the sky and jump for CF on this day. This promises to be a great day and one to remember for everyone taking part. If you have a skydive on your bucket list then don't delay, contact our office for a registration form to take part in this event. The cost of registration is â‚Ź20 with a fundraising target of â‚Ź500 due by Friday, 27th May. Family and friends are encouraged to come along on the day to show their support.

Please contact Peter in the fundraising department at pminchin@cfireland.ie to get your registration form and fundraising pack.

For anyone who can't join us on Friday. 17th June, don't worry, you can still take part in a skydive at a time of your own choosing. Visit our website www.cfireland.ie for more information on how you can get involved.

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ChariTY for CF In 2015, CFI launched our ChariTY for CF Fundraising Pack to educate Transition Year students about cystic fibrosis and provide them with advice on how to set up charity projects and undertake fundraising events and activities for PWCF.

Following the success of the Pack, we are delighted to announce we will be launching a ChariTY for CF Campaign which will see us update the pack and attend the Transition Year Expo later in the year. We also have plans to expand the campaign to primary and secondary schools following an increase in school community fundraising last year.

The current ChariTY for CF Fundraising Pack is available for download on our website: www.cfireland.ie.

If you are involved in or know of a school who would be interested in the ChariTY for CF Campaign, please contact Nuala on 01 496 2433 or email nmcauley@cfireland.ie for more information.

Scratch Cards Cystic Fibrosis Ireland are delighted to announce that we are launching a test of a €2 Scratch Card, similar to the National Lottery Scratch card, which will be on sale over the coming weeks in selected Retail Outlets across the country. The card which is called Quick Cash has a top prize of €1,000 and wins on 1 in 4 cards. You scratch and match 3 amounts, to win prizes up to €1,000.

H3 MATC TS UN AMO THAT & WIN T UN AMO

The cards aim to build more sustainable income for Cystic Fibrosis Ireland to help us continue to fund services and support for people with CF. They will be distributed by Cameleon Marketing in selected retail outlets only. Please support CFI by purchasing our Scratch Card if you see them in-store and the very best of luck, we hope you are one of the lucky winners.

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FUNDRAISING EVENTS CALENDAR 2016

April

Annual Conference Raffle - April 9th

London Marathon - April 24th

Malin2Mizen Cycle - May 12th to May 15th

May

Cystic Fibrosis National Awareness Week - W/C 11th April - 65 Roses Day - April 15th : Sell Purple Roses nationwide - 65 Roses Challenge - Undertake any challenge linked with 65 - 65 Roses Text Donate Challenge The Greenway - April 16th

June One in 1000 (VHI Women's Mini Marathon) - Bank Holiday Monday June 6th

August

Sept

Oct

Nov

Achill Ultra Back to Back - August 27th & 28th Paris2Nice Cycle - September 17th to September 22nd

CFI International Walk in memory of Ita Minogue - Oct 1st to 8th New York Marathon - Nov 6th

All Year Kilimanjaro

Skydives

For further details on any of our fundraising events, visit our website

www.cfireland.ie, contact the CFI Fundraising Team on (01) 4962433 or email fundraising@cfireland.ie

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Thank You It is not possible to list all of the Fundraising Events that have been organised since our last edition of Spectrum, but we would like to take this opportunity to thank everyone that has volunteered and raised money on behalf of people with Cystic Fibrosis. Every cent raised helps provide a better quality of life for people with CF and please keep up the great work. Here is a short summary of some of the remarkable efforts of our Volunteers.

Rome2Nice 2015 A huge thank you to Dr Barry Jones, his wife Aisling and the Rome2Nice Team 2015. We would also like to thank everyone who helped the team in their fundraising with the total amount raised now standing at â‚Ź87,403.

This is an incredible amount of money raised by Barry, Aisling and the team, coming on the back of a similar fundraising drive by Barry and Aisling with the Paris2Nice Team in 2014.

Montenegro Walk The 2015 CFI International Walk to Montenegro marked the 21st International Fundraising Walk for Cystic Fibrosis.

A huge thank you to everyone who has supported, taken part and helped organise the Walk over the years. The International Walk is a major fundraiser and the longest running fundraising event of Cystic Fibrosis Ireland.

The Montenegro Walk raised an amazing â‚Ź89,616.40 for CF. Congratulations to the Walk Committee and to all the Walkers who played their part in raising this fantastic amount for PWCF and for their continued support towards the International Walk.

