Spectrum - Issue 27

May/Jun 2012

SPECTRUM

Published by the Cystic Fibrosis Association of Ireland

IN THIS ISSUE:

• Joint Symposium and ECFS Conference • St Vincent’s Building Update • ‘Turning the Sod’ at MWRH • Research News • CFAI Fertility Grant 2012 • Fundraising this Summer Issue 27: May/Jun 2012 www.cfireland.ie

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Spectrum / Issue 27

Dear All, Welcome to the 27th issue of Spectrum.

With the European Cystic Fibrosis Conference just around the corner, all systems are go with preparations in the National Office. CFAI are involved in organising a Joint Symposium on June 6th themed ‘Improving Access to Quality Care in CF: How Patients & Professionals can Work Together!’, followed by an evening dinner with music and entertainment provided by De Dannon. We look forward to welcoming CF community members to Dublin, from Ireland and abroad, for these important events.

Inside, we also have a brief overview and photo diary from our own conference, which was held in Wexford in April. Check out our website for videoclips of the main speakers if you were unable to attend this year. ‘65 Roses’ National Awareness week was a great success with members and volunteers from all over the country getting involved in fundraising and helping to raise the profile of Cystic Fibrosis by selling our 65 Roses pins nationwide.

We would like to extend our appreciation and very special thanks to all who supported us.

CFAI has received assurances from St Vincent’s University Hospital, the HSE and the Department of Health and Children that the 34 in-patient rooms to be provided in the new ward block are not inclusive of the 10 bed daycare rooms on a different floor in the new unit. This clarification is welcomed and is of course consistent with the Agreement of March 2011.

We are also delighted to announce that building work has commenced at Mid-Western Regional Hospital, Limerick for the new adult facility for people with CF with the ‘Turning of the Sod’ on 21st May. This development is testament to the tremendous dedication of the local Tipperary, Limerick and Clare Branches (TLC4CF) of the CFAI as well as the generosity of JP McManus.

For any teenagers with CF interested in exploring their creative side, challenge your imagination by getting involved with Helium, an arts organisation which aims to transform young people’s experience of healthcare, who are looking for members to participate in creative workshops in June (check out the ‘Online Voices’ article inside for more details).

Finally, check out our Fundraising section for all the latest on upcoming challenge and community events!

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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Section 01:

ECFS CONFERENCE : Page 2 Joint Symposium & ECFS Conference Section 02:

AWARENESS WEEK : Page 3–5 CFAI Annual Conference 2012 65 Roses / CF Awareness Week -Section 03:

LATEST NEWS : Page 6–1 1 St Vincent’s Hospital – Building Update ‘Turning the Sod’ at Mid-Western Regional Hospital, Limerick Storage of Newborn Screening Cards Science 140 Project Partners with CFAI Online Voices – Creative Workshops for Teens Living with CF ‘A Breath of Fesh Air’, article review from the Irish Medical News featuring Ms Karen Redmond CFAI Annual Report 2011 -Section 04:

RESEARCH NEWS : Page 12–13 Phase 2 Study of Kalydeco & VX-809 in Combination Cork Scientists Identify Novel Therapy for CF Patients Survival of Irish Citizens Following Lung Transplantation -Section 05:

GRANTS AND INFO : Page 14–15 CFAI Fertility Grant Scheme 2012 – Now Open Disability Allowance and Marriage Travel Information for PWCF -Section 06:

PWCF SPOTLIGHT : Page 16–18 A Life Less Ordinary, By Patricia Duffy Barber, PWCF, Dublin -Section 07:

FUNDRAISING : Page 19–25 1 in 1000 Overview of 65 Roses Week Challenge & Community Events Nationwide See Inside for More...

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ECFS CONFERENCE

SECTION 01

PAGE 2

Joint symposium Wednesday 6th June The Cystic Fibrosis Association of Ireland, in conjunction with CF Europe, CF Worldwide and the European Cystic Fibrosis Society, will be hosting a Joint Symposium on Wednesday 6th June, 2012 to mark the opening of the European Cystic Fibrosis Conference taking place in Dublin from the 6th–9th June.

The theme of the Joint Symposium is ‘Improving Access to Quality Care in CF: How Patients & Professionals can Work Together!’. The meeting is of particular interest to patient organisations, directors and members of the CF care team (physicians and allied health professionals) and people involved in health policy.

The afternoon session will include a screening of the European Premier of the film ‘The Power of Two’, a documentary recently released in the USA that has received considerable acclaim and follows the lives of two sisters with CF. An evening meal and “Craic agus Ceol” concert featuring De Dannan will take place in the Gibson Hotel that night. We look forward to meeting everyone who has registered to attend!

European Cystic Fibrosis Conference 6th–9th June, Dublin The European Cystic Fibrosis Conference is just around the corner now and final preparations are being made to welcome scientific and clinical teams from all over the world to discuss, debate and listen to all the latest developments in CF.

The conference attracts around 2,000 delegates annually and Dublin numbers have well surpassed this with 2,700 delegates confirmed to date. In conjunction with the conference organisers, CFAI have been organising and co-ordinating volunteers for the event to ensure its smooth running. We would like to extend our thanks and appreciation to members and friends of the CFAI who have kindly volunteered their time to help out.

We look forward to updating members all about the conference in the next issue of Spectrum.

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AWARENESS WEEK

SECTION 02

PAGE 3—5

CFAI Annual Conference 2012 Overview and Photo Diary The CFAI Annual Conference took place on 13th-15th April in Whites Hotel, Co Wexford.

Themed, ‘Working Together to Improve CF Services’, this years conference attracted both new and old members of the Association for an informative and fun-filled weekend.

