CFAI Spectrum - Issue 28

Jul/Aug 2012

SPECTRUM

Published by the Cystic Fibrosis Association of Ireland

IN THIS ISSUE:

• New CF Unit Opens in St. Vincent’s Hospital • CFAI Website Launches • European Medicines Agency approves KALYDECO • Life’s Biggest Questions • Exercise Grant Scheme – Opens in Sept • Fundraising News this Summer

Issue 28: Jul/Aug 2012 www.cfireland.ie

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Spectrum / Issue 28

Dear All, An emotional day: The opening of the new CF Unit in St Vincent’s Hospital The opening of the new unit in St Vincent’s Hospital is first and foremost a tribute to people with CF in Ireland and their families, including those of our members who are no longer with us.

The ‘Vincent’s campaign’ was built and sustained on many shoulders. It is also a tribute to the clinical team in SVUH led by Professor Gallagher and Dr McKone that have done so much behind the scenes to make this development a reality. The fact that the CF unit was completed at a time of recession is a significant achievement in itself.

We still have a long distance to travel to ensure we have the same high standard of CF services available throughout the rest of the country, but the new unit is a major stepping stone in the right direction.

We thank all those who supported the campaign, including patient advocates, families, politicians, the media, the CFAI board and staff past and present and the general public.

Thanks also to the present and past Government which ultimately provided the finance to make this day a reality, including the support of Minister of Health, Dr James Reilly T.D. EU Approval of KALYDECO (VX770) We also welcome the EU’s approval of KALYDECO, a major step along the road to the drug’s availability in Ireland. We still have major hurdles to climb, including the fact the regulatory authorities in Ireland now have to approve the use of the drug. This groundbreaking drug is the first to treat the underlying causes of CF related to the G551D genetic alteration.

Because of the high research and development costs and the fact that only about 4% of the CF population worldwide will benefit from this drug (10% in Ireland), the costs of KALYDECO per patient will be high.

However, with only 120 people in Ireland with this particular gene alteration, and the fact that not all of these will need the drug at present, the numbers of PWCF are still relatively small. We support the Irish government in ensuring that the costs of this drug are kept as low as possible, but we will not accept costs as an excuse for not approving this drug.

CFAI has written to the regulatory authorities in Ireland to ensure that this drug is fast tracked through the approval process in Ireland. In the meantime, we understand that all patients who need KALYDECO will be provided with the drug on a humanitarian basis.

Kind Regards, Philip Watt (CEO) / Alica May (Editor) DISCLAIMER: The views of contributors, when expressed in this publication, do not necessarily reflect the position or policy of the Cystic Fibrosis Associaiton of Ireland.

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Jul/Aug 2012

Section 01:

LATEST NEWS : Page 2–9 Cystic Fibrosis Unit in St Vincent’s University Hospital Open CF Centre Updates from Around the Country Transplant News New CFAI Website Launched ECFS and Joint Symposium Overview ‘School is Fun!’ Book Launch CFfone and WikiCF Research into Experiences of 10-17yr old Children with CF -Section 02:

PHARMA & RESEARCH : Page 10–13 Letter to the Drug Regulatory Authorities in Ireland re KALYDECO Social Challenges Facing Patients with CF on their Path to Adulthood Pregnancy Outcomes in Female Cystic Fibrosis Patients Attending an Adult CF Center Factors that Increase Depression in Adults with CF Transition to Adult Care – the Qualitative Experience of Young People with Cystic Fibrosis -Section 03:

GRANTS : Page 14 CFAI Exercise Grant Scheme 2012 – Round 2 -Section 04:

GUEST FEATURE : Page 15–16 A Note about the Disability Federation of Ireland & their Social Welfare Campaign Work Louise McCann, Support Officer, Disability Federation of Ireland -Section 05:

PWCF SPOTLIGHT : Page 17–18 Life’s Biggest Questions, By Dave Spillane, PWCF, Co Kerry -Section 06:

FUNDRAISING : Page 19–29 1 in 1000 Branch Fundraising 65 Roses National Awareness Week 2012 Challenge and Community Events Thank You’s -Note: Thanks to Dave Spillane for the cover picture of this edition of Spectrum.

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LATEST NEWS

SECTION 01

PAGE 2—9

Cystic Fibrosis Unit in St Vincent’s University Hospital Open Opened 23rd July 2012 The new CF Unit in St Vincent’s University Hospital (SVUH) is finally here! Patients with Cystic Fibrosis were moved across to the new St Christopher’s Ward on Tuesday 31st July and Wednesday 1 August.

The CF Unit will be part of the New Nutley wing which cost a total of €28m, with funding provided by the Government. The new wing will have a total of 100 inpatient rooms. Of these 100 rooms up to 34 will be available to CF patients as inpatients. The remainder will benefit other patients including cancer and renal patients. In other-words, CF campaigning has helped many other patients in St Vincent’s Hospital as well as those with CF. As well as the 34 inpatient rooms there will also be a day care floor in the new Nutley wing which has a further 10 CF day-care rooms. The inpatient rooms for CF patients are large, have plenty of light with ensuite facilities and include an exercise facility a computer console and large TV. Philip Watt, CEO CFAI, stated: ‘This is a major step towards the better treatment of people with CF in Ireland. The next couple of days will be emotional as CF patients finally get proper facilities in St Vincent’s Hospital, but we still have a huge battle to improve CF services in other parts of Dublin and the rest of Ireland’.

Photograph of an inpatient room in the Nutley wing at Vincent’s.

Patients were moved into the new wing on 31st July.

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An entertainment / information console is in each room.

St Christopher’s Inpatient Ward is on Floor 2 of the Nutley Wing.

Jul/Aug 2012

Campaign Timeline In 2004 after years of frustration over the dangerous state of CF services in Ireland (including in St Vincent’s University Hospital), The Pollock Report was commissioned by the CFAI to provide an authoritative independent profile of CF services in Ireland.

In 2005 The Pollock report was published and stated; ‘At St. Vincent’s, with 304 patients the largest centre in Ireland, the position is bleak. The inpatient provision is seriously unsatisfactory, with CF patients and elderly respiratory patients cheek by jowl in tightly constrained space; segregation from an infection control point of view is difficult, and the social mix of young CF patients and elderly – some incontinent – patients, is very unsatisfactory. At times CF patients have to be admitted to other, general, wards where nursing staff do not have specific CF expertise’. The Pollock Report recommended ‘All beds for cystic fibrosis patients should be in single rooms with ensuite toilet facilities to prevent the transmission off dangerous organisms’. 34 rooms were needed in SVUH not only to meet existing patient need but to allow for a growth in numbers.

2006 SVUH designated as the National CF Adult Referral Centre but no government commitment given on if or when proper in patients and day-care facilities would be provided.

April 2007 Due to lack of progress on St Vincent’s, CFAI launched its ‘Sick Waiting’ campaign.

August 2008 As result of pressure, SVUH opens 8 ensuite rooms in the (former) St Christopher’s Ward, but this is seen by CFAI as a partial and inadequate solution. This campaign intensified in 2008/2009.

April 2009 Orla Tinsley made a ground-breaking appearance on The Late Late Show, one of many appearances on the national media before and since. The advocacy of Orla and many people with CF such as Anita Slowey, Jillian McNulty, Nathan Swan, Rory Tallon, Tomás Thompson, Patricia Duffy and many other people with CF has been a very important feature in the success of the St Vincent’s campaign.

