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Mar/Apr 2011

SPECTRUM

Published by the Cystic Fibrosis Association of Ireland

IN THIS ISSUE:

• 65 Roses Week & Annual Conference • Progress Overview for 2010/11 • Policy Developments • 1 in 1,000 • Upcoming Fundraising Events Issue 20: Mar/Apr 2011 www.cfireland.ie

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Spectrum / Issue 20

Dear All, Welcome to the 20th ‘Conference Special’ issue of Spectrum. This edition of Spectrum includes a focus on our National Awareness ‘65 Roses week, which is running from 8th-15th April. Our volunteers will once again be heading out to local shopping centres and selling our 65 Roses badges to raise awareness and funding for cystic fibrosis. So please, keep and eye out for them and encourage friends and family to also show their support for us this year. As part of our Conference Special issue of Spectrum this month, we provide you with an overview of developments from within the Association, progress in adult and paediatric CF Centres around the country since our last conference, and update you on recent and forthcoming policy changes of relevance to people with cystic fibrosis and their families including newborn screening, lung transplantation and the new National Children’s Hospital in Dublin. The Fundraising team also bring lots of fundraising events to your attention this month! From parachute jumping to headshaving, not to mention poker nights and tennis tournaments, there is something for everyone over the next few months. Have a look inside to see if there is an event on near you! Finally, we at CF house are looking forward to meeting all those members travelling to the Annual Conference in Mayo in April. For those of you unable to attend, fear not, as we will be sure to update you on all the discussions and workshops in our next issue. We hope you enjoy reading this issue, and if you would like to see anything in particular included in the next Spectrum, please email your ideas to amay@cfireland.ie. Kind Regards, Philip Watt (CEO) Alica May (Editor)

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Section 01:

65 ROSES WEEK : Page 2-15 65 Roses Week & CFAI Annual Conference Overview of Developments 2010/11 Progress in CF Centres Featured Policy Developments Section 02:

LATEST NEWS : Page 16-17 Positive results from Phase 3 Clinical Trial Award Recognition for members -Section 03:

EVENT FOCUS: Page 18 Are you 1 in 1,000? -Section 04:

PWCF SPOTLIGHT : Page 19-20 Caroline Heffernan, PWCF Advocate -Section 05:

FUNDRAISING : Page 21-26 Battle of the Blues Pearse McMullan Birthday Celebrations Wax, Shave or Colour 32 Steps for CF Midnight Shakers Masquerade Ball And much more... --

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65 ROSES WEEK

SECTION 01

PAGE 2—15

65 ROSES WEEK ‘Say it with Flowers’, April 8th – 15th 2011 ’65 Roses’ is how some children first learn how to say ‘Cystic Fibrosis’. The symbol in Ireland for 65 Roses Week is purple roses. We will be marking this years awareness week in a similar way to last year by encouraging everyone to wear a specially designed lapel badge, which we will be selling to the public for €2. Both adults and children with CF will benefit from fundraising during this awareness week. Half of the proceeds of the badge will go to Branches for local fundraising and half will go to national initiatives including dedicated in-patient and out-patient facilities, and a new advice and support service for parents of newly diagnosed children. If you would like to get involved in selling pins locally, please get in touch with us as early as possible for logistical reasons. Alternatively, many members are planning coffee mornings to sell badges and raise awareness, whilst others are selling them in the workplace. Say it with flowers during 65 Roses Awareness week

The badges will be on sale at various shopping centres across the country with the help of our many volunteers. We hope to get a lot of support and, more importantly, raise awareness of Cystic Fibrosis. So please, encourage your friends, colleagues and families to show their support for our members by buying a 65 Roses badge during our forthcoming National Awareness week!

CFAI ANNUAL CONFERENCE 2011 Friday 8th – Sunday 10th of April About the CFAI Conference This years National Conference is just around the corner. Westport is the destination for 2011 and the conference will be held there between Friday 8th and Sunday 10th of April. The conference will mark the beginning of our National Awareness Week ’65 Roses/CF Week’ which will be launched on the evening of Friday 8th of April by An Taoiseach, Mr Enda Kenny T.D. The theme of the conference this year is: CF – The Challenges for Families, Healthcare staff and a New Government.

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Our approach to the conference is to invite a range of high quality speakers but also to allow time to discuss key issues that will be of broader interest. So if you want to find out more about issues such as CF and genetics, mental health, screening, and physiotherapy – this is the conference for you! There will also be a section on communication between people with CF – past, present and future. For those not able to participate in the conference for cross infection or other reasons, we will have an audio visual link available to those with internet access. Networking The socialising, networking and entertainment aspects of the Annual Conference are important reasons why we organise this event. This year is no exception. Whether you have been to many conferences or if this is your first conference, you will find that everyone is made feel welcome. Apart from the good entertainment, there will be many opportunities to find out more about CF from talking to those attending the conference. It’s also a good opportunity to talk to other members who may be feeling and experienceing the same things as you are feeling. Acknowledging Supporters The Annual Conference is the perfect occasion to acknowledge particular members whose tremendous fundraising efforts have gone above and beyond expectations. Venue and Costs to Participants this Year Thanks to the generous sponsorship by Baxter Ireland, Chiesi and Novartis, the costs of the conference have been kept down to the same rate as last year. As part of our Conference Special issue of Spectrum this month, we will also provide you with an overview of developments from within the Asoociation, progress in CF Centres around the country since our last conference, and update you on recent and forthcoming policy changes of relevance to people with cystic fibrosis and their families. First, let us look at some of the improvements that have been made in the last year.

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OVERVIEW OF DEVELOPMENTS 2010/11 Philip Watt, CEO CFAI 2010 has been another important year of progress in developing CF services in Ireland. However, we still have considerable distance to go to reach agreed European standards in CF care. Some recent improvements in CF Centres are to be welcomed. Depending on the particular centre, these have been funded by CFAI at a national and local level, the HSE and local charities, and our many friends and supporters. However, these improvements should not gloss over the fact there remains major gaps and weaknesses in CF services that are unacceptable. These include the continuing necessity of placing CF patients in multi-bed wards because of the lack of isolation or even single occupancy rooms and the linked risk to cross infection; the continuing reality of late diagnosis of some children with CF; and the worrying gaps in some CF multidisciplinary teams due to ill considered government cutbacks. Of further concern is the 35% decline in organ donors in 2010, which impacts on all prospective transplant patients. A particular focus of our work going forward includes the need for more isolation rooms; upgrading out-patient and day-care facilities; support for the forthcoming introduction of newborn screening; developing agreed national standards in CF care, improving the rate of double lung transplantation and ensuring the needs of CF patients are included in the proposed National Children’s Hospital plan. Many families with CF are suffering because of the continuing economic crisis in Ireland. A key focus of our work continues to be to reverse the impact that public service expenditure cuts are having on CF care in Ireland. The following section summarises some of the main improvements in CF facilities in Ireland. Improvements in CF Facilities in 2010/11: • March 2010: Temple Street Children’s University Hospital opened a new Cystic Fibrosis and Respiratory out-patient unit • October 2010: The signing of the contract for the new CF unit in St Vincent’s University Hospital and the commencement of building work • November 2010: A new out-patient unit opened that will provide a significantly enhanced service to adult CF patients attending Beaumont hospital • December 2010: Commencement of 10 bed facility for CF patients in Cork, due to be completed in April 2011 • January 2011: Announcement of planning permission being granted for a new CF adult inpatient and out-patient facility in the Mid-Western Hospital, Limerick • February 2011: Advertisement for the first dedicated lung transplant surgeon for the Mater Hospital • April 2011: Anticipated opening of the 4-bed in-patient unit in Crumlin Children’s Hospital • Preliminary work also progressed during 2010 in improving CF facilities in Drogheda and Castlebar and supporting key staff in Tallaght, Galway and Cork • Funding for CF research was also provided to St Vincent’s University Hospital through a joint CFAI/HRB/MRCG funding scheme