65 Roses Awareness Week was officially launced on the opening night and Rose of Tralee, Tara Talbot, was at hand to present the CFAI Awards for 2012. CFAI Fundraising/Advocacy Awards were given to the PWCF Adult Group accepted by Patricia Duffy-Barber, the Galway Branch award was accepted by Chairperson Mary-Lane Heneghan, and the award for TLC4CF was accepted by Catríona Hayes. A Special Recognition Award was also presented to Prof Gerry McElvaney, CF Consultant at Beaumont Hospital, for his outstanding contribution to CF services in Ireland over many years.

In his Ministerial Address address to the conference on Saturday afternnon, Minister for Health, Dr James O’Reilly, T.D said that ‘We should be seeking to make Ireland’s management of Cystic Fibrosis not as good as that in other countries, but to become a world leader. It’ll take us time.

But your Association has already achieved more than its founders could ever have expected.

I’m committed to ensuring as much progress as humanly possible over the next few years.’

We woud like to take this opportunity to once again thank our generous sponsors Novartis, Chiesi, Baxter Healthcare and Vertex Pharmaceuticals – their support enabled us to subsidise the cost of the conference for members this year. Many thanks also to the Wexford Branch for their support in organising such a successful event.

If you were unable to attend the conference this year, fear not; video clips of all the main speakers can be viewed through our website. Notes from each of the seminar workshops will also be made available shortly.

L-R: Minister for Health, Dr James O’Reilly T.D.; Philip Watt CEO CFAI; John Coleman, Chairperson CFAI; and Dr Barry Plant, CF Consultant, Cork University Hospital.

L-R: Caroline Heffernan, CFAI; Patricia Duffy-Barber, PWCF; Rose of Tralee, Tara Talbot; and Philip Watt, CEO CFAI.

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Minister for Health, Dr James O’Reilly T.D, addressing conference delegates.

Lynda Coleman, Janice Ryan, Sinéad Andrews, Carolyn Thornton and Zoe Woodward, CFAI Conference on Saturday.

L-R: Jolyn Murphy, Ciara Enright, Suzie Brock, Rosie Begley, Alica May and Caroline Heffernan – all staff of CFAI.

Fiona Bodels, Wexford Branch and Rose of Tralee Tara Talbot.

Aifric Smith and Joe Dunne, Parents.

Rose of Tralee Tara Talbot and Declan O’Doherty.

L-R: Martin Cahill, CFAI; John Coleman, Chairperson CFAI; Patricia Duffy-Barber, PWCF; Ciara Enright, CFAI; Caroline Heffernan, CFAI; Philip Watt, CFAI; Minister for Health, Dr James O’Reilly T.D; Carol Brady, PWCF; Dr Barry Plant, CF Consultant, Cork University Hospital; Declan O’Doherty, PWCF; and Tomás Thompson, CFAI.

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65 rOSES Awareness wEEK Overview and Photo Diary We wish to extend our appreciation and very special thanks to all who participated in our National Awareness Week campaign. Our volunteer collectors, Branch members and individual event organisers were, as usual, so important to the success of this annual venture. We have included a few photographs below from the official launch of awareness week, as well as some snaps sent in to us by our volunteers and events held during the week.

See the fundraising section for more details.

Katie Moore, Milliner and PWCF, placing her 65 roses hairpiece on Rose of Tralee Tara Talbot at the launch of awareness week.

Anthony Dempsey, PWCF, and friend fundraising for CF in Citywest shopping centre.

Monaghan Roses raise funds for CF at Monaghan shopping centre.

Baby Saoirse with the Rose of Tralee Tara Talbot and parents Aifric Smith and Joe Dunne at the launch of 65 Roses week.

A ‘Zumbathon’ was held on Friday 20th April with Lisa Mulligan and the Monaghan Roses. Third from left is Caoimhe Flanagan, who was chosen as this year’s Monaghan Rose.

Thank you to Gertie Ward, Marian Duggan and all participants at The Karyn Jenkins Memorial Tennis Tournament who raised an amazing €7,285 with more to come from our National Awareness Week.

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LATEST NEWS

SECTION 03

PAGE 6—11

St Vincent’s University Hospital Update The Minister for Health and Children confirmed at our Annual Conference in April that the new CF Unit in St Vincent’s University Hospital (SVUH) will be completed on time on the 22nd June.

There will be a deep clean by the hospital and patients will be moved in stages in July.

As reported in previous issues of Spectrum there is an agreement between the CFAI, the Minister of Health, the CEO and the lead clinician in St Vincent’s Hospital dated 16 March 2011 (below) on the commitment of up to 34 in-patient beds for CF patients in SVUH. CFAI has continued to highlight the ongoing demand and waiting list for CF beds in St Vincent’s Hospital which clearly demonstrates why this new unit and in-patient capacity is badly needed. The new unit will include on a separate floor a CF day-care centre with 10 rooms.

The CFAI continues to monitor closely present and forthcoming developments, timescales and patient transfer to the new unit and we recently met with all the key stakeholders involved in the original agreement. As part of this process CFAI has received assurances from SVUH, the HSE and the Department of Health and Children that the 34 in-patient rooms to be provided in the new ward block are not inclusive of the 10 bed daycare rooms in the new unit. This clarification is welcomed and is of course consistent with the Agreement of March 2011:

Artists impression of the new unit at Vincent’s.

Joint Statement of 16 March 2011 We welcome the development of the in-patient and daycare Cystic Fibrosis unit at St Vincent’s University Hospital. It represents a major improvement in the care of Cystic Fibrosis patients in Ireland. It is essential that all inpatients are cared for by multidisciplinary teams with special training in Cystic Fibrosis and in single en suite rooms.