April 2009 The then Minister for Health finally announced to the Dáil that the new unit in SVUH would proceed, but also said completion would be delayed until 2011. Under a new funding arrangement, the developer would not be paid until the project was completed.

October 2009 The HSE published its CF Services report which largely endorsed the findings of The Pollock Report including the identifying services in SVUH as a key priority.

2010 The preferred contractor for the project got into financial difficulties and a new contractor (John Paul Construction was appointed). As a consequence the target date for completion slipped again to June 2012.

January 2011 The Government and new Minister for Health, James Reilly T.D., promised that CF Unit would be expedited in its Programme for Government. CF was the only medical condition that was mentioned under capital developments in the Programme.

April 2011 An agreement was signed that committed the hospital and the Minster for Health to providing up to 34 CF inpatient rooms.

July 2012 A joint statement confirmed the number of inpatient rooms, their location, the keeping of rooms 1-2 rooms free for admissions.

August 1 2012 New CF inpatient and day care unit in SVUH becomes operation with 10 CF day-care rooms and up to 34 CF inpatient rooms.

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cf cENTRE Updates News from Around the Country Beaumont Hospital, Dublin A detailed needs analysis of the inpatient needs of adults with CF in Beaumont Hospital has been drawn up. This clearly shows that the inpatient capacity in Beaumont is insufficient to meet rising patient numbers. A dedicated ward for CF patients which would provide at least 13 single ensuite rooms should be sought as a short to medium term solution. The report has been endorsed by the Hospital and will be considered at the next NEC meeting. This work has been undertaken in partnership with a local charity, CF Hopesource.

Report Recommendations: A Synopsis On the basis of current and projected patient caseload, and drawing from European consensus on standards of care, there is a current need for 12 dedicated inpatient beds in Beaumont Hospital. This need will increase to 15 beds in the medium term and 20 beds in the long-term.

With this in mind, a number of proposed options for meeting these dedicated inpatient beds have been outlined. These outline as a minimum requirement certain specifications which include single rooms with ensuite facilities for all patients, the establishment of a dedicated CF ward, rather than individual rooms located throughout different hospital wards, and air management systems to achieve optimum infection control.

See the publications section of our website to access the full report or click here if reading online: www.cfireland.ie/index.php/cfservicesreports Mid-Western Regional Hospital, Limerick A physiotherapist has been put in place to cover CF adult inpatients and outpatient clinics and is being trained in by the existing adult CF physiotherapist. TLC4CF/CFAI will be meeting with the Area Manager in MWRH in early August.

Drogheda Hospital The premises for the outpatient centre in the Our Lady of Lourdes Hospital, Drogheda has been purchased and tenders for construction will be issued shortly.

Waterford Regional Hospital An opportunity has arisen for the refurbishment of three paediatric inpatient rooms in Waterford Regional Hospital. Philip Watt, CEO of CFAI, recently met with the Manager, the Hospital Estates Manager and the CF Paediatric Consultant, Dr Animitra Das, to discuss this project and a report will be presented to the next NEC meeting.

Mayo Hospital The build fund for the CF facility in Castlebar is progressing well and it is hoped to go to tender shortly. The Mayo Branch have arranged a meeting with An Taoiseach Enda Kenny T.D., in Mayo to update him on progress.

Cavan General Hospital There are 29 people attending Cavan General Hospital, mostly young people but also some adults. The CFAI is undertaking a needs assessment to see how dedicated facilities for people with CF could be improved. This should be ready for the next NEC meeting.

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Transplant News Progress for 2012 and Grant Support from CFAI Just to give you an idea of the activity on lung transplants, CFAI has provided 14 grants this year (from January to July 2012). Of these, 4 have been for successfully completed CF double lung transplants and 10 have been for transplant assessments. We know there have been 5 double CF double lung transplants undertaken in the Mater or the Freeman Hospital this year. The first set of lungs were put on the EVLP programme, which CFAI and ‘Second Chance’ have grant supported. This was the first time EVLP has been used in Ireland.

NEW CFAI Website lAUNCHED www.cfireland.ie We are delighted to inform members that our new website went live at the end of June. For anyone that has not yet had the opportunity to have a look, we would encourage you to go online and check it out!

On the new homepage there are easy access links that will bring you straight through to various sections, for example, ‘Grants and Services’, ‘Spectrum’ or ‘News’. The images on the homepage will also be changed regularly to reflect any upcoming events or news items of interest.

We will ensure that the website content is kept as current as possible. If there is something missing that you would like to see added, please do take the time to contact us and we will do our best to accommodate your request. A special thanks to Suzie and Alica in the National Office for all their hard work and dedication in making this such a successful project.

A snaphot of the new homepage of the CFAI.

There is lots of helpful information on the ‘Info for PWCF’ link on the homepage.

Special Thanks fROM cfai Gerry Rice and Co at Lakeside Homes, Co. Wexford The CFAI would like to extend our sincere thanks to Gerry Rice and some of the residents of Lakeside Homes, Our Lady’s Island, Co. Wexford. They approached the CFAI and generously offered the use of a number of fully equipped holiday homes free of charge to our members, for the purpose of a Respite Care holiday, during a week in June. We thank them for their gesture of support, which helped some of our member’s avail of much needed breaks.

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ecfs and Joint Symposium Overview and Photo Gallery Despite the bad weather, the Joint Symposium and European CF Conference in Dublin were a great success! Many thanks to all our volunteers who helped out on the day and ensured that everything ran so smoothly. We hope that you got the chance to attend some of the many interesting lectures and discussions that took place over the conference.

Here in the National Office we have received wonderful feedback from our colleagues abroad, thanking us for the warm welcome and memorable visit from their time here in Dublin.

In the ‘Research News’ section of this issue, we have included some of the poster presentations and workshop overviews that were present at the conference this year, some of which may be of interest to you.

Check out the photos below, taken at the Symposium, ECFS and the ‘Craic and Ceol’ evening in the Gibson Hotel, where De Dannan kept the crowds dancing and entertained late into the evening.

Philip Watt, CEO CFAI, and John Coleman, Chairperson, CFAI at the opening on the Joint Symposium on 6th June.

L-R: Mitch Messer, President of CF Worldwide, Dr Kate Russo, Queen’s University Belfast, and Alan Robertson, from Australia.

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Volunteers at the opening of the ECFS conference.

Guests and members of the CFAI who attended the ‘Craic agus Ceol’ evening in the Gibson Hotel.

De Dannan performed at the ‘Craic agus Ceol’ evening in the Gibson Hotel.

De Dannan performed at the ‘Craic agus Ceol’ evening in the Gibson Hotel.

Jul/Aug 2012

‘School is fun!’ BOOK Launch Now Available!

The Cystic Fibrosis Association of Ireland and Louise Byrne have worked together to produce two wonderful child friendly books dealing with cystic fibrosis.

The books are beautifully written and illustrated to hold a child’s interest, and come with Top Tips for parents and care providers.

They are particularly suitable for a family with a recent diagnosis of cystic fibrosis, ‘Can You See What I See?’, and for children who are starting preschool or junior school ‘School is Fun!’, which was recently launched in the Gibson Hotel in Dublin on the eve of the Joint Pre-conference Symposium on 6th June (see photos below).