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Grants and Services Provided by CFAI In parallel to our advocacy work to improve public policy, CFAI continues to improve the services we provide to our members. These services include advice, support and information. Our website and our newsletter Spectrum also continue to be improved. CFAI provides a range of grants and services including: CFAI Grants - Exercise Grant Scheme - Fertility Grant Scheme - Transplant and Transplant Assessment Grant - Family Bereavement Grant

CFAI Support Services - Domiciliary Physiotherapy Service - Social and Distress Payments - Counselling Referral Service

CFAI provides important support for research into CF in Ireland through direct funding and through the MRCG/HRB Joint Funding Scheme. We also watch closely for recent developments and outcomes of clinical trails to improve the treatment of CF. The May/June issue of Spectrum will discuss some of these developments in greater detail. The Medical and Scientific Council of the CFAI comprised of CF Consultants in Ireland continues to play a very valuable role in advising and informing our work. We welcome the new Chairperson, Dr Barry Plant and acknowledge with gratitude the work of our outgoing Chair, Professor Charles Gallagher. The PWCF Group continues to have an important input into the work of the CFAI and the greater visibility of people with CF at all levels of CFAI is one of the most important developments in recent years. Communications, Public Awareness and Fundraising Our newsletter Spectrum introduced in 2009 continues to receive positive comments from our members. The National Office continues to meet with Branches and to organise regional meetings. In January 2011, the CFAI organised a roundtable on ‘The Introduction of Newborn Screening for CF’ for newborn children, which was well attended. The National Conference in Kilkenny in April 2010 was attended by 250 people. The 65 Roses Week theme, along with with the new badge and t-shirt, were also met with favourable response from our members. CF continues to be high profile in the media thanks to the work of everyone at a national, regional and local level, including our Branches. CFAI and Fuzion (our PR Company) won the prestigious Award for Excellence in Public Relations in 2010. We are very grateful to all those who fundraised on our behalf in 2010/11; it has been an extraordinary effort to maintain fundraising targets in present circumstances. The CFAI National Office continues to take steps to reduce costs with staff continuing to play their part in an extended pay freeze and contracted services going out to tender for good value. Sponsorship and support in kind is also an important way to maximise our fundraising efforts. The Crucial Role of our Branches The work of the CFAI Branches is the lifeblood of our Association. I have had the privilege of working closely with our many Branches since becoming CEO of the CFAI in June 2009. The relationship between the CFAI National Office and our Branches must always be one of partnership. Over the past 2 years we have seen more and more Branches getting involved in liaising with their local CF centres as well as fundraising. Huge amount of work is being done by 5


Spectrum / Issue 20

individual Branches at a local and regional level. The example of three Branches coming together in the form of TLC4CF shows how the sum of our endeavours can multiply when we work in partnership at a national or local level. Parents and people with CF know what needs to be done to improve CF services in their local CF Centre. CFAI strives to be supportive of this role. We look forward to the significant challenges of 2011/12 and renew our commitment to our members to work with all stakeholders to continue to strive for world class CF services in Ireland.

PROGRESS IN CF CENTRES Latest Developments The following is an update on some of the main adult and paediatric CF Centres in Ireland over the past year, focussing on some of the most important developments during this time. Adult Centres St Vincent’s University Hospital, Dublin On 14th October 2010, CFAI welcomed the final signing of the contract to build the new ward block at St Vincent’s University Hospital, part of which will form the basis of the new Cystic Fibrosis National Adult Referral Centre. A detailed overview of the construction programme (see below) of the new ward block including start and completion dates of each major building activity was provided to CFAI. Construction Programme for the New Ward Block in St Vincent’s University Hospital, November 2010-March 2012 Activity

Planned Start

Planned Finish

Site set up/enabling works 1 November 2010 (road, bulk excavation) Substructure (basement 31 January 2011 construction and foundations)

28 January 2011

Superstructure Roofing External envelope Internal services and finishes Delay thresholds Project complete

08 July 2011 12 August 2011 2 December 2012 20 January 2012 16 March 2012 16 March 2012

14 March 2011 27 June 2011 16 May 2011 30 May 2011 23 January 2012 16 March 2012

25 March 2011

The construction contract is with John Paul Construction Ltd, which has recently completed another major building project on the hospital site. The Government will reimburse the contractor on completion of the building project. Construction was delayed in June 2010 as a consequence of the need for a new construction company to be appointed to undertake construction when the preferred tenderer went into financial difficulties. Completion date of the project at St Vincents is 16th March 2012. 6


Mar/Apr 2011

Interim Facilities CFAI also investigated the possibility of interim improvements being made available in the former Vincent’s private hospital, which is only a short distance from the existing St Christopher’s ward. After consultation with the hospital and consultants this did not proceed as it would have resulted in CF patients not being able to use the existing St Christopher’s Ward, which was of a significnatly higher standard.

Artists impression of the new ward block at St Vincent’s University Hospital.

Comment: It was a long hard fought battle to ensure that the long promised new CF Centre in St Vincent’s University Hospital was commenced. There are presently only eight ensuite isolation rooms plus two small single rooms in the St Christoper’s ward in Vincents’, which resulted in many CF patients being accommodated in multi-bed wards. The cross infection issues resulting from these unacceptable conditions were highlighted on many occasions in the media. The new CF centre will meet both out-patient and in-patient requirements for CF patients. Beaumont Hospital, Dublin Beaumont is one of the key Adult CF centres in Ireland. In November 2011, a new out-patient unit opened that will provide a significantly enhanced service to adult CF patients attending this hospital. This facility was specifically built for people with CF, and will facilitate the delivery of a comprehensive range of services by multidisciplinary teams to allow more patients to be seen during each day. Services now available to PWCF include consultations with doctors and nurses, provision of treatments that might otherwise have required hospitalisation, assessment of pulmonary function, physiotherapy, dietetics and psychology. The building includes consultation and therapy rooms with air filtration units which allow for 12 air changes per hour, approximately three times the average rate in a normal room. This has significant benefits in reducing the time needed between patients for infection control purposes, which is particularly important for people with CF.

