Spectrum - Issue 33

May/Jun 2013

SPECTRUM

Published by Cystic Fibrosis Ireland

IN THIS ISSUE:

• National Clinical Programme for Cystic Fibrosis • 'Blossom with Every Breath' at Bloom • Review of CFI Annual Conference 2013 • Home IVs for PWCF • European Study on Pseudomonas aeruginosa • Fertility Grant Scheme 2013 • 50 Years of Life Ñ By Greg Foley • Dublin City Marathon

Issue 33: May/Jun 2013 www.cfireland.ie 1

Spectrum / Issue 33

Dear All, We have had a fantastic response to our 50th anniversary year events so far. Almost 500 people attended the remembrance and thanksgiving ceremony in February Ñ for those of you that missed this great event, you can now view a recording of it on our website.

Since our last issue, we had one of our best and most well-attended national conferences/AGMs in April with over 220 participants. There was very positive feedback on the presentations and the workshops. We were very proud to present awards to Anne O'Dwyer, Bridie Maguire, Professor Muiris X FitzGerald, and with a special media award to Joe Duffy from RT . The hotel, Killashee House Hotel, was a great hit with everyone Ñ it was one of the best venues we have had for an annual conference.

Many thanks also for the letters and e-mails about the book 'For the Roses' which has had a great reception from our members and the general public Ñ with a special one page article featured in The Irish Independent.

The Awareness Week was our most successful to date with many events organised during the week that brought in badly needed fundraising. The purple roses bags proved a really popular fundraising initiative, and sold out rapidly throughout the country.

We continue to make progress on a wide range of fronts including improved CF facilities around the country, supporting research, and helping to ensure access to new and innovative therapies. Last year alone CFI committed Û2.1 million for CF building projects. This expenditure is vital and is right but it is also digging deep into our reserves built up over the last 4 years Ñ we badly need the continued support from our members and Branches to sustain this work and we thank everyone again for all your efforts.

As summer finally approaches, we wish you well until the next issue, and encourage you to contact us should you like any particular issues highlighted in the next edition of Spectrum.

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

Front Cover: Rory Tallon, PWCF, with his wife Sarah and daughter Florence at the CFI Conference this year.

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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May/Jun 2013

Section 01:

LATEST NEWS : Page 2Ñ8

National Clinical Programme (NCP) for Cystic Fibrosis 'Blossom with Every Breath' Ñ The Cystic Fibrosis Garden at Bloom Every Patient Requires Good Nutritional Care Ñ A Call to Action Help us to be More Environmentally Friendly CF Ireland Annual Conference Ñ Review and Photo Gallery Vitamin Charges Through the LTI --

Section 02:

RESEARCH : Page 9Ñ10

European Study aiming to Treat Pseudomonas aeruginosa infections in CF Patients Research/Survey on Positive Psychology --

Section 03:

GRANTS & SUPPORTS : Page 11Ñ13 CFI Fertility Grant Scheme 2013 Ñ Open Next Week!

CFChef Ñ An Online Nutrition Resource for PWCF Travel Insurance & Travel Tips Ñ Resources Updated Home IV's Information Leaflet --

Section 04:

GUEST FEATURE : Page 14Ñ15

Your Guide to Kalydeco, By Prof NG McElvaney, CF Consultant, Beaumont Hospital --

Section 05:

PWCF SPOTLIGHT : Page 16Ñ18 50 Years of Life, By Greg Foley --

Section 06:

EVENT FOCUS : Page

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Dublin City Marathon 2013 --

Section 07:

FUNDRAISING : Page 20Ñ25 National Awareness Week 2013 Overseas & Challenges Events Hospital Projects Corporate Fundraising and Thank You

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Spectrum / Issue 33

LATEST NEWS

SECTION 01

PAGE 2Ñ8

NATIONAL CLINICAL PROGRAMME (NCP) FOR CYSTIC FIBROSIS Important Development for CF

The HSE's Quality and Clinical Care Directorate was established to help improve patient care throughout the health system. The Directorate has overseen the establishment of 36 national clinical programmes, which are joint initiatives between the HSE, clinicians, patients, patient organisations and hospital management, charged with defining the ideal care for patients so that it can be implemented across the country.

Cystic Fibrosis Ireland (CFI) welcomes the establishment of a National Clinical Programme (NCP) for Cystic Fibrosis, which will establish national guidelines and models for the treatment of CF in designated specialist and shared care centres throughout Ireland. Some of the existing NCP's include Acute Medicine, Asthma, Elective Surgery, Epilepsy and Renal Services.

This development is very important and provides an opportunity to raise key issues such as: • The continuing gaps and weaknesses in hospital infrastructure for CF care in Ireland and the overreliance on charitable fundraising to meet these gaps • Staff shortages and training/upskilling challenges • The transition from paediatric to adult care • The important role of both specialist and shared care centres

'BLOSSOM WITH EVERY BREATH' The Cystic Fibrosis Garden at Bloom, by Erica Reeves

Cystic Fibrosis Ireland has once again teamed up with the multi-talented Erika Reeves from Tipperary and Dundrum Nurseries to create a new garden for the 2013 Bloom Garden Festival.

Erika Reeves is a young Tipperary based garden designer who is known for her colourful and quirky designs. In 2012 the CF garden designed by Erika won a Sliver Gilt award and the coveted 'People's Choice Award'.

The theme of the Cystic Fibrosis (CF) garden this year is 'Blossom with Every Breath'. It is an expression of optimism on the impressive pace of innovation and treatment of CF in recent years and the increased sense of hope that we are making progress after years of campaigning.

News has just come in that Erika's garden has won the Bronze Award at this years event! Many congratulations again to Erika from all at CF Ireland!

Moro photos to follow in the next issue!

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'Blossom with Every Breath', the CF Garden at Bloom.

Erika, above, has won bronze medal this year!

May/Jun 2013

EVERY PATIENT REQUIRES GOOD NUTRITIONAL CARE A Call To Action

Patient groups and international nutrition experts call on Irish and other European Governments to take action to prevent older people and patients with chronic diseases become malnourished. A conference was held on 23rd May entitled "Effective healthcare requires good nutritional care" to launch a call for action with key recommendations. They emphasise the importance of and urgency to secure good nutritional care to prevent health complications and reiterate that malnutrition is avoidable and easy to manage.

Cystic Fibrosis Ireland attended this conference and support this call for action in association with other patient organisations such as MS Ireland, the Irish Cancer Society and the Carers Association.