About the Author Louise Byrne is parent to a 5-year old girl with CF and writes from personal experience. She is also a psychotherapist by profession and draws from her professional experience in creating a book that is balanced, positive and useful.

‘School is Fun!’, written by Louise Byrne is now available.

Order Your Copy Now To order a copy of ‘Can You See What I See?’ or ‘School is Fun!’, log on to the CFAI online shop at www.cfireland.ie. Both books cost €12.50 including postage and packaging. All proceeds of the book are going to Life Matter4CF project and the CFAI. Alternatively, email Louise directly at louisebyrnebooks@gmail. com or log on to her own website, where you will find more information about each of these titles, at www.louisebyrnebooks. com.

L-R: At the book launch of ‘School is Fun!’ was Orla Tinsley, Journalist and PWCF, Philip Watt, CEO, CFAI, Louise Byrne, Author, and Tara Talbot, Rose of Tralee.

‘Can You See What I See?’, the first book written by Louise Byrne is also available.

Philip Watt, CEO, CFAI with Louise Byrne, Author of ‘School is Fun!’.

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CF Fone For Teens and Young Adults with CF CFfone is a network of young people around the world who have cystic fibrosis. Through CFfone you can communicate and share with others who understand what life with CF is all about.

About CFfone CFfone is a website and cell phone program for and about teens and young adults who have cystic fibrosis.

It’s designed to help you manage your cystic fibrosis by providing community support and information about CF.

Through CFfone you can communicate with other people your own age who understand what life with CF is all about.

CFfone provides: ● A social network for teens and young adults who have CF ● A community of friends who have similar personal interests ● An interactive “avatar” to get answers to CF related questions ● A text messaging reminder system to help manage busy lives ● News about CF discoveries, activities and interesting people With CFfone you can register to separate age groups (11-17 and 18+) and connect with people your own age, people who are experiencing the same things you are. If you are under 18, CFfone will require your parent’s permission to join.

WIKI CF Developed by CF Europe WikiCF is an open, free website for people living with CF, their families and friends. It is created and managed by CF Europe with funding provided by Novartis. WikiCF is a place to connect and network. You can exchange practical information with others, from the latest treatments to tips on living with CF. You can also read about others’ experiences or watch an inspiring video in the multimedia section.

To maintain a good level of quality, all modifications are reviewed and sometimes edited or removed by experts selected by CF Europe. Because each participant enriches the site, the creator asks everybody to register before posting.

Log on to WikiCF and connect with other people living with CF!

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When you contribute to wikiCF, you share with people like yourself, who want to talk, listen and learn more about living with the disease. Don’t miss the chance to add your distinct voice to helping others in the fight for a better life with CF.

Jul/Aug 2012

Research into Experiences of 10-17 yr old Children with CF An Invitation from Breda Cotter, Psychologist Dear Members, I have been employed by the Department of Education and Skills, Dublin, as a teacher and psychologist for over 30 years. I am currently undertaking a Doctorate in Educational Psychology at Newcastle University, under the supervision of Professor Liz Todd. As part of this degree, I am conducting a study of identity formation among school-going children with a diagnosis of Cystic Fibrosis (CF). I have a personal interest in this subject as there is a history of CF in my family.

Ethics approval has been given for this study by Newcastle University’s Ethics Committee.

In order to progress my research, I will need to conduct face-to-face interviews with a small sample of children. These children will have a diagnosis of CF and will understand what this means for themselves and for their families. They will be at critical transitional points in their schooling, i.e. in 5th or 6th class and transitioning to second level, or in the Leaving Certificate cycle and transitioning to third level. They will also be capable of communicating their thoughts and experiences, with confidence, to a researcher.

If your child meets the above criteria and if you are interested in having him/her participate in this study, please contact me, as soon as possible, for further information. Also, please note that your child will not be identified in the study and will have the option of withdrawing at any time.

I wish to thank the CFAI for facilitating this research, the results of which may lead to greater understanding both of the influences that shape identity formation and of the factors that contribute to a well-integrated sense of identity and, ultimately, to psychological well-being among children with CF. Breda Cotter Mobile: 087 9325634 Email: breda.cotter@newcastle.ac.uk (Supervisor: Professor Liz Todd PhD MA MSc PGCE CPsychol, Professor of Educational Inclusion, School of Education, Communication and Language Sciences, Room 2.62, King George VI Building, Newcastle University, Queen Victoria Road, Newcastle upon Tyne, NE1 7RU)

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PHARMA & RESEARCH SECTION 02

PAGE 10—13

Letter from CFAI: Re KALYDECO To the Drug Regulatory Authorities in Ireland Below is a letter sent from the CFAI to the Drug Regulatory Authorities in Ireland in relation to the recently EMA-approved Kalydeco: ‘31st July 2012 The Cystic Fibrosis Association of Ireland (CFAI) welcomes the recent approval by European Medicines Agency (EMA) of KALYDECO (formerly known as VX770/ Ivacaftor), which follows similar approval by the FDA in the United States.

We note that in other countries patient organisations (as well as Clinicians) are formally invited by regulatory authorities to give their views as part of the approval process for new therapies, including the approval of drugs for rarer diseases. In the context and spirit of this emerging international good practice we write to you to in support of the approval of KALYDECO in Ireland as urgently a possible.

While we support the efforts of the NCPE/HSE-CPU to negotiate as favourable a price as possible, we contend that the immense research and development costs of drugs for rarer diseases and the linked limited opportunities for pharmaceutical companies to recoup these costs from a small patient base, will inevitably make drugs such as KALYDECO costly.

We call for this innovative drug to be assessed fairly and not to be prejudged on fear of potential cost. We note with concern that unlike the UK, Germany and Australia, Ireland does not have a tailor made system for assessing rarer disease drugs. We would ask that this gap/weakness in the assessment system for new therapies is taken into account.

In the interest of equity and equality we would urge the assessment of KALYDECO would give due consideration because of: a) The proven impact of this innovative therapy, the first to impact on the underlying causes of CF of those with the G551d mutation b) The fact that this therapy has proportionally more benefit in Ireland than anywhere else in the world c) There are already a number of Irish patients receiving and benefitting from KALYDECO because of being involved in extended clinical trials or on a humanitarian basis d) The need to assess this impact of this drug not only in terms of specific clinical outcomes/ cost benefit analysis but also on the impact on overall quality of life, in line with emerging international good practice.

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Jul/Aug 2012

Background Ireland has the highest proportion of people with CF in the world and also has the highest proportion of PWCF with the G551d mutation.

Globally, 3-4% of people with CF carry the G551d gene mutation, whereas in Ireland the proportion is around 10%. In the south west of Ireland this proportion is greater, over 20% in some places.

Please note that this letter has been prepared independently by the CFAI and with no input from Pharmaceutical interests.

Yours sincerely Philip Watt CEO CFAI’

Next are a few selections of the posters and presentations from the ECFS Conference in Dublin:

Social challenges facing patients with CF on their path to adulthood Research in Belgium S.S. Wanyama1,2, H. Jansen1,2, C. Sevens2 , A. Malfroot2, C. Knoop3, A. Depoorter2. 1Institute of Public Health, Health Services Research, Brussel, Belgium; 2Vrije Universiteit Brussel, Department of Public Health, Brussels, Belgium; 3Universit´e Libre de Bruxelles, Unit´e de Transplantation Cardiaque et Pulmonaire (UTCP), Bruxelles, Belgium Introduction: Steadily improving life expectancy for people with CF has brought new developments in the course of disease. This study looks at some social challenges facing CF patients in Belgium.