It is Department of Health policy that there must be sufficient inpatient beds to treat all people with Cystic Fibrosis who require hospitalisation. The number of Cystic Fibrosis inpatients at St Vincent’s University Hospital is expected to vary between 20 and 34. In this respect, 20 inpatient beds is a minimum and not a maximum, and the number of beds with appropriately trained staff can potentially accommodate 34 inpatients.

When the beds are not required for Cystic Fibrosis they will be used for other inpatients with a clearly agreed protocol that there will always be beds available for patients with Cystic Fibrosis who require admission.

Nicky Jermyn, CEO, St Vincent’s University Hospital Group Dr Charlie Gallagher, Director, National Referral Centre for Adult Cystic Fibrosis Philip Watt, CEO, Cystic Fibrosis Association of Ireland Dr Barry White, National Director, Clinical Strategy and Programmes, HSE 6

May/Jun 2012

‘Turning of the Sod’ AT mwrh, lIMERICK

By Katie Murphy, Regional Development Officer, TLC4CF Since TLC4CF was formed in 2008 the regional Branch of the CFAI has made significant advancements in raising awareness of CF in the region and improving hospital facilities for people with CF living in the Tipperary, Clare and Limerick areas. Monday the 21st of May marked the official commencement of construction of the new adult cystic fibrosis unit at the Mid-Western Regional Hospital, Limerick.

TLC4CF have been working relentlessly towards this day for a number of years, and with the support of JP McManus, CFAI and the amazing fundraising work put in by all TLC4CF members and supporters, we are almost there!

Finance Minister Michael Noonan officially turned the sod of this new multi-million euro unit on the grounds of the Mid-Western Regional Hospital. The unit consists of five stories and will provide new facilities dedicated to breast diseases, stroke/neurological conditions, skin disorders and Cystic Fibrosis. Two floors of this new state of the art building will be dedicated to the care of adult patients with CF and will provide 9 in-patients en-suite rooms and an outpatient centre with 5 individual en-suite rooms and a CF gym.

Minister for Finance Michael Noonan with Katie Drennan, PWCF, at the event.

Representing TLC4CF on the day Katie Drennan (PWCF) spoke on behalf of TLC4CF and CF patients attending the MWRH. “It’s a tremendous day. This new unit means peace of mind for so many people with CF. It means we can be closer to home when we have to come into hospital. People with CF are very vulnerable to cross-infection – this new isolation unit means we don’t have to worry about that when we come into hospital” Katie Drennan, PWCF and TLC4CF advocate.

Storage of newborn screening CARDS HSE Update Below is an update on the HSE website in relation to queries about stored Newborn Bloodspot Screening Cards: ‘The National Newborn Bloodspot Screening Programme (NNBSP) screens all newborn babies for six conditions soon after birth, to ensure that any baby with one of these rare conditions is identified and treated as early as possible. It involves taking a drop of blood from the baby’s heel onto a Newborn Screening Card (NSC) and sending for testing to the National Newborn Bloodspot Screening Laboratory. After testing is completed, the Newborn Screening Card is then stored.

Testing of all babies born in Ireland for these rare but serious conditions started in 1966. In most cases initially, consent was verbal and then later written, but storage of the screening card was 7

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not explicitly referred to as part of consenting to the screening programme. The cards were archived and stored once the test was complete. In 1984, due to flooding in the storage facility, archived screening cards were destroyed. The current archive contains newborn screening cards from babies tested from approximately 1984 to the current time.

The Office of the Data Protection Commissioner carried out a review in 2009, and indicated that those newborn screening cards which are currently stored without explicit consent should now be disposed of. The Department of Health further reviewed the issue in 2011 and recently asked the HSE to implement this position as continued storage of these archived NSC’s breaches both EU and national data protection legislation. The HSE now wishes to address this breach while ensuring that any parents, individuals or clinicians who wish to access their archived newborn screening card may do so prior to disposal.

In July 2011, significant improvements to this programme were introduced nationwide. These included: ● The addition of screening for Cystic Fibrosis to the programme ● The launch of an enhanced information and consent process for all parents / guardians and this website From July 2011 onward, all parents who consent to have their baby screened are also asked to consent to their newborn’s screening card to be stored for 10 years after the test, after which time the card will be safely disposed of. This change brings the consent and screening process in alignment with Data Protection requirements – however, it does not resolve the issue of historically archived newborn screening cards, which are being stored without the explicit consent of parents.

There are currently over 1.5 million screening cards stored by the programme, and the proposal now is to arrange for those cards that are more than 10 years old to be disposed of. ● This is due to happen later during 2012, after a period of consultation, and then from 2013 onwards, all cards that are more than 10 years old will be routinely disposed of in the child’s 11th year. ● The HSE will work with the NNBSP to manage this process and ensure that all parents and individuals affected by this step are informed in advance. The HSE expects to begin this process in early Summer 2012, and will place notices in newspapers and new media to inform the public and allow ample time to make a request for the return of a card. ● In the meantime, the HSE will working with the NNBSP and other interested groups to plan for this service, explore storage arrangements for cards that are to be retained, and ensure that a user friendly process is developed.’

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Science 140 project partners with CFAI

By Maria Daly, PWCF Definitions. Long, rigged, unmovable definitions. Highlighted and underlined. Chanted wordperfect until embedded in the brains of every science student. A new project is using the power of social media to reinvent the dreaded definition. Enter Science 140! This crowdsourcing social media project is aiming to collect ideas, definitions and thoughts about science in 140 characters or less. Contributors must be armed with creativity to bring their explanations to life in a Twitterstyle character limit.