The new ambulatory day care facility improves patient access to essential services including physiotherapy, dietetics and psychology.

A consultation room at the new out-patient facility at Beaumont Hospital in Dublin.

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Along with priority access to a number of en-suite in-patient rooms, it means that CF patient’s admission as an in-patient via the Emergency Department in now a rare occurrence. Comment: The new 2,500 square foot unit has been built, at a cost of €3.5 million, with funds provided under a capital allocation from the HSE. CFAI would also like to acknowledge the contribution that the CF Hopesource Foundation, including Paul Dempsey and Maeve Mullins, played in lobbying for the Beaumont development, which was identified as a key centre in the CFAI’s Pollock Report. Paediatric Centres Temple Street Children’s University Hospital, Dublin Temple Street Children’s University Hospital officially opened a brand new Cystic Fibrosis and respiratory out-patient unit on 25th March 2010. The total cost of this project was €3.2 million, over €2.5 million of which was raised through donor support and corporate partnerships. The Fundraising Office partnered with Friends First and a charitable foundation run by its parent company, The Eureko Achmea Foundation, to fund the new respiratory laboratory, which is a vital component of the service. Comment: The new CF and respiratory out-patient centre has made a significant difference to CF patients attending Temple Street. The centre will serve this function until the new National Children’s Hospital is built.

Our Lady’s Children’s Hospital Crumlin, Dublin The CFAI provided €750,000 towards a new CF development at Our Lady’s Children’s Hospital in Crumlin in 2009/10. The new CF unit will comprise of 4 single en-suite rooms, two with isolation lobbies & full Hepa-Filtration, which will provide negative pressure & two with-out isolation lobbies. The new facility opened in March 2011. The unit area will cover an area of approx 200 sq metres designed to current best standards and finish. Each room will have its own nurse call, monitoring system, a/c unit and tv/games console, pull-down bed for parent rooming-in, storage etc. A parent’s lounge with tv, microwave, fridge, tea making facilities etc is included. The unit will be connected back to the existing St Michael’s ward via a new link corridor with a nurse station and ancillary rooms including treatment room, minor procedures room at the axis. Comment: These are the first dedicated isolation/en-suite rooms for children with CF in Ireland. They are state of the art and CFAI contends they should provide a template for children with CF who will be attending the future National Children’s Hospital. Our Lady of Lourdes Hospital, Drogheda The CFAI organised a meeting on 16th of February 2011 in Drogheda to discuss the ongoing unsatisfactory CF facilities for children in Drogheda Hospital for both parents and healthcare staff and to establish possible ways forward. Particular focus is on the need for a dedicated outpatient centre for children.

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n 21 JUNE

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Comment: Drogheda is a shared care centre with Temple Street and Crumlin. A major focus of the CFAI over the next few years is to ensure that shared care centres do not get left behind in relation to CF developments in Ireland.

ANNEVILLE HOUSE

HOSPITAL CAR PARK

WINDMILL ROAD

The CFAI is considering an innovative solution in creating a new dedicated out-patient centre through the purchase of a property adjacent to the hospital in Drogheda and its subsequent conversion, subject to planning permission and cost requirements. The CFAI will also be seeking to ensure that a permanent CF Consultant is appointed.

21 DEC

ANNEVILLE CRESCENT client

Cistic Fibrosis Association of Ireland

project Out Patients Facility at n°52 Windmill Road

Site Plan Scale 1:500

date

SITE OUTLINE IN RED ROAD ACCESS

description

Drogheda Co. Louth site plan

drawing

1028 ske

HOSPITAL ACCESS 16/3/11

issued to the HSE and clients

job ref. 1/200 scale

issue October 2010 date

0-001

series

1028 ske CAD file name

anello architects 6-9 trinity street dublin 2 t/f:+353 1 617 7990/1 info@anelloarchitects.com

The proposed siting of the out-patient facility for CF Children in Drogheda Hospital on Windmill Road.

Adult and Paediatric Centres Cork University Hospital The National Office of the CFAI provided €270,000 towards research and the employment of a Clinical Registrar in Cork University Hospital (CUH) in recent years. The Southern Branch is playing a crucial role in supporting research in CUH, with further support already committed. The CFAI has welcomed the commencement of building for the new CF daycare unit for CUH on 20th September 2010, which is due to be completed in April 2011. Development of this unit will see a significant improvement in treatment facilities made available for people with CF from the Cork and Kerry area. The expansion also marks the first part of an ambitious plan to see the development of a 10 + 1 single en-suite, in-patient bedroom CF hospital ward. Comment: Build4life, a local CF charity, provided the majority of funding for the new capital project with the support of many members of the CFAI in the region. The Southern Branch of the CFAI has made a huge contribution to fundraising in the region.

Mid-Western Regional Hospital, Limerick TLC4CF (Tipperary, Limerick and Clare Branches of the CFAI) have been instrumental in developing adult services for people with CF in the region. In January 2011, the group announced that planning permission had been granted for the new CF adult day care centre and in-patient unit at MWRH, Limerick. The six-storey unit that will consist of two floors for CF patients will provide a specialised CF out-patients unit with five treatment rooms and a dedicated in-patient unit with nine en-suite rooms. It is hoped that building work will commence in the first half of 2011 and that the building will be completed by the end of 2012. Owen Kirby, Chairperson for TLC4CF said “The number of adult CF patients attending MWRH is increasing all the time as people living with CF are surviving longer. There is a dedicated Paediatric CF Team at this hospital, but at present the facilities in the Mid-West for adults with CF are very basic, which is why this announcement is so important.” 9


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Also speaking at the recent press conference was 20-year old PWCF patient Katie Drennan from Ennis, Co. Clare. The second-year business studies student at the University of Limerick said: “The benefits of such a unit are many. It means we will not have to travel to other cystic fibrosis centres in Dublin to receive our treatment. We will not have to endure long hospital stays away from home. We will no longer fear the risk of cross-infection when we attend the hospital for treatments. Such a unit will also benefit our families as well; long-term absence from home due to frequent hospital stays can sometimes be very difficult, and the absence from our friends can sometimes be the hardest of all to deal with. We all look forward to enjoying better facilities and a higher standard of care which will play a major role in improving the lives of so many people with Cystic Fibrosis.”

