Issuu

Spectrum

Winter / 2015

È Hospital Development Update È Update on Orkambi È Research Update È North American CF Conference È Fundraising Updates

Spectrum | Winter 2015

Foreword Orkambi is at the top of many families' Christmas wish-list for 2015. It is the first medicine to treat the underlying cause of Cystic Fibrosis in people aged 12 and older with two copies of the F508del alteration. 450 people with CF in Ireland have the potential to immediately benefit from this drug. In time, if it is also extended to those under 12, there may be as many as 600 people in Ireland who will benefit, that is if the government is prepared to pay for this important drug.

It's worth quoting the Principal Investigator, Professor Stuart Elborn, Dean of Medicine in Queens University Belfast who stated:

"For people with cystic fibrosis, the disease is a lifelong battle that becomes progressively more serious with repeated hospitalisation due to lung infections. Until now, people with two copies of the F508del mutation have only had treatments for the symptoms and complications of the disease......The combination of lumacaftor and ivacaftor represents a step-change in the management of cystic fibrosis for these patients because it addresses the underlying cause of the disease. By doing so, it has shown meaningful and sustained benefits".

CFI has written to the Minister who has vowed to find additional funding for Orkambi, should it be positively assessed. However it is widely acknowledged that the present system of assessing new and innovative drugs in Ireland disadvantages drugs for less common/rarer diseases such as CF. In fact the Government's own National Rare Disease Plan calls for a review of the present process (Recommendation 30).

It's great to see new CF centres in Cork (adult in-patient), Limerick (adult in-patient) and Castlebar (paediatric out-patient) opening over the last few weeks. These will make a huge difference to those attending these centres. See news updates on page 2 for more information.

Merry Xmas from all of us in Cystic Fibrosis Ireland. Look out for our information meetings in the New Year in your area if you have not attended one already! Philip Watt (CEO) Samantha Byrne (Editor) Front Cover: Two members of the Row a Round Ireland team as they passed the Cliffs of Moher - to remind us all of sunnier days!

CONTENTS Latest News | 2Ñ4

Information | 9 - 12

È Hospital Developments

È Information Evenings È St. Vincent's Campaign & Joe Duffy È Annual Conference 2016 È Notice of AGM È TLC4CF Update

Research | 5Ñ8 È Information Evenings È Successful Health Research grant È Exercise Testing in CF È Research Fellowship Award È Patient Experience on Orkambi

Spotlight | 13 - 16 È North American Cystic Fibrosis Conferenc by Louise Byrne

Fundraising | 17Ñ33 È Challenges and Events È Thank you È Stories

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

Latest News Hospital Developments Cork CF inpatient unit opens The 8 room CF inpatient unit in Cork University Hospital opened on 7th December 2015. Most of the capital funding was raised by a local CF charity Build4Life with the help of many members of Cystic Fibrosis Ireland. "The â‚Ź2.3m raised is a fantastic achievement. Congratulations to Joe Browne and Build4life" said Philip Watt, CEO Cystic Fibrosis Ireland. The unit will provide 8 dedicated CF rooms and a further 2 if necessary in an adjoining ward. Many thanks are due to the excellent CF clinical team lead by Professor Barry Plant and his team including Cathy Shortt who was given an all-time achievement award at last year's annual conference in Limerick. A word of thanks to the on-going work of the Cork and Kerry branches of CFI including Marian Barrett, Cathy Carlton, Betty Hand, John Healy, Tim and Colette O'Donoghue, Paul Higgins and many others.

Mayo outpatient unit opens The new outpatient unit in Castlebar Hospital will be opening officially in mid-January 2016 and will make a huge difference to the patients in the greater Mayo area. Many congratulations to all who have been involved in the project including Martina Jennings and our own staff Tomas Thompson and Caroline Heffernan.

Limerick CF In-Patient and Out-Patient clinic opening on a phased basis The new CF unit in Limerick which cost â‚Ź5.5m and which includes both an inpatient and outpatient unit is opening on a phased basis, as reported in the last issue of Spectrum. The first phase - the opening of 5 of the 9 inpatient rooms has been completed and were opened on schedule at the beginning of November. The Leben building in University Hospital Limerick represents one of the most remarkable developments in the history of Irish Health care. There are several unique features to this project including: It is a partnership project: On 30th August 2010 the 3 charities concerned (CFI/TLC4CF, Parkinsons Foundation and the Hospital Foundation) set up a development company called 'Leben' in which all decision making for the build project was made and all funding for the project going forward was kept in escrow. The charities contracted with the Builder and took all the risks: In 2012 the 3 charities through Leben contracted with an Irish building company to build the 6 storey building which was completed in November 2015. The Leben Building will be formally handed over to the hospital in December 2

2015. This meant the charities took all the risks in building this project. Patient conditions have been dramatically improved: The CF unit will benefit the 120 adult CF patients attending UHL. Previous conditions were completely unacceptable. There were only 3 CF inpatient rooms for adults, an inadequate day-care centre and it was difficult to maintain the adequate cross infection standards demanded by CF care international standards. The project created 100 additional staff jobs: The additional staffing costs are being paid by the HSE/Irish Government. These roles were created after extensive lobbying by Cystic Fibrosis Ireland/TLC4CF with support from the Hospital Management. This means for example that for the first time there should be a more complete CF multi-disciplinary team for adults in Limerick. Staff conditions have been improved: The new building provides new offices and facilities for doctors, nurses, clinical staff and a brand new staff canteen. This will help attract specialised staff for CF; Stroke and Oncology/Dermatology services in Limerick. The project was funded and built during a period of economic crisis: This unit would not have been built other than for the efforts of the 3 charities involved in partnership with UHL and JP McManus Pro Am. There was no funding available from government over the last few years for such major capital projects. The largest single project within the Leben development was the Cystic Fibrosis Unit (2 floors). While the 2 CF designated floors will primarily benefit CF adult patients, when the 9 CF inpatient rooms are not needed for CF patients they will be made available to other very ill patients who need them.

Spectrum | Winter 2015

Plans for the New CF Adult Inpatient Unit at University Hospital Limerick, part of the Leben Development

Above top:

Plans for the New Outpatient Unit at University Hospital Limerick, part of the Leben development

Above left:

The Leben building in UHL, shortly before completion in October 2015

Above right:

The CFI/TLC4CF Committee who coordinated this project. Liam O'Kelly, Caitriona Hayes, Linda Drennan, Marcella Clancy, Owen Kirby (Chair of TLC4CF) with Philip Watt (CEO of CFI)

Research Successful Health Research Authority (HRA) grant application Project Title: Patient Preferences for Health This project is being led by Dr Roisin Adams, Deputy Head of the National Centre for Pharmacoeconomics (NCPE), in partnership with the cystic fibrosis (CF) and multiple sclerosis (MS) communities.