The project was aptly conceived on Twitter and is being co-ordinated by a wonderful crew of science enthusiasts. This team includes Aoibhinn Ní Shúilleabháin (TV/radio Broadcaster and Scientist), Humphrey Jones (FrogBlog.ie), Paul O’Dwyer (Dentist/Science Communicator) and lastly, me! I’m delighted to be involved in such an exciting project.

People are invited to submit their short and snappy ideas via Science140.org or on twitter using #Science140. We’re also looking for original graphics and drawings that can be used to describe science topics. There has been phenomenal support for the project so far with over 700 submissions received in less than 3 weeks. We’ll be putting together the best bits in a book with all proceeds going to CFAI-funded research.

Example of an illustrated tweet for the Science 140 project.

E=MC2 is another example Science 140 project.

from

the

At the end of April, we were delighted to announce the CFAI as our charity partner. The CFAI offer support and assistance to people with CF and their families but also help fund research projects in Irish universities. As the members of the Science 140 team all have a background in science, the CFAI have agreed that the funds raised during the project will be targeted towards their research projects! A total of four research projects are currently being funded by CFAI in conjunction with the Health Research Board.

We’d love for the CF community to get involved in our project! We will continue to collect tweets over the next few months and will begin the process of selecting the best 1,500 for the finished product! The book launch is planned for October so I’ll be updating you again in a couple of months. It only takes a minute to contribute so check out Science140.org or @Science140 for more information. Hope to see you online!

PS: Watch out for us at the European CF Conference on 6th June. We’ll have a special leaflet at the CFAI stand and our topic on #Science140 will be Cystic Fibrosis.

Maria Daly (PWCF) is a curator of Science 140 and blogs at ScienceCalling.com 9

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Online Voices Creative Workshops for Teenagers Living with Chronic Illness

Are you interested in filmmaking?

Would you like to tell your story in a unique and creative way?

Creative workshops for teenagers living with chronic illness will take place in Dublin on June 26th and June 29th, facilitated by artists Emma Eager and Ben Murnane, in association with Helium Children’s Arts & Health and the Digital Hub Development Agency.

Helium is an arts organisation which aims to transform young people’s experience of healthcare by supporting their creativity and imagination. The Digital Hub fosters innovation, technological development and creativity in a supportive, entrepreneurial environment and engages with local groups, students and artists on a variety of learning and community projects.

These workshops are aimed at teenagers aged 15 and older who are interested in exploring their creativity through filmmaking, acting, writing or art. Teenagers with Cystic Fibrosis are invited to take part in these workshops online through the video link facility, Skype, and to share stories, poems, scripts, artwork or creative ideas.

Helium are looking for teenagers with CF to get involved in their creative workshops – are you interested?

When: 26th June & 29th June 2012 (the workshops will use the same format for both days – please specify which day suits you best).

Time: 2-5 pm Contact: Emma Eager at communications@helium.ie for more information and to register for one of the workshop days.

If you enjoy the workshop day and you are keen to turn your creative writing into a short movie or transform your artwork into an animation, we aim to hold a film week in August where you will get the chance to collaborate virtually with professional filmmakers and artists.

Emma and Ben teamed up with teenagers in February to make a short film based on Ben’s memoir, Two in a Million, about his teenage experiences of living with the rare genetic disease, Fanconi anaemia. Ben’s film will be screened at the workshops and you can learn more about the film, watch a trailer and view behind-the-scenes photos here: http://helium.ie/wordpress/ index.php/two-suitcases-project-a-creative-voice-for-teenagers-living-with-chronic-illness/ Emma Eager has been funded by the Arts Council’s Artist in the Community Scheme managed

by Create – the national development agency for collaborative arts, and is kindly supported by Children in Hospital Ireland. Emma studied film and broadcasting at DIT and English literature at Trinity College, Dublin. She works with Helium on communications for various projects. Ben Murnane studied theatre and English at TCD; he has published three books, including his memoir and a collection of poetry, and written for newspapers and radio.

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‘A Breath of Fresh Air’, FEATURING Karen Redmond In the Irish Medical News The Irish Medical News recently published an article (‘A Breath of Fresh Air’, 30th March 2012) featuring the commencement of Ms Karen Redmond as the new specialist thoracic lung transplant surgeon at the Mater Hpspital in Dublin.

The article highlights the new transplant techniques that when utilised can maximise the number of transplants carried out each year. This includes a graft reduction technique, whereby adult donor organs can be reduced in size, enabling larger organs to be utilised even in smaller patients. It was also reported that such a graft reduction technique has already been carried out in Ireland.

Ex vivo lung perfusion (EVLP) is another technique that Ms Redmond has expertise in. Describing the process, she explains ‘Essentially we take the organs, bring them back to the hospital and put them on a circuit where we ventilate and perfuse the organs...We give the organs steroids, blood-thinning agents, antibiotics, and we remove fluid from the lungs.’ This technique will help maximise the number of successful transplants, and will also minimise the risk of rejection. Ms Redmond was involved in the first EVLP transplants to be carried out in the UK in 2009. Staff from the Mater Hospital have recently undergone training in Sweden to support Ms Redmond in carrying out this technique in Ireland.

To read the full article, please log on to: http://imn.ie/features/4774-a-breath-of-fresh-air

CFAI Annual Report 2011 Now Available Online The CFAI Annual Report for 2011 was recently published. As well as addressing the progress and challenges of the CFAI and the CF community on 2011, it also provides an update on building work and developments in CF centres in Ireland.

A detailed report of the CFAI Conference in 2011 is also included along with an overview of the major fundraising events that took place last year.

If you would like to view this report, please log on to our website and click on the publications tab: www.cfireland.ie/annualreports or log on to Issuu: http://issuu.com/cfai We have a limited number of hardcopies in the National Office, but please do give us a call if you would like one posted to you and we will do our best to arrange it.