TLC4CF committee members (L-R) Liam O’Reilly, Caitriona Hayes, Linda Drennan, Marcella Clancy and Owen Kirby, have done tremendous work in developing services for PWCF in Limerick.

Katie Drennan, 20-year old PWCF, spoke at the press conference on the benefits of having the new unit.

Artists impression of the new unit at MWRH, with one floor dedicated to a daycare centre and another to the CF in-patient unit.

Comment: The funding for the new adult CF Unit in Limerick has come from a range of sources including the JP MCManus Pro Am tournament, TLC4CF and the National Office of the CFAI. It is a partnership project with the Parkinson’s Association and the Hospital Trust and is the largest capital project CFAI has been involved in. TLC4CF have been the drivers of this project and demonstrates what can be achieved through a partnership approach. University Hospital Galway The Galway Branch of CFAI, led by Mary Lane Heneghan, has been very active in fundraising for improved facilities for CF patients and liaising with the hospital management. Key developments in recent years include fundraising for three en-suite isolation rooms and lung function equipment. The Galway Branch in partnership with the National Office has also made representations on the need for a CF full staff complement in Galway. Comment: Recent welcome news is the appointment of Dr Michael O’Mahoney to the post of Adult CF physician in University College Hospital Galway in March 2011. Dr O’Mahoney was previously the attending Physician in the Department of Pulmonary and Critical Care Medicine Weill Cornell Medical College, New York. Castlebar, Co Mayo The CFAI Mayo Branch and a local CF charity have been active in fundraising for an ambulatory and day facility for all patients with CF (adults and children) so that they can access physiotherapy, dietetic and social work services in one dedicated area. It also provides a dedicated location where assessment of acute illness can take place and a meeting room will also be provided for parents and members of the CFAI. 10


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Comment: Castlebar is one of the few CF centres north of the Galway/Dublin axis and provides important supports for CF patients in the greater Mayo area. The new development will be greatly welcomed by patients in the area.

Hospital Focus - Mayo General Hospital A Consultants Perspective A Cystic Fibrosis service has been established in Mayo General Hospital for over 30 years. It was instituted by Dr David O’Kane in 1978 on his appointment as a Consultant Paediatrician. Currently, 40 people with Cystic Fibrosis attend the Mayo CF clinic, ranging from the very young to those beyond 40 years. The clinic uses a shared care model to address the care requirements of patients. We have been fortunate to have good in-patient facilities for people with CF. We converted a six bedded ward into two rooms, which have an ante room area and shower facilities. Internet access is available to facilitate those who want to surf the net. Home intravenous antibiotic therapy with adjunctive physiotherapy has been used for many years in those who have an exacerbation of their disease, provided they met specific criteria. Our out-patient’s area was restructured to include six consultation rooms; this ensures that each person has their own room at clinic and each of the team rotates. This system works well and has been in place for some time. We have a good team inclusive of Consultant, Clinical Nurse Specialist, Physiotherapist and Dietician. Clinical Psychology and Social work is only accessed on a consultation basis. In the community setting there are physiotherapists who have rotated through the CF service over the years, which allows us to access their services on an ‘as needed’ basis. Yes, it sounds idyllic, but do not be deceived – if you have CF or are a parent of a child with CF, you know what I mean. Visits onto the ward to be assessed on a non-clinic day; waiting because the clinic rooms are busy; if you want to discuss a clinical concern there can be a lack of privacy; the wards are so busy that you worry about picking up something that may make you ill. The list goes on... What are we to do? Well, we advocate the Monseniour Horan approach. We are going to build a CF unit in the grounds of Mayo General Hospital. This unit will have two rooms that will measure 25 square meters, have en-suite facilities and be large enough to have extra equipment placed in them for patient care. The ventilation system will be state of the art. Adjacent will be clinic rooms and a meeting room for the local association. We have also allowed some room for expansion. Is such a build necessary for Mayo? The answer is yes it is. Cystic Fibrosis care delivery is an evolving process and as such proper facilities are at the core to allow for innovation in these processes. Dr Michael O’Neill, Mayo General Hospital A Patient Perspective My name is Katie Moore. I’m 24 years old, and I’m very lucky to be a ‘healthy’ PWCF. The great thing about being a patient at Mayo General Hospital is the personal aspect of it all, everyone knows everyone by first name. When I was in my teens and staying in for IV’s, the night duty staff would always include me in their ‘midnight feasts’. Knowing that Chinese was my favourite, it was something I always looked forward to, making my boring day have some excitement. I remember thinking of these ‘midnight feasts’ as parties attended by a fellow PWCF and I; we were the special ones who got to join in!

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But that’s not to say Joyce, who is part of the catering staff, wouldn’t do anything to get me the nicest food in the hospital, she would get me whatever I wanted, along with some fun gossip about whatever celebrity scandal may have been going on, or just about clothes – one of my favourite topics! She has to be one of the nicest people I’ve ever met, I couldn’t imagine the paediatric ward without Joyce, I wonder does she realise the difference she makes to patients stay in the hospital. Nowadays when I’m in for my assessments with Lorna, the CF Nurse, the blood tests, ultrasounds, lung function tests can get sidetracked as we’re too busy talking about our social lives, clothes, shoes, and whatever concerts are coming up. Not only do we have lots of laughs, but I’m also able to be an emotional wreck around Lorna too, which is great. We have become good friends over the years; she is someone I can count on. Last year when I told Dr. O’Neill about the 6 month round the world trip I was going on he was almost as excited as me, we both have the love of travelling in common. He wants me to get to travel as much as I want to, which is great! When I see Dr. O’Neill at CF clinic’s he always has a big interest in my art, wanting to know what I’m up to, if it’s painting, dress making, millinery, he keeps up to date, even knowing about the designer I had work placement with in London, impressive for a doctor! I couldn’t imagine having to attend another hospital, where people don’t know my name, my medical history, and my love for art and style. It is strange to think of a hospital ward as a personal place, but for me at MGH it is, and I feel lucky for that, as I have grown up with the staff here. Katie Moore, PWCF, Age 24

Waterford Regional Hospital CFAI visited Waterford Regional Hospital (WRH) to meet with Dr Mark Rogan, Consultant Respiratory Physician, Dr Animitra Das, Consultant Paediatrican, and Ms Anne Doyle, Cystic Fibrosis Nurse in May 2010. The purpose of the visit was to identify the current deficits of services made available to PWCF in this region, and for the CF team to highlight the bare minimum of what is required in order to provide a limited adult service at the hospital. Staffing levels across multiple disciplines in adult CF care in WRH are far from adequate. For example, there is currently no designated Psychologist, Social Worker or dedicated Microbiology team member specific for CF care. Of vital need for the provision of adult care is the appointment of a Specialist Registrar. The lack of infrastructure (with particular reference to the absence of en-suite rooms and a dedicated day ward/drop-in ward) is also hindering the development of a safe and effective adult CF service. The CF team also highlighted the current deficiencies in paediatric CF services, particularly the lack of en-suite rooms and a dedicated examination room.