Paper for Universal Health Insurance. Why is this an important project for the CF community? As CFI and the CF Registry are collaborators on this project, the CF community have a unique opportunity to lead the way in integrating the patient voice and patient perspective in the formal process used to assess the 'value' of new technologies or therapies. The CF community have seen new, innovative therapies being assessed using the current QALY framework, and have highlighted short-comings around the measurement of Quality of Life and 'value' for patients. It is essential that there is a formal, and fair assessment

In Ireland we ask society or the general public to state their preferences for descriptions of health. We then use these valuations or preferences to calculate the impact of technologies/new therapies on quality of life and this informs how decision makers decide what to fund. This is known as the QALY framework and is used in most jurisdictions to determine benefit alongside value. The majority of national societal valuation studies ask people to imagine being in a health state and the experience of being in a health state is not explicitly captured. However it is likely that a person's experience of being in a health state will alter their preferences compared to those who are only imagining being in that state. In determining whether treatments represent value for money we mainly consider societal valuations of imagined health states and very little information is included formally from patients. The work proposes to quantify the differences between patients' valuations having experienced and not experienced health states and the general population. It will also explore whether non-health aspects, defined as wellbeing are captured by the QALY. Finally it will use a sub population of patients who have cystic fibrosis or multiple sclerosis to construct a value set to test the impact on decisions related to reimbursement of pharmaceutical technologies. The body of work proposed will inform how we establish the Values Framework as laid down in the government's White Spectrum | Winter 2015

process for all new technologies/therapies and this provides a good opportunity to impact on the fundamental principles for such assessments, and have patients with CF and MS providing the voice for this change. It is expected that data collection for this project will begin Mid-2016, and we encourage as many of our members as possible to participate in this important research project.

Exercise Testing in Cystic Fibrosis Cystic Fibrosis Ireland recently supported Sarah Kelly and Ronan Buckley, two of the Senior Physiotherapists from the Cystic Fibrosis Service in St. Vincent's University Hospital, Dublin in attending a course in Cardio-Pulmonary Exercise Testing and Interpretation run by the Association for Respiratory Technology & Physiology. The CF Physiotherapists at St. Vincent's have a major interest in Exercise Physiology and Muscle Function in CF. Here, we share some of the key points of the course and its impact on people with CF. 5

The beneficial effects of exercise as a treatment modality for people with Cystic Fibrosis are well recognised and documented - it can maintain lung function, improve nutritional status and preserve quality of life.

Why do we need exercise tests? As physiotherapists, carrying out standardised exercise tests on our patients with Cystic Fibrosis on a regular (annual) basis is very helpful for informing our practice. It can help evaluate physical limitations and

assess exercise-associated symptoms (e.g. shortness of breath), it can be used to develop or determine the effectiveness of training recommendations, and is frequently used as an assessment tool for lung transplant candidates. A recent article in the Journal of the Royal Society of Medicine (DS Urquhart, 2011), also highlighted that undertaking an exercise test can be an empowering experience for people with CF, as it demonstrates their ability to exercise safely. Furthermore, as physiotherapists, we aim to make all of our treatments evidence based and exercise testing can be used as a valuable outcome measure in research activities. What kind of exercise tests do we do? Cardio - Pulmonary Exercise Testing (CPET): A CPET test may be known more commonly as a VO2 max test. The exercise test may be carried out on an exercise bike or on a treadmill. Different testing protocols may be followed for different individuals, but in general the test consists of a short (12 minutes) 6

period of exercise that gets continuously more difficult (eg treadmill gets faster or more resistance is put on the bike). The subject's oxygen uptake and carbon dioxide output are measured continuously through a gas analyser. Interpretations of the results provide detail of any cardiac, respiratory or metabolic limitation to exercise. Whilst CPET is considered the 'gold standard' in exercise testing, the set-up cost, maintenance of equipment, time and staff training can make it challenging to carry out. 6 Minute Walk Test (6MWT): Interestingly, research has shown that there is a strong link between VO2 max on CPET and distance walked during a 6 MWT, making it a valuable and more practical tool for monitoring exercise capacity in patients with chronic cardiopulmonary disease. This test, which is carried out over a 30-50m course, requires patients to walk as many lengths of the course as possible during the six minute test, at a pace determined by the patient. Heart rate, oxygen saturation levels, and rate of perceived exertion/breathlessness are recorded at regular intervals, and during the three minute recovery phase. The reliability and validity of this test is well documented, and it is relatively cost and time efficient to perform. Shuttle Walk Test: The shuttle walk test is an externally paced, multilevel/incremental walk test. This means that at given time intervals the walking pace required increases. It is performed over a set distance, usually between two cones and patients are allowed to run if able. The test is terminated when the patient fails to be within 0.5m of the cone on two consecutive occasions (making this a maximal test) or once all 15 levels of increased speed have been completed (submaximal). Again, there is a close correlation between shuttle walk tests carried out over 10ms and oxygen uptake on CPET.

Maximal or submaximal Exercise testing? Both maximal and submaximal exercises tests can be used to measure or predict exercise capacity. Maximal testing is seen as the 'gold standard' measure however, submaximal tests can prove a comfortable option for some individuals with underlying health issues. How can I prepare / improve my exercise test rest? It goes without saying that regular exercise, for an appropriate duration and at an appropriate intensity for the individual is important for both maintaining and improving exercise capacity. Your physiotherapist will give you guidance as to what is an appropriate level of exercise for you. On the day of the test the following guidelines should be followed by the patient to ensure the most favourable result: • • • • •

A light meal should be eaten more than 2 hours prior to the test. No caffeine should be consumed on the day of the test. Comfortable and appropriate clothing and footwear should be worn during the test. Medications should be taken as prescribed (unless advised otherwise). Good quality and thorough airway clearance should be performed prior to the test.

Cystic Fibrosis Ireland /Irish Thoracic Society/Gilead Research Fellowship was awarded to Dr Suzanne Carter, Respiratory Specialist Registrar, St Vincent’s University Hospital (SVUH) Project title: Understanding acute pulmonary exacerbations in cystic fibrosis Project Summary: The central hypothesis of this study is that there are clinical, physiologic, and serum markers that can be identified in CF patients that will accurately identify a pulmonary exacerbation subtype and that these markers will predict medium-and long-term response to intravenous antibiotic treatment. It is clear that not all CF exacerbations are the same. The treatment of exacerbations usually involves IV antibiotic treatment often of fixed duration. Clearly, there are a multitude of factors that could cause CF exacerbations that would not necessarily respond to antibiotics. Viral infection, sinus exacerbation, allergic asthma as well as non-compliance with physiotherapy and exercise all could cause an increase in symptoms and drop in lung function meeting criteria for treatment with antibiotics. There is a need to identify these exacerbation subtypes before embarking on a clinical trial to look at the effect of antibiotics on exacerbations. Two clinical questions continue to challenge clinicians looking after CF patients during exacerbations; i) What proportion of pulmonary exacerbations are due to increased bacterial activity? ii) Why do up to 25% of CF pulmonary exacerbations fail to respond to antibiotic therapy? There is an unmet need to identify subtypes of CF pulmonary exacerbations, specifically looking at why some patients with exacerbations fail to fully respond to antibiotic therapy. The information collected in this study will be ultimately used to design a clinical trial comparing conventional antibiotic therapy which is usually given for a fixed duration (14 days or 21 days is the current average) versus a goal directed approach which would use information derived from this study to determine the optimal time to discontinue antibiotics.

Spectrum | Winter 2015

Why is this research important to people with CF? CF exacerbations are a common reason for hospital admission in patients with CF. Improved understanding of the pathophysiology of exacerbations and factors associated with response/non-response to therapy will help optimize patient care. We also envisage that our findings will help us to deliver antibiotic therapy more appropriately and over an evidence-based time frame. More appropriate antibiotic prescribing can benefit patients through a reduction in the incidence of antibiotic toxicity, antibiotic resistance, complications of central venous access devices, hospital acquired infections and the psychological impact of repeated prolonged hospital admissions. Exacerbations also have an economic burden for the patient and the health service as they frequently result in extended periods out of school or work as an inpatient.