CFAI Annual Report 2011.

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RESEARCH NEWS

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Phase 2 Study of Kalydeco & VX-809 in Combination Promising Interim Results On May 7th, Vertex Pharmaceuticals announced that interim data from a Phase 2 combination study of VX-809 and KALYDECO™ (ivacaftor) showed significant improvements in lung function (FEV1) in people with cystic fibrosis who have two copies of the F508del mutation.

The F508del mutation creates a defective protein that does not move to its proper place at the cell surface.

Researchers believe that a combination of VX-809 and Kalydeco may work better than using either drug alone in people with this mutation.

The ongoing Phase 2 study enrolled 108 people, ages 18 and older, who have one or two copies of the F508del mutation. The results announced on 7th May were based on data from about half of the study participants after they had completed 56 days of treatment. The trial is ongoing and complete results, including data from patients with one copy of the Delta F508 mutation (heterozygous Delta F508), are expected this summer.

Complete results of the Phase 2 combination study of VX-809 and Kalydeco should be available at the end of summer.

Kalydeco, which targets the underlying cause of CF — a faulty gene and its protein product, CFTR, was recently approved by the US Food and Drug Administration (FDA) for use in the United States, but is not yet approved for use in Ireland. It is currently under consideration with the European Medicines Agency/Irish Medicines Board. CFAI will keep members updated on all matters relating to Kalydeco and VX-809.

For more information on this study, please refer to the Cystic Fibrosis Foundation website: www.cff.org/aboutCFFoundation/NewsEvents/2012NewsArchive/5-7-Phase-2-Kalydeco-VX809-Interim-Data-Results.cfm

Cork scientists identify novel therapy for cf pATIENTS Study Published in MBio, March 2012 Scientists at University College Cork have identified a novel therapy for Pseudomonas aeruginosa, a bacteria which causes infections in people cystic fibrosis. The research was carried out the Alimentary Pharmabiotic Centre (APC), a Science Foundation Ireland funded research centre based in UCC, Teagasc Moorepark Research Centre and CIT. 12

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A build-up of mucous in the lungs of people with CF often gets contaminated with Pseudomonas aeruginosa. This bug is difficult to treat with normal antibiotics, which cannot easily gain access to the bacteria in the lungs. This usually means the patient has to take antibiotics on a continual basis, which can lead to the development of antibiotic resistant superbugs.

Led by Prof Colin Hill in UCC and Prof Paul Ross in Teagasc, the APC researchers used a method called phage therapy, which involves identifying and characterising bacterial viruses (phage) that can attack and kill Pseudomonas aeruginosa within minutes of initial contact. The phage ‘infect’ the infecting bacteria and multiply within them, leading to cell death and the release of hundreds of new phage. One of the advantages of phage therapy is that any viruses which ‘find’ a target multiply at the target site, generating more viruses and amplifying the therapeutic effect.

L-R: Prof Fergus Shanahan, APC Professor; Colin Hill, APC; Dr Debebe Alemayehu, APC; and Prof Paul Ross, Teagasc.

The researchers showed that their newly isolated phages could very effectively kill Pseudomonas aeruginosa in situations mimicking real infections, and could eliminate all strains of Pseudomonas isolated from CF patients. The research, which involved a collaboration with Prof James Martin of McGill University in Canada, is published in mBio, a high impact journal recently launched by the American Society for Microbiology.

survival of Irish citizens following lung transplantation Study Published in the British Medical Journal, March 2012 Led by Prof Jim Egan, Clinical Lead at the National Office of Organ Donation and Transplantation.

Introduction and Study Objectives Prior to 2005, Irish citizens had exclusively availed of lung transplantation services in the UK. Since 2005, lung transplantation has been available to these patients in both the UK and Ireland.

The aims of this study were to evaluate the survival outcomes of Irish patients undergoing lung transplantation in both the UK and Ireland. The researchers retrospectively examined the outcome of Irish patients transplanted in the UK and Ireland. Lung allocation score (LAS) was used as a marker of disease severity.

Results A total of 134 patients have undergone transplantation, 102 in the UK and 32 in Ireland. A total of 52% were patients with cystic fibrosis. In Ireland, 16% had cystic fibrosis. A total of 96 double sequential transplants and 38 single transplants have been performed. The 5-year survival of all Irish citizens who had undergone lung transplantation was 73%. The 5-year survival of Irish patients transplanted in the UK was 69% and in Ireland was 91% and 73% at 5.01 years.

Conclusions International collaboration can be achieved, as evidenced by the favourable outcomes seen in Irish citizens who undergo lung transplantation in both the UK and Ireland. Irish citizens undergoing lung transplantation in Ireland have a higher LAS score. Despite excellent outcomes, an intentionto-treat analysis of the treatment utility (transplant) indicates the limited effectiveness of lung transplantation in Ireland and emphasises the need for increased rates of lung transplantation.

To access the full article: www.ncbi.nlm.nih.gov/pmc/articles/PMC3317140/?tool=pubmed.

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GRANTS & INFO

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CFAI Fertility Grant Scheme Now Open The CFAI Fertility Grant provides financial support to people with cystic fibrosis (PWCF) and their respective partners who wish to undergo fertility assessment/treatment in the hope of becoming pregnant. Since this scheme was first rolled out in 2010, a total of 14 fertility grants have been awarded to members.

How much funding is available?

The value of the grant for first-time applicants in 2012 is €3,000. Members who previously availed of the fertility grant are eligible to apply for a second time – the value of the grant for second-time applicants is €2,000.

How do I apply?

A Fertility Grant Application form must be completed and supporting documentation from your CF Centre and the fertility clinic you plan on attending must be sent to the CFAI National Office by a particular deadline.