Comment: The key components identified for developing a limited adult service in the shortterm are provision of a registrar and day ward/drop-in ward. Single en-suite rooms are needed both for adult and paediatric PWCF. The CFAI is committed to working closely with the CF team and hospital management in WRH to create more visibility to these issues and to develop a strategy to overcome the current limitations in services for PWCF in this region.

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FEATURED POLICY DEVELOPMENTS Newborn Screening, Transplantation and the New National Children’s Hospital

The Introduction of Cystic Fibrosis Newborn Screening in Ireland Newborn screening for cystic fibrosis (CF) will be introduced in Ireland later this year. This is a very exciting development for all involved in the care of people with CF. For children who present with typical symptoms, the average age of diagnosis of CF in Ireland is about 11 months. The introduction of screening will result in earlier diagnosis. The programme is designed to identify infants with CF between three and four weeks of age. This earlier diagnosis provides a whole range of benefits to children with CF and their families. An obvious and important benefit is the removal of the often long and arduous journey to diagnosis that many families have had to endure. There is also ample evidence which illustrates that individuals diagnosed through newborn screening have significantly improved nutrition, with knock-on benefits to vitamin levels, cognitive functioning, improved lung function, less antibiotic use and admissions, and ultimately improved survival. Presently, all infants born in Ireland have a spot of blood taken by pricking their heel between 72 and 120 hours of age. This sample is sent to the National Newborn Bloodspot Screening Laboratory (NNBSL) in Temple Street where five rare metabolic conditions are screened for. Later this year a sixth condition, CF, will also be screened for on the same sample. This will involve a two step process. Firstly, the immunoreactive trypsin (IRT) level is measured. If the IRT is high the second step is performed which is a genotype analysis, designed to detect the mutations (genetic errors) that cause CF. If two mutations are identified, the infant has a high likelihood of having CF. The NNBSL will inform the CF nurse in the nearest specialist CF centre to the fibrosis will soon be screened for by the family. The CF nurse will then organise for the infant to Cystic heel prick test. have a sweat test and review by the CF consultant the following day. If the sweat test is abnormal the parents will be informed of the diagnosis. The education process, introduction to the multidisciplinary team, and treatment, that all follow a new diagnosis of CF will then begin. If just one mutation is identified it is likely the infant is simply a “carrier” and does not have CF. To make sure the infant doesn’t have a second rare (and as yet unidentified mutation) they will have a sweat test. The vast majority of these sweat tests will be normal, thus ruling out CF. The parents will be referred for genetic counselling and will have no further interaction with the CF service. None of the gains from the early diagnosis of CF through newborn screening come without hard work and attention to detail in every aspect of CF care. To maximise the potential newborn screening provides, children must attend a centre specialising in CF care with a fully staffed multidisciplinary CF team, with strict infection control guidelines in place, and the provision of up to date evidence-based treatment. Through the relentless pursuit of excellence, CF newborn screening will provide us with an opportunity to make a leap forward in the care of people with CF in Ireland. Article prepared by Dr Barry Linnane, Paediatric Respiratory Consultant at MWRH, Limerick 13


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Transplantation: Challenges for the New Government Recent trends in organ donation send out worrying signals that need to be addressed by our new Government. 2010 saw the highest fall in organ donation on record in Ireland. Donations fell by 35% with only 58 deceased donors providing organs for 243 transplant recipients (inlcuing heart, lung, liver, kidney and pancreas trasnplants). Major gaps and weaknesses remain in the donation/transplantation policy framework in Ireland, which were not addressed by the last government. These include: • The fact that Ireland is one of the last countries in Europe not to have a legal framework underpinning donation and transplantation. The Human Tissue Bill, 2009 was not enacted despite the requests by NGO’s, including the Irish Donor Network, for its prioritisation. • The need for at least 12 organ donor co-ordinators to be based in the main acute hospitals is increasingly regarded as being crucial to providing support to donor families and would help co-ordinate the transplant process. • The pressing need for a national organ donor registry to be established where potential donors and potentailly next of kin could sign up online. This would help bring organ donation into the 21st century. The HSE has resated its committment to establish a Transplant and Organ Donation Office in Ireland. This is one of the requirements arising from an EU Directive which requires a ‘competent authority’ to be establsihed by June 2012. Despite its delay (it was originally planned to be up and running by December 2010), it is welcome news that the Office will be establsihed and that Professor Jim Egan of the Mater Hospital has recently been appointed lead clinician for this new office. These positive developments now need to be matched with giving the Office the necessary resources and status to undertake its work effectively. The Government has also indicated in the new programme for government that it will introduce presumed consent, i.e. it will be presumed that all potential donors have opted in to donating their organs, unless they or their next of kin have indicated otherwise. It is unclear how this would opperate in practice and there are ceratinly views both for and against this meausure. However, it should be noted that presumed consent has had a positive impact on donation rates in other countries, such as Spain. It is important that this measure is considered as part of an overall framework, rather than being a panacea that will solve the donation and transplant challenges in Ireland. There are particular challenges for all those needing a lung transplant in Ireland, including CF patients in need a double lung transplant. The HSE have recently given the go ahead to the Mater to appoint the first dedicated lung transplant surgeon in Ireland. This is a really important development, but likewise it will require concommitant improvements in our overall policy framework, such as appointing organ co-ordinators in acute hospitals if the benefit of this appointment is to be fully realised. In 2010 there were 7 CF double lung transplants on patients from the Republic of Ireland undertaken in Freeman’s Hospital, Newcastle and 3 in the Mater Hospital, Dublin. However, there are over 30 people currently on the waiting list and at least 20 other non-CF patients who need a lung transplant. This marks 2010 as being a more sucessful year for lung transplants for people with CF than previous years. However, CFAI contends that this improvement can only be sustained if a proper policy framework is put in place.