The example of Ireland is representative of the situation of Europe. National statistics report that over 140,000 patients are put at risk every year because of malnutrition. However, less than 10% of hospitals in Ireland are screening for malnutrition despite Department of Health guidelines to do so issued five years ago. It is a health issue that costs state Û1.42 billion every year.

According to Professor John V Reynolds, Chairman IrSPEN, "This will not only bring benefits for the many patients whose recovery and health are jeopardised by inadequate or delayed nutritional care, but can be predicted to deliver significant net saving." Read more about this call for action here: www.irspen.ie/wp-content/uploads/2013/05/Call-to-Action-24th-May-20132.pdf

SHORT FILM RAISES AWARENESS FOR CF Screened on TG4

The Galway Branch of CF Ireland teamed up with a local film maker Niall Fall on to make a short film 'An Gada ' to raise awareness about CF. Niall contacted Mary Lane Heneghan, Chairperson of the Galway Branch of CFI, to get a realistic representation about what it's like to live with CF. Niall said that they wanted to "portray honestly the condition, and the effects it has on families who are dealing with it every day." According to Mary, "We hope that it will show the effects and requirements of helping someone with cystic fibrosis. The disease impacts the whole family."

Mary also hopes that the film could be used as an educational tool in school to help children understand more about CF.

HELP US REDUCE COSTS Switch to Receive Spectrum by Email

In an effort to be more environmentally friendly and reduce our carbon footprint, CF Ireland would like to ask members to consider reading Spectrum online instead of us posting it out to each household in hardcopy format.

Not only would this be better for the environment, it would also greatly reduce the cost of printing and posting the newsletter out to members.

Please email info@cfireland.ie or call 1890 311211 and make the switch!

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WITH MANY THANKS TO MARY GODFREY Supporting CF Services

CFI wishes to thank Mary Godfrey for all her work in supporting CF services in recent years as she is moving on to another role outside the HSE. Mary Godfrey has played a key role in nurse education for many years, based in Crumlin. However, it will be through her work in supporting the introduction of newborn screening, her involvement in the development of the high level forum in St Vincent's Hospital, which includes CFI, and as programme manager for the National Clinical Programme, that we would like to say a particular thanks to Mary.

We wish her the very best in the next part of her career Ă‘ many thanks for your commitment and help Mary, from all of us in CFI.

PWCF GROUP There to help, support and listen to all who are living with CF

The PWCF Group is made up of PWCF who want to communicate with each other in a safe crossinfection free environment via teleconferencing or skype. The Group is about building friendships with people who are walking in your shoes, going through the same daily medical routine of nebulisers and physiotherapy, trying to fit everything into each and every day. We are here to help, support and listen to all who are living with CF. The PWCF Group is a virtual branch of the association and we chat freely with a cup of tea and a biscuit in one hand and the phone in the other. Our Chairperson is Brendan Lonergan and our Secretary is Jillian McNulty. We also have representation on the National Executive Committee (NEC) of Cystic Fibrosis Ireland (CFI). Our NEC representatives are Patricia Duffy Barbar, Brendan Lonergan and shadow representatives are Rory Tallon and Nathan Swan. With over 50% of CFI members now being PWCF over the age of 16yrs it is important that we have a voice when it comes making decision for our association.

The PWCF Group also have representation on St. Vincent's Liaison group committee. This is a working group that meets four times a year to discuss all aspects of care within St. Vincent's Hospital for PWCF. Patient representation is vital for feeding back information to staff and hospital management on the positive and negative difficulties/impact of hospital life for PWCF. A subcommittee of the PWCF Group are also currently working on a cross-infection risk assessment grid with Prof Philip Murphy Ă‘ this will help to guide the CFI and families in identifying genuine cross infection risks.

Over the years, we have been involved in many projects, most notably the exercise grant scheme which many of you have reaped the benefits from both financially and physically. The PWCF Group have a closed group for PWCF on facebook, if PWCF would like to join please send a friend request to 'PWCF Group Ireland'.

We would like to offer a hand of friendship to all PWCF and welcome you all with open arms (virtually) to our group. If you would like more information about the PWCF Group you can contact Caroline on 087 9323933/cheffernan@cfireland.ie or Tomas on 087 9323930/tthompson@cfireland.ie

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May/Jun 2013

CF IRELAND ANNUAL CONFERENCE Overview and Photo Gallery

The CF Ireland Annual Conference took place on the weekend of 12-14th April in Killashee House Hotel, Naas, Co. Kildare and was a great success.

Gerard Fay kicked off events by completing a 50 mile run from Drogheda to the conference venue in Naas on the evening of Friday 12th April and was warmly greeted upon arrival by staff of CFI and many of our members who gathered outside to welcome him. This run was part of Gerard's ambition to complete 25 marathons over a period of 10 months to raise awareness and funds for CF. 'For the Roses', the book that traces that evolution of CF Ireland over the past 50 years, was also launched on the Friday evening, and the 65 Roses National Awareness Week was officially opened

by Minister of State for Primary Health Care, Alex White TD. Outstanding contribution awards were presented to Bridie Maguire, Anne O'Dwyer and Prof.

Muiris X FitzGerald in recognition of their pivotal roles and commitment in being the driving forces in establishing the Association. A special media recognition award was also presented to Joe Duffy for the exceptional work of Liveline in highlighting CF issues over many years.

We received great feedback from members on the talks and seminars that took place on the Saturday. Video recordings of the talks that were held in the main hall are now up on our website if you woud like to see them again, and they include: • A UK Perspective Ñ Ed Owen, CEO, CF Trust • New Therapies Ñ Dr Paul McNally, Respiratory Consultant, OLCH Crumlin • PWCF Adult Group Ñ Rory Tallon, PWCF • Fertility & PGD Ñ Dr Sandra Brett, Medical Director, Beacon CARE Fertility & Rory Tallon, PWCF Notes on the seminars are now also up on our website: • Tricks of the Trade for Parents Ñ Olivia Coen, Play Therapist and PWCF • New Therapies: further discussion*Ñ Dr Paul McNally, Respiratory Consultant, OLCH Crumlin • Positive Mental Health for Families Ñ Dr Zai Edworthy, Senior Clinical Psychologist, Temple St. • The Benefits of Adherence and Exercise Ñ Sarah Kelly, Senior Physiotherapist in CF, St.Vincent's University Hospital • Infection Control and Equipment Care* Ñ Barbara Slevin, Assistant Director of Nursing, Infection Prevention & Control, Mid-Western Regional Hospital, Limerick • Fertility & PGD Ñ Dr Sandra Brett, Medical Director Beacon CARE Fertility Dublin, and Rory Tallon, PWCF *Note that the notes for these particular seminars will be posted shortly.