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

What is the deadline for all applications?

All Applications and Supporting Documentation must be submitted to the CFAI National Office by Friday 28th September 2012.

Where can you get more information about this call?

• CFAI Fertility Grant 2012 – Policy and Guidelines (Includes general information, guidance on the application process and additional supports) • CFAI Fertility Grant 2012 – Application Form These forms are available for download under the ‘Grants and Services’ section of our website.

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

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Disability Allowance AND Marriage

By Tomás Thompson, CF Advocate Disability Allowance (DA) is a means-tested payment. If a PWCF gets married the income of their spouse is taken into account in assessing their means. In some cases where no member of the family is working or earning an income, there will be little or no change to the PWCFs DA and, in some cases, the family income may increase. On the other hand, if the spouse of a PWCF is working and earns an income, that income will be regarded as family income and will be assessed as means for both spouses.

A PWCFs DA can also be affected if the spouse of a PWCF is getting certain social welfare payments, such as a FÁS or VTOS course, and getting an allowance in his/her own right.

To get the DA allowance your total means must be below a certain amount. The main items that count as means are: ● Cash income that you or your spouse, civil partner or cohabitant may have. ● Capital, for example, the value of savings, investments, shares, any property you may have (other than your own home). However, the first €50,000 of any capital you have is not taken into account. ● Maintenance paid to you More information on the above items and instructions on how to calculate the weekly means can be found on the citizens information website or at the below link: www.citizensinformation.ie/en/social_welfare/social_welfare_payments/disability_and_illness/ disability_allowance.html Income from Work You can do rehabilitative work and earn up to €120 per week (after deduction of PRSI, any pension contributions and union dues) without your payment being affected. You must get permission from the Department of Social Protection before you start work.

50% of your earnings between €120 and €350 will not be taken into account in the Disability Allowance means test. Any earnings over €350 are fully assessed in the means test.

If you have any questions regarding the above you can contact your local citizen’s information office, call CF House or email our CF Advocate Tomas Thompson at tthompson@cfireland.ie.

Travel INFORMATION FOR pwcf What Not to Forget What do people with cystic fibrosis and their families need to take into consideration when planning a short or extended vacation?

The CFAI have drafted up a few helpful tips to help with preparations. From health and travel documents to medical devices and medications, all the information you should need is included in our Travel Tips and Travel Insurance document which is available on our website.

Please call the National Office if you would like a hardcopy of these documents posted to you.

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PWCF SPOTLIGHT

SECTION 06

PAGE 16—18

A Life LESS oRDINARY

By Patricia Duffy Barber, PWCF, Dublin I’m 33, and at the moment I’m keeping well (thank God!) and definitely keeping busy! I’ve written on the different aspects of living with CF, under a few different headings below.

Growing Up I was born in 1978 and was diagnosed at approximately 8 months old. Growing up with CF in the ‘80’s was probably a lot different than a child growing up today I imagine. During my childhood, I remember having a fairly consistent routine and good habits instilled by my parents.

Physio (not always willing on my part) with my ‘thumper’ for postural drainage and a lot of clapping was rounded off with some tickling and laughing! I would not have been very sporty at school, but learned to swim at an early age and took Irish dancing lessons; along with going out to play with friends ‘on the road’, these activities kept me going with regular exercise. I would have kept quite well, and despite some chest infections and a few in-patient stays, I didn’t miss out on much school growing up.

I was a child of the ‘low fat diet’ era, as the technology behind pancreatic enzyme replacement therapy was not as sophisticated as it is today. Luckily my parents had to keep up with my huge appetite and did not struggle with mealtimes and weight gain as PWCF of all ages (and their parents) do. I would have started taking them while in in my early teens and it allowed me to venture into the ‘dark side’ – the other world of ‘fatty food’ – including ice cream, crisps, sausages, chocolate etc! Having said that old habits die hard and to this day I prefer to drink ‘slimline’ milk (sorry to my dietician!).

‘A laugh with someone who knows just how you feel goes a long way when you’re under the weather’ Transition to an Adult Hospital Memories of transition from Crumlin to St Vincent’s Hospital are starting to become hazy as it’s 20 years ago this year. I can remember having lots of tests, a nurse talking in earnest about genetic counselling (I would have the same discussion about 18 years later) and showing me the CF sitting room.

It was a few years before I needed admission, and I could see the pro’s and cons. For example, it was difficult sharing a 6 bed ward with the sick and elderly but on the other hand it was great to see a few older people with CF ‘doing their thing’ including taking IVs in their stride, ordering late night pizza, and having the craic with the night nurses. Again, I know times have changed since then...but a little bit of a laugh with someone who knows just how you feel goes a long way when you’re under the weather.

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May/Jun 2012

College I qualified 12 years ago as a Speech and Language Therapist following a four year degree from Trinity College; there were some clinical placements which didn’t really suit me with having CF, however, as the college staff knew about my CF from the outset, they were understanding and accommodating. My preference was to work with children’s developmental communication difficulties rather than rehabilitating adults; with CF I was trying my best to avoid being in hospital and I felt it was wiser to opt for a job in a non-hospital environment. During my years in college my parents helped me learn to how to drive and get my own car. I found this helped cut down on the time spent on stuffy damp buses and it gave me some extra time to get my ‘stuff’ done in the mornings. I did have some in-patient IV’s while I was in college but I found home IVs worked well for me.

Work Due to a handy commute and plenty of great colleagues, I’ve been happy to remain working in the same area since leaving college. Daily work is more mentally tiring than physically tiring, and it’s a relatively low risk environment in terms of picking up bugs. I enjoy working with children and their families, despite the significant pressure on many frontline services like mine to deliver quality services each day.