Update on Orkambi An article recently published in the Sunday Business Post, claiming that the HSE will not fund Orkambi, has understandably caused severe anxiety and distress among the Cystic Fibrosis community in Ireland. The statement made by the HSE, that Orkambi will not be funded is incredibly premature & disrespectful, as Orkambi, and indeed expanded use of Kalydeco, have not yet gone through the relevant Health Technology Assessments with the National Centre for Pharmacoeconomics (NCPE). CFI have made representation to the Minster for Health & public officials calling for this drug to be assessed fairly and without the prejudice that appears to be have been demonstrated by the HSE in the aforementioned article. Current Status of Orkambi & Kalydeco: Vertex Pharmaceuticals made their first submission to the NCPE in early December. Orkambi, and Kalydeco for expanded use in R117H (for PWCF over 18 years) and G551D (expanded use to PWCF aged 2-5 years), are currently undergoing a rapid review, which takes between 2-4 weeks. Once this rapid review is complete, the NCPE will make a decision as to whether the drugs will be required to undergo a full Health Technology Assessment (HTA), we expect that Orkambi & Kalydeco will be required to undergo a full HTA. Cystic Fibrosis Ireland are currently preparing a submission which will outline the patient perspective of Orkambi and Kalydeco, and will ensure that the patient voice is given due consideration and weight in the assessment and decisions made in relation to the reimbursement of Orkambi & Kalydeco. A sincere thank you to everyone who has taken the time to complete our survey assessing your views of â€˜treatment & CF, with almost 500 responses, the evidence produced from this research will offer a representative view on what really matters to patients & their families. We also ask PWCF who have participated in the clinical trials for Orkambi to get in touch (if you have not already done so) and let us know about your experiences. You can call CF Ireland on 01 496 2433 or alternatively email your thoughts to kmurphy@cfireland.ie.

Information Series of Information Evenings Over the past two months CFI have hosted a number of information evenings around the country in partnership with local branches. We started our journey in Portlaoise. With the fantastic support of the Midlands branch we had a very successful evening, with a great turnout on the night and also additional viewers tuning in online via the live-streaming service. We then travelled to Dublin, Limerick and finally Galway to provide information and answer questions around the area of new therapies, and the approval process for new therapies. We would like to extend a special thank you to Dr Ed McKone who delivered a wonderful keynote presentation (both in Portlaoise & Dublin), explaining so clearly the science behind the development of new therapies and taking us through the upcoming and on-going developments in the CF drugs development pipeline. CFI's research and development officer, Katie Murphy (PWCF) provided an insightful presentation taking us through the steps taken for the approval of new therapies at a European and national level. Videos from this event are available on our website www.cfireland.ie and we highly recommend anyone who missed the events and live stream take a look. The CF team at University Hospital Limerick were extremely proactive in organising their annual parents' information evening which saw informative talks around new therapies (Dr Brian Casserly), Nebuliser practicalities (Ciara Fannon - Physio), 'Fat facts' (Donna Daly - Dietician), approval of new therapies (Katie Murphy, CFI), an update from CFI (David Fitzgerald) & an update from TLC4CF (Marcella Clancy). This event was also live streamed and will be available to view on the TLC4CF website. Again we would like to thank all of the CF team at UHL, and TLC4CF for their coordination of this evening. Finally, we ventured to the West to a wonderfully run event - we would like to thank Mary Lane Heneghan, who organised this event so well! Again the primary focus of the evening was to look at developments in new treatments for CF, with the keynote presentation being delivered by Dr Michael O'Mahony (UHG). We would also like to thank CFI's Chairperson David Fitzgerald who attended, chaired and presented at all of the evenings! We will be continuing our roadshow so keep an eye on our website, your emails and social media to see an event near you!

Spectrum | Winter 2015

St Vincent's Campaign and Orkambi on Joe Duffy's Liveline callback In case you missed it, Joe Duffy's TV programme on Tuesday 15th December featured the impact that people with CF made to the St Vincent's campaign to build the new CF unit that opened in 2012. It is available on RTE Player until January 14th. The programme features those who phoned in to Liveline during the campaign. Across: Joe Duffy, RTE Liveline 'Callback' series on RTE.

CFI Annual Conference 2016 - Save the date! Preparations are underway for our Annual Conference which is taking place between 8th and 10th April in the Clarion Hotel, Sligo. The title of the conference is 'Back to Basics' and we will cover issues including hygiene & adherence and complementary diet / therapies. We will have keynote speakers, expert panel discussions and workshops. The full agenda will be included in the conference packs which will be sent out to attendees in February. For those that cannot make it, be sure to check our website for live streaming of talks in the main conference room. Further information will be posted on the website and Facebook over the coming weeks and months.

CFI Eastern Region , Ireland email: pembroke.lodge@gmail.com

Notice of AGM NOTICE IS HEREBY GIVEN that an Annual General Meeting of the Cystic Fibrosis Ireland, EASTERN REGION will be held at:

Cystic Fibrosis Ireland, 24 Rathmines Road, Dublin 6.

Monday 8th February, 2016 at 8:00pm Chairman: John Coleman AGENDA 1.

Hon Secretary - Minutes of the previous meeting and matters arising

2. Apologies 3.

Hon Chairmanâ€™s Report

Reports and accounts

Honorary Treasurerâ€™s Report

5. Resolutions To approve the accounts for the year ended 31st December 2014 and 31st December 2015. To appoint the Hon.Chairperson for the year to 31/12/2016 To Appoint the Hon.Treasurer for the year to 31/12/2016 To Appoint the Hon.Secretary for the year ended 31/12/2016 To Appoint the delegates for the NEC/Board of the Cystic Fibrosis Ireland Mart McCarroll Honorary Secretary 14th December 2015

Please confirm attendance to pembroke.lodge@gmail.com

Spectrum | Winter 2015

TLC4CF Our Christmas Angel TLC4CF were deeply upset to learn in September that some of the proceeds from the North Clare CF cycle were subject to the liquidation process for Precision Timing, who had handled the online registration for the event. Many Irish charities were adversely affected by the closure of this Clare based sports event company. To the delight of our supporters, Plan Net 21 Communications Ltd. from Galway came to our rescue, without any fanfare and donated €4,000 to cover the loss! Sincerest thanks and best wishes to our Christmas angel!

TLC4CF - fundraising 2015 was another active year on the fundraising front for TLC4CF. Over 54 community fundraising events were held, bringing in more than €200,000! Highlights of the year included Cathal & Rheas children's mountain climb, the TLC4CF Golf Classic and the North Clare CF cycle/run/walk. Our thanks to the Shannon Group, the Pakie Ryan and the Hurley Hoey 10k event for making TLC4CF their charity of the year in 2015. The branded TLC4CF product range was also widened to include new cycling jerseys, baseball caps, woolly hats, bandanas and running tops.

Dr. Brian Casserly, Adult CF Consultant in Limerick and his team mates Dr. Elizabeth O'Mahony and Dori & Nicky Cotter supporting the TLC4CF Golf Classic in Adare. The event raised over €15,000 for the new CF unit in the University Hospital Limerick!

Cycling legend Stephen Roche being presented with a new TLC4CF cycling jersey.