Please log on to the following link to access the videos and seminar notes: www.cfireland.ie/ index.php/conference2013. Note that the video link to the 50th Anniversary Remembrance and Thanksgiving Service, which was held in the Mary Immaculate Church in Rathmines on Saturday 23rd February, is now also available on our website: www.cfireland.ie/index.php/50th-anniversary Conference Feedback If you have any feedback in relation to the conference, or suggestions for what topics you would like to see included at next year's event, please email info@cfireland.ie or Locall: 1890 311211.

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Gerard Fay crossing the finish line!

Julian Nolan, grandson of Bridie Maguire.

L-R: Ed Owen, CEO, CF Trust, Joe Duffy, Alex White TD and Philip Watt, CEO CFI.

Baby Florence, daughter of Rory & Sarah Tallon, PWCF.

Prof Muiris X FitzGerald, Bridie Maguire, Anne O'Dwyer and Joe Duffy.

Dublin Branch members and staff of CFI.

Dr Zai Edworthy, Senior Clinical Psychologist, Temple St.

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Staff from CF House celebrating with Gerard and his parents.

Dr Paul McNally, Respiratory Consultant, OLCH Crumlin

Dr Sandra Brett, Medical Director Beacon CARE Fertility Dublin, and Rory Tallon, PWCF.

May/Jun 2013

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VITAMIN CHARGES THROUGH THE LTI Does this Affect You?

It has been brought to the attention of CFI that some PWCF are being charged for vitamins through the Long-Term Illness (LTI) scheme. Please see below a detailed list of all medications and equipment that can be obtained by PWCF free of charge through the LTI scheme: • Pancreatic Enzymes • Ketovite tablets/liquid • Adeks/Aquadeks vitamins, and other prescribed fat-soluble vitamins • Hepsal, Heprinse, Heplok, Heparin injections • Corticosteroids • Antibiotics • Antacids, H2 Antagonists and Proton Pump Inhibitors • Paracetamol tablets, suspension, elixir, suppositories • B2 Agonists (inhalers, diskhalers etc, tablets, nebulised) • Mucolytics • Laxatives • Sodium Chloride injection • Water for injection • Syringes and needles etc • Disposable gloves, facemasks • Giving sets Above: Reference Guide as to what is covered in the Health Service Executive for each of the 15 scheduled LTI illnesses (as at Jan 2013) All medications or equipment must be prescribed by your GP or CF Consultant. Your prescription and LTI book is sent to County Pharmacists for addition of new medications to your LTI. If there is an issue with payment of one of the listed medications or equipment, ask your pharmacist to contact the Primary Care Reimbursement Services on 01 8647100 for clarification of same.

If you need any assistance or have concerns in relation to medications and payment please let contact CF Advocates Caroline on 087 932 3933/cheffernan@cfireland.ie or Tom s on 087 932 3930/tthompson@cfireland.ie

Left: A photograph sent in to CF Ireland

by Geraldine Leen, CF Nurse Specialist at Tallaght hospital.

L-R: Cormac Murray, Emma Doherty, Elizabeth Brennan, Luke Doherty and Anthony Magee. At the back is Geraldine.

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The photo was taken on a trip to Lapland circa 1993/94. We wanted to share this lovely picture with members as it conjures up fond memories for Geraldine and, we're sure, for the people with CF.

May/Jun 2013

RESEARCH

SECTION 02

PAGE 9Ă‘10

IRELAND JOINS EUROPEAN STUDY AIMING AT PROPHYLAXIS AND TREATMENT OF PSEUDOMONAS AERUGINOSA INFECTIONS IN CF PATIENTS

By Karleen De Rijcke, Cystic Fibrosis Europe, CF Europe president, leader for the IMPACTT Workpackage 7

Pseudomonas aeruginosa is the most significant bacterial pathogen associated with CF pulmonary disease. Today a pseudomonas infection is treated by repeated courses of antibiotics which has a negative effect on life quality. The IMPACTT project aims at exploring a new way to prevent lung infection by those Pseudomonas bacteria as long as possible.

Why is it so important to fight and prevent Pseudomonas infection?

Although important progress has been made in the medical treatment and care of CF, and life expectancy has increased considerably, Cystic Fibrosis still is a chronic, debilitating medical condition. Airway infections are one of the main reasons of deterioration in CF. Due to the underlying genetic defect in CF, sticky mucus clogs the lungs. This leads to colonisation of the lungs with bacteria, chronic inflammation and lung infections. Pseudomonas aeruginosa (PA) is the most significant bacterial pathogen associated with CF pulmonary disease. CF patients are particularly at risk of Pseudomonas infection due to the viscous mucus lining their airways and compromising their respiratory function.

IgY Ă‘ a new remedy to prevent Pseudomonas infection...made from eggs?

Today a pseudomonas infection is treated by repeated courses of antibiotics, either inhaled, as pills or intravenously, which has a negative effect on life quality. The IMPACTT project aims at exploring a new way to prevent lung infection by those pseudomonas bacteria. Research of the past years developed an antibody against Pseudomonas bacteria, called IgY, which is produced from egg yolk. This anti-Pseudomonas IgY is prepared by vaccinating hens with Pseudomonas aeruginosa bacteria. The vaccinated hens produce antibodies against the bug that are transferred to the egg yolk in high concentration. Anti-Pseudomonas IgY is then extracted from the egg yolk and put into a liquid medical product. This product only contains a water extract from egg yolk without any other additives.

Patients are asked to gargle this liquid product every night. This is expected to form a barrier in their throat and thus prevent the bug descending from the patient's nose and throat into the lungs. Past studies with small numbers of patients indicated that IgY may have a potential to form such a 'barrier' and showed that the risk for adverse events was rather low. The European Medicines Agency granted "Anti-pseudomonas IgY" an Orphan Drug Designation.

The IMPACTT clinical phase III trial starting in Ireland in 2013 The IMPACTT project will complete a prospective randomised, placebo-controlled, double blind, multicentre study to evaluate clinical efficacy and safety of the IgY anti-Pseudomonas antibodies in prevention of recurrence of Pseudomonas aeruginosa infection in cystic fibrosis patients. Currently patients in 17 centers from 4 countries (Germany, Belgium, Sweden, Italy,) are participating in the study and we hope that very soon Irish and Czech patients will enroll as well.

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By participating in this study you can contribute to finding new ways to prevent pseudomonas infections, which will hopefully lead to better health outcomes and life expectancy for people with CF all around the world. This study is still recruiting patients. For more information, please contact Jutta Bend, jbend@muko.info.