Day to Day I’m enjoying married life with my husband Kieran – we met on a ski holiday in 2003. I came straight home from the slopes with a long distance boyfriend and a chest infection to boot! As I hadn’t mentioned CF specifically at that stage, he was pretty surprised to hear on the phone when I got back that I was putting my feet up in St Paul’s ward! We were married in 2007 and in 2010 had a beautiful baby boy Charlie (just under 2 years of age now).

My husband and I considered all the issues prior to having a baby; Kieran was tested to see if he was a carrier, as he’s not (and I obviously am a carrier), we know that Charlie will only be carrying the gene rather than having CF. We questioned whether I’d have the time to take care of myself; but we kind of knew that that will always be a daily challenge. I am the first to admit I could provide anyone with all the reasons to be compliant and adhere to a treatment schedule but, to be honest, I would be lost without my husband and family prompting/reminding me to mind myself.

At the moment part-time work allows me to catch up with myself, and to enjoy spending lots of time at home with Charlie. He’s a real live wire and is always on the go...wonder where he got that trait?!

In general I tend to keep pretty busy, at the minute I’m typing this and using my neb, and keeping a eye on my Charlie who’s taking a nap!

Patricia with husband Kieran and their little boy Charlie on St Patrick’s Day.

Getting Involved – the CF Association of Ireland I’ve been actively involved with the Association since leaving secondary school. I believe it’s important that people learning about CF hear a balanced message about living with CF. It’s difficult, and there are often as many challenges as there are achievements, but with the right support and the best possible services, there’s plenty to be optimistic about.

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In the past I’ve spoken on RTÉ Radio to Pat Kenny and provided ‘voice over coughing’ for a special CF episode of ‘The Clinic’! I have been invited to address the CF National Conference and represented the Association at an international conference in Stockholm in 2000. At the moment I’m involved with the PWCF Adult Group in the role of Chairperson, and was nominated by them to represent the Group at National Executive Committee (NEC) level. I was pleasantly surprised to be elected as Association Secretary at the NEC; a job which involves attending meetings of the NEC and also sitting with the Staff and Finance committee for their meetings.

L-R: Philip Watt, CEO CFAI; Patricia accepting a CFAI Award on behalf on the Adult Group; Rose of Tralee Tara Talbot; and John Coleman, Chairperson CFAI at the CFAI Annual Conference 2012.

The PWCF Adult Group is a ‘virtual’ branch with about 50 members scattered across the country; a core group of about 20 members who keep in touch and join into regular phone meetings with the rest keeping in touch via our Facebook group. Caroline and Tomás, the CF Advocates, join in on the meeting phone calls and provide an insight into the experiences of PWCF in different parts of the country.

Our phone meetings provide an opportunity for people to offer advice and support to each other.

We also work together as a group, focusing on projects that will improve the lives of PWCF. One of our more recent projects was a proposal to the Association for an Exercise Grant; this has proved immensely successful in giving hundred’s of PWCF a new opportunity to actively maintain their own health, and we are grateful to the Association for the financial support in making this proposal a reality.

We’re proud that our publication Future Force magazine is produced by the PWCF Group for our community. It was first launched in 1996, and since then a variety of dedicated writers and editors have endeavoured to voice issues that matter to people with CF. We’re passionate about our aim to represent PWCF who want to have opportunities to connect socially; we have participated in the development of national cross-infection guidelines to allow PWCF who choose to mix, to be informed and for them to benefit from meeting others whilst minimising possible risks.

If you would like to phone in to one of our calls, please contact CF House for information, or if you’d like to keep up with our activities, find us on facebook – PWCF Group Ireland.

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May/Jun 2012

FUNDRAISING

SECTION 07

PAGE 19—25

1 IN 1000

By Ciara Enright, 1 in 1000 Co-ordinator Thank you to all our wonderful ladies who have signed up to the 1 in 1000 campaign for this year’s Flora Women’s Mini-Marathon. We are looking forward to seeing you all take to the streets of Dublin in a sea of purple as you undertake the 10km course on June 4th in aid of Cystic Fibrosis.

Supporting this years 1 in 1000 campaign are ‘Rose of Tralee’ Tara Talbot, TV3 ‘Xpose’ presenter Karen Koster, and ‘Rubberbandits/ Republic of Telly’ Star Madeline Mulqueen.

By now you are organising the last few details, travel, accommodation, sun block or a rain coat...?

Everything will fall into place and here in CFAI we want to make sure you enjoy every step of it.

So for the 3rd year running we will be providing a base for our ‘1 in 1000’s’ – a secure venue to leave your belongings, grab some goodies and enjoy some deserving refreshments after you complete your 10km.

Where: Harcourt Hotel (down stairs in ‘D2 nightclub’) Address: Harcourt Street, Dublin 2 (10 minute walk from the start and finish line) The 1 in 1000 crew will open registration at 12.00 noon whereupon arrival you will have a place to leave your belongings and you will receive a goody bag (before or after the race, that’s entirely up to you). Our staff and volunteers are there on race day to ensure you have an enjoyable experience so don’t be shy and approach us (we will be the ones in white) with any questions/ queries you may have.

After completing the 10km, you can make your return from the finish line to the Harcourt Hotel 19

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where you will be served refreshments; a free raffle will take place with GREAT prizes whilst enjoying our DJ who will entertain you and your friends with music and more.

We have given away some fantastic prizes already but it won’t stop after race day, for those who have their sponsorship/donations in by June 22nd you will also be entered into our final 1 in 1000 draw with more amazing prizes (those using our My Charity page have already been entered into this draw).

So ladies, we wish you the very best of luck with your final training and every success with your fundraising. Everyone should have received their t-shirts/sponsor cards by now, if you require more fundraising material please feel free to contact Ciara at runningforcf@cfireland.ie or LoCall 1890 311 211.