Philip Watt - CEO

Peter Minchin - Fundraising

Fergal Smyth - Fundraising Manager

Nuala McAuley - Fundraising

Jolyn Mulvey - Accounts/HR

Grainne Lynch - Office Admin

Agata Adamaszek - Accounts

Caroline Heffernan - Patient Advocate

Sam Byrne - Member Services

Tomas Thompson - Patient Advocate

Katie Murphy - Research

Erin Sugrue - TLC4CF

Spectrum | Winter 2015

North American Cystic Fibrosis Conference, Phoenix, Arizona By Louise Byrne I always knew the North American CF Conference (NACFC) would be quite an event, but when I attended this year for the first time, I was not prepared for the grand scale of it. With over 4,000 attendees representing 42 countries it was exhilarating and hugely inspiring to be surrounded by this global CF community and witness Phoenix Convention Centre abuzz with brains and passion. The event is primarily aimed at the medical, scientific and pharmaceutical community involved in CF study and care. The first thing that struck me was the genuine interest and compassion of the researchers and scientists attending. The ones I met care deeply and work tirelessly on our behalf to look for ways and means to improve the quality of life for everybody affected by CF. Sometimes that means discovering ways that don't help; but it doesn't discourage them; indeed it spurs them onto greater ideas and action. There were no meaningless conversations; every meeting or introduction developed into sincere queries about my daughter once they discovered I was parent to an 8 year old with CF. "What are her mutations?" "What does she culture?" "How is she?" "What meds do you use?" Every parent (of a child with CF) I know, can admit to feeling very isolated and lonely at times. In Phoenix, for the first time since my daughter's diagnosis, for several days I did NOT feel those challenging emotions and instead, what I DID feel was constantly connected, empowered and positive within this large and powerful community. On Wednesday 7th October; I was part of a five parent panel speaking to new members of multidisciplinary teams about our individual journeys with CF. Some common themes prevailed amongst all the parents. There was a desire for greater and improved communication between parents and the medical team, and a need 14

to feel more involved in many aspects of the decision making process surrounding our children. Also highlighted was the need by parents to feel that their child's health was being assessed at an individual level and that in certain ways, parents are the ones that can give vital information, which sometimes feels overlooked or dismissed by medical personnel. Obviously, parents feel enormous pressure to do the very best they can for their child. Day to day, this translates as adhering to challenging treatments and protocols but there is also a huge desire to keep abreast of updated information and treatments and sometimes actively partake in and search for ways to help manage our child's health. In different ways we expressed an ideal situation, whereby we worked alongside the clinic teams to find the best and most appropriate treatment protocols whenever possible, with nothing being dismissed outright or disrespected by either party. Thursday, Friday and Saturday were full days of workshops/discussion/ speakers and plenary sessions. Looking at the schedule paralysed me; I wanted to go to everything but I couldn't. I had naively thought prior to arriving, that I could pop into one session then leave to catch the end of another session of interest. I realised after my first visit to the 24 acre (yes, 24 acres!) convention centre site that was an impossibility! So I picked my top ones to attend and picked brains from people who attended other sessions. Some of these sessions I freely admit were well above my scientific comprehension; others were common sense, hugely rewarding and interesting. The following are my own highlights from the conference:

Nutrition I was delighted to hear of a move away from the unhealthy high fat/calorific traditional CF diet into a more healthy way of incorporating 'good' fats and calories. As life expectancy continues to increase; finally attention is being given to this vital area of cf life. 'Wellness Through Diet: A New Spin On Healthy Eating For The Whole Family Of A CF Household.' There is now a growing concern for the quality of fat intake and a need to be more aware of a heart and bowel healthy way of getting extra calories. Healthy oils and fat should be incorporated rather than the traditional saturated fats. Also, fruit and vegetables previously quite forgotten are mentioned for their fibre health alongside the vital vitamins and minerals they provide. Healthy fluid intake was also referenced. There was an emphasis on encouraging healthy eating for the entire family as opposed to targeting PWCF with fat laden foods. Reference was made to new Vitamin D guidelines recently published by North American CF Foundation to ensure adequate levels for PWCF were maintained. A link between adequate Vitamin D levels and decreased respiratory exacerbations and hospitalisation days each year was also made. There was reference to the link between gut health and lung health which again, emphasises the need for a healthier diet in CF life and ways that can be achieved.

exercise testing to determine intensity and duration of the prescribed exercise. Mental Health There was a large session on mental health and various other sub sessions dealing with anxiety and stress over the course of the conference. An encompassing study of over 6,000 patients and more than 4,000 caregivers spanning 9 countries showed, maybe unsurprisingly, that PWCF and their caregivers were at increased risk of suffering with depression and anxiety. The extent of the risk was surprising however, being two to three times higher than the general population. New guidelines recommended that regular screening be carried out on an annual basis. Other sessions on this topic were 'Mindful Strategies To Deal with Stress, Anxiety and Conflict associated with Chronic Illness' and 'Cystic Fibrosis and Mindfulness-Based Stress Reduction Programs: Impact on Depression and Quality of Life'. Hugely relevant to note that apart from the psychological side effects, depression and anxiety themselves can increase inflammation in the body so another vital reason to positively manage this aspect as early as possible. As a parent, I feel that if caregivers are screened and supported in the early years post diagnosis, they are better equipped to manage and this has a positive impact on the young child. Lung Imaging

There were several related sessions and sub sessions on the tools used in assessing lung health and changes Exercise is noted as an increasingly key part of CF care within the lungs. The x-ray was barely mentioned and improving not just airway clearance, but also, altering the emphasis is instead being directed towards CT and MRI inflammatory process, increasing appetite, cardiovascular scans; both of which can give important and clearer health, bone mineral density, confidence, mental health indications of lung health. MRI gives radiation free and overall quality of life. CF providers also referred imaging but is not suitable for younger children without to an 'Exercise Prescription'. This is essentially exercise sedation; CT scan radiation levels are age appropriate tailored to the individual based on factors such as: age, and should not cause any concern. As lung disease can affinity for specific activities, patient time and/or any be present in children with CF as young as 12 weeks of constraints. They also incorporate the results from Exercise

Spectrum | Winter 2015

age; any and all improved technology and surveillance of early disease progression translates to better clinical surveillance, plus a potential for clinical trials in a younger age group where lung disease is still mild and potentially reversible. People Bob Beall was honoured for his 35 year dedication to the Cystic Fibrosis Foundation (CFF) and Preston Campbell III was welcomed as its new President & CEO. Preston Campbell is billed as being a 'trailblazer' in his own right. He has worked with the CFF for 17 years, has a medical degree and is well versed with the Foundation's drug development and research programmes and vows to continue the momentum in these two exciting areas. When Bob Beall joined CFF, cystic fibrosis was a paediatric disease with the median predicted age of survival at 18; today it is over 40, in the USA. With Beall at the helm; the CFF achieved some pretty remarkable strides in research, treatment and care. He presided gracefully over these pivotal moments. I wished him well in his retirement on behalf of CFI and Irish parents and PWCF. He was in an emotional mood, and after we spoke he hugged me warmly and smiled with misty eyes simply saying; "Ah, Ireland". I am in awe meeting Paul Quinton and openly tell him so; something he deflects with ease and modesty. Paul Quinton, Ph.D. is a professor of paediatrics at University of California San Diego, and a professor of biomedical sciences at University of California Riverside, where he works on CF related research. He is 71, cycles to work every day, has a great warmth, energy and easy charm about him AND (in case you don't know), he has CF himself! His story is magnetic, diagnosed with chronic bronchitis as a very young child he jokes that his mother's 'galactic' cure all remedy for years was Vick's Salve, which he was duly smothered in front and back at cold season and sent to school smelling like a Eucalyptus tree. He diagnosed himself with CF aged 19, and this was duly confirmed via sweat test. He has been involved in CF research all his life, and no doubt, 16