The IMPACTT Project The European Research project started on January 1st 2011 as a collaboration between ten partners from around Europe. Ireland could join the clinical Study in 2013, thanks to a Swedish grant, and we hope the IMPACTT project will be able to welcome more countries in the near future. Researchers, patient organizations, clinicians and industry joined forces to test a solution to prevent PA infections in CF patient lungs. Another important objective is to explore ways of meaningfully involving patients and family members into clinical CF research. IMPACTT is supported by the EU 7th Framework Programme. For more info: http://impactt.eu/

TICAS Ă‘ TRANSITION INFORMATION FOR YOUNG PEOPLE (WITH LONG-TERM ILLNESSES) MOVING TO ADULT SERVICES Transition Web Design Project

Looking for Volunteers A team in Trinity College Dublin have received funding from the Health Research Board to develop a website for children and young people (with long-term chronic illness Ă‘ aged 13-18 years approx.) who are preparing to make the move from child to adult healthcare services.

The team are now looking to interview a few young people with CF who have not yet transitioned to adult services to talk to them about their information needs, and what would help them prepare for this process. The interviews can be done face-to-face at your next clinic appointment if in Dublin or they could be done over the phone. If you or your child live nearby, it may also be possible to travel to your home directly.

If you are interested in getting involved in this exciting project, please contact: Geraldine Prizeman, School of Nursing & Midwifery, Trinity College Dublin, t: 085- 2289306, e: prizemag@tcd.ie

RESEARCH/SURVEY ON POSITIVE PSYCHOLOGY

By Martina Herbert

I am currently studying for a Masters in Health Psychology in NUIG. Having worked as a nurse for a long time I am interested in studying ways to increase well-being and reduce stress for carers and I am looking for a number of people to take part in a study.

What's involved?

The study involves answering a questionnaire about your age, gender, health and emotions. Some volunteers will then be asked to do a simple exercise taking 5-10 minutes daily which involves thinking about three good things which happened during the day. The questionnaire will be repeated again about 3 weeks later. The study can be done online or with pen and paper.

Research has shown it may have beneficial effects on one's mood and health. The website address is: http://positivepsychologystudy.wordpress.com. If you think you may be interested please contact Martina by email and she will send you further details: m.herbert2@nuigalway.ie 10

May/Jun 2013

GRANTS & SUPPORTS SECTION 03

PAGE 11Ñ13

CFI FERTILITY GRANT SCHEME Open Next Week

The Cystic Fibrosis Ireland (CFI) Fertility Grant provides financial support to people with cystic fibrosis (PWCF) and their respective partners who wish to undergo fertility assessment/treatment in the hope of becoming pregnant. Since this scheme was first rolled out in 2010, a total of 27 fertility grants have been awarded to members.

How much funding is available?

The value of the grant for first-time applicants in 2012 is Û3,000. Members who previously availed of the fertility grant are eligible to apply for a second time Ñ the value of the grant for second-time applicants is Û2,000.

How do I apply?

A Fertility Grant Application form must be completed and supporting documentation from your CF Centre and the fertility clinic you plan on attending must be sent to the CFI National Office by a Friday 27th September 2013.

The decision to go ahead with any form of fertility treatment should be thoroughly discussed with and endorsed by your Cystic Fibrosis Consultant and multidisciplinary team.

Where can you get more information about this call?

The Application form and Guidance Notes will be available for download under the 'Grants and Services' section of our website next week.

For further information about this call, please contact: Alica May, Services and Information Officer t: 01 496 2433 e: amay@cfireland.ie Note on Pre-Implantation Genetic Diagnosis What is PGD? Pre-implantation genetic diagnosis (PGD) is a procedure that is used to identify embryos with specific genetic alterations in vitro prior to transfer of the embryo to the uterus. It is used in conjunction with IVF and allows only those embryos diagnosed as being free of a specific genetic disorder to be transferred into a woman to try to achieve a pregnancy.

Is PGD available in Ireland?

Yes Ñ in November 2012, the Irish Medicines Board (IMB) granted licences to the Beacon CARE Fertility Clinic in Dublin and the Cork Fertility Clinic following rigorous pilot studies. The IMB is now satisfied that these clinics will carry out the embryo biopsy to a high standard. Couples seeking PGD previously had to go abroad for these tests to be carried out.

At present, CFI has no policy position on pre-implantation genetic diagnosis. However, a working group of Board members is being set up to look at this issue further Ñ we would welcome everyones views on such sensitive and complex issues Ñ please send any comments to amay@cfireland.ie.

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CFCHEF Online Nutrition Resource for PWCF

CFChef is an online nutrition resource that allows people with cystic fibrosis to share and receive support, recipes and meal tips.

You Are What You Eat All children and adults need to be aware of what they eat whether they have been diagnosed with a disease that affects the digestive system or not. For people diagnosed with CF, not only do they need to make the right meal choices, but they also need to pay attention to the quality and quantity of food they eat and how frequently they eat.

Check out this great online nutrition resource for PWCF at www.chef4cf

CFChef contains tips for healthy eating at all ages and has advice for managing and maintaining energy whether you are sick or engaging in exercise.

CFChef also has an online cookbook that allows you to access lots of different recipes for breakfast, lunch, dinner and snacks. So why not log on, check it out for yourself and get cooking! w: www.chef4cf.com Note: The CFChef CF Nutrition Guide was developed by Abbott Laboratories with input from a Registered Dietitian based on information and guidelines from the Cystic Fibrosis Foundation. The content on Chef4CF.com is for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

TRAVEL INSURANCE & TRAVEL TIPS Resources Updated

It's that time of year again when people are thinking about booking that holiday! Here at CF Ireland we have been getting a lot of calls from members about what they shoud be considering in these preparations and where to go for travel insurance.

In response to this we have updated our 'Travel Tips' and 'Travel Insurance for PWCF Livinig in Ireland' documents.

Check them out by logging on to www. cfireland.ie or give us a call in the National Office and we can send you out a copy.

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The updated Travel Insurance document is now online.

Read our 'Travel Tips for PWCF' information leaflet.

May/Jun 2013

HSE OPAT (HOME IV'S) INFORMATION LEAFLET For People with Cystic Fibrosis

What is OPAT? OPAT is the 'Out-Patient Antimicrobial Therapy' service. OPAT is provided for patients requiring intravenous antibiotic treatment and is given to patients in their own home (sometimes referred to as Home IV's). This treatment is also available for patients with Cystic Fibrosis.

Who Provides the OPAT Service?

Your Cystic Fibrosis team will continue to manage your intravenous antibiotic treatment as always.