In the next issue of Spectrum we will have a full report on how the day went with lots of photos.

See you on June 4th!

65 Roses nATIONAL AWARENESS wEEK Thanks to all involved!

Although too many to mention individually, particular tribute to Ms. Ann O’Dwyer who helps every year. Ann was a member of the NEC when the Association started up in 1962, and the meetings were held in her house initially.

Gertrude Ward, who once again organised the Kathy Jenkins Memorial Tennis Tournament, raising €7.285; Steve Collins, proprietor of Trinity Tattoo in Naas, who raised €3,071 donating the proceeds of a day spent tattooing a specially designed tattoo “Just Breathe” and Joe Doyle from Enniscorthy who raised €1,041 through a Cabaret Night in his pub. Thank you all. You have made a difference to Cystic Fibrosis. To those not mentioned, well done and thank you. It looks like 2012 will have been our best National Awareness Week yet.

A word of thanks also to Ms. Finoulla Ryan and the transition year students from Maryfield College (all 95) who gave of their time to collect in Dublin City Centre.

65 Roses / CF Awareness Week ran from 13th – 20th April 2012.

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May/Jun 2012

Challenge events Thanks to all involved!

Dublin City Marathon 2012 Join our Dublin City Marathon CFAI Team. The Dublin Marathon is one of Ireland’s biggest and best marathons!

How to join our team: Enter the Dublin City 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

Join the CFAI team in running the Dublin Marathon this year!

For your sponsorship / fundraising pack please contact Rosie t: 01 4962433 or e: rbegley@ cfireland.ie, or Martin e: mcahill@cfireland.ie New York Marathon 2012 Join our New York City Marathon Team. Places are filling up fast!

For your sponsorship / fundraising pack please contact Rosie t: 01 4962433 or e: rbegley@ cfireland.ie, or Martin e: mcahill@cfireland.ie This an exciting and challenging event and in the running world, ‘the one to do’. Age or running ability are no barriers to participation (ask Martin at 087 2627326). Further information from www. nycmarathon.org/ Poland Walk 2012 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 the numbers: Bernie 087 2353319; Julia 087 9911331; Frank 086 6060261 or Tony 086 25112731.

Lanzarote Iron Man Challenge 19th May Good luck to all the participants in this gruelling event. This year we have the Manx Ironman Team representing CFAI, CF Trust and CF Canada, raising funds for CF Research projects.

Thank you to expatriate Barbara McNeill (CF grandparent), for organising the team, her father Frank Tate (aged 92) from Blackrock, Co. Dublin for securing funds from the Meredith Trust for this campaign. Also David and Joan Millar who guided us in securing of a fantastic €10,000 grant from Monkstown Hospital Foundation.

By the time we go to press, all will have returned home, hopefully safe and injury-free, with a sense of personal achievement in both completing the challenge and raising much-needed funds for CF. 21

Spectrum / Issue 27

Joe Crowley Camino Walk 24th August 2012 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, Spain.

The aim of the walk is to raise vital funds to support the build fund of Cystic Fibrosis Association of Ireland and the Pharmacy Benevolent Fund (PBF). 100% of the monies raised will go towards these two important causes and will be divided equally between the two charities.

Support Pharmacist

Joe Crowley

on his 780km Charity Walk Joe will walk the Camino de Santiago over 27 days to raise funds for the Cystic Fibrosis Association of Ireland and the Pharmacy Benevolent Fund

You can support the Cystic Fibrosis Association of Ireland and the Pharmacy Benevolent Fund directly by donating by 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 by logging on to www.cfireland.ie –please to remember to mark your donation ‘Joe Crowley Camino Walk’.

August - September 2012

Support Joe Crowley theyour Camino de Santiago Sponsor Joe in orwalking donate change to for the Cysticworthy Fibrosis charities Association in of the Ireland and the Pharmacy these pharmacy now Benevolent Fund.

Charity Number: CHY 6350

Donate at www.cfireland.ie or Lo Call 1890 311 211

Charity Number: CHY 5467

Western People West of Ireland Womens Mini-Marathon

By Caroline Heffernan, CF Advocate CF West were delighted to have 200 participants taking part in the Western Peoples West of Ireland 3rd annual mini-marathon in aid of CF. This event is a fantastic opportunity for CF West to create CF awareness and raise much needed funds for our build project.

On the morning of the mini-marathon we served light refreshments to our participants in the hospital canteen which was sponsored by Aramark (catering company in MGH). An Taoiseach, Enda Kenny, T.D., visited us in the hospital to show his support for CF West and to acknowledge our commitment to PWCF in the West of Ireland.

Enda wished all our participants the best of luck in their 10km walk/jog/run. He praised and commended all our participants for their untold generosity to the CF West building fund.

I would like to encourage all CFAI Branches to consider this event as a possible awareness and fundraising opportunity in the future.

L-R: Tomás Thompson, Orla Heneghan, Norma O’Rourke, Martina Jennings, An Taoiseach Enda Kenny T.D., Caroline Heffernan and Paige Diskin.

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CF West would be delighted to assist in any way possible as we have built up a very good working relationship with the organisers of this event.

May/Jun 2012

Community events Thanks to all involved!

Toddler Triathlon – Sat 26th May Organised by Theresa Donnelly on Sat 26th May who has raised €9,484 so far from the Monster Raffle and Skydive. This event will be taking place at Yew Tree Square, Clane, Co Kildare.

Contact Rosie t: 01 4962433 in the National Office for more information.

Clare Burren Marathon Challenge 2012 – Sat 26th May Clare Burren Marathon Challenge is a green road and trail challenge across the Beautiful Scