Spectrum Summer 2015

Spectrum

Summer / 2015

Ins ide this issue: È Hospital Development Update È CFI Annual Conference 2015 È Research Update È Living with CF, Nancy O'Neill È World War 1 - Historic Walk Spectrum | Summer 2015

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Foreword Welcome to the summer issue of Spectrum and we extend a warm welcome to the new editor of Spectrum, Samantha Byrne, who takes over from Alica May. We take this opportunity to thank Alica for her significant contribution to the work of CFI over the past 5 years including all her work in relation to grants, services and communications, it has been much appreciated. Alica has recently secured a new job in UCD and we wish her all the best in her new role.

This issue of Spectrum seeks to update you on new therapies and of course our building projects around the country. CFI working with our branches and local partners and through lobbying have made significant improvements since 2012 in the following hospitals: Crumlin Children's Hospital; St Vincent's University Hospital; Waterford Hospital; University Hospital Galway; Mayo General Hospital; University Hospital Limerick; Drogheda Hospital and Cavan General Hospital with more projects 'in the pipeline'. Around â‚Ź9m in charitable funding has been invested during this period- marking a huge effort by everyone who is concerned with CF in Ireland.

It is now up to government to ensure that all CF units in Ireland are adequately staffed. For example thanks to the combined efforts of TLC4CF/CFI and with fantastic support from JP McManus, â‚Ź5.2m has been invested in building the new adult CF unit in Limerick hospital. This building is due to be handed over to the hospital from the builders in mid July. We have been given assurances the unit will be opened on a phased basis once it has been deep cleaned and equipped and we will continue to monitor developments closely to ensure this happens.

Philip Watt (CEO) Samantha Byrne (Editor) Front Cover: Padraig Fay and Mia O'Neill

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CONTENTS Latest News | 2Ñ3

Annual Conference | 9Ñ10

È Hospital Developments È Opening of the National Office for Rare Diseases È Access to New Therapies È ORKAMBI È Newborn Screening Update È VAT Issue

È Conference 2015 Roundup

Research | 4Ñ8 È CFRI Awarded Vertex innovation Award È Information Videos Update È Investigation of Parent's Information needs for their Child's Transition to Adult Healthcare Services È Research Fellowship results È UK Gene Therapy Trial Results published È Update on ORKAMBI

Information | 11Ñ12 È Exercise Grant È Medical ID Cards

Guest Feature | 13Ñ14 È Living with CF - Nancy O'Neill

Spotlight | 15Ñ16 È Life with a CF Parent - Christina Kenny

Fundraising | 17Ñ27 È Challenges and Events È Thank you È World War One Walk

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

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Latest News Hospital Developments Beaumont Hospital As you know, due to the crisis in understaffing, CFI and local charity CF Hopesource have come together to fund a CF Registrar for one year at a total cost of â‚Ź100,000 in Beaumont. This position was advertised by the hospital in February/March but has been unsuccessful in attracting a qualified candidate. We hope to have positive news on the recruitment of a CF Registrar and Clinical nurse specialist shortly.

The CF Gym in the outpatient unit has been out of action for the last couple of weeks due to a burst pipe in the floor above, where work is being undertaken to improve transplant rooms. We understand that the CF gym will be back in action shortly.

Cavan General Hospital CFI national office and the Cavan Branch have been successful in securing a â‚Ź100,000 lottery grant for the upgrade and reconfiguration of the paediatric services in Cavan General Hospital, in particular 2 paediatric inpatient rooms. This means this project can now commence. Many thanks to the continuing work of the Cavan Branch without whom this project would not have been possible.

Limerick Hospital The handover of the Leben building to the hospital, including the 2 CF floors will take place in mid July. The delay in handover may slow the orginal preopening schedule which was flagged in the Spring issue of Spectrum (below)

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Cork University Paediatric

Mayo General Hospital

Waterford Hospital

The paediatric unit is presently decanted to assist in improvements to paediatric services in CUH. The decanted facilities we hear are a significant improvement on the existing facility, which will give an indication of the challenge to improve CF paediatric services in CUH.

A certificate of substantial completion of the project has now been received. Many thanks to Tomas Thompson and Caroline Heffernan on their continuing work on this project which as acknowledged at the annual conference and of course to the many others we have previously acknowledged in respect of this project.

CFI has received a very nice letter from the CEO of Waterford Hospital, Richard Dooley, thanking CFI/CFI Waterford Branch for our contribution to the 4 room CF inpatient development that has recently opened and seeking further funding for an additional project.

This will be discussed with the Hospital/Waterford Branch and the Board of CFI

Opening of the National Office for Rare Diseases The National Office for Rare Diseases was opened in May 2015 by the Minister for Health. CEO of CFI, Philip Watt gave the speech on behalf of the range of patient groups involved in developing this office.

Access to New Therapies The role of CFI in advocating for Kalydeco was once again recognised at EU level. In early June 2015 the CEO of CFI and Research Officer of CFI provided an input to the Joint CFE/ECFS conference in Brussels.

ORKAMBI In the United States, the Food and Drug Administration (FDA) approved ORKAMBI (lumacaftor/ivacaftor) for use in people with cystic fibrosis (CF) ages 12 and older who have two copies of the F508del mutation in the CFTR gene. For more information see detailed article in the 'Research' section of this edition of Spectrum.

Newborn Screening Update CFI participated in a round table on newborn screening aimed at medical staff on 28th June in the Ashling Hotel. The addition of CF to newborn screening in 2011 has been very successful and should eliminate the late diagnosis of those born in Ireland since July 2011. The incidence of CF among those screened since 2011 is less than expected because almost one in 5 children in Ireland is born to a non-Irish parent. CFI has assisted in funding a research project on screening, the results of which will be shortly available.

VAT Issue CFI, campaigning on the non-refundable VAT paid on capital projects by charities, has contributed to the establishment of a Revenue working group that will report back to Government before the next budget. CFI will be making a submission to this working Group. Unfortunately it is likely that this change (if any) will not be retrospective, although we will challenge this in our submission.