Methods: Patients who visited an accredited centre in early 2007 were eligible. Socioeconomic data including schooling and access to work were collected via questionnaire.

Results: 294 out of 402 recruited patients participated, 57.3% were adults (18+). Among 245 respondents 6 years old, 38.4% had repeated a class at least once, 16.3% at least twice while 29.8% had requested extra teacher support (at home or school). Out of a total of 155 who had completed school, 43.5%, 25.3%, and 11.0% had respectively a secondary, college or university/postgraduate diploma. Among adults, 47.0% were working, 13.4% had a contract stopped or interrupted while 46.8% had been dismissed at least once. Further, 65.9% claimed CF influenced their working situation, for 47.2% a cause of reduction in working hours, for 19.7% dismissal, for 25.2% lack of promotion and in 2.4% CF influenced their recruitment.

The reasons given for lack of employment were health related in 36.6%, intensive and time consuming therapy for 15.9% while discrimination due to CF was felt by 7.3%.

Conclusions: With CF patients living longer and seeking more independence, policy makers need to proactively reduce the obstacles they face so that they can participate fully in the society.

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Pregnancy outcomes in female cystic fibrosis patients attending an adult CF center Research in Dublin C.M. Carroll1, C.G. Gallagher1, E. McKone1. 1St. Vincent’s University Hospital, National Referral Centre for Adult Cystic Fibrosis, Dublin, Ireland Background: With improved survival, pregnancy and motherhood is now a much more realistic option for many women with cystic fibrosis. The purpose of this study was to review our experience of pregnancy in a large adult cystic fibrosis centre.

Method: Study design was a retrospective cohort study, with clinical data abstracted from patients medical notes. Variables of interest included age at most recent pregnancy, FEV1 (% predicted) and BMI pre-pregnancy and at end of follow-up, diabetic status, CFTR genotype and presence of pancreatic sufficiency.

Results: A total of 21 females were included in the study. Average follow-up was 8 years. Three patients died during the follow-up period. A total of 35 babies were born to 21 CF mothers (range 1-5 pregnancies per person). There were two sets of twins. Mean age at most recent pregnancy was 30 years old (range 21–38). Patients’ FEV1 varied in severity from 24%–105% predicted.

Only 12 (54%) women had a severe CFTR genotype (two class I-III mutations) which is much lower than the CF population attending the CF center. Twenty-nine percent were pancreatic sufficient. Two women had CF-related diabetes prior to becoming pregnant. Eighteen women conceived naturally with 2 requiring intrauterine injection and one underwent IVF resulting in the birth of twins.

Interpretation: Pregnancy in women with CF is common and has successful outcomes even in patients with very advanced CF lung disease.

Factors that increase depression in adults with cF Research in the UK S. Talbot1, S. Pryce1, D. Bilton1, S. Madge1. 1Royal Brompton Hospital, Respiratory Medicine, London, United Kingdom Introduction: Life expectancy in CF is improving with a UK median life expectancy of 41.4 yrs (2010). However, higher rates of anxiety and depression have been associated with increasing age.

Aim: To evaluate the prevalence of depression and anxiety in adults with CF attending the Royal Brompton Hospital and to identify factors associated with both.

Methods: Over a one year period patients completed the Hospital Anxiety and Depression Scale (HADS) while attending outpatients. Additional demographic data were collected including level of education, employment status and measurements of health (e.g. FEV1, BMI, presence of CFRD, Portacath, pneumothorax or haemoptysis).

Results: Participants n = 326, age - mean 30.9 yrs (SD 10.26), males n = 171 (48%), FEV1 mean 58% (SD 24.3). HADS: Total population - anxiety score mean 6.42 (SD 4.35), depression score - mean 3.51 (SD 3.24), total number with depression n = 41 (13%), total number with 12

Jul/Aug 2012

anxiety n = 127 (35%). Factors included in regression analyses included measurements of health, employment and education. Regression analyses show a significant association between increasing age (p<0.005), decreasing health status (p<0.001) and employment status (p<0.001) with depression. Anxiety with female gender (p<0.005) was also significant.

Conclusions: This large, single centre study shows a suprisingly low incidence of depression with a higher incidence of anxiety, particularly in females. However, overall scores for both are low - anxiety (6.42) and depression (3.51) (mild range 8-10). Factors that have a significant negative impact on depression are age, FEV1 and employment status.

Transition to adult care â&#x20AC;&#x201C; the qualitative experience of young people with cystic fibrosis Research in the UK S. Tierney1, S. Kirk1, C. Deaton1, J. Biesty2, A. Jones2, H. Oxley2. 1University of Manchester, School of Nursing, Midwifery and Social Work, Manchester, United Kingdom; 2Manchester Adult Cystic Fibrosis Centre, Wythenshawe Hospital, Manchester, United Kingdom Background: As life expectancy has improved, almost all young people with CF (YPWCF) transfer to adult care. How this event is experienced by these individuals has been little investigated via qualitative methods. A study using this research approach was conducted to explore the topic in-depth.

Methods: Participants were recruited from a UK adult CF centre. First appointments at this centre were observed by a researcher. YPWCF were also interviewed about their experiences of transferring. Framework analysis was used to manage and interpret data. Findings were discussed by paediatric and adult practitioners at an away-day.

Results: Observational data were collected from 12 YPWCF (6 males) and interviews conducted with 19 (12 males). Analysis identified an overarching concept of loss and growth within 3 themes: Contemplating age and gender norms, an outsider entering an established system and transfer bringing CF to the fore.

Discussion: Data highlighted the often demanding nature of first visits to the adult unit and the need for better preparation within paediatrics. Transfer involves positive and negative elements (growth and loss), both of which need to be addressed in planning transition, in individualised ways, depending on specific needs of each YPWCF. Findings have informed several user directed service improvements within local paediatric and adult teams.

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GRANTS

SECTION 03

PAGE 14

CFAI Exercise Grant Scheme Round 2 Opens 5th September Background and Purpose of the Exercise Grant In order to alleviate the financial burden on individuals and families with CF, and to encourage and facilitate PWCF to increase their physical fitness, the CFAI initiated a pilot Exercise Grant Scheme in 2009. The purpose of this scheme was to provide financial assistance to PWCF for gym membership fees, purchasing home exercise equipment, fitness lessons etc. Due to the positive feedback received from the pilot scheme and the growing scientific evidence supporting physical fitness for PWCFs, the CFAI has continued to run this grant scheme and over 500 grants have since been awarded to members.

How much funding is available?

The maximum value of this grant is €300 for PWCF over 16 years of age, and €250 for PWCF under 16 years of age.

How do I apply?

The Exercise Grant Application form will be available for download on our website on 5th September. This must be comlpeted, accompanied by a a receipt or official quotation (to show what it is you have bought, or what it is you intend to buy), and sent to the CFAI National Office by a particular deadline.

What is the deadline for applications?

The deadline will be announced in early September on our website when the application form is made available.

Where can you get more information about this call?

Log on to www.cfireland.ie and click on the ‘Grants and Services’ section. The applicaton forms and guidance notes will be available for download under the ‘Exercise Grant’ tab on Sept 5th.