will continue to be. He is a person driven by kindness, passion and ethics and I love every moment speaking with him. I give him a book of Yeats poetry, (which I know he likes) and also one of my books as a gift. The next day, I bump into him on his way to give a talk and he grins in delight. "Louise, please sign your book for me! When I read it to my grandson I want to tell him I know and met you!" I sign, awash with confusion, delight and irony, and hand it back to the 'Legend'. Conclusion It has been said for some time but there is no doubt in my mind now that CF treatment and care is in exciting and very promising times. This feeling is cemented in my mind after my first NACFC, because of the extraordinary people I met during those days. Many of these people have no personal connection with CF; but quite simply, they genuinely care. Bob Beall joined CFF in 1980; and, with dedication and shrewd management has left it 35 years later, an imposing and successful organisation, with a drug pipeline set to become one of the most triumphant in medical history this century. The scientists and researchers I met are driven people with enviable and brilliant minds, but who remain deeply affected by families with CF. They strive to understand and make our journey easier and, indeed, to entirely alter the course of our journey in the not too distant future. It may sound na誰ve, but it feels right for me to say, that this combination of drive and passion, alongside heartfelt dedicated daily care provided by CF families around the world; appears to have set the stage for monumental and positive changes in all our lives - in a future almost within our grasp.

With sincere thanks to CF Ireland and Vertex for support and sponsorship.

Fundraising Challenges and Events March 25th (Good Friday): 1916 Walk What do you plan to do to commemorate 1916? 2016 will be packed with events which look back at the events of Easter 1916 and the impact these events had on the last 100 years in Ireland. On Good Friday, Cystic Fibrosis Ireland have organised a guided tour of Dublin with Irish historians Lorcan Collins and Conor Kostick. They founded the 1916 Rebellion Walking Tour in 1996. As well as running the tours, the pair co-wrote The Easter Rising - A Guide to Dublin in 1916. Like the tour, the book goes through the main places of interest and details the events of the Rising. A fascinating read, and brilliantly illustrated, the book is the perfect complement to the tour. "The 1916 Rebellion Walking Tour is a true gem. Fascinating, intriguing and eye opening, even for those that have visited the capital before, or who have lived here all their lives" - Irish Times.

Lorcan has kindly agreed to conduct an exclusive 1916 Walking Tour for Cystic Fibrosis Ireland on Good Friday - 25th March 2016. The tour will be limited to 70 participants and booking is now open on our website: www.cfireland.ie. The cost of the walk is just €50 which includes a copy of Lorcan's book, with all proceeds from the walk going towards helping provide services for people with Cystic Fibrosis. Places are limited and will be allocated on a first come first served basis, so book now to ensure you do not miss out on this unique event.

April 9th: Annual Conference Raffle 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 and there are lots of great prizes to be won! A book of tickets will be sent to members with the conference pack in February. However, if you are in position to sell raffle books and would like to request more 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! Spectrum | Winter 2015

April 11th to April 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 our National Awareness Week: 1)

65 Roses Day - 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 €2. 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. We will be working with each of the branches to ensure that everyone can buy a Rose on 65 Roses Day, with this campaign supported on TV, Radio, Press and Social Media. 2)

65 Roses Challenge

We are calling on everyone to organise your own fundraising challenge to help raise funds to support PWCF during National Awareness Week. It can be any kind of fundraising event with a 65 theme, for example last year we had 65 Roses Tea Parties, 65 Taekwondo Bouts, 65 Hand Stands, 65 laps of the office, etc. It can be as simple or as challenging as you wish. If you are feeling brave, why not sign up for our 65 Roses Skydive Challenge. For further details visit our website: www.cfireland.ie, email Peter at pminchin@ cfireland.ie or call our office on 01 4922433 3)

65 Roses Text Donate

Support our 65 Roses Text Donate campaign and Text 65Roses to 50300 to donate €2 to Cystic Fibrosis Ireland. Please also send on the details to your friends. 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 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. You will experience dramatic views of Clew Bay, spectacular mountain ranges and pass through many picturesque villages along the way.

Registration details for this event will be available over the coming weeks on: www.challengethegreenway.com 18

April 24th: London Marathon It is almost impossible to secure a place for the Virgin Money London Marathon due to the popularity of this event. However if you register now to take part for CFI, we still have guaranteed places available. Please ensure you sign up as soon as possible as places are limited.

To find out more about how you can book a guaranteed place for the London Marathon, please e-mail Peter at pminchin@cfireland.ie or call our office on 01 496 2433.

May 12th to May 15th: Malin2Mizen Cycle For CF CFI are delighted to announce a National Cycle to raise funds to help PWCF. The Cycle will take place from Malin Head to Mizen Head over four days from Thursday 12th May to Sunday 15th May 2016. The event is being organised in conjunction with the CF branches across the country with each branch providing one cyclist who will raise â‚Ź5,000, with these funds shared between the branch and CFI to help support services for PWCF across the country.

It promises to be a fantastic event in terms of raising much needed funds and awareness of Cystic Fibrosis across the country. Full details will be available on our website over the coming weeks, including details of the routes each day. We plan to have a 50km cycle each day in addition to the option to participate in the full route.

The event is also open to the public, with registration for the event due to start in January. If you would like more information, please contact Bernie Priestley on 087 9224128 or e-mail Bernie at bpriestley1704@gmail.com.

June 6th: One in 1,000 SAVE THE DATE - Monday June 6th 2016!

The VHI Women's Mini Marathon takes place on Monday June 6th 2016. Although registration is not open yet, why not save the date in your diary.

Whether you a regular participant re-joining us in 2016 or a first timer looking to undertake new challenges, this event is for you. The 10km route caters for runners, joggers and walkers aged 14 and over. The largest female only fundraising event in Ireland, the Mini Marathon attracts 40,000 women annually.

The One in 1,000 Campaign for the Women's Mini Marathon was set up in Spectrum | Winter 2015

2010. The core idea behind the campaign was that one woman would recruit 10 participants to join her in the Mini Marathon, those 10 participants would recruit 10 more people each to join them making 100 participants who would then try to recruit 10 people each themselves making 1,000 participants for CFI. The Campaign has been hugely successful with over â‚Ź800,000 raised through the campaign since it began.

However, One in 1,000 is much more than a fundraising event, it is a community event that brings together supporters of PWCF from across the country. As past participants will tell you, the atmosphere on the day is fantastic and with a great team surrounding you, you don't feel the time or the kilometres go by. CFI provide the best of facilities for participants on the day including a cloakroom, refreshments and a base to come to before and after the 10km to soak up the atmosphere and celebrate your achievement.

So, the question is - Will you be One in 1,000 for CFI in 2016? We would love to have you take part! Rally your friends and family and enter as a team or take on the 10km by yourself and be part of Team CFI. 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

September 17th to Sepember 22nd: Paris2Nice CF Ireland are currently recruiting cyclists for the 2016 Paris2Nice Cycle. This is a trip of a lifetime and a life changing experience, as described here by Samantha O'Neill a participant for CFI in the Paris2Nice Cycle 2016.