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Research Vertex Innovation Award for the CF Registry of Ireland to develop a Registry Patient Portal At the 2015 European CF Society conference in Brussels, the Cystic Fibrosis Registry of Ireland (CFRI) was announced as a recipient of research funding from the Vertex Innovation Award programme. This competitive, panEuropean funding scheme is designed to support clinical research in CF that seeks to bring benefit to the patient. The lead investigator on the project, Dr Abi Jackson, accepted the award on behalf of the CFRI, and study investigators from St Vincent's University Hospital, the UCD School of Public Health, Physiotherapy and Sport Science, the UCD School of Business and the European CF Patient Registry.

The research programme is entitled 'Evaluating outcomes patients with access to their health records: a randomised control trial of a Registry Patient Portal'. The project involves the development of a Registry Patient Portal, which is a secure website and App that enables individual registry patients to view their own CFRI health record. In Ireland, the CFRI collects clinical information from hospital records for patients who agree to this, by signing a registry consent form (93% of the CF population in Ireland to date). The Irish CF registry is one of the most detailed CF registries, capturing over 400 pieces of information per patient per year.

in European CF

With a Registry Patient Portal, the idea is that a patient would be able to view relevant registry information such as hospitalisation, medication, lung function, growth, microbiology, etc. The study investigators will be monitoring whether patients with access to their registry health record are better able to manage their condition, and in particular will look at changes in clinical measures and patient reports of wellbeing.

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This is a Europe-wide study, and patients in Denmark and Slovenia will be involved. Like Ireland, Denmark and Slovenia participate in the European CF Registry, which offers a universal data-collection platform, 'ECFSTracker', to all participating countries. ECFSTracker is custom-designed for the collection of CF patient data. The Registry Patient Portal technology will be designed by the research team to be compatible with this European software platform.

This is a two-year project, and is due to commence in early 2016. CFRI patients meeting study criteria will be invited to participate by their CF care team, who will work together with the CFRI study team.

Information Videos in Development Cystic Fibrosis Ireland are delighted that the first two of our information video series have been released and are available to be viewed right now!

The first video, which aims to support new parents following the diagnosis of their child, has reached over of 43,500 people and was viewed 13,838 times on Facebook alone. The video features parents speaking about how they coped after receiving news of the diagnosis, reflecting back on how far they have come since, and how CF is now just a part of their daily routine.

The video also features adults with CF who speak about the advances that have been made since they were diagnosed, and how living with CF has not prevented them from realising their dreams. We hope that it will provide support and comfort to you, if your child has recently been diagnosed with Cystic Fibrosis.

The second video focuses on the importance of exercise in the management of Cystic Fibrosis. We meet some incredibly inspirational people with CF, who share their stories and highlight the varieties of exercise they engage in to keep fit and healthy. The video has also been incredibly popular, having reached 38,000 people from across the globe and has been viewed 13,039 times on Facebook.

We would like to say a huge thank you to everyone who has participated in this project so far - the importance of sharing experiences and stories cannot be underestimated. We are continuing to develop more insightful, inspiring and informative videos and look forward to sharing our up-coming videos with you all!

To have a look at these videos, visit Cystic Fibrosis Ireland's Youtube channel at this link https://www.youtube.com/user/CFAssociationIreland.

We would also like to acknowledge, and thank our sponsors: Novartis Pharmaceuticals & LinkedIn.

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Investigation of Parent's Information Needs for their Child's Transitions to Adult Healthcare Services Cystic Fibrosis Ireland, in partnership with Trinity College Dublin, are delighted to announce that we have successfully received a grant from the Irish Research Council to follow on from the previously funded project TRYCIS - Transition from Child to Adult Care for Young People with Chronic Illness: a study of policies, process, patients, parents and healthcare professional's perspectives.

On completion of this research project, a number of recommendations and resources have been developed to support the young person transitioning, and can be readily accessed at www.steppingup.ie. However, this project also revealed that this time of transition can be a difficult time for the parents of young people with CF - something which was echoed at our 2014 Annual Conference workshop on transitioning in care.

In response to the initial research findings, the School of Nursing and Midwifery Studies, Trinity College Dublin, in partnership with CFI, are now leading a study which aims to explore the information needs of parents of children with CF regarding their transition from child to adult services. The study will invite parents of people with CF, aged between 13-25 years to complete an online survey, targeting both parents of PWCF who have gone through the transition process, as well as those who are yet to do so.

Once the questionnaire is piloted and ready for data collection, CFI will email a copy of the survey to our members and also make it available online for eligible participants. The research team from TCD do not have access to your email or any personal details, therefore taking part in this survey is completely anonymous.

What will happen with the results?

The results will be summarised in a report for the funders (Irish Research Council) and CFI, and may be published in an article and at the annual CFI conference. The results will provide information about parents' information needs around the transition process which will help inform the production of information resources (e.g. advice, guidelines and helpful tips) that will be made available on the CFI website.

Cystic Fibrosis Ireland - Irish Thoracic Society - Gilead Research Fellowship We are pleased to announce that the recipient of Cystic Fibrosis Ireland Irish Thoracic Society - Gilead Research Fellowship is Dr Suzanne Carter, St Vincent's University Hospital. Her research project is titled 'Understanding Acute Pulmonary Exacerbations in Cystic Fibrosis'. The primary hypothesis of this project is that there are clinical, physiologic, and serum markers that 6

can be identified in CF patients that will accurately identify a pulmonary exacerbation subtype and that these markers will predict medium and longterm response to IV antibiotic treatment.

We wish to congratulate Dr Carter on her successful application and wish her every success throughout the project.

UK Gene therapy trial results published The results of an on-going trial into the potential use of gene therapy to improve clinical outcomes for people with CF have been published. The trial, which was primarily funded by the Cystic Fibrosis Trust in the UK, was conducted by the Gene Therapy Consortium (GTC) and shows 'promising yet modest' results. Scientist say there is more work to be done but believe they are on track to deliver a therapy that can make a meaningful difference to patients' lives.