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The Proposed New National Children’s Hospital of Ireland The New National Children’s Hospital, which is due to open in 2016, will be formed from the merger of Crumlin, Temple Street and Tallaght Children’s hospitals. The new 16 storey National Hospital will be built on the site of the Mater Hospital in Dublin. As a voluntary organisation committed to representing the people we serve, it is our aim to maintain an ongoing dialogue with the National Paediatric Hospital Development Board during the planning and building phases of the new hospital. In December 2010, the CFAI drafted a policy paper to address the concerns and specific considerations of the CF community relating to the management of paediatric CF in the new hospital. Provision of adequate parking and access facilities for families as well as comfortable accommodation for patients and family members are particular concerns. The development of designated in-patient and out-patient facilities are also of paramount importance to reduce the risk of cross-infection for children with CF. In An artist’s impression of the proposed new National addition to suitable facilities and equipment, the Children’s Hospital. staffing levels should reflect the multidisciplinary care requirements of our members. The CFAI subsequently met with representatives from the National Paediatric Hospital Development Board to discuss the points raised in our submission. The establishment of a new tertiary paediatric hospital provides an excellent opportunity to develop the dedicated facilities for which the CF community has long waited. By addressing our concerns with the National Paediatric Hospital Development Board at the early stages of hospital planning, we are fostering an open communication dialogue that will help advance paediatric CF care in Ireland, serving to improve the lives of our children. There is currently a review of the proposed location of the hospital being undertaken by the new government.

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LATEST NEWS

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POSITIVE RESULTS FROM PHASE 3 CLINICAL TRIAL Announced in February 2011 Vertex Pharmaceuticals and the Cystic Fibrosis Foundation (USA) recently announced promising results from a Phase 3 clinical trial involving the drug VX-770, which targets and corrects the defective CFTR protein that causes cystic fibrosis. The study included 161 people with cystic fibrosis over the age of 12 who carry at least one copy of a CF mutation called G551D. Patients who took the drug showed reduced likelihood of experiencing a pulmonary exacerbation, decreased respiratory symptoms and improved weight gain compared with patients on placebo. Patients who took VX-770 also showed a marked improvement in lung function at 24 weeks, which was sustained for the duration of the 48-week trial. About four percent of people with CF carry the G551D mutation. More studies are needed to determine whether other CF mutations may benefit from VX-770. The European Cystic Fibrosis Society (ECFS) President, Prof. Stuart Elborn, and the Director of the ECFS Clinical Trials Network, Prof. Kris De Boeck commented in the ECFS newsletter: ‘The clinical impact of VX770 on the relevant outcome measures of lung function, sweat chloride concentration and quality of life have all shown statistically significant and clinically meaningful improvements. The magnitude of the improvements is the biggest seen with any therapy in Cystic Fibrosis and is significantly greater than many of us anticipated.‘ This is good news for patients with the G551D mutation but also extremely encouraging that other strategies that correct and subsequently potentiate other mutations such as F508DEL will be achievable. Vertex Pharmaceuticals intends submitting a New Drug Application for VX-770 to the U.S. Food and Drug Administration (FDA) in the second half of 2011. The FDA will probably take between six and 12 months to review this application before determining if the drug is safe and effective for wider distribution. The CFAI welcomes this encouraging news and we look forward to hearing more about this drug over the coming year. For more information on this clinical trial please refer to the Cystic Fibrosis Foundation website: http://www.cff.org/research/ClinicalResearch/FAQs/VX-770/. ‘The results of this clinical trial are groundbreaking’ Prof. Stuart Elborn

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AWARD RECOGNITION Alison Kenny, Gerard Fay & Joe Browne Three longstanding fundraisers and campaigners for CF, Alison Kenny, Gerard Fay and Joe Browne, have been recognised for their work in recent award ceremonies. The Rehab Louth People of Year awards acknowledged the tremendous work of two of our members, Alison Kenny and Gerard Fay, for their invaluable voluntary contributions to cystic fibrosis. Alison Kenny, PWCF age 40, from Dundalk was nominated for her exceptional bravery in battling cystic fibrosis. Alison has long campaigned for the vital need of people to carry organ donor cards. ‘It is the greatest gift, the gift of life, that a person can give to another,’ said Alison. Gerard Fay, long-time fundraiser for cystic fibrosis was also acknowledged for this ongoing support and dedication to raising money for this disease. Both Gerard and Alison are eligible to go forward to the National Rehab People of the Year awards, which will be presented on Saturday September 10th.

Martin Cahill, Alison Kenny and Gerard Fay at the Rehab Louth People of Year awards.

Joe Browne, Chairperson of Build4life was named the Santa Rita 120 Local Hero of the Year 2011 for helping raise vital funds for the new CF unit at Cork University Hospital. The Kerry man was chosen from 200 entries from across Ireland. ‘I am humbled to be presented with this award...it is really an award for everyone involved in the CF projects,’ said Joe. Congratulations to Alison, Gerard and Joe from all of us at CFAI!

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EVENT FOCUS

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ARE YOU 1 IN 1,000? Ireland’s Top Women Team Up for Cystic Fibrosis Details of 1 in 1,000, the annual fundraiser for Cystic Fibrosis have been announced! The campaign is a drive to recruit 1,000 women to run for CF in the 2011 Flora Women’s Mini-Marathon. Among several high profile women supporting this year’s campaign are FM 104 Radio host Louise Jordan, winner of The Apprentice Michelle Massey, model Joanne Martin and Rose of Tralee Clare Kambamettu. Last year’s 1 in 1,000 campaign raised over €250,000 for the Cystic Fibrosis Association of Ireland. We are hoping to repeat this phenomenal success in 2011 by recruiting 1,000 women again for the June event, with each participant raising at least €200 in sponsorship. The aim of the campaign is to raise funds to build more isolation units in hospitals around the country and to increase support services for newborn CF screening. Outlining her reasons for being 1 in 1,000 at this year’s Flora Women’s Mini-Marathon, Claire Kambamettu said “1 in 1000 brings women together for a great cause, raising spirits, awareness, support and a huge sense of achievement that could not be realised by an individual alone.” 1 in 1,000 is a fun and unique initiative founded by Zoe Woodward and a group of her friends and family. They wanted to do something for CF following the diagnoses of Zoe’s little girls Emily and Lana (now aged 5 and 3). Together the group built an exciting event that rallied 1,000 women into doing something incredible. Zoe explains that “1 in 1000 is about being greater than oneself; it is the coming together of many ordinary women to become great women and to work together towards something that really counts – to improve and extend the lives of children with CF.” Children born today with CF can expect to live a near normal, full and productive life, provided that the correct facilities are in place. In addition to supporting new parents, funds raised will go towards ongoing isolation unit building projects around the country. Similar facilities in other countries have resulted in shorter hospital stays, less severe infections, less stress for the whole family and a better and longer life for CF patients. Registration for the Flora Women’s Mini-Marathon opened on Wednesday 2 March and women wishing to enter as part of the 1 in 1,000 team should call 1890 311 211 or email runningforcf@cfireland.ie. For more information on 1 in 1,000 please go to www.runningforcf.ie. 18

Louise Jordan, Michelle Massey, Apprentice winner Joanne Martin and Rose of Tralee Clare Kambamettu at the launch for 1 in 1,000.