For further information about this call, please contact Alica May, Services and Information Officer t: 01 496 2433 e: amay@cfireland.ie 14

Jul/Aug 2012

GUEST FEATURE

SECTION 04

PAGE 15—16

A Note about the Disability Federation of Ireland & their Social Welfare Campaign Work

By Louise McCann, Support Officer, DFI Disability Federation of Ireland (DFI) is the national support organisation for voluntary disability organisations in Ireland who provide services to people with disabilities and those with chronic health or disabling conditions. The Cystic Fibrosis Association of Ireland has been a valued member of DFI since 1983 and I am proud to be the designated support officer.

All organisations are different; however, the majority strive to make Ireland a more equal and inclusive place for the people they represent. Our members cross all aspects of disability and chronic conditions including those representing wheelchair users, intellectual disability, hearing and visual impairment as well as other conditions such as epilepsy, migraine, arthritis, kidney disease, post-polio disease and acquired brain injury to name but a few! Overall, there are over one hundred members of DFI right across the country.

While every organisation is different, I am always struck by how people with chronic or disabling conditions often encounter similar barriers to health and social services. In DFI, we try as much as possible to gather evidence of these issues and channel the information to the relevant authority. We lobby across all government departments including health, social protection, education, training, transport, sport, justice and many more.

The Department of Social Protection Disability Consultative Forum One of the key areas of interest to DFI and the Cystic Fibrosis Association of Ireland is Social Protection and Employment. In DFI, I am the Support Officer with lead responsibility for social protection and employment. In this role I try to keep up-to-date with new developments, write submissions, meet with relevant Ministers and members of the Oireachtas and represent DFI at the Department of Social Protection Disability Consultative Forum. Volunteers and staff within our membership, such as Tomás Thompson, CF Advocate, CFAI, provide me with important information on the gaps in policy and experience on the ground that I can then bring back to the forum.

The consultative forum is a particularly useful means for us to meet with department officials and relay any policy issues that we hear about from our members relating to social welfare and employment. It meets four times a year and is made up of representatives from Department of Social Protection and (former) FÁS, HSE, National Disability Authority, Citizens Information Board and voluntary disability organisations. The following are some of the current issues and concerns that DFI continue to raise with the department through the forum:

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Partial Capacity Benefit From 13 February 2012 Partial Capacity Benefit replaces the previous exemption arrangements where people on Illness Benefit or Invalidity Pension could get permission to work part-time (known as an exemption) for rehabilitative or therapeutic purposes and keep their full social welfare payment.

Those who currently have this permission will not be affected until their permission comes up for review. At that stage, the exemption will no longer be available to them but they have the option of applying for Partial Capacity Benefit. There is no requirement that the work a person does while on Partial Capacity Benefit has to be for rehabilitative or therapeutic purposes. Participation on the Partial Capacity Benefit scheme is voluntary.

The personal rate for Partial Capacity Benefit is based on whether capacity for work is assessed as moderate, severe, or profound. As this is a new scheme DFI is very interested in hearing feedback from anyone on how the scheme is working out for them.

Budget 2012 Proposals re Domiciliary Care Allowance and Disability Allowance It was announced in Budget 2012 that the age of entitlement for Domiciliary Care Allowance would be extended from 16 years to 18 years of age. This was to compensate for the raising of the age of eligibility for Disability Allowance to 18 years. In the end, these measures were not implemented following public concern by parent groups and disability organisations. Since then, a working group was established on the 27th June 2012 to formally review the domiciliary care allowance scheme.

In addition, it was announced in Budget 2012 that new claimants of Disability Allowance aged under 25 years would have their payment reduced from €188 per week to €100 for people aged 18–21 and to €144 per week for people aged 22–24. This measure was also paused pending a review by an Advisory Group on Tax and Social Welfare. DFI sent in a submission to the Advisory Group which you can view on our website: www.disability-federation.ie/ under the Department of Social Protection.

The run up to Budget 2013 has already begun and DFI continue to lobby the relevant stakeholders including the elected members of Government and Department officials on important policy issues. I look forward to my continued work with the Cystic Fibrosis Association in the future.

Please link in with Tomás Thompson, CF Advocate in relation to social protection issues you are experiencing and he can feed them into me. You can contact Tomás at t: 087 9323930 or e: tthompson@cfireland.ie.

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Jul/Aug 2012

PWCF SPOTLIGHT

SECTION 05

PAGE 17—18

Life’s Biggest Questions

By Dave Spillane, PWCF, Co Kerry My name is Dave Spillane, I’m 23 years old and from Co. Kerry.

I was diagnosed with Cystic Fibrosis when I was 3 months old. My parents had never even heard of CF and were completely shocked but they did everything possible to ensure I stayed as healthy and active as I could, even if I was reluctant to do my treatments and physio!

I was always an active child and can remember winning lots of gold medals for running. As I got older I began participating in more sports, football, soccer, running, a bit if everything. I believe a combination of sports and sticking to the daily routine of treatments has been a huge factor in what has kept me so well throughout the years. During my teenage years I was in a few bands and I think that singing also helped to strengthen my lungs.

‘I believe a combination of sports and sticking to the daily routine of treatments has been a huge factor in what has kept me so healthy’

Above, Dave working on one of his paintings.

As well as being a fitness enthusiast and music lover, I’ve always had a passion for art, particularly drawing. It is something I’m good at and which kept me occupied during hospital visits and stays whenever they came along. During my school years I won many art competitions for my work but never really took it seriously – it was just something that I could do to kill the time during hospital visits. Then a few years ago I started painting (just to try something new) and fell in love with it. I found it a great way to express myself and a good way to take my mind off the daily struggles of living with CF. Also the great feedback from friends and family made me believe that this was the direction I wanted to head in life.

Living with CF has become second nature to me as I have never known any different. Obviously there have been times when it has driven me crazy and gotten me down, but you keep battling through it and try to stay as positive as you can.

A piece entitled ‘Health’.

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David at the exhibition with his piece entitled ‘Two Faced’.

A piece entitled ‘Life’s Biggest Questions’.

In July this year after months of hard work and planning I completed my first solo exhibition “Life’s Biggest Questions” in the prestigious Blue Leaf Gallery in Dublin. It showed off my own painting technique, which I call “squigs”, and a few abstract women. It was a great night and the feedback I received was amazing and a enormous thank you to Ciara the gallery owner for making this possible. Since I began to paint it was always something I had wanted and to have reached that goal in a short space of time I can only say I’m delighted. Also 10% of the money I’ve made from the exhibition will go to CFAI and I hope this will go towards improving the facilities for PWCF in Ireland.

In the future I’d love to become successful through my art and continue to contribute to CFAI. For anyone wanting to check out my work, you can do so via www.facebook.com/ DAVESPILLANEART / http://fineartamerica.com/profiles/david-spillane.html Also check out Blue Leaf Gallery at www.blueleafgallery.com

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FUNDRAISING

SECTION 06

PAGE 19—29

Fundraising in general continues to present many challenges in the current economic climate.

CFAI are, however, delighted to report that the support of our volunteer fundraisers and donors continues to provide us with the necessary resources to provide a range of services to the Cystic Fibrosis community in Ireland.

We are deeply appreciative of such generous support.