Are you looking for a challenge? Paris 2 Nice 2016 may be for you - by Samantha O'Neill This time last year I had never fundraised nor did I own a bicycle. By September I had cycled along with seven other amateurs 720 kilometres from Paris 2 Nice and we raised a staggering â‚Ź108,707 for cystic fibrosis. A lifelong couch potato, I have never felt better and am now looking for the next challenge. The Paris 2 Nice charity cycle takes place annually in September. Approximately 75 cyclists set out from Paris and six days later having cycled through stunning countryside, vineyards and quaint French villages, mostly through back roads, feeling exhausted, exhilarated and virtuous we arrived in Nice. Each cyclist personally funds the entire cost of their own trip thereby ensuring that 100% of the funds raised go directly to their chosen charity, making it 20

easier to 'tap' friends, colleagues, family, acquaintances and even strangers for funds. Each participant is required to raise a minimum of â‚Ź3,000 as a prerequisite to participating in the trip. In January, this seemed a daunting prospect, however, once we started the generosity of so many prompted us to continue and our fundraising far exceeded our expectations. All eight members of the Cystic Fibrosis team were amateurs, some more so than others! As a novice, my last bike having been a Triumph 20, I turfed up on Sunday mornings to the organised training spins from mid-March and took it from there, gradually building up strength and endurance enabled me to complete the challenge. Help, advice, support was always to hand from the indefatigable Irene Breen of paris2nice.com and alumni. Three Things 1.

If I can do it ANYONE can.

If you do decide that Paris 2 Nice 2016 is for you START YOUR FUNDRAISING AND TRAINING EARLY.

You WILL have the trip of a lifetime and this time next year you will have a great sense of achievement.

If you are considering taking part in this event and would like to find out more then please register your interest with us in CFI. You can contact Peter by e-mail at pminchin@cfireland.ie or call our office on 01 496 2433. 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 The 22nd CFI International Walk will take place from October 1st to 8th 2016 exploring the wonders of Portugal. The eight day trip will feature walks every day, taking in the various sites and scenery that Portugal has to offer. The walks cater for various levels of fitness, so that each walker can take part at a pace they are comfortable with. The price of the walk is â‚Ź2,980 and this covers flights, bed & breakfast accommodation, dinners and guides.

We are delighted to announce that singer Mary Duff will continue in her role as Ambassador for our International Walk and take part again in the 2016 Walk.

Spectrum | Winter 2015

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. Still not convinced? Don't take our word for it, go to page 31 to read the report by the 'walk reporter' on the 2015 walk and discover all about the adventures of our walkers in Montenegro. The memories and experiences you come away with are priceless not to mention the huge contribution the walk makes each year in terms of funds raised to help PWCF! 21

November 6th: New York City Marathon The TCS New York City Marathon will take place on Sunday 6th November 2016. This is a really popular marathon and again it is almost impossible to secure a place 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 will have a limited number of guaranteed places for this event. We will have full details of the event available in January, but if you are interested in taking part we would advise you to let us know as we have already started to compile a list of CFI entrants for 2016. You can e-mail Peter at pminchin@cfireland.ie for more information.

All Year: Kilimanjaro CF Ireland facilitate treks to Kilimanjaro each year and there will be a number of treks running during 2016. 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 acclimitisation and maximises chances of a successful summit attempt. 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 Is a skydive on your bucket list? Why not make 2016 the year you tick it off? CFI plan to host a '65 Roses Skydive' in 2016 and get a group of 65 people who are willing to take the jump for CF. In order to make this event happen, we need anyone interested to let us know. If this is something you always wanted to do, then contact us now and get your friends involved too. We aim to confirm a date for this event in the New Year, so in the meantime spread the word and help get this off the ground!

Please contact Peter in the fundraising department at pminchin@cfireland. ie to register your interest.

Transition Year Fundraising Pack In September, CFI launched our ChariTY for CF Fundraising Pack aimed at helping educate Transition Year students about cystic fibrosis and providing them with advice on how to set up charity projects and undertake fundraising events / activities for PWCF. We are delighted with the response to the pack and have plans to extend the pack to primary and secondary schools in 2016 so watch this space!

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

If you are part of a Transition Year class or are involved with charity work within a school and are interested in getting involved with the ChariTY for CF programme, please contact Nuala on 01 496 2433 or email nmcauley@ cfireland.ie for more information.

It Makes Cents On October 28th 2015, the rounding scheme was introduced, aimed at reducing the number of one and two cent coins in circulation in Ireland. With the planned phasing out of 1 and 2 cent coins, CFI are asking you to please put your unwanted change into a Cystic Fibrosis Ireland Collection Box or drop it in to CF House. Every little helps and by donating your unwanted 1 and 2 cents to CFI, it will help us continue to provide services and support to people with cystic fibrosis in Ireland.

So, please empty out those change jars and give your unwanted coins to CFI!

If you would like to get a CFI collection box for your school or work place, please contact the fundraising team on 01 496 2433 or email fundraising@ cfireland.ie

Spectrum | Winter 2015

Challenges and Events 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.

SSE Airtricity Dublin Marathon The 2015 SSE Airtricity Dublin Marathon took place on Monday October 26th. Over 15,000 people took part in the Marathon and we were delighted to have a large team taking part in aid of CFI, including several people with CF! The weather on the day was a bit wet and wild, but the spirits of the participants were high as they took to the Dublin streets.

Huge congratulations to all who took part, in particular those who ran as part of Team CF. To complete the 26.2 mile journey takes a marathon amount of strength and commitment, but it is a fantastic achievement. Michael McDonald was one of participants. "I decided to do the Dublin City Marathon this year because my little granddaughter Sadhbh has Cystic Fibrosis and I decided to get sponsorship in aid of Cystic Fibrosis Ireland and raised â‚Ź2208. The money raised made it well worth the effort. I really enjoyed the experience and was proud to raise as much as I did."

A big thanks also to the CF Cheerleaders who came out on the day to cheer on the runners at various points along the route, no doubt your support was a much needed boost along the way.

If you are inspired to take on the Marathon Challenge for 2016, the SSE Airtricity Dublin Marathon takes place on Sunday October 30th 2016 - a change in day so you can take part, but still enjoy your bank holiday Monday!

Row a Round Ireland

raising campaign.

On September 26th, the crew of Row A Round Ireland returned to Bray 119 days after they departed from the same location rowing anti-clockwise around Ireland on their fundraising challenge for Cystic Fibrosis Ireland. The crew of 20 rowers and one brave dog battled the Irish Waters in sun, rain, wind and hail. Their arduous journey in aid of Cystic Fibrosis Ireland was a huge success with a final total of over €110,500 raised.

Wives, partners and friends were hauled in to host numerous coffee mornings, which raised substantial money due to the adventurous and unique nature of the project.

Congratulations to the team - both the rowers and the land crew and thanks to everyone involved for their hard work and support.

Thanks also to everyone who supported the crew along their way, both with donations and welcoming parties. Here is a summary of this epic voyage in the words of the skipper Ger Crowley.