The HSE tendered for the provision of a national OPAT service and the contract was recently awarded to TCP and Fannin (this is a joint arrangement by both vendors). Both these companies have provided a number of patient services nationally and have a good track record in this area of care. This changeover to the new vendors is currently underway and you will notice this change the next time you need to access the OPAT service.

What is Provided from the OPAT Service?

The service provided for OPAT is similar to what you have received before and will include the following: • The antibiotics as prescribed by your Cystic Fibrosis team and everything that is needed for the administration of these antibiotics e.g. gloves, extension kits, wipes, fridges etc.

• A sharps waste management service • Blood tests if required • A 24 hrs/7 days a week patient care helpdesk, which is available to respond to any related queries from either patients or healthcare staff.

• The administration device may be somewhat different from what you have been used to using. TCP and Fannin are available to provide training and support to you to ensure you are completely satisfied and confident when using the new device.

What if I have a question? Who should I contact when I am at home?

Your CF team is always happy to take a call from you, and in addition the patient care helpdesk is available 24hrs/7 days a week to answer any of your questions or queries. They can be contacted at 01 427 6007.

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GUEST FEATURE

SECTION 04

PAGE 14Ñ15

YOUR GUIDE TO KALYDECO

By Prof NG McElvaney, CF Consultant, Beaumont Hospital

Kalydecoª is a new tablet medication for the treatment of specific forms of cystic fibrosis. It was recently approved by the Minister for Health and Children. That means it will be supplied free of charge to people in Ireland with a particular type of CF. It is really important to state at the very beginning that Kalydeco in its present form is only effective and approved for people with the G551D form of CF. That means that these people have CF as diagnosed by standard testing and like all people with CF have two CF mutations. So, in addition to their G551D mutation these people will commonly have another CF mutation such as the delta F508 or other CF mutation.

Some, rarely, have two G551D mutations.

In those people who were initially treated with Kalydeco in a clinical trial the results have been very good with significant improvements in lung function such as forced expired volume in one second (FEV1), decreased infections, better symptoms and increased weight. This is very important for us in Ireland as the G551D mutation is very common here and is in over 1 in 9 of our CF population compared to 1 in 50 or 1 in 40 in other populations. It is estimated that there are as many as 130 people in Ireland who could benefit from this medication. Irish people with CF were very important participants in the early studies in this medication and now we are beginning to see the benefits.

One of the big questions is how does it work?

Interestingly no one is quite sure. We know it does a lot of things but mainly it makes the CF protein CFTR work better. By doing this it helps make the secretions such as phlegm more liquid and easier to cough up thereby improving lung function, but we are not so sure how it improves body weight and some of the other typical CF symptoms. To work normally CFTR has to be at the right position at the apex or top of the cells in the body and that is why this medication works best in G551D individuals because in these people the abnormal CFTR is in the correct position at the top of the cells. It just doesn't work that well in getting salts in and out of the cell. Kalydeco changes this. One of the earliest indications that Kalydeco is working is that it normalises the sweat test, that is, it reduces the sweat levels to that of a person without CF. This is a real example of a thing we are going to see more frequently over the next number of years Ñ 'personalised medicine' Ñ where instead of treating CF or asthma we will be better able to distinguish different types of CF or asthma and design medicines that act accordingly.

Does Kalydeco cure CF? Kalydeco certainly does a lot of good things but it is too early yet to say f0r certain whether it is a cure. For one thing it cannot reverse lung damage that has occurred. If a person with CF develops bronchiectasis, which is very common, it is highly unlikely that Kalydeco will reverse this. Will it clear pseudomonas or other bacteria? This is unlikely if there is long-term colonisation with these bacteria and structural lung damage, but as we have only short term experience with Kalydeco we are not sure. One thing seems evident, namely that it is best to start therapy with Kalydeco as soon as possible. That is why there have been recent studies in very young children which are promising and should see earlier introduction of the medication which will hopefully prevent bronchiectasis and the occurrence of other irreversible lung and perhaps other organ damage. A 14

May/Jun 2013

very important point to remember is that if you are on Kalydeco you will not get maximal benefit unless you continue to use your other CF medications such as nebulised antibiotics, pulmozyme, pancreatic enzymes and vitamins and continue to perform regular chest physiotherapy. All the studies with Kalydeco which showed such good results were on people with CF who continued their regular medications. In established CF, Kalydeco does not substitute for regular CF therapies, but works in addition to them.

Does Kalydeco work for people with other CF mutations such as the delta F508?

In those with two delta F508 mutations Kalydeco alone is not going to make a significant improvement but in combination with other drugs, which can move the delta F508 CFTR to the apex (top) of the cell, Kalydeco may be effective and is presently being evaluated for this purpose.

The company which makes Kalydeco is also evaluating whether it works in forms of CF other than the G551D form. One type they are evaluating is the R117H mutation. This mutation is known as a conductance mutation, and a bit like G551D it causes abnormal function of the CFTR protein at the cell surface. However, not all forms of CF associated with the R117H mutation are severe and so it is not clear whether all people with this type of CF mutation in conjunction with another CF mutation would benefit or indeed require a drug like Kalydeco.

Other things to remember about Kalydeco It interacts with food and with other medications. With regards food, grapefruit or Seville oranges should be avoided. Fat increases the exposure by approximately 2-4 times so it is recommended that Kalydeco should be taken with 15-20 grams of fat. The maximum dose of Kalydeco in your blood is seen after 4 hours, and by 12 hours this max dose has halved. So, if a tablet is missed, there is still Kalydeco in your blood stream until you have your next tablet (but it will be a lower amount). It takes 3-5 days of Kalydeco to reach a steady amount in your blood stream.You should always talk to your doctor before changing your medications as they will know your own special circumstances. In general, if you are taking certain medications such as ketoconazole, itraconazole, posaconazole, voriconazole, telithromycin, and clarithromycin, you need to reduce your Kalydeco dose to 150 mg twice-a-week for the time you are using the other medications. If you are taking fluconazole and erythromycin you should reduce your Kalydeco to 150mg once daily while using thee medications and the same holds for ciprofloxacin.

In summary, Kalydeco is a very good medication for some people with CF but we are still learning about how well it works and whether this effect can be sustained along with the need to see whether it can help other forms of CF.