Professor Eric Alton, from Imperial College London, who co-ordinated the trial, said: "there has been a significant benefit compared with placebo in cystic fibrosis patients. If a bigger study shows big benefits then it's feasible that we'll be able to offer this treatment to patients by the end of the decade."

The trial, conducted in London and Edinburgh, compared the effects of inhaled gene therapy and a placebo treatment on 136 patients with CF aged 12 and over. Over the course of a year, patients were given 12 treatments at monthly intervals.

The results, published in The Lancet Respiratory Medicine journal, showed that at the end of the trial lung function was 3.7% better in patients who received the "active" treatment. Participants with the worst lung function at the start of the study experienced a much greater 6.4% gain compared with those in the placebo group. It is important to note that these improvements and effects were inconsistent across the 62 patients in receipt of 'active' treatment.

The scientists are now seeking funding for the bigger "improved liposome" trial that could cost tens of millions of pounds, and would hopefully pave the way for rolling out the treatment. Professor Alton has said;

"We hope to carry out follow-up studies looking at higher, more frequent doses, combined with other treatments, and better meth ods for delivering the DNA into cells."

Speaking to the BBC, Professor Stuart Elborn of Queen's University Belfast has said "it is too soon to proceed with larger Phase-three trials" and Spectrum | Summer 2015

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he called for more small-scale tests to see if a larger dose would be more effective.

Philip Watt CEO of CFI stated "These are the results of a Phase 2 Trial which seek to prove a concept. It will take a great deal of funding and further trials at phase 2 and phase 3 level to bring this research through to a drug that can impact on people with CF. Nevertheless it is a promising development as gene therapy might impact on everyone with CF and not just those with a specific gene alteration. They will have to do further work on drug dosage and combination trials with proven CF drugs."

Publication of the Orkambi clinical trial data in The New England Journal of Medicine On 17th of May 2015, the NEJM published results on a new treatment combining ivacaftor (Kalydeco) with another compound called lumacaftor.

This combination is now known as Orkambi and it targets the underlying cause of the CF in people with two copies of the F508del mutation, which represents 56.5% (654) people with CF in Ireland . The trial studied the effects of Orkambi on people with CF aged 12 and over.

Published results show a significant increase in FEV1 in patients of between 2.6 - 4% (p<0.001). Further analysis also revealed that the rate of pulmonary exacerbations was 30 to 39% lower in patients who were in receipt of the combination therapy compared to those who received placebo. The rate of events leading to hospitalisation or the use of intravenous antibiotics was also reduced for people being treated with the combination therapy.

On the 3rd of July Orkambi was approved in the United States by the Food and Drug Administration (FDA). The drug is currently being considered for licencing by the European Medicines Agency, with a decision expected in the autumn. If there is a positive decision from the EMA then individual countries have to consider reimbursement of Orkambi. In Ireland, the NCPE/HSE CPU unit will carry out assessments. It will likely undergo a Health Technology Assessment (HTA) in Ireland before they make a decision to a) approve the drug b) reject the drug or c) reject the drug on cost grounds but leaving the door open for price negotiation.

CFI will continue to keep our members updated on the progress of this and other potential therapies developed for use in CF care.

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Conference '15 Annual Conference On Friday 10th April 2015, Minister for Finance Michael Noonan TD, opened the CFI Annual Conference held on the banks of the River Shannon in the Limerick Strand Hotel. Many thanks to everyone who joined us there, with special thanks to TLC4CF, especially Erin Sugrue for her cooperation in helping us make it such an enjoyable weekend for all.

CFI Awards CFI Special recognition Awards were presented to Pat Divilly, JP McManus Pro Am & Barry Jones for Outstanding Fundraising. Awards were also presented to Cathy Shortt & Geraldine Leen for Outstanding Services for Cystic Fibrosis and the Special Lifetime Achievement Award was presented to Dr Michael O'Mahony, Consultant Paediatrician, University Hospital Limerick.

Speakers Throughout Saturday, delegates heard from a selection of motivational and inspirational speakers including Keynote Speaker, Professor Peadar Noone, University of North Carolina Hospital. Professor Noone's Speech entitled; 'New Therapies for Cystic Fibrosis - What is Going to Change?' gave a positive insight into gene therapy advances throughout the 90's to date. Rosie Fitzgerald PWCF, who had a lung transplant in 2006, also gave a talk about how well life is with her new lungs and her job in London working as web design researcher for the BBC. Presentations and talks that took place in the Main Conference Room are available on our website should you wish to review or watch for the first time: https://www.cfireland.ie/cfi-services/cf-ireland-annual-conference.

Workshops Summary notes are available online for the following workshops â&#x20AC;˘ Physiotherapy Let's Get Moving: Strengthening and Stretching Exercise for the Thoracic Spine, Irene Maguire, CF Physiotherapist, UHG â&#x20AC;˘ Nutrition (Practical Advice to Achieving Nutritional Goals in CF) Marie Roddy, CF Dietician, AMNCH & Zoe Woodward, CF Parent If you have any feedback from this year's conference, please email info@cfirealnd.ie or call 01 4962433 Save the Date!

CFI Annual Conference will take place from the 8th -10th April 2016.

Keep it free!

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Information Exercise Grant Scheme Round 2 of the Exercise Grant Scheme will open for applications from 7th September to 9th October next.

â&#x20AC;˘ Application Form: The Application Form must be completed, signed and returned to CFI by the deadline stated. The Parent/Guardian must sign on behalf of individuals under 16 years of age. The Exercise Grant 2015 Policy & Guidelines should be read thoroughly before completing the Application Form. The Application Form and Policy & Guidelines are available for download under the 'Grants and Support Services' section of www.cfireland.ie, or can be requested directly by contacting the National Office from from 28th August 2015

â&#x20AC;˘ We aim to issue successful applicants with the grant within 3 weeks. Should you wish to find out whether you have been successful in securing the grant before this period, please call us in the National Office.