1 IN 1000 RUN DOWN

By Ciara Enright, 1 in 1000 Co-ordinator Congratulations!

We hope you have all recovered from your participation in the Flora Women’s Mini-Marathon for Cystic Fibrosis. It’s hard to believe it’s been over a month since our 1000 plus women (and our few men suited and booted) took to the streets of Dublin to raise much needed funds for Cystic Fibrosis. If you want to reminisce why not head online to http://www.facebook.com/1in1000 and check out our photos from the Harcourt Hotel ‘1 in 1000’ base. If you have any photos you would like to share with the team to be posted online please email them to runningforcf@cfireland.ie.

We want to say a big thank you to everyone who has fundraised and sent in their sponsorship which is climbing each day. Here are the details for those yet to lodge their donations.

1. For direct lodgements: Bank: AIB Account Name: One in One Thousand Sort Code: 93-10-71 (It is essential that you put your name in the narrative section of the lodgement slip so that funds can be receipted accordingly) 2. Send a cheque to 1 in 1000, CFAI, 24 Lower Rathmines, Dublin 6 making it payable to 1 in 1000 (please write your name on the back of the cheque) 3. My Charity donations will come directly to 1 in 1000 CFAI 4. If you are on a team please give your sponsorship money to your team leader to lodge 5. Make an online donation at www.cfireland.ie (you must include 1 in 1000 in the narrative) Well done to all who participated in the ‘1 in 1000’ campaign 2012. Let’s keep the donations from your fantastic fundraising efforts coming in Ladies! Finally we hope to see you all next year on June 3rd 2013 once more helping children and adults with Cystic Fibrosis in Ireland.

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Jul/Aug 2012

bRANCH Fundraising Snapshot from Around the Country TLC4CF Update

By Katie Murphy, Regional Development Officer, TLC4CF With the construction of the new state of the art unit for adult CF patients in the MidWest underway, TLC4CF have been busy over the past few months fundraising to ensure we get this project over the finish line!! There have been numerous events taking place across the three counties (Tipperary, Limerick & Clare) over the past two months, but two of our main events were the Aherlow House Hotel Moonlight walk and TLC4CF’s first ever 105 Marathon Relay. We are delighted to tell you both events were extremely successful and we would like to thank everyone who took part and supported these fundraisers.

Munster Rugby legend Jerry Flannery preparing to run a lap of our 105 Marathon.

L-R: Isobel Flynn, Caitriona Hayes (TLC4CF), Mark Ryan and Dominic Hayes at the launch of the Aherlow House Hotel Moonlight Walk in aid of TLC4CF.

Participants in TLC4CF’s first ever Relay Marathon which was completed in 3hrs 43mins & 19 secs – Congratulations to all involved.

65 Roses Ball

By Martha Reilly, Drogheda Branch The first ever ’65 Roses Ball’ took place in The Grove House, Dunleer, Co. Louth on Saturday 28th April. The Ball, was in aid of the new outpatient Cystic Fibrosis Unit in Our Lady of Lourdes Hospital, Drogheda.

It was hosted by Mal and Martha Reilly from Dunleer. Mal was born with Cystic Fibrosis and attended Our Lady of Lourdes Hospital up to the age of 26 when he moved to Beaumont services where there is a specialised outpatient unit.

There was a champagne reception in the foyer of the Grove from 7:30 followed by a delicious four course meal served in a purple and white decorated ballroom. Even the serviettes were purple as were the ties worn by the waiting staff!

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Speeches from Philip Watt, CEO Cystic Fibrosis Association of Ireland and Martha Reilly, host, both highlighted the importance of the opening of the new Cystic Fibrosis outpatient unit in Our Lady of Lourdes Hospital. Philip indicated that the Association anticipate the Unit opening for Summer 2013. This will make a world of difference for all those living with Cystic Fibrosis in the Louth/Meath/ Cavan/Monaghan area, as Martha mentioned in her speech.

The after dinner entertainment was provided by comedian Alan Shortt who was hilarious in his Mal and Martha Reilly at the event. portrayal of Michael Noonan and President Higgins.

He presided over the raffle and auction. 12 raffle prizes including stays in various hotels, an iPod Nano and top prize of an IPad 3 were highly sought after. The auction provided huge entertainment with battles for a signed Irish rugby jersey fetching €850 and a Louth jersey earning a respectable €350. The top auction prize of the night was a 2 night stay in the 5 star Fitzwilliam Court Hotel, Stephen’s Green with tickets to the Late Late Show and a meal in a top Dublin restaurant which sold at €850.

The 200 guests danced the night away to the incredible band ‘10th Avenue’ however, the show was stolen by the host Mal Reilly who gave a fantastic performance of various songs filling the dance floor until the very end of the night.

Mal and Martha are overwhelmed with the support they received from their family, friends and local community of Dunleer with donations still coming in every day.

To date the ‘65 Roses Ball’ has raised just short of €15,000. All money raised will go towards the new Cystic Fibrosis outpatient Unit in Our Lady of Lourdes Hospital.

Photos by Joe McDermott Cheque Presentation Cllr. Noel McBride, Mayor of Donegal presenting Mr. Paddy Rooney, on behalf of the CFAI with a cheque for €1,126.43, part of the proceed from the Donegal Lord Mayor’s Ball held in the Rosapenna Hotel, Downings last March.

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Jul/Aug 2012

65 Roses National Awareness Week 2012 Thanks to All We would like to thank all the volunteers who helped support our Awareness Week in April; we would not be able to do this without you all so far we have raised €54,324 with more funds to come in!

Challenge Events Looking for a Challenge?

65 Mile Kayak for CF Waterford Emergency Services Kayak For Cystic Fibrosis – unfortunately we had to abort after 10-15km for safety reasons. We will hopefully try again with 100% perfect weather conditions.

Please support the guys in raising funds. Their My Charity page is www.mycharity.ie/event/ waterfordcysticfibrosis/ If you would like to get involved call Alan Magner on 087 9257105.

Trafalgar Square to Puck Fair Cycle – 4th to 10th August Fancy joining the cycle team for a day or two? Here’s the itinerary... ● Saturday 4th Aug: London – Chipping Norton: 120km ● Sunday 5th Aug: Chipping North – Church Stoke: 145km ● Monday 6th Aug: Church Stoke – Penrhyndeuraeth: 112km ● Tuesday 7th Aug: Penrhyndeurath – Holyhead: 80km Ferry from Holyhead, Wales to Dun Laoghaire, Ireland. ● Wednesday 8th Aug: Dublin – Abbeyleix: 96km ● Thursday 9th Aug: Abbeyleix – Adare: 119km ● Friday 10th Aug: Adare – Killorglin: 92km

Cycle from Trafalgar Square to Puck Fair.

See you at Puck Fair!!

No minimum donation is required to participate, however cyclists are asked to raise £250/€300.

A fully equipped support vehicle will accompany them throughout. For more details contact Ray Crowley email: crowleyray@gmail.com Gaelforce West – 18th August Gaelforce West is a multi-sport adventure race involving cycling, running, hiking and kayaking.

The course of approximately 67km stretches from the stunning Glassilaun beach to Westport.

En route there are some significant obstacles to cross, including Killary Harbour and the famous holy mountain of Croagh Patrick.