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PWCF SPOTLIGHT

SECTION 05

PAGE 16Ă‘18

50 YEARS OF LIFE

By Greg Foley, PWCF, Co Dublin

It's funny the things you remember. Back in the 1970s, I was watching the Oscars when John Wayne strode to the podium to present an award. Slightly breathless, he said in his typical drawl: "Oscar came to Hollywood in 1929". After a bit of a gap, he added "So did I." Well, the Cystic Fibrosis Association of Ireland was 'born' in 1963 and...so was I. That makes me 50 years old and as a person suffering from CF (I refuse to say PWCF by the way!), that's a long time. Of course, these days, it's not enough to say you have CF, you have to give your genotype. I'm homozygous for ∆F508, as was my late brother, Tony, who died tragically and ironically of oesophageal cancer in 2010 at the age of 42. My three other siblings are CF-free and alive and well.

Greg, aged 7.

"While recognising your limitations, you should have high expectations, not just from life but from yourself" Much has happened in the last 50 years and I obviously can't give you a blow-by-blow account of my life. So, I thought I'd give just a quick summary and then mention some of the more significant moments and events; and give you some thoughts. I'm a very private person by nature and the reason I am writing this is largely down to the fact that I have a 5 year old son, Leo. Knowing how protective I am of Leo, who is perfectly healthy, I can only imagine what it must be like for a parent of a child with CF. So I'm writing this in the hope that it might give parents some insight into what life with CF can be like. I suppose the message I most want to get across to you is that people who suffer from CF, including children and teenagers, rapidly develop a resilience and mental toughness that will probably far exceed yours. So although you will always worry about them and want to protect them, they will be both mental and physical survivors.

Anyway, my life with CF has been busy. I have had all the usual complications: repeated infections, a collapsed lung that had to be treated with by pleurodesis, a life-threatening haemoptysis, two bowel blockages, oxygen dependence between 1996 and 2002, BIPAP dependence for all of 2002, a double lung transplant (in Newcastle) around Christmas of that year, subsequent bouts of rejection and infection, kidney failure and a year on dialysis, and finally, a kidney transplant on New Years Day, 2011. There have been many other 'niggles' along the way but incredibly I have not developed diabetes.

In that time, I've gone to university, both in UCD where I earned a degree in chemical engineering in 1984 and a PhD in 1993 and in the US where I earned a master's from Cornell University in 1986.

I'm educated to the hilt in other words! I've been a lecturer in DCU more or less continuously since 1986 and I'm still there to this day. I'm effectively institutionalised.

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May/Jun 2013

I've been married twice, once to a fellow CF sufferer, Patricia Kelly, who died in 1992 following a double-lung transplant in Harefield. In those days, there wasn't the same appreciation of crossinfection and 'intimacy' between patients was not as unthinkable as it might be now. That whole period was dominated by illness and as with two alcoholics who meet in rehab, our relationship was probably doomed from the beginning, even if the ending was unexpectedly tragic. In 1998 I married Julie Dowsett, who was then the CF Dietitian in St.Vincent's (therein lies a tale!) and happily married we remain. We often joke that I have lived a lot longer than she probably expected and she has gotten far more than she bargained for. We have a little boy, the aforementioned Leo, who was conceived in the Assisted Reproduction Unit in Clane Hospital. He is, without doubt, the love of our lives.

Greg with his son Leo.

An Engineering textbook written by Greg.

Greg today.

The worst of times? Early childhood was hard because being different is tough for any child and my life was plagued by what we called 'tummy' problems. I don't think it is quite appreciated the game changer that was the arrival of Pancrease. That was around 1980, and it meant the end of days spent sitting on toilets. The late 1990s to early 2000s were tough too. Maintaining my lecturing job while operating on very low lung function with very poor 'sats' was extremely challenging. At times, things were almost comical. My collapsed lung happened early one morning but I still went to work, despite feeling desperately breathless. I had two lectures in a row that morning and half way through the second, I made some excuse to the students about having to finish early and made my way to Vincent's where the registrar put in a chest drain.

Kidney failure is tough too. It's not quite as debilitating as lung failure but it brings with it a level of exhaustion that is difficult to describe. Sleep is possible, any place, any time. Kidney failure and family life do not mix well. The year on dialysis is mentally tough too, even though you feel physically better. The shear predictability of the dialysis sessions is draining.

When I look back on all of these challenges, sure in the knowledge that there will be more, I sometimes try to figure out how I got through it all. Medical science has played a major part, for sure, and the love and support of Julie and all my family has been a big factor. But when I think of it, it seems to me that the biggest factor was fear. Not fear of death or anything as dramatic as that, but fear of the whole 'house of a cards' collapsing around my ears. The fact is that I had, and have more than ever, too much to lose. To submit to the CF could have meant the end of so many things that I loved. Like sports people who get injured repeatedly only to drag themselves back to fitness, I felt that I had no option but to do likewise when the CF knocked me back.

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And what a good life I have had! I have been most fortunate to have forged a career that I love.

The mix of teaching, research and writing that I enjoy in DCU is such that I never dread going to work. In fact, I positively enjoy it. This year I will publish my first book, an engineering textbook.

It has always been an ambition of mine to write a book like this and it has been a labour of love Ă‘ I won't get rich on the proceeds. And that, indeed, is the secret of living with CF. You need to develop a passion for something, something that makes you want to endure the setbacks that will inevitably come your way. You should never settle for survival and see survival as a victory.

While recognising your limitations, you should have high expectations, not just from life but from yourself.

When people are asked the question "do you have any regrets?", they usually reply with something trite lie "I don't do regrets". Well, to misquote Frank Sinatra, I have "too many to mention". We all do. But do I regret having CF? Well, yes and no. I do sometimes wonder what life would have been like if I hadn't had CF Ă‘ I just don't know. But CF has had its upsides as well. I have met so many wonderful people through CF, not least Julie; but countless medical staff and patients.

Furthermore, attending a transplant unit and being on dialysis has opened my eyes to the challenges faced by people with conditions other than CF. There is a wonderful story by French author, Guy de Maupassant, which we did for the Leaving Cert. The story is called Menuet and it is about a man who observes too old folk dancing in the park. In the opening line of the story, the author basically says (it's in French!) that it's the little things in life that affect him emotionally, not the great events like wars and famines. Back in the bad old days, not long before my lung transplant, I had to have a DEXA scan. I was breathless in a way that only those who have experienced lung failure can appreciate. I have never forgotten the gentleness, kindness and patience that the radiographer showed to me that day and I have always remembered her. The experience of little moments like that, and there have been many, go some way towards making the whole CF journey not only bearable but enriching.

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EVENT FOCUS

SECTION 06

PAGE 19

DUBLIN CITY MARATHON 2013 Monday 28th October

Internationally known as the "friendly marathon", the Dublin marathon is famous worldwide for the amazing reaction of the spectators that line the streets. Why not join the Cystic Fibrosis Team and enjoy the warm welcome of Dublin, while helping us raising funds for Cystic Fibrosis in Ireland.