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PWCF SPOTLIGHT

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CAROLINE HEFFERNAN PWCF & CF Advocate of CFAI Living with CF is not the easiest of roads to be on, it can be quite bumpy at times. Day to day life can sometimes overwhelm us with the amount of medications, treatments and physiotherapy we have to fit into each day. But with practice, good organisation skills and family support, this soon becomes a routine that we don’t take much notice of when we are feeling well. School, college, work and social outings get fitted into our lives just like the rest of our peers. From an early age my mum taught me independence, she encouraged me to have a go at whatever life threw at me and to never give up. I had a big birthday last August; it surprised me that turning 40 had such an effect on me. The year was full of my friend’s birthday celebrations, and as my birthday got closer I decided I wanted to mark the occasion. For most, 40 is a significant birth. For a PWCF, it’s possibly a little more significant as you wonder at a young age if it’s a birthday you will reach. So being the girl I am, I celebrated in style. I had the holiday of a lifetime in Florida with my husband and two children. Having recovered from the trip I organised a party with my longest and dearest friend Angela – we have been friends since birth as our mums were in hospital together (she is five days older though, our own private joke!). Our partying continued for the weekend and was enjoyed by one and all.

Caroline and best friend Angela at her 40th birthday party last August.

I joined the CFAI in September 2008 as Patient Advocate. Each day of my job is very different, I am far from an expert but I have learnt so much from talking to everyone and hearing their stories over the years. I hope the knowledge I gain from communicating with our members and going to conferences helps our community. My aim at work is to help PWCF and their families in any way possible – we all know how complicated life can be with CF so I am here to assist if I can. Fundraising has always been something I did for CF at a local level, but since becoming an Advocate for the Association it has propelled me to greater heights. I have been given the opportunity to give after dinner talks at black tie events, I have modelled shoes (I love shoes) and even completed the New York marathon (which still remains one of my biggest sporting achievements). In July of 2010 I gathered a group of adrenalin junkies to do a Parachute jump and raise much needed funds for CF. We all headed off to the air strip, the chat on the bus was of nervous excitement but everyone seemed pretty relaxed considering we were going to jump out of a plane at 10,000ft. When we arrived at the parachute centre we signed in, filled out the 19


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appropriate paper work, got suited up and met our jump partners. At this stage the realisation hit, a few butterflies with clogs on were dancing in our stomachs but it was too late to back out – we were divided into our groups and off we went. Adrenalin junkies that paritcipated in the parachute jump with Caroline to raise funds for CF.

Smooth landing for Caroline after jumping out of a plane at 10,000 ft.

The plane didn’t exactly give us confidence as it was very small propeller plane, barely seating the group (I was on the floor). As we approached 10,000ft the door was opened and the time had come. The cold air took my breath away for a few seconds but by the time it was my turn to jump my breathing had regulated. I sat at the edge of the plane, legs dangling like a rag doll and for a split second wondered what I was doing. Next thing, I’m free falling at high speed and all I could do was laugh and cheer. I have to say I thoroughly enjoyed the free fall, it was exhilarating. As I pulled the cord and my parachute opened (thank god) I floated through the air gliding, twisting and turning, enjoying the view of the land below. I was back on land way too soon (to the relief of my mum and friends who had come to take pictures), but all I wanted to do was go straight back up. I was walking on cloud nine for the rest of the day. I can only do these things because I have a wonderful husband, family and friends as without their support none of these things would be possible. For this reason I entered a competition on the Mooney show in the hope that I’d win an extraordinary prize and be able to thank everyone who has helped me fundraise for CF in the past, and I won. We had a night with Daniel O’Donnell singing in my front room. The evening was amazing; Daniel was fantastic to each and every man, woman and child that were in my house. My friends decided on pay back and without me knowing all wrote letters and entered me into the Tuam town person of the year competition. I’m humbled and honoured to say I won but, again, I couldn’t have done any of the above without my friends continued support.

Daniel O’Donnell came to Caroline’s house to sing after her winning a competition on the Mooney Show.

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Living with CF has given me an insightful knowledge into life, and the stubborness and strength to live life to the full, never taking second best or anything for granted. As I and other PWCF strive to fit our CF routine into our normal everyday lifes, we achieve more than most will ever realise – it is our strength and determination to live life to the full that guides us through the harder days.


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FUNDRAISING

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BATTLE OF THE BLUES Friday 25th March, Croke Park The Dublin Fire Brigade will be taking on the Garda Síochána in the “Battle of the Blues” White Collar Boxing Tournament on Friday 25th March in the Croke Park Hogan Suite. Training is well underway for the contenders in preperation for the big fight night. CFAI is delighted to be chosen by the Dublin Fire Brigade as their charity of choice for this exciting event. The Gardaí have selected the Irish Motor Neurone Disease Association as it’s charity. Go along on the 25th for some interesting entertainment and help raise vital funds for cystic fibrosis in the process. Doors open at 7pm and the first contest kicks off at 8pm with special guests in attendance and great raffle prizes to be won. For further information or ticket sale please contact Deirdre at 087 7551158.

PEARSE MCMULLAN BIRTHDAY CELEBRATIONS March - April Pearse McMullan (PWCF) and Stephen Gilroy are organising a number of local events again this year. Chief among these is a ‘League of Ireland Legends’ soccer tournament with Paul McGrath taking part, on 26th March, and a 25-strong team to undertake a parachute jump on 29th April followed by a post-event party to celebrate Pearse’s 45th birthday. The soccer touranament takes place in the IADT Astroturf in Dun Laoghaire and all are welcome to come along. Entry is €10.

‘WAX, SHAVE OR COLOUR’ 9th April Another brilliant idea and event on during our Awareness Week comes from Claire Mooney (PWCF) who is organising a ‘Wax, Shave or Colour’ event on 9th April in Isaacs Well pub in Clonmellon, Co Westmeath. Participants can get a sponsorship card from Claire by phoning 046 943 3088. It appears it will be a cracking awareness event. Good luck to all involved! 21


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32 STEPS FOR CYSTIC FIBROSIS Upcoming Climbs The Ireland to Everest Team keeps climbing the Irish Peaks. As previously said, they welcome local participation in these events, particularly with sponsorship cards, collections and actual climbing if you so desire. The challenge will see them climbing shortly the peaks below, directions and meeting points are made available in their website and in our fundraising calendar closer to the climbing date:

Climbers from the walk up Slieve Na Callaigh, Co Meath on Sunday 23rd January.

Slieve Na Callaigh, Ireland to Everest 32 Steps.

• • • • •

Co. Antrim: Trostan (27th March) Co. Armagh: Slieve Gullion (3rd April) Co. Louth: Slieve Foy (10th April) Co. Leitrim/Sligo: Truskmore (17th April) Co. Cavan/Fermanagh: Cuilcagh* (25th of April)

Funding will go to the National Lung Transplant Fund recently established by the Cystic Fibrosis Association of Ireland. 32 Steps fo CF also climbed Seltanasaggart Co Roscommon on 20th February.