For a sponsorship pack, please contact Rosie in the National Office t: 01 4962433 or e: rbegley@ cfireland.ie, or Martin e: mcahill@cfireland.ie and for more info: www.gaelforceevents.com.

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Joe Crowley Camino Walk – 24th August Support Joe Crowley’s Camino walk of 800km for the Cystic Fibrosis Association of Ireland and the Pharmacy Benevolent Fund.

Joe Crowley (Pharmacist) will be walking the Camino de Santiago de Compostela. 100% of the funds raised will go towards these two important causes and will be divided equally between the two charities. You can also support the Cystic Fibrosis Association of Ireland and the Pharmacy Benevolent Fund directly by sending a cheque to the ‘Joe Crowley Camino Walk c/o Cystic Fibrosis Association of Ireland, 24 Lower Rathmines Road, Dublin 6’.

You can also donate online at www.cfireland.ie –please to remember to mark your donation ‘Joe Crowley Camino Walk’.

Dingle Marathon – 1st September Entries are now open at link below! For a sponsorship pack, please contact Rosie in the National Office t: 01 4962433 or e: rbegley@cfireland.ie, or Martin e: mcahill@cfireland.ie For more info: www.dinglemarathon.ie/register.html

The Dingle marathon will take place on 1st September.

Lugathon 2012 – 15th September This year the CF Lugathon takes place on Saturday 15th September. Once again, we hope to make this event a memorable day out for all our participants. This event involves a hill-walk up Lugnaquilla Mountain, the highest mountain in Wicklow. The view from the summit is amazing.

Soup and sandwiches will be available in Fentons of Donard afterwards.

The event is in its fifth year and has previously proved successful in raising much needed funds to finance the provision of isolation facilities in our hospitals, so vital in the prevention of crossinfection of CF patients.

We encourage you to come and join us, and also invite your friends, for this event. We ask participants to raise a minimum of €150 per person/family for Cystic Fibrosis. For a sponsorship pack, please contact Rosie in the National Office t: 01 4962433 or e: rbegley@cfireland.ie, or Martin e: mcahill@cfireland.ie

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Jul/Aug 2012

North Clare TLC4CF Cycle – 22nd September On Saturday, 22nd of September 2012, join TLC4CF in the North Clare Charity Cycle.

Choose one of three routes: ● 120km Challenge Scenic Burren & Atlantic Coast, Fr. Teds (€30) ● 40km or 10km Cycle Family, Leisure Cycle – Scenic Burren & Fr. Teds (€10) Starting at 10.30am, Kilinaboy National School and registration starts at 9am.

NORTH CLARE CHARITY CYCLE

Register online today at www.tlc4cf.com or contact Marcella for more information: marshal12300@ gmail.com

on Saturday, 22nd September 2012 3 Routes, Refreshments, Goodie Bag

in aid of TLC4CF

CySTiC FiBRoSiS

10:30am start, Kilnaboy National School Registration 9:00am

Put on your kit, Cycle a bit, Feel fit….

online registration at www.tlc4cf.com Go to Events, click on - “North Clare CF Cycle”

Entry fee: €30, 10k - €10 120km Challenge Scenic Burren & Atlantic Coast, Fr. Teds 40km or 10km Cycle Family, Leisure Cycle Scenic Burren, Fr. Teds

Contact: Seamus: 087-8222750 • Marcella: 086-8390942 • Sheila: 086-1086286 Gmail: cyclenorthclare.tlc4cf@gmail.com • facebook: North Clare CF Cycle

www.tlc4cf.com

Design & Print

Supported by

Realprint 065 6844545

Put on your kit, Cycle a bit, Feel fit...

Please help raise funds by filling a Sponsorship Card

One of the most successful cyclists of all time, Sean Kelly (above) supporting TLC4CF for the North Clare cycle.

Cork Women’s Mini Marathon – 23rd September For a sponsorship pack, contact Rosie in the National Office t: 01 4962433 e: rbegley@cfireland. ie, or Martin e: mcahill@cfireland.ie. Further information from www.corkminimarathon.com The Paddy Kierans Memorial Walk – Poland 23rd September to 4th October We still have places available for our Paddy Kierans Memorial Walk 2012.

The exciting location is Krakow and Zakopane: a destination reachable with a short flight but that will no doubt be an unforgettable experience.Each walker is requested to fundraise €2,560 (Single supplement applies on request €260) for an unforgettable trip in the Polish culture. For information please contact Rosie in CF House at 01 4962433 or one of the Committee members at one of the following numbers: Bernie 087 2353319; Julia 087 9911331; Frank 086 6060261 or Tony 086 25112731.

Everest Base Camp Trek – 1st to 14th October Are you up for a challenge? Join the Irish Cystic Fibrosis Team to Nepal! For a sponsorship pack, please contact Rosie in the National Office t: 01 4962433 or e: rbegley@cfireland.ie, or Martin e: mcahill@cfireland.ie To Hell & Back 10k Challenge – 7th October Could this be Ireland’s toughest 10km challenge?

WHAT? Challenging 10k run that will test your boundaries WHEN? Sunday 7th October 2011, start: 12.30pm WHERE? Kilruddy Estate, Bray, Co. Wicklow 25

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WHO? Anyone who likes a challenge HOW MUCH? €39 (indiv.) €136 (team) HOW TO REGISTER? Log onto www.hellandback.ie For a sponsorship pack, please contact Rosie in the National Office t: 01 4962433 or e: rbegley@ cfireland.ie, or Martin e: mcahill@cfireland.ie Dublin Marathon – 29th October Join our Dublin Marathon CFAI Team. The Dublin Marathon is one of Ireland’s biggest and best marathons, which some runners are known to use as a training run for New York.

How to join our team: Enter the Dublin Marathon online at www.dublincitymarathon.ie or for a paper application form contact the Dublin Marathon office on 01 6232250.

Fundraising pack consists of: ● CFAI running Jersey ● Sponsorship cards ● Fundraising tips and ideas ● See the marathon website for training guidance.

For a sponsorship pack, please contact Rosie in the National Office t: 01 4962433 or e: rbegley@ cfireland.ie, or Martin e: mcahill@cfireland.ie New York Marathon 2012 – 4th November Join our New York City Marathon Team. Places are almost full! For a sponsorship pack, please contact Rosie in the National Office t: 01 4962433 or e: rbegley@cfireland.ie, or Martin e: mcahill@cfireland.ie. Further information from www.nycmarathon.org

Community Events Upcoming The National Ploughing Championships, Enniscorthy, Wexford – 25th & 27th September We are looking for volunteers to help sell Pins and Trolley Coins at the CFAI stand please contact Rosie in the National Office t: 01 4962433 e: rbegley@cfireland.ie, or Martin e: mcahill@ cfireland.ie if you would like to get involved.

The Rose of Tralee Festival Would you like to see the next Rose of Tralee crowned for 2012/2013? Why not volunteer for CFAI at the final selection night in the Dome on the 21st of August.

If you are in the area and available to help CFAI sell raffle tickets to raise much needed funds please email Ciara Enright e: cenright@cfireland.ie for more information.

24 Hour DJ Set in Aid of CFAI – 24th & 25th August A 24-Hour DJ Set will be held at the the Rock GAA Clubhouse Mountmellick, Co Laois, starting at 12pm. Niall Dunne and three of the Midlands top DJs will be hosting the 24 hour DJ set in aid of CF. Tune into Flirt 87.6 or log on to Flirt FM at www.flirtfmireland.com for more information.