Course: The course is largely flat and is a single lap, starting and finishing close to the City Centre.

The start will be in Fitzwilliam Street Upper and the finish Line will be in Merrion Square North.

Interested in an additional challenge?

The person that raises the most funds or recruits a team of 10 or more will be presented with a prize after the Marathon.

Sign up today to receive your fundraising pack: • Running Jersey • Sponsorship cards • Fundraising support

.

REMEMBER! You must register with the Dublin Marathon organisers to get a race number: www.dublinmarathon.ie Interestingly, on the day, Gerard Fay, our 'Marathon Man' is set to complete his 100th Marathon at this event Ñ his schedule of marathons for 2013 was published in our January-February issue of Spectrum.

He is on target to date. Gerard will be wearing a special CF running vest with '100' printed on it, so if you are not taking part, please come out on the route and support Gerard. His phenomenal fundraising for CF facilities over the years has made a great difference.

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FUNDRAISING

SECTION 07

PAGE 20Ñ25

The fundraising landscape continues to present difficulties from an income viewpoint. Some events are raising less money than previously and for this reason we need more volunteers to organise a larger number of events.

We call on our volunteers to help us by arranging local events or participating in national events and activities to help us raise awareness of Cystic Fibrosis and to raise much need funds to provide services and facilities for the benefit of our CF Community.

If you would like to organise your own event or would like to support any of our activities, please contact the Fundraising Department on LoCall: 1890 311 211 or email: fundraising@cfireland.ie

NATIONAL AWARENESS WEEK 2013 Overview

We are delighted to report our 65 Roses National Awareness Week was once again a huge success.

This wouldn't be possible without the hard work and support of each and every person who joined the campaign, which raised the profile of Cystic Fibrosis.

The Campaign also raised vital funds, which will support the work of Cystic Fibrosis Ireland in its fight for adequate national and local services.

Many amazing fundraising events took place, all very much appreciated, and some of them proved it is still possible to run a successful event, even in these challenging times. We would like to thank each and every individual who helped us.

The determination and good will of these people and many more like them is the reason why our 65 Roses National Awareness Week is a campaign that keeps growing every year.

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Sue-Ellen Quigley raised Û5,446.20 by organising an entertainment night in Howth and supporting the sale of emblems.

Ballyfermot Boxing Night on April 19th raised Û7,084.91.

L-R: Martin, Tony (PWCF), Philip, Caroline, Maria and Bernard.

May/Jun 2013

The Hannafin Family raised Û6,783.89 from a number of events, e.g., RT Social Club Pub Quiz, Coffee Morning and Shopping Centre collection. L-R: Martin, JP and Aine Hannafin (PWCF), Siobhan Hannafin, Philip, Aisling Bastable and Kevin Hannafin.

The Byrne Family out fundraising: L-R: Ellen (PWCF), mum Elayne, brother James and nanny.

OVERSEAS EVENTS In Spain, New York and Tuscany

Camino Walk 2013 There is still time to join our Camino Walk 2013, which will take place in Spain from September 12th to 19th.

Fundraising target is Û2,000. For further details, be sure to get in touch with our Fundraising Team.

Paddy Kieran's Memorial International Walk Ñ Tuscany, Italy 2013 Few places are still available for our International Walk 2013. Get in touch before it is too late!

The walk will take place from October 5th to 12th. The fundraising target is Û2,595 and includes return flights, transfer, dinners, accommodation bed and breakfast on a sharing room basis and much more.

ING New York Marathon, 1st Ñ 5th November 2013 New York is an unforgettable experience, a combination of a superb marathon and a vibrant and unique city. Runners, walkers, non-running partners, family & friends are welcome on Team CF Ireland. With two million spectators and a carnival atmosphere, the New York City Marathon is an unforgettable experience.

The Marathon will take place on November 3rd, starting from Staten Island, running/walking through all five city boroughs (Staten Island, Brooklyn, Queens, The Bronx, Manhattan) and finishing in Central Park.

All tours are on a full package basis. Such is the demand for this tour, we advise immediate booking in order to guarantee your place.

The New York Marathon will take place on 3rd November 2013.

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CHALLENGES & EVENTS Fancy a Challenge?

Hell & Back Apollo Ñ Sunday 16th June Ñ NEW DATE ADDED Are you up for a Midsummer's challenge? Log onto www.hellandback.ie and join one of the toughest challenges coming up.

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

The first thing to do is contact The Irish Parachute Club and express your interest in taking part in a charity skydive: The Irish Parachute Club, Clonbullogue Airfield, Edenderry, Co Offaly. Tel: 1850 260 600 Web: www.skydive.ie. Once you have received the information from the Parachute Club, please contact our fundraising department at 01 4962433 or email: fundraising @cfireland.ie to receive your fundraising pack.

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

A fully equipped support vehicle will accompany you throughout. For more details contact Ray Crowley email: crowleyray@gmail.com

COMMUNITY EVENTS & INITIATIVES See Below

Wedding Favours Make your wedding favours truly memorable by donating to Cystic Fibrosis. Donating in this way is a unique way of thanking your guests for celebrating your wedding. It is the perfect finishing touch to your big day and is a more meaningful gift than traditional wedding favours.

Recycling for CF This is a great way to support the cause: get your school or company involved. Full details on our website www.cfirleand.ie or contact us directly; we will be delighted to help you.

Bloom Garden Festival, Phoenix Park 30th May Ñ 3rd June Erika Reeves, horticulturalist, has undertaken to create a garden for children at Bloom this year.

Last year, Erika's creation of an adult-themed garden won a Silver Gilt Award and also Peoples Garden of the Year. With a footfall of 90,000 visitors, this was a great CF awareness exercise.

Well done Erika. It takes about 4 weeks to prepare the garden for show, and we look forward to support from the CF community again this year.

Niamh Morris Interactive Race Night Ñ 8th June Are you looking to support Cystic Fibrosis and have a great fun night? This is the event you should be attending. Niamh Morris's Interactive Race Night will take place in the Fingallians GAA Club in Swords, Co. Dublin on 8th June from 8pm. The event has been organised to maximise fun, while raising funds for Cystic Fibrosis in loving memory of Niamh Morris.

The night will be also filled with auctions, raffles and much more! Want to find out more? Please call Eufemia for further information.

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May/Jun 2013

Trim AC Braveheart Trail Race Ñ Friday 14th June at 8pm The Fourth Trim AC Braveheart Trail Race will be chip timed and staged over a five kilometre course on The event will be staged along the banks of the Boyne and will take in many of the medieval sites of the town through the Porchfields. The heritage trails of Trim are an excellent leisure resource, and always prove popular with runners as they include a number of locations which featured in Braveheart.