Plans are well underway for the 2016 CFI International Walk to Portugal, which you can read more about on page 21

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Josie's Christmas Lights Congratulations to The Leonard Family of Rathdrum Road, Crumlin who were not only awarded the Best Christmas Lights in Ireland by The Late Late Show, but who also raised an amazing €3,977 for Cystic Fibrosis Ireland with their display.

Josie's House has been lighting up Crumlin for over 30 years and this year they went the extra mile with fundraising In Memory of Denise Saul. A huge thank you to the Leonard Family for their support and indeed to everyone who visited Josie's House and donated to support Cystic Fibrosis Ireland.

We hope Josie is enjoying a well deserved break and look forward to seeing the light display again in 2016, the countdown to Christmas has already begun!

Mylan We would like to say a huge thank you to Mylan for their ongoing sponsorship of the race shirts for 1 in 1000 - VHI Women's Mini Marathon.

They have kindly offered to sponsor the shirts again to the value of €7,000 for this year's event which takes place on Bank Holiday Monday, 6th June.

We would also like to thank Mylan for provision of an Educational Grant of €4,600 which will be used towards supporting the costs of new information leaflets which will be published during the coming months.

CEX We are delighted to have the support of a new Charity of the Year Partner CEX and wish to thank them for their donation of €2341.71 recently provided to CFI from fundraising in-store.

We are also delighted to hear that a team of staff from CEX are going to join us for the 1 in 1000 - VHI Women's Mini Marathon on June 6th.

EMC CF Ireland would like to say a big thank you to EMC who recently presented a cheque for €7,000 to CFI from fundraising proceeds from their annual Christmas Lunch. The proceeds were raised through a combination of a charity lunch, a raffle and also the auctioning off of a signed Paul O' Connell painting which was kindly painted by Rick Kelly (PWCF).

Pictured below at the presentation were Philip Watt (CEO, CFI) and Gerry Murray (Country Manager, EMC).

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Shane Brennan 5K Thank you to the organising committee of the Shane Brennan 5k road race which took place on Dec 26th last in Newtown Forbes, Co. Longford and raised €5,000 for Cystic Fibrosis Ireland. Well done to all involved including all those who took part.

Christmas Donations We would like to thank all the companies who gave a donation to Cystic Fibrosis Ireland at Christmas including;

Johnson & Johnson Ireland - €3,250 Twomey Moran & Partners - €2,000 Ladbrokes Dun Laoghaire - €1,000 Malone Engineering Group - €500 DV Uniforms - €500 Pfizer Ireland - €300 Taylormade Ewe Knits - €250 Irish Domestic Appliances - €50

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Statement of Guiding Principles for Fundraising As we enter into our busiest time for fundraising with our National Fundraising Day - 65 Roses Day taking place on Friday, 15th April with volunteers selling Purple Roses for Cystic Fibrosis Ireland across the country, we would like to remind everyone involved in fundraising for Cystic Fibrosis Ireland that we are fully signed up to the Statement of Guiding Principles for Fundraising www.ictr.ie This statement exists to: •

Improve fundraising practice

•

Promote high levels of accountability and transparency by organisations fundraising from the public

•

Provide clarity and assurances to donors and prospective donors about the organisations they support

On our website we have a Donor Charter, Fundraising Complaints Procedure and a Public Disclosure statement in accordance with these guidelines.

The principles require that 'All public collections have a Garda permit, or where no permit is necessary, permission from the relevant authority'. For our National Fundraising Day for CF (65 Roses Day - April 15th), we have secured Garda Permits across the country which allows you to conduct fundraising collections as well as sell our Purple Roses. It also ensures that this is our day as no other charity can have a permit on the same day. In addition we have permission from Shopping Centres across the country to raise funds on 65 Roses Day in their Shopping Centre and look forward to volunteers participating across the country to make this day the National Day for fundraising for Cystic Fibrosis in Ireland.

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WILL YOU BE ONE IN 1,000?

VHI Women’s Mini Marathon Bank Holiday Monday, June 6th We are looking for 1,000 people to Run, Jog or Walk in the VHI Women's Mini Marathon.

Take on the 10km challenge by yourself or even better with a Team of your family, friends or colleagues!

For further information or to sign up to the One in 1,000 Campaign and take part in the VHI Women’s Mini Marathon on June 6th for CFI, contact Nuala on 01 496 2433 or email nmcauley@cfireland.ie

Cystic Fibrosis Ireland 24 Lower Rathmines Road Dublin 6 Ireland

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t: +353 1 496 2433 f: +353 1 496 2201 e: info@cfireland.ie w: www.cfireland.ie Company Reg: 449954 Charity: CHY6350