For further information on the Ireland to Everest 32 Steps for CF challenge log on to http:// irelandtoeverest.com/32-steps-for-cf.

You can also contact chief climber Cian O’Brolchain at 086 8882879 for more details.

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KARYN JENKINS MEMORIAL TENNIS TOURNAMENT 9th April Karyn Jenkins Memorial Tennis Tournament will take place in the Glenalbyn Tennis Club, Stillorgan, Co. Dublin on Saturday 9th April. All proceeds of the event will go to the CFAI. If you are interested, please contact us and we will put you in touch with the appropriate person.

PARIS MARATHON 2011 Sunday 10th April With 40,000 signed up for this event, it is sure to be an occasion to remember. From the Champs Élysées Avenue to Foch Avenue, through Bastille, Nation, Vincennes and les Tuileries, the Paris Marathon is guarenteed to delight the senses. We have 11 participants signed up for this event, seven of whom completed the New York Marathon in 2010. Our team head out on 8th April and return on Monday 11th. We wish them well on the trip and a safe and enjoyable marathon event.

ART & CRAFT BAZAAR Sunday 17th April An Art & Craft Bazaar will be held on Sunday 17th April in the Fitzpatrick Castle Hotel, Killiney from 12noon to 6pm in association with the Cystic Fibrosis National Awareness Week. A large variety of craft stalls will be there and an art exhibition featuring over 100 paintings will be held on the day. In addition, a painting by Brett McEntagart (Royal Hibernian Academy) will be auctioned. Admission for adults is €3 and children can go for free. Please contact Joan Millar at 087 2460078 for further details. Proceeds will go to both the CFAI and the Holy Trinity Church, Killiney.

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TEXAS HOLD’EM POKER Friday 29th April Kevin Cannon is organising a novel fundraising event involving one of the most popular card games out there. The Texas Hold’em poker night will take place in Courtown Golf Club Gorey, Co Wexford on Friday 29th April. The prize fund is estimated at €2,000 and entry to the competition is €50. If you are interested in taking part, please contact Kevin at 087 2595803

CF WEST 2nd Annual West of Ireland Mini-marathon Western Peoples 2nd Annual West of Ireland Mini-Marathon hopes to be an even bigger success this year. Approximately 200 participants have already signed up for this event, which takes place in Castlebar, Co. Mayo on May 1st at 12pm. Registration closes on April 1st, so not much time left to add your name to the list. In 2010, a total of 150 participants raised an exceptional amount of money for CFWest. The money raised from CF West this year, and forthcoming events over the next 12 months, will all go towards the building of an out-patient respiratory unit for PWCF on the grounds of Mayo Hospital.

MIDNIGHT SHAKERS MASQUERADE BALL Saturday 14th May The Midnight Shakers are a committee of young people from a range of professions that have come together with the dual aims of organising events for people whilst raising as much money as possible for a nominated charity or cause. This year the Shakers have chosen the CFAI as their nominated charity for the event. The event takes place on 14th May in the Burlington Hotel, Dublin with an attendance of circa 800 people. It promises to be an entertaining night with dancing, raffle and auction. Contact the organisers on midnightshakerssociety@gmail.com for more information or follow them on twitter @MdnightShakers.

PM GROUP AND GALCO COMBINE TO RAISE FUNDS FOR CF Sunday 15th May Galco have teamed up with the PM Group and have arranged a charity cycle to raise awareness for two great charities, the CFAI and Unicef ‘Zinc Saves Kids’. There are three different routes to choose from geared at varying levels of fitness and ability. All routes start at the Tallaght Leisure Centre on Sunday 15th May. 24


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Route 1: 20km through the foothills around Dublin Route 2: 55km through Dublin and Wicklow Route 3:120km through Dublin, Wicklow and Kildare A support crew, food stops, car parking, and a broom wagon will be provided in the event that you should get stranded! To find out more about this event, and to register, please log on to http:// www.galco.ie/charity-cycle-the-cycle.php

LIVERPOOL LEGENDS Saturday 21st May One of the great events to look out for in May is the “Liverpool Legend” fundraising night. Stephen Bolger is the person behind the organisation of the event, which involves music and a raffle and will be held in the Newtown Inn in Maynooth on 21st May with John Aldridge as the celebrity for the evening. Tickets at €10 available from Stephen on 087 7854247.

TOUR DE FORCE Annual Garda Cycle Work is well under way for the Annual Garda Cycle event which in 2011 is taking place in Ireland. As previously notified, CFAI have been chosen as the sole beneficiaries of the proceeds this year. Approximately 70 cyclists will take part in the cycle, which will start from the Garda Sports & Leisure Centre, Westmanstown, Dublin 15. The itinerary is as follow: • Depart 13th June at 9.30am from Westmanstown Golf Club for Athlone, • Athlone to Galway, via Clonmacnoise,Shannonbridge, Ballinasloe, Athenry, Galway • Galway to Clifden, via Spiddle, Carna, Maam • Clifden to Westport via Leenane, Louisburgh • Westport: Climb Croagh Patrick and return to Westport. If you live nearby do not hesitate to come out and cheer them!

PADDY KIERANS MEMORIAL WALK 1st October – 9th October Places are still available for our Paddy Kierans Memorial Walk 2011. The exciting location is Istanbul and Cappadocia: a destination reachable with a short flight but that will no doubt be an unforgettable experience. Each walker is requested to fundraise €2,625.00 for an unforgettable trip in the Turkish culture. 25


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The group will depart on October 1st, return on October 9th and will visit amazing places such as the Grand Bazaar and the Spices Market in the mysterious Istanbul. The walkers will then be transferred to the Turkish hidden gem of Cappadocia, unique and miraculous nature wonder. The price is based on person sharing and includes flights, accommodation, breakfast and dinner each day and lunches in Cappadocia only. Price is also inclusive of internal flights and transfers, buses etc. For information please contact Eufemia in CF House at 01 4962433 or one of the Committee members at the numbers below: Bernie 087 2353319; Julia 087 9911331; Frank 086 6060261 or Tony 086 25112731

NEW YORK MARATHON 2011 Sunday 6th November The New York City Marathon is one of the world’s great road races, drawing more than 100,000 applicants annually. A worldwide lottery normally determines if you are lucky enough to win an entry place to the race; however, if you run for a charity you get guarenteed entry. The Cystic Fibrosis Association of Ireland still has a limited number of places available for this purpose. The package on offer is the same as every year: each fundraiser must raise €5,000. This covers flights, accommodation, race entry and an unforgettable experience of running/walking/jogging through all five Boroughs of New York. If you’re up for the challenge, call Martin or Eufemia at National Office or log on to www.cfireland. ie for further details.

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CFAI Spectrum