Entry fee Û15 on the night or if you pre-enter via www.runireland.com. Prizes for senior, junior and master runners. Call 086 3445903 or 086 8904439 for further details.

Pub Quiz Ñ Irish Tag Rugby Association Ñ 20th June This event is being organised by the fundraising team at CF Ireland. Nuala Carey RT (Lotto and Weather announcer) is quizmaster for the evening. Questions will be set by Aisling Bastable, RTE. The event will be held in Peggy Kellys in Harold's Cross, so come along and join in the fun and maybe win a prize!

Longford to St.Vincent's Hospital Cycle Ñ 21st to 24th June Jillian McNulty, PWCF and CF campaigner is undertaking another amazing challenge. Following her friend Eleanor losing her battle with CF on December 3rd, Jillian has decided to do a fundraising cycle which will begin on June 21st, which would have been Eleanor's birthday.

• Friday 21st June: Jillian will leave Landmark Hotel, Carrick-on-Shannon & cycle to Longford (Courtyard Cafe).

• Saturday 22nd June: From 12 noon a fundraising event will take place in The Courtyard Cafe, Longford Town thanks to Sheila & Derek Fitzgerald. The event will be compered

by Shannonside Northern Sound DJ Mike Mulvihill. The Cycle leaves Longford after the fundraising event.

• Sunday 23rd June: Leave Hamlet Court Hotel, Enfield & cycle to Clarion Hotel, Liffey Valley.

• Monday 24th June: Leave Clarion Hotel, Liffey Valley to St Vincent's Hospital. Senator David Norris & Operation Transformation's Karl Henry will also be there to greet us on arrival!

• Fundraising Auction will be held in The Courtyard Cafe on Friday 14th June.

• Jillian will also hold a 5k fun run in The Mall Complex, Longford on Sun 16th June, followed by a kiddies fun run after.

Good luck and safe cycling to Jillian and all those involved!

Thunderbolt Boxing Night Ñ October 12th New date is now set for the amazing Thunderbolt Boxing Night in aid of Cystic Fibrosis. The boxing night will take place in the Ballsbridge Hotel on October 12th. Doors open at 7pm and first fight on 8pm.

In advance of the night, Thunderbolt Boxing are running a bootcamp to get you fit and ready for the night. This bootcamp is open to men and women of any age, and any level of fitness.

For further info on the bootcamp and on the night, please contact Jonathan on 085 8118939 or thunderbolt1obrien@yahoo.ie

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HOSPITAL PROJECTS Progress Update

Waterford Hospital Project Well done to all who are involved in fundraising for Waterford Regional Hospital. Over Û90k has already been raised in only 6 months.

The trojan efforts continue and a great night is planned in Kilcohan Park Greyhound Stadium for Friday 31st May. A 'Waterford United' (anyone remember them?) legends team managed by Roy Evans of Liverpool fame, and led by Paul McGrath, will play a 'League of Ireland Legends' selection and kick-off is at 6pm. This will be followed by a 10-greyhound race meeting which will finish with an auction of a thoroughbred greyhound puppy (excellent pedigree). Contact Ann Doyle, CF Clinical Nurse at WRH, phone 051 842061.

For fundraising materials, assistance and advice, call Martin or Rosie at 01 4962433 Beaumont Hospital Project We urgently need to raise Û2.5 million for 12 in-patient isolation rooms in Beaumont Hospital for people with cystic fibrosis, and we need your help.

You can help us in a number of ways by: • Organising a fundraiser Ñ see list of Fundraising ideas on our website.

• Taking part in an event such as the CF 'Head2Head Walk' (see below) • Donate to the CF Beds for Beaumont Appeal today 'CF Head 2 Head Walk' Ñ Sunday 29th September 2013 The 1st 'CF Head 2 Head Walk' will take place this year on Sunday, 29th September. All funds raised from this event will go towards the Beds for Beaumont Campaign. The 26 mile route will take place in the beautiful surrounds of Dublin Bay. Participants can choose to walk from Howth Head to Sandymount or from Sandymount to Bray Head.

The walk will start from 9.00 am. Aged 16+ may only register.

To organise a fundraising event and/or sponsorship pack please call the Fundraising team on LoCall 1890 311 200 or email fundraising@cfireland.ie. Check back soon on our website for more details!

VOLUNTEERS NEEDED June 29th, Dublin

Bag packing in Dunnes Stores on June 29th: We urgently need volunteers to help out with our bag packing in Dunnes Stores, Henry Street, Dublin 1 in June.

If you can spare a couple of hours, please get in touch.

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CORPORATE FUNDRAISING Charity of the Year/Charity Partnerships

If you are aware that it is coming close to the time for your business or employer to choose their charity of choice for the coming year, please let us know so we can make a case for Cystic Fibrosis.

Also, if there are any other charity fundraising events in your place of business or employment, we would be grateful to hear of them in advance.

THANK YOU Acknowledgements

Dubco Credit Union Thank you to Dubco Credit Union for donating Û1,000.

UCC Genetics Society Huge thanks to the UCC Genetics Society for raising Û790.33 by organising Cystic Fibrosis Week, which included a FIFA tournament, a Big Fat Quiz of the year, a Movie Marathon and a Charity Wax. RCSI Ball Thank you to all students of RCSI who raised another Û5,000 from their College Ball on 13th April.

Thanks to Dubco for their Û1,000 donation to CF Ireland.

St Columba's College, Whitechurch Alex O'Herlihy, PWCF, is growing up surrounded by the staff and pupils of St Columba's College, Whitechurch where his parents work. At their last chapel service, Û1195 was collected for CFI. Skydive Ñ Rita Martin A big THANK YOU to Rita Martin, Gavin Martin, Louise Martin and Kevin Durran who did a skydive recently and raised Û1,260.

London Marathon 2013 Thank you to the team who took part in the London Marathon, while raising funds for Cystic Fibrosis. The team members not only completed the Marathon, they also managed to raise over Û12k. That's what we call success and determination!

At the London Marathon (L-R) is Melissa Duncan, James Ryan, Tara Brereton & Shane Hegarty.

Julie, Ian and Baby Alex O'Herilhy (PWCF), raised Û1195 from a collection at St Columba's College.

A huge thanks to Rita, Gavin and Louise Martin, and Kevin Durran, for raising Û1,260 for CF Ireland!

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About Cystic Fibrosis Ireland (CFI)

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

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

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

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

Ireland w: www.cfireland.ie

Company Reg: 449954

Charity: CHY6350 26