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Jul/Aug 2012

Thank you!

Acknowledgements Bloom Garden Festival 31st May – 4th June CFAI were delighted to be chosen by Ms. Erika Reeves, a horticulturalist from Carrick-on-Suir, as the beneficiaries of her design skills through her creation of the outstandingly beautiful ‘Cystic Fibrosis Garden’ at Bloom 2012. Bloom is now its 6th year and achieves on average 90,000 visitors annually.

Photo of the beautiful ‘Cystic Fibrosis Garden’ at Bloom 2012. The garden won the Silver Gilt Award at the festival this year.

The Garden was sponsored by Dundrum (Tipperary) Nurseries, Stonemerchant of Jordanstown, Castle Paints, RDC Paving of Naas, Merck Sharpe and Dohme and of course Bord Bia who organise Bloom each year.

Many thanks also to Siobhan Rooney and friend, Chris Kinsella, and Bernie Priestley for kindly volunteering their services to man the ‘CF pagoda’ throughout the event, raising approximately €2,000 in the process.

Erika’s creation won a Silver Gilt Award at the festival, which is an indication of the skills of this young lady. Thanks to our supporters who texted to Sunday’s competition, the garden also won the accolade of “Peoples’ Choice Garden of the Year”.

Much media interest in the garden, together with a large footfall, no doubt has once again boosted awareness of CF in the community at large.

Thank you, Erika.

Erika being interviewed by RTÉ Lyric FM in the presence of one of the judges of the competition.

Video of the Show Garden at Bloom 2012: www.youtube.com/watch?v=rvIZFFeB8JI

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Congratulations, Cian, on successfully Reaching the Summit of Mount Everest Cian Ó Brolcháin, a 33-year-old finance professional, who led the ‘32 Steps to Everest’ in aid of the ‘Lung Transplant Fund’ succeeded in climbing Mount Everest, reaching the summit on 25th May. Cian described in a phone call home how it was “tough” but he felt “pretty good”.

This is an indescribable feat and many congratulations to Cian on behalf of CFAI.

Cian Ó Brolcháin holding the ‘Ireland to Everest’ flag on reaching the summit of Mount Everest!

Cian, who is also a professional tennis coach, undertook his climb with the Jagged Globe commercial expedition company in aid of the Cystic Fibrosis Association of Ireland and its drive to improve lung-transplant facilities.

Lanzarote Ironman Challenge – Team Report We are delighted to report we had 7 Ironmen who swam, cycled and ran on the Manx Lanzarote Ironman Team and together have raised an incredible sum for Cystic Fibrosis Research.

The leader in the team, who finished in 12 hours 12 minutes, was Stephen McNeill, followed by Graeme Saunders in 12 hours 47 minutes, next was Allan Thompson in 13 hours 48 minutes, Hamilton Matthews 14 hours 9 minutes, Jonathan McNeill 14 hours 13 minutes, Matt Lawson 14 hours 41 minutes and Robert Parker 15 hours 25 minutes. All well inside the cut off time of 17 hours.

Lanzarote Ironman participants; sincere thanks to each and every one of you.

An incredible amount of training went into the preparation to enable each of them to complete this course, where they had to swim 3.8km, cycle 180km and finally run a full marathon!

Saturday was a long day, up by 4.30am; the start was off the beach in Puerto Del Carmen at 7am, and then hours of arduous physical effort, finally arriving at the finish line from 7pm – 10.30pm. I can safely add the families and support group also felt they had a marathon day!

The wonderful news is that to date a sum totalling approximately £36,500 has been raised for research for a genetic cure for Cystic Fibrosis. We hope this sum will be greater when friends realise the immense effort that this team together have made. We would like to thank everyone who has already supported this special event.

‘Life’s Biggest Questions’, an Exhibition by Dave Spillane PWCF Took place on 13th 14th & 16th July at BlueLeaf Gallery, Dublin 2. Dave Spillane is a 23year old talented artist from Co. Kerry and person with Cystic Fibrosis. Dave has become an accomplished artist and painter and has developed his own unique style of painting called “squigs”. 10% of the total sales from the event will be donated to CF Ireland. See our ‘PWCF Spotlight’ section in this issue for more information.

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Jul/Aug 2012

Jillian McNulty – Longford Spar Spartan for 2012!

Well done to Jillian McNulty (PWCF) who just completed the Fingal 10k at the weekend!

Jillian got chosen as the Longford Spar Spartan for 2012! Thank you for all your votes! Jillian will be participating in Dublin City Marathon in October!

AOIFA – National Flower Festival “Circle of Life” The Association of Irish Floral Artists’ National Flower Festival “Circle of Life” was held in Clonakilty town on June 22nd – 24th 2012. This festival supported the CFAI. All three churches in the town were decorated by over 200 floral artists from all over the country. The Opening Ceremony was held in the Church of the Immaculate Conception on the Friday night. The festival was officially opened by Mr. Barry Shanahan of Shanahan’s Nurseries and Garden Centre.

All were delighted by Barry, a true gentleman of horticulture and he met many people from near and far whom he had helped when they were beginning their gardens. There was a reception sponsored by local hotels and restaurants in the Parish Centre and everyone then took time to visit all the churches and view the wonderful exhibits.

Carmel O’Driscoll, Assistant Secretary AOIFA, Una Fleming Chairman AOIFA, Eileen O’Brien Treasurer AOIFA, Barry Shanahan, opened Festival, Margaret O’Donovan Secretary AOIFA, Carol Bone President AOIFA, Martin Cahill CFAI.

Saturday was a busy day as the festival was visited by 25 bus tours. Everything ran smoothly due to the help of local men and the busy Festival Committee. Refreshments were available in the Parish Centre and trade stands were in the Parochial Hall. A drizzle during the afternoon did not deter the visitors. Saturday evening we had a concert “A Time to Celebrate” in the Church of the Immaculate Conception and everyone agreed that it was the highlight of the weekend. Sunday was just as busy as Saturday and the sun shone for the day which made it very pleasant. The closing ceremony was held in Kilgarriffe, Church of Ireland on Sunday at 5.30pm. This was followed by the Festival Raffle and in a very short length of time all the flower exhibits disappeared from the Churches.

AOIFA were very pleased to hold this festival in Clonakilty and are indebted to the people of the town for their help, support and welcome. AOIFA is also delighted to be able to help the Cystic Fibrosis Association of Ireland, a very deserving charity.

AOIFA, through their two-year national fundraising campaign, have raised a total of €86,000 for Cystic Fibrosis, and we are indeed indebted to them for that.

Midlands Branch Donation Midlands Branch of the CFAI received a donation of €100 from Moate Community School, Church Street, Moate, Co. Westmeath.

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About the Cystic Fibrosis Association of Ireland (CFAI) The CFAI 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.

The CFAI 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 will be completed ● Providing funding towards new CF Units around the country including Crumlin, Drogheda, Galway, Mayo 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 ISSN2009-4132 2009-4132 ISSN 2009-4132

Cystic Fibrosis Association of Ireland t: +353 1 496 2433 CF House f: +353 1 496 2201 24 Lower Rathmines Road e: info@cfireland.ie

Dublin 6 w: www.cfireland.ie Ireland Company Reg: 449954 30

Charity: CHY6350