Unsuccessful applicants will also be contacted within two weeks of receipt of an application.

Good Luck Alica May on your new role in UCD!

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PWCF facebook page Irish only People with Cystic Fibrosis (PWCF) closed Facebook group would like to invite all PWCF over the age of 16 years to join our closed community. The group is a friendly place where you can meet (virtually) and chat to others with CF around Ireland, discuss medications, physiotherapy, ask questions, etc. There is also a PWCF fitness group where PWCF share fitness and nutrition tips and give encouragement to each other. The fitness page is for every fitness level from walking the dog to running marathons, lifting weights, etc. It is not about competing against each other but encouraging each other to do your very best!

Medical ID Cards Every member of Cystic Fibrosis Ireland is entitled to a CFI medical ID card.

A Medical Identification Card is a means by which a person with CF can provide pertinent medical information to medical providers and other relevant groups. Several of our members have reported difficulties when trying to use facilities such as lifts or disabled parking spaces.

All medical entities, that is, doctors, hospitals and ambulance services require information regarding a person's health status to provide the best possible care. These cards have been designed to address the most important medical issues needed in an emergency. All the information is in one place.Some of the information that can be found on the card includes personal information, emergency contacts, primary care physician, hospital, medical conditions and allergies. The card will have your photograph.

Contact Sam Byrne at 1890 311211 or sbyrne@cfireland.ie

Our Lady's Children's Hospital, Crumlin A guide through your child's hospitalisation Cystic Fibrosis Ireland is proud to have funded a booklet in partnership with St. Michael's Ward, Our Lady's Children's Hospital. The booklet guides parents and children through their hospitalisation on areas such as infection control, treatment, nebulisers, physiotherapy, investigations, nutrition and personalised care.

This excellent booklet was created by Emma Cooke (Clinical Nurse Facilitator) and Warren O'Brien (Staff Nurse) and funded by Cyctic Fibrosis Ireland.

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Cystic Fibrosis Ireland Medical Identification Card

Name: Joe Bloggs DOB: 15/10/2012 Address: 24 Lower Rathmines Rd Dublin 6 Tel/Mob: 086 8256 214 This individual has Cystic Fibrosis.

Signature

24 Lower Rathmines Road, Rathmines, Dublin 6 t: +353 1 496 2433 | f: +353 1 496 2201 | w: www.cfireland.ie

Living with CF

By Nancy O'Neill, Age 19, County Wicklow

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" I think it's really important to be optimistic and not let CF get in the way of life"

s most of the people reading this will know, be it from their own experience like myself, or from caring for other people with CF, living with Cystic Fibrosis is time consuming and can be very difficult, both physically and psychologically. When I was younger, my main concern about my CF was ensuring that nobody but my close friends knew I had it; not that most young teenagers would have known what CF was, which I quickly discovered when I did reveal the 'big secret'. It's not that I was ashamed or embarrassed about my CF, I just didn't want people to think of me any differently for it; to the extent that in my first week of secondary school I remember I had a dream where I was sitting in class and I was doing my nebuliser and everyone was staring at me and whispering, wondering what the hell I was doing. Thankfully that stage passed and those people staring became my best friends and I would be completely lost without them. By 5th and 6th year I was much more comfortable discussing my condition and in school the girls would laugh and say that they could hear me before they could see me! Who knew I had such a distinctive cough? In June, 14 of us ran the VHI Women's Mini Marathon for CF and were able to surpass our target of â&#x201A;Ź6,500! I managed to run the 10k in exactly an hour and forty seconds and so then I was sure that all those runs in the rain beforehand had been worth it. I am hugely aware of the fact that running 10k in an hour is not even a possibility for many people with CF and so I know that I am extremely lucky.

As I got older I began to see the seriousness of the disease more and more. Hearing about other people with CF who were much sicker than I was really scared me and still does to a certain extent. I found myself wondering when my health would start to deteriorate, as it inevitably should taking CF life expectancies and all those other numbers into account; hence, dropping a few percent in my lung function for example scared me a lot more than it would have before. But now I try to maintain the mind set that statistics are only numbers and I try not to think about what may or may not happen Spectrum | Summer 2015

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in the future, because no one can really tell. I think it's really important to be optimistic and not let CF get in the way of life. I know that sometimes it's not as simple as that, but for anyone in the position where their health is stable and manageable I think it's so important not to get caught up in all the numbers and stories.

For me, the most difficult thing about CF is definitely the uncertainty of the future. Therefore I find that I tend not to ask about an issue until it actually arises; the same goes for new treatments. When they become available to me that will be amazing, but until that time comes I don't want to be hanging around waiting for something that could take years to achieve, so I try to just deal with what I've got and hope that it's enough to keep me well for the time being.

I suppose I've always been quite an independent person and so the idea of living by myself abroad didn't really faze me too much. All of this is just to say that CF is what you make of it; you can let it control you or you can face it head on. There may come a time when I will not be able to travel as much as I do now, or run as much or go out as much, but if and when that time comes, I'll cross that bridge when I come to it. Besides, there's no point in planning or worrying too much now because realistically my mum is doing enough of that for the both of us, though she won't admit it! I know that I wouldn't be as well as I am without her constant surveillance and although I spend most of my time telling her I'm fine it's probably a good thing to have someone there who's always on the look out for any changes from my baseline. On a side note, herself and my dad are doing the Paris to Nice cycle in September for CF and I am so proud of their progress so far. They're hoping to raise â&#x201A;Ź100,000 with their other teammates. So far they've raised over â&#x201A;Ź50,000, but still have a long way to go and so if anyone reading this is in a position to offer a donation of any size or wants to hear more about their project, they can do so by searching Sam 4 CFI on www.justgiving.com and we would really appreciate it.

I am proud to say that I have never let my illness hold me back from doing anything. I love travelling and have had the opportunity to visit so many places from New York to Beijing and loads in between. I am currently in the middle of my undergraduate degree in politics in a university in France and I have had no problems at all since I've been there. The university, like my secondary school in Dublin before have been more than accommodating, I am even exempt from paying the university's fees because of CF Aside from my mum and dad, I'd like to give Orlagh a which was definitely a pleasant surprise for my parents. special mention just for being there to listen from day 1, thanks Orls xx (Every cloud has a silver lining!) When I come home for term holidays I stock up in the chemist for the next six weeks or so and go back over to France. In a few weeks I'm heading off to Europe to go interrailing with my friends from school to Amsterdam, Berlin, Prague, Krakow, Budapest, Munich, Lake Bled and Croatia. To be honest, my main concern is the non-existing bank balance I'll have when I come home as opposed to anything CF related.

I must say however that the only reason that I am able to do all of this is because my parents have kept me so well, and have shown me the importance of looking after myself from a very early age, doing as much for myself in terms of treatment as possible. I remember my mum asking me if I could spell 'enzymes' at the age of about four and so I was fully aware of what meds I was on from an early stage. Managing CF requires a lot of time investment and though I could and should definitely do more physio, I never miss my nebulisers or forget to take my enzymes.

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Spotlight

By Christina Kenny, Dublin

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ll of my life my mum has battled Cystic Fibrosis.

As every PWCF knows, every case is different. My mum is colonised with Cepacia which means she cannot receive a lung transplant. She was once fit and healthy like any other mum but now has a lung function of twenty percent. This has meant a very different life for me than that of my peers. Most things about my daily life were vastly different to that of my friends growing up. For a start my mum wasn't always home, she was hospitalised frequently due to exacerbations and would be away for weeks, sometimes months at a time. We didn't live close to the hospital so visiting her during the school week sometimes wasn't even an option. Which meant I missed her a lot and was very grateful when she was discharged! We would be limited to weekend visits when my friends were at the cinema or at birthday parties.During this time it was up to my dad to do everything at home, including some questionable stuff like cooking and even braiding my hair! Even when my mum was home our daily routine might be considered atypical. As I ate breakfast I would watch my mum take several nebulisers followed by twenty or so tablets and then receive Physiotherapy from my dad.

From a very young age I was very involved with her disease, I would remind her to take her tablets and even help her prepare them for the week ahead. As a child, not yet a teen I would even administer and help make up her home IV antibiotics with my dad. I was very involved in all aspects of CF treatment. I felt important and even necessary to the day-to-day functioning of my mother's life. I understood terms most children had never even heard and I could rhyme off all of her tablets and what they were for with ease. I had become accustomed to Spectrum | Summer 2015

celebrating birthdays and other special occasions on hospital wards and having doctors and nurses poke and prod at my mum. I would do projects, homework and even study by the chair next to her hospital bed. I knew the nurses like they were family friends and knew which barista in the hospital coffee shop made the best hot chocolate! The hospital had become a common part of my life, much like school or my grandmother's house.

Even simple things like a family holiday would entail huge amounts of packing, planning and double-checking. We would travel with far more bags than is the norm and our trips would have to be carefully planned.

My mum's Consultant would also have to give clearance that she was well enough too. That often meant we would go when my mum's health was at her best, which wasn't always the best time for the rest of the family. My dad would take time off work and on one occasion while I was still in secondary school it even got me out of my Christmas exams!

When I was growing up I never felt like I missed out on anything, despite my mum's ill-health. I led a wonderful, full childhood. The only thing that I often thought about is how nice it would have been to have a sibling growing up. I am an only child. This is due to my mum's condition. She was very ill after giving birth to me and having a second child was never even an option for her.

I would often get jealous of my friends and their siblings. As I got older, however I saw being an only child as more of an advantageous thing.

Now as my mum's condition progresses I am more involved than ever. I drive her to and from hospital appointments, prepare her medication alone and help 15

organise her various visitors throughout the week, the OT, nurse, counsellor etc! Growing up alongside this condition has meant I have a well-rounded view of life. I don't get tied down with insignificant worries, I understand life is a precious gift not to be wasted or taken for granted. I also like to think it has taught me to deal well with emergency, crisis-type situations as I have witnessed so many. It comes in handy in other, less serious ways, like I can watch an entire episode of Grey's Anatomy and understand the medical terminology.

These days our trips are shorter, closer to home and the hospital. Packing for these shorter trips is even more intense than it used to be. We always have one separate suitcase just filled with machinery and medication and this is the suitcase that takes the longest to pack. My mum's mobility is much more limited now as her lung function deteriorates and now our holiday activities include spa treatments and coffee instead of swimming and shopping!

Having a parent with CF means having to sacrifice lots of things but it also comes with a lot of invaluable positives.

Due to my mum's health she and I are closer than any mother and daughter I know. She is my best friend and knows me better than anyone. She has always known her time is limited and because of this she has equipped me for life in a lot of ways other mothers might not even consider. She has given me endless advice for situations I have yet to even encounter. She has a huge scrap-book that she writes in at least once a day, filled with life advice and guidance. It includes everything from advice on falling in love to having a baby of my own one day.

More than anything, seeing my mum battle CF has made me a more motivated individual. I am now more inspired than ever to chase after my dreams. My mother becomes more of a role model to me with every passing day so much so that in September I begin my PhD in Cystic Fibrosis research at Queens University Belfast.

If I hadn't seen the courage displayed by my mum all of these years I wouldn't be the person I am today.

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Fundraising Challenges and Events Paris2Nice: Sept 18th to 24th Our teams for the Paris2Nice and Rome2Nice cycle challenges are making great progress with regular training cycles each weekend and also a huge amount of money raised to date for Cystic Fibrosis Ireland. This event is a life changing experience for everyone involved. It is open for anyone to join as part of the CFI Team with the entire trip organised by Paris2Nice, a voluntary group. Costs of the cycle are paid for by the participants which means that all funds raised go towards helping people with Cystic Fibrosis in Ireland.

Once you sign up for the event, with registrations for 2016 due to start early in the new year, you work with the other members of the CFI Team and the other charities participating in Paris2Nice to prepare for the cycle and to fundraise. It is a team effort throughout and no words can describe the sense of achievement when you arrive in Nice having left Paris a week earlier on your bike with the CF Team. Contact us now if you are considering taking part in this event next year and would like more information.

Paddy Kierans Memorial Walk: Sept 27th to Oct 4th With only a matter of weeks to go until the 21st International Walk for Cystic Fibrosis in Montenegro, we are delighted to announce that we have over 30 walkers registered so far. However, there are still some places available. The walk will cater to all levels of fitness and is open to young and old. So, if you fancy taking in the magnificent views of Montengro and making new friends all the while fundraising for CFI, this is definitely the event for you! The price of the walk is â&#x201A;Ź2,900 and covers; flights, bed & breakfast accommodation, dinners and guides.

Patron of the Paddy Kierans Memorial Walk, singer Mary Duff will be joining the walk for a second year running. Mary has worked in the music industry for over 20 years and is passionate about increasing awareness of cystic fibrosis. You can discover more about Mary's involvement with CFI and learn more about the Paddy Kierans Memorial Walk on her website http://www.maryduff.net/. As well as participating in the walk, Mary will be working with CFI on a number of exciting projects in the coming months so watch this space!

For more information on the walk visit www.cfireland.ie or contact Nuala on 01 496 2433 / nmcauley@cfireland.ie

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New York City Marathon: Sunday Nov 1st Last Call!

If you are thinking of taking part in this year's TCS New York City Marathon on Sunday 1st November, please get in touch with us as soon as possible.

There are a limited number of places remaining. Don't miss out on what is one of the world's greatest participatory events where a great time is guaranteed. Non-running partners, family and friends are also welcome to attend.

We advise immediate booking in order to access our highly sought after guaranteed places.

Skydives Will you jump for CF? A skydive has to be one of the most exciting things you will ever do in your life. Now is the chance to tick this off your bucket list, while raising much needed funds for CF Ireland. You will get the chance to jump from 10,000 feet, free fall for 30 seconds before the parachute opens and take in the views like you've never seen them before.

To get started, follow the link below to our website which contains all the details you need to make this dream become a reality. https://www.cfireland.ie/get-involved1/eventschallenges/item/178-skydiveforcf Step 1: Choose your preferred location from the 3 options on our website and contact the skydive centre to book your place.

Step 2: Contact our fundraising department on 01 496 2433 or e-mail pminchin@cfireland.ie so that we can issue you with your authorisation letter and you can begin fundraising.

Step 3: Ready, Steady, Jump Step 4: Celebrate your achievement and fundraising efforts by sending us some photos or video footage of your jump for us to share with our supporters.

Both individuals and teams are welcome to take part, so encourage your friends or colleagues to join in and make a day of it, the memories will last a lifetime!

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Kilimanjaro CF Ireland facilitates Kilimanjaro treks throughout the year. This is a great opportunity to have an amazing experience trekking to not only Africa's highest point but what is also the highest free standing mountain in the world.

The 12 day itinerary includes seven days of walking on the Machame Trail, the most scenic route to the summit. The route provides spectacular scenery and a wide variety of different landscapes. The trek is suitable for people with a good level of fitness who enjoy a challenge. The sense of achievement and view from the roof of Africa makes all the hard work and effort well worth it.

If this opportunity appeals to you, contact us here in the fundraising department and we will advise you on how to register for your place and provide you with details on costs and fundraising targets.

Row A Round Ireland The Row A Round Ireland is well underway. The crew set off from Bray on May 30th. Unfortunately the weather for the first couple of weeks was not great so it was not plain sailing, sorry rowing! However, the summer sunshine came out towards the end of June and the crew made steady progress and have now rounded Horne Head and begun the southbound part of their journey.

To support this mammoth challenge you can do the following: 1) Text ROW4CF to 50300 to donate â&#x201A;Ź4 100% of your donation goes to Cystic Fibrosis Ireland across most network operators. Some operators apply VAT which means that a minimum of â&#x201A;Ź3.25 will go to Cystic Fibrosis Ireland. Service Provider: LIKECHARITY. Helpline: 0766805278.

2) Log onto http://www.mycharity.ie/event/rowaroundireland to make a donation or sponsor the crew 3) Follow the Crew's journey on www.rowaroundireland.com and come out to support them when they arrive in your area!

For updates on the Row A Round Ireland fundraising challenge be sure to follow us on Facebook & Twitter.

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Raise the Bar for CF This is a novel fundraising event where we are asking a Bar Owner to sing a song behind the bar, have a whip around for CF and post the song and amount raised on Facebook. We are looking for Pubs across Ireland to participate, so get your local to sign up now and watch your bar owner become a star in their bar on Facebook while raising much needed funds to help people with CF. To take part they just need to follow 6 simple steps; Step 1: An owner or bartender is nominated for 'Raise the Bar for CF' and accepts the challenge.

Step 2: The nominated person becomes a star for the night and must sing a song (of their own choosing) for their customers. The performance must be recorded.

Step 3: A collection will take place with all proceeds going towards helping people with CF in Ireland.

Step 4: All monies collected by the bar are donated to the 'Raise the Bar for CF' My Charity Page naming the bar, the singer and the amount collected. http://www.mycharity.ie/event/raisethebarforcysticfibrosis/ Step 5: The recording is then posted to the 'Raise The Bar for CF' Facebook Page naming the bar, the singer and the amount collected. https://www. facebook.com/CysticFibrosisIreland/events/ Step 6: Nomination time! The bar nominates the next bar to participate and the owner / bartender they want to take on the challenge.

We hope that this novel fundraiser will go viral on FB over the summer so please support it and get your local involved.

Dublin Marathon Will you Run for CF? The 2015 SSE Airtricity Dublin Marathon takes place on Monday October 26th. Registration costs â&#x201A;Ź70 and race entry is guaranteed upon payment.

The 26.2 mile route is mostly flat and is a single lap which starts / finishes near Dublin city centre.