Nama & Row a Round Ireland - by Ger Crowley It all began with an idle pledge back on Ger’s 60th birthday in January of this year “to Row a Round Ireland”. A team of 20 brave rowers was quickly assembled from two of Ger's sons, Niall and Fionn's friends and six of his own and training got underway in late February. The cause was easy as Ger's nephew has Cystic Fibrosis and we decided to raise funds specifically for patient post-transplant support within the CF network. A committee was formed and thus began a massive fund Spectrum | Winter 2015

Collections were organised on the promenades in Bray, Dun Laoghaire and Lahinch which also proved very lucrative. Thanks to the trojan work and ceaseless energy of the committee and many volunteers, a Pub Quiz and Golf Outing also yielded great funds. The generosity of the Irish people in general was very evident, in that any time a bucket was produced at various boat landings and launches, maritime clubs and pubs it was rapidly filled. As the finale to the project a gargantuan Homecoming Ball was arranged for 420 people in the Killiney Castle Hotel. This proved a fantastic success with raffle and an auction and a most warm, generous, giving atmosphere prevailing. The final count from all the events yielded an astounding €110,500. The boat for the project was Nama, a 15ft. open rowing skiff built 9 years previously, which we now adapted for ocean rowing by adding spray decks and special robust locking rowlocks from Australia. Training continued through the winter and spring months in 4 other sister craft of Nama that had been built with the local youth clubs the previous two winters and many thanks to them for their generosity in allowing us use their boats for training. By early summer our rowers were proficient at rowing, but were lacking in sea knowledge - perhaps no bad thing as they had no idea of the challenge that lay ahead of them. On the 30th May, Fionn and Ger had a very eventful start with a stiff southerly sailors' breeze behind us and absolutely no chance of a calm crew changeover at sea as we scurried to Howth at 6 or 7 knots surfing down the waves. 25

And so that Saturday night began the hospitality in Skerries which was repeated all around the country. Great progress was made thereafter with the early teams eating up the miles along the East and North coasts until we hit malicious Malin Head with its greyness and great swirling tides that gave you the feeling that if you got into one of those swirls you'd be orbited off the earth and never seen again. Once around we met the Malin Head Coastguard, who were both amused and astonished at our endeavours. Onto Donegal, its beautiful rugged coastline and beaches and its incredibly generous people. Here again we were treated to great hospitality and we teamed up with a local guest oarsman who accompanied us along some of the way We came face to face with the whole objective of our trip as we were welcomed into Portnoo by the Cahills whose son Harry has CF and into Kilcar by the Killybegs coastguard skipper whose daughter Rebecca also has CF. By now we had earned a reputation for eating and drinking our way around the country and we were known as drinkers with a rowing problem. Rowing proficiency had grown to such a level that the quote from Boys in The Boat springs to mind "Sometimes you will feel as if you have rowed right off the planet and are rowing out amongst the stars". Southbound now and good passage was made down the west coast once we got out of the clutches of Achill Sound. And so down past the Aran Islands and the Cliffs of Moher to Lahinch for the 'halfway round party' another 26

great event and a great meet up with the Clare branch of CF bringing home to us the importance of raising awareness. Testing times lay ahead of us around Loop Head and across the Shannon Estuary which didn't disappoint and on to the Kingdom and more great hospitality. From here to Derrynane, Nama's second home port and a tumultuous welcome. Very many thanks to all in Derrynane for such a warm homecoming. On around the Mizen and in to County Cork for more superb congenial nights from our cousins, the Cork branch of the Crowleys. Eastwards out of Cork in what now seemed relatively calm conditions for a hardened bunch of rowers. Around Carnsore Point and northbound once again on our final home legs. The weather was still to play its part in our fate and our first attempt to round Wicklow Head was thwarted and we had to do an unscheduled landing on Blainroe Beach. Our second attempt some days later was successful and much more pleasant and we were escorted across Wicklow Bay by Wicklow Lifeboat and her merry crew. All too quickly this marvellous voyage was drawing to an end and we began our last homeward leg from Greystones accompanied by Nama's 4 sister skiffs and many of the rowers to an astounding and triumphant welcome on Bray beach. What a voyage, what a team and what a great cause. People said we went the wrong way round. I certainly refute that!

A Fisherman in Donegal said he wouldn't put to sea in that coffin - a really inspiring comment as you set out into the North Atlantic! A bunch of pilots at Newcastle airstrip said they'd sooner eat the boat than row around Ireland in it! We must always remember that you never conquer the sea. You never challenge the sea. We were lucky that the sea let us circumnavigate this great island of ours. The fantastic hospitality, generosity and warm welcome we received on our voyage is a fitting tribute to how good and well spirited a people we are. It was our honour to raise awareness in such a meaningful way for Cystic Fibrosis. We are the lucky, gifted and privileged ones that we were able to undertake such a physical challenge for those who live with such an uncertain and often brief future. Those who are inflicted with CF and bear it with such courage and in such a quiet and discreet manner are inspirational people - their bravery far outweighs ours.

Front Cover: Brian Doyle CF Truck

Spectrum | Winter 2015

ould like say a

thank you to Doyle

t o big

Brian from

Bagenalstown who works in the haulage industry and recently organised to get a lorry cover printed in support of Cysticw Fibrosis. Brianâ€™s son Barry is a PWCF and Brian has been a great supporter of CF Ireland for many years now. CFI

would also like to t h a n k Dennison Trailers for donating the covers,

Paris2Nice

We would like to offer a huge thank you to Samantha O’Neill and the other members of the Paris2Nice Team 2015 (Des O'Neill, Ted O'Sullivan, Denise Browne, Charlie Hanrahan, Hugh Mc Gauran, Mark Carthy, Nick Kilcoyne) who departed from Paris on September 18th and arrived in Nice on September 24th raising an amazing €108,707 to help support PWCF in Ireland. We would also like to thank the sponsors of this team which included Allcare Pharmacy, Universal Products and Label Craft.

Rome2Nice A huge thank you to Dr Barry Jones and his team who cycled from Rome, departing on August 29th and arriving in Nice on September 5th. We would also like to thank everyone who helped the team in their fundraising drive, including the Jefferson Smurfit Foundation for their generous donation and Michael Fetherston who organised a Golf Classic at Luttrellstown Golf Club. The total amount raised was over €80,000 with the last of the monies still coming in.

Montenegro Walk The 21st International Walk for Cystic Fibrosis took place from September 27th to October 4th. It was an early start for the 32 walkers who took part as they met up in Dublin Airport at 5am, but there were no signs of tiredness as the group checked in and set off excitedly for their fundraising walk. For a full report from our walk reporter go to page 31.

We were delighted to have Walk Ambassador Mary Duff take part in the walk for the second year in a row, fresh from the launch of her charity single for CFI, Breathe With Me - which is available for download from http://www.maryduffmusic.com/shop/

A huge thank you to all who took part in the 2015 Paddy Kierans Memorial Walk and fundraised for Cystic Fibrosis Ireland. The CFI International Walk 2016 in memory of Ita Minogue will take place in Portugal from October 1st - 8th. For further information or to request a booking form contact Nuala on 01 496 2433 or email nmcauley@cfireland.ie 28

Santa Climb Croagh Patrick could have been mistaken for the North Pole on November 21st with snow on the mountain top, not to mention Santa Claus!

Christmas hadn't come early, it was all part of the Santa Climb Fundraiser in aid of Cystic Fibrosis Ireland, the Bubblegum Club and Mayo Mountain Rescue. Organised by GDC Construction, the event saw over 100 people in Santa suits, climb Croagh Patrick in a unique fundraising challenge.

As anyone who has climbed Croagh Patrick will know, it can be a tiring experience - add to that, the fact that our Santas experienced all four seasons in a couple of hours. Over €35,000 was raised from this cracker of a fundraising event! A huge thank you to everyone who took part and indeed everyone who sponsored Santa, no doubt you will all be on the nice list this Christmas!

Special thanks to Margaret Healy for organising the event and also to Mick Daly (parent of a PWCF) and his company, GDC Construction, who covered all the expenses including Santa suits, print work and refreshments. Finally, another thank you goes to Vinny Coyle and Anthony Giblin, Mick's business partners from GDC Construction, thank you for your contribution.

Santa may only come once a year, but the contribution made from these Santas will be felt all year round.