Are you up for the Marathon Challenge? Whether you are a regular runner hoping to add another medal to your collection or a novice looking to complete their first marathon, what better place to start than Dublin! The SSE Airtricity Series includes a number of upcoming racing challenges to help you prepare for the Marathon. For further information on the Race 20

Series, the Marathon or for top tips on training & nutrition visit www.sseairtricitydublinmarathon.ie

To register to take part in aid of CFI email Nuala, nmcauley@cfireland.ie

For more details on any of our fundraising events call Cystic Fibrosis Ireland on 01 4962433, email fundraising@cfireland.ie or check out details of our fundraising events on our website www.cfireland.ie

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.

Annual Conference We would like to take this opportunity to thank our Corporate Sponsors for sponsoring our Annual Conference in Limerick in April. As acknowledged at the conference, our sponsors were Vertex, Novartis, Chiesi and Baxter. The support of these sponsors ensures that our Annual Conference is a key event in relation to cystic fibrosis each year and we greatly appreciate the support provided.

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1 in 1,000 A huge thank you to everyone who took part in the VHI Women's Mini Marathon on Monday June 1st. Over 800 people took part in the 10km walk / run for CFI, well done to each and every person. The One in 1,000 Campaign is a National Fundraising Event for CFI, the focus of which is three fold raising much need funds for CFI, creating awareness of cystic fibrosis and building relationships among the CF community in Ireland. It was great to see so many CF t-shirts on the day and there was a great buzz in DTwo both before and after the race as participants encouraged and congratulated each other and swapped stories.

Although, One in 1,000 Ambassador and RTE Weather Presenter, Nuala Carey had forecasted sunny skies, it was not to be. Dark clouds loomed and just before the runners took off, the rain began to fall. However, the bad weather did not dampen the spirits of those participating and a great day was had by all.

To those who took part, who volunteered on the day or sponsored a participant, thank you - your support is greatly appreciated. A huge thank you to Mylan and all our sponsors for supporting this event.

The 2015 Women's Mini Marathon may be over, but it is never too early to put the date in your diary for next year - Monday June 6th.

If you have not already done so, please return your sponsorship money to CFI. For account information or details on how to return your money contact CFI on 01 496 2433. Anyone who raises over â&#x201A;Ź100 will be automatically entered into a raffle to win some fantastic prizes which include a Kindle Fire, a Vichy hamper, two â&#x201A;Ź50 Penneys voucher and much more. Will you be the 'Lucky One in 1,000'? Make sure to return your sponsorship money before July 31st to be in with a chance of winning. The raffle will take place on Monday August 3rd.

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65 Roses Week: April 20th to 27th Cystic Fibrosis Ireland would like to say a huge thank you to all of our supporters who took part in our 65 Roses National Awareness Week 2015.

The week was a great success both in terms of the increase in awareness of Cystic Fibrosis generated by all the publicity surrounding the week and also due to the funds generated by the fundraising activities all over the country.

We would like to acknowledge the support of our CF Branches around the country for their hard work and also to thank all the volunteers who gave of their time to sell our Purple Roses in the shopping centres around the country.

We are also very grateful to all those who took on the '65 Roses Challenge' and fundraised on our behalf. With so many activities and events taking place during the week, they would be too numerous to mention individually but we hope everyone enjoyed themselves and had fun while also raising much needed funds. Below is just a flavour of some of the events that took place during '65 Roses Week'.

Ciaran Breen and his fellow students from Heywood Community School sold CF wristbands and also organised a fun walk/run/cycle and raised â&#x201A;Ź2,740.

Thanks to the students of Loreto Foxrock who helped out on 65 Roses Day by selling our Purple Roses at St. Stephens Green and also had a bake sale in their school.

Well Done to Antony Dempsey and fellow volunteers who were out in force in Tallaght SC as part of a Family Fun Day.

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Again, thank you to all who sold our Purple Roses in shopping centres, schools, workplaces and to all those who organised events and took on the '65 Roses Challenge'. If anyone still has any outstanding funds to lodge you can do so using the bank details below: Fundraising Account: BIC:AIBKIE2D

IBAN: IE59 AIBK 9310 7108 5785 93

We are pleased to announce that next years '65 Roses National Awareness Week' will take place from April 11th to 17th 2016. We hope to make next year even bigger and better so we look forward to your support. We will be in contact with the CF Branches in the near future with a view to confirming suitable locations to sell our Purple Roses on Friday 15th April 2016.

Thank You!

PDF4CF Cystic Fibrosis Ireland recently won a National Award for excellence in fundraising at the Fundraising Ireland Awards in April. The project Pat Divilly Fitness for Cystic Fibrosis (PD4CF) which raised funds for the Cystic Fibrosis Galway Hospital Project and Cystic Fibrosis Ireland won the National Award for the best use of Digital in Fundraising.

Congratulations to Pat, Mary Lane Heneghan and the CF Galway Team and everyone that participated and raised funds that led to the winning of this National Award. The project was a joint project with CFI and not only raised â&#x201A;Ź165,000 to help people with Cystic Fibrosis, but raised a huge level of awareness of CF culminating in this National Award.

Liffey Swim Big Thanks to Robert Clarke for once again organising the Annual Liffey Swim in aid of Cystic Fibrosis Ireland. There was a great turnout on the day with many brave swimmers taking the plunge into the Liffey from Dublin's O'Connell Bridge. Well done to all involved.

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CeX We are pleased to confirm that we have been selected by CeX as their Chosen Charity. CeX was founded in 1992 and have stores in Ireland, UK, Spain, USA, India, Australia, Portugal, Netherlands, Mexico and Poland.

They will support us across their stores for the coming year.

ForFit ForFit is the first Gamified Fitness App to introduce social and charitable forfeits to motivate and encourage users into getting fit. Every user of the app will be given an option to donate 65% of each €4 ForFit to one Irish Health charity of their choice. Cystic Fibrosis Ireland will be one of four Irish Charities that their Irish user base can donate to with the app launched in July.