Darragh Kenny - Benefit night for Beds for Beaumont campaign CFI would like to say a big thank you to Darragh Kenny from Blessington who organised a Benefit Night in aid of the CF Beds for Beaumont campaign and presented a cheque for €608.73 to Peter Minchin from CFI along with the CF Multi-Disciplinary Team at Beaumont Hospital.

CBF4CF Kettlebell Challenge Congratulations and well done to all those who took part in the CBF4CF Kettlebell Swingathon which took place in Navan on Saturday 3rd October. A fantastic total of €17,585 was raised from the event. Special thanks to Niamh Gaynor, whose son Joe is a PWCF, for all her hard work in helping to organise this and to Colm Brady and Eamon Brady from Complete Body Fitness who helped to make this happen along with all their members.

Spectrum | Winter 2015

Malahide Lions Club Cookery night with Neven Maguire Thank You to Malahide Lions Club who recently held a Charity Cookery Demonstration Night with celebrity chef Neven Maguire. The proceeds from the night were kindly split between CF Ireland who received €5,000 and St. Michael's House. Well done to all involved.

Clare Meleady - Halloween Bash Thank You to Clare Meleady who organised a Halloween Fancy Dress Bash on October 31st in memory of her brother Paul Meleady (RIP). The event took place in Donaghmore GAA Club and was a great success. Pictured is Clare Meleady handing over a cheque for €3,655 to CEO of CF Ireland, Philip Watt.

Walk on Inis Oirr in memory of Kathleen Morris CFI would like to say thank you to Keith Morris and his family and friends who earlier this year organised a walk on Inis Oirr in memory of Kathleen Morris (RIP). A lovely day was had by all and a fantastic total of €7,964.50 was raised which was split between CF Ireland and the CF Galway Hospital Project. Pictured at the cheque presentation were: Front row L to R: Lily & Kaitlin Morris. Back row L to R: Councillor Mike Cubbard, Keith Morris, James Morris, Clare Sullivan (Secretary CF Galway), Margaret Fitzgerald, Nicole Walsh and Johnny Cubbard

10th Meath Skryne Scout Group Thank you to the 10th Meath Skryne Scout Group who recently presented a cheque for €603 to CFI as proceeds from their fundraising Road Hike. Well done to all involved, your support is greatly appreciated.

Doocey's Dart Tournament Thanks to all involved in the darts tournament which was held recently in Doocey's Bar in Ballymacarbry, Co. Waterford. The proceeds from the night were presented to Michael Hickey from the Tipperary branch of CF Ireland and will be put towards the CF Unit in Waterford Regional Hospital.

Charitable Donation - UniCredit Bank p.l.c. We would like to say a huge thank you to the Management Board and employees of UniCredit Bank Ireland p.l.c. who selected Cystic Fibrosis Ireland to receive a donation of â‚Ź12,500 out of their 2015 Charitable Donations programme.

We were delighted to hear that part of the selection process for this donation included a review of Cystic Fibrosis by an independent company called Altruism who score charities' transparency based on projects completed in the past, projects plans and published financial details. CFI scored 10 out of 10 for our transparency which ensured that UniCredit Bank p.l.c. selected us for this generous donation.

This donation will be a great help in terms of funding support and services for PWCF in 2016.

Stories CFI International Fundraising Walk 2015 in Montenegro "Were we in paradise or on the moon?" This year once again it befell on all the walkers to be up bright eyed and bushy tailed for an early departure on Sunday the 27th September.

This again was presented by quiz person supreme Claire Barrett assisted by Breda Cahill and with great excitement again, featured Jacqueline Redmond on the winning team. We were up again the next day for an earlier start which took us to National Park Durmitor, following a drive along the Tara River and break at the Djurdjevica Bridge. Here the adventurous amongst the group really stood up or perhaps I mean zipped up. Yes it was a thrilling experience for a large number in the group to experience the Zipline looking way down over the gorge with the river in full flow below. It only takes a few minutes but it was exhilarating. We went onward to Zabljak for lunch followed by our walk at the Black Lake. On this night, after dinner in the hotel we had the most important night of the week when the honorary walk award was presented. This year it went to Jacinta O'Rourke, congratulations again, a very worthy winner! On the Wednesday we transferred to our new base in Budva following a very interesting historical visit to Cetinje, the cultural capital of Montenegro. This included a visit to the former palace of King Nikola. On Thursday we visited Skadar Lake, which is a vast freshwater lake straddling the borders of Albania and Montenegro. That night we were invited to the Irish bar by an Irish lady who emigrated to Montenegro and apart from the hospitality we were delighted to receive a donation towards our fundraising. Friday took us to Ulcinj which is a large sandy beach boasting 12 kilometres in length, via a boat journey along River Bojana. These days as all days provided us with most memorable walks. On Saturday the final day we visited Boka Bay. At Perast we visited the small island called Our Lady of the Rock which was man-made, by the constant heaping up of stones over the centuries, and features a votive

Our first day was long and we were relieved to have an enjoyable lunch break in Budva en route to Kolassin which is a northern city founded by the Turks in the 17th century. It was a long day and after our evening meal most people were fit for their beds in preparation for what was to come. The next morning we headed to the national park Biogradska Gora and experienced a most magnificent walk around the lake. Yes indeed, welcome to the jewel of the Mediterranean. It was a great day and if the excitement was not enough, all were anxiously looking forward to the extra curricular activity, this night being the second annual quiz. Spectrum | Winter 2015

shrine for sailors. From Perast we walked along the majestic bay coastline to the old town of Kotor. Here we had free time in the beautiful old city for lunch and absorbed the relaxing atmosphere. It was all the more special with an impromptu concert given by Mary Duff.

This was appreciated by all, but especially by some Canadians on shore from enjoying a cruise. They were most interested in our charity walk and cause and we were delighted to receive a kind donation from them. We had our gala presentation in the old town of Budva that night and again Mary did the honours with her magnificent singing. On Sunday the 4th October, we arrived back in Dublin on schedule at 3pm. It was a magnificent week full of beautiful walks along lakes, road, and through beautiful woods marshalled by the rocky environment. The most striking thing about Montenegro as our chosen destination is that even though it is only 13,800 square miles i.e. less than half the size of Ireland, it was so extra challenging because our bus journeys took a lot longer than one would have anticipated due to the very narrow mountain winding rocky roads. It was beautiful, it was so successful and it generated badly needed funds, in excess of â‚Ź90,000. Indeed it was great, but as George Bernard Shaw said, albeit a hundred years ago and no doubt it has changed a lot since then: "Am I in paradise or on the moon?" I think Montenegro is a lot more paradise. Please join us on our 2016 Walk in Portugal, which will be held in memory of former walker Ita Minogue! The Walk Reporter

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Spectrum | Winter 2015

You’re Amazing. Let’s keep you that way!

FUNDRAISING EVENTS CALENDAR 2016 March 1916 Walk, Good Friday - March 25th. April Annual Conference Raffle - April 9th 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 London Marathon - April 24th Challenge The Greenway - April 16th May

Malin2Mizen Cycle - May 12th to May 15th

June One in 1000 (VHI Women's Mini Marathon) - Bank Holiday Monday June 6th Sept Paris2Nice Cycle. September 17th to September 22nd Oct CFI International Walk in memory of Ita Minogue. Oct 1st to 8th. Nov New York Marathon - Nov 6th All Year Kiliminjaro 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

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 34 Charity: CHY6350

ISSN 2009-4132