City Bin Co. The City Bin Co have selected Cystic Fibrosis Ireland as one of their Charity Partners for their 'Giving Day Campaign'. Each week, they pick a day - Giving Day - and offer contributions to their employees to give to a charity. The employees redeem these contributions against one of the nominated charities. They are trialling an online platform and will look at additional ways to raise funds using this platform at the end of the trial.

Permanent TSB Hot off the press - we are delighted to announce that Cystic Fibrosis Ireland has been chosen as one of Permanent TSB's staff charities from July 2015 to June 2016. The Permanent TSB Charities Committee are planning their first charitable event which is a Vintage Gala Ball and will be held in the Double Tree Hotel, Burlington Road, Dublin on 12th September.

The night itself will consist of a champagne reception, three course meal, dancing with a live band and an auction. They hope to raise in excess of €20,000 at the event at which CFI will be represented and speak about our work and how the money raised will be utilised to help PWCF. If anybody would like to join the CFI Team on the night, tickets are available for €60 per person. Simply contact CFI on 01 4962433 if you are looking for a great night out whilst supporting PWCF at the same time.

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Stories World War 1 Historic Walk in Flanders "Poignant and Memorable"

T

he event was so well organised and so packed with poignant and memorable moments. It was a great weekend and we thoroughly enjoyed ourselves. It was a lovely group of people to meet and spend time with "Myles Dungan's talk was fascinating: it is a rare pleasure to listen to someone who can talk with such confidence, authority and objectivity about a subject, about which he clearly knows and cares a very great deal" These were just a couple of the lovely comments made by those who took part in the first in a series of historic fundraising walks organised by Cystic Fibrosis Ireland (CFI).

Despite his popularity, and the public grief in Ireland and internationally following his death, Redmond's vacant parliamentary seat was won by Eamon De Valera in a shock by-election result in 1917. This represented a key turning point in the change in political opinion that was sweeping across Ireland in the wake of 1916 and in particular the execution of the leaders of The Rising.

In the cemetery beside where Redmond is buried are the graves of two soldiers 'shot at dawn', a poignant reminder of the brutal response to some soldiers considered 'deserters' or 'cowards' at the time and who were made examples 'pour encourager les autres'.

The 14km walk finished at the Island of Ireland Peace Park in Messines. Among the poets quoted at Messines is Francis Ledwidge from Slane, County Meath who was killed shortly after the battle of Messines at the nearby village of Passchendaele in 1917.

"He shall not hear the bittern cry The walk commenced on a beautiful May morning in Flanders, Belgium, at the grave of William Redmond who was a Major in the 16th Irish Division of the British army at the beginning of the Battle of Messines in June 1917. Willie Redmond was an Irish nationalist and was previously active in the land league. He served two short prison sentences for land league activity, the first being in February 1882 when he was arrested for possessing seditious pamphlets, and served three months in Kilmainham gaol, when he

shared a cell with Charles Stewart Parnell. At the time of his death, Redmond was also MP for East Clare.

Redmond was 56, but he badgered his superiors until he was allowed to join the assault on the Messines Ridge. Wounded by shellfire near 'suicide road' as he advanced towards Messines Ridge, he was carried from the field by Ulster troops but died that evening in the Ulster division's field hospital at the nearby village of Dranoutre.

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in the wild sky, where he is lain, Nor voices of the sweeter birds Above the wailing of the rain" Francis Ledwidge

As we walked along what was once 'suicide road' from the lovely village of Kemel towards the Messines Ridge, walkers visited many reminders of the troops from Ireland that were killed during the battle, including beautifully maintained cemeteries, elegiac Celtic crosses and huge craters that have now become tranquil lakes.

The landscape of Flanders that was once impassable mud and devastation is now a lovely patchwork of immaculately maintained mainly dairy and cultivated farms. However if you look carefully, you can still find uniform buttons, cartridges and other evidence from

the conflict.

During the weekend the nearby beautiful city of Bruges provided a welcome distraction on the Saturday afternoon of the weekend. The lovely canals and churches and a local beer served in what appeared to be a huge test tube were particular highlights!

Acknowledgements

È Myles Dungan and Philip Watt

The World War One Walk marks the first in a series of fundraising walks for Cystic Fibrosis Ireland. We would like to thank everyone that took part - they were a lovely group of people from a wide range of backgrounds ages and interests. CFI particularly thanks RTE's Myles Dungan, charity ambassador for the event, who gave a very well received talk on WW1 and the background to the Battle of Messines. Many thanks to Jolyn Mulvey and Peter Minchin of CFI who undertook all the organisation of the event and to the support of Fergal Smyth, Fundraising Manager and also Novartis for their generous sponsorship of the walk. Over €12,000 was raised for the CFI Lung transplant fund.

Philip Watt CEO, Cystic Fibrosis Ireland

Legacy Giving Making a will is not something most of us like to think about but you can make or amend your will at any stage in your life. Many people can afford to give far more in their will than they ever could when they were alive. It won't cost anything in your lifetime, but will ensure through your generosity, your legacy will live on to support future generations. When making a will, it's important to look after your family and friends first. But if you decide to make a gift to a charity in your will - please consider Cystic Fibrosis Ireland.

Previous donations, including several legacy gifts, have enabled Cystic Fibrosis Ireland to lead ground breaking achievements in advancing CF care in Ireland.

Cystic Fibrosis Ireland are proud to be members of MyLegacy.ie and we will publish details of their 'Best Will in the World Week' later in the year when you get an opportunity to avail of a will consultation with your local solicitor for just €50.

For more details on Legacy Giving call Cystic Fibrosis Ireland on 01 4962433, email fundraising@cfireland.ie or visit our website www.cfireland.ie and www.mylegacy.ie

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A huge Thank You to all of our supporters who took part in our 65 Roses National Awareness Week 2015 ISSN 2009-4132

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

Ireland w: www.cfireland.ie

Company Reg: 449954 28

Charity: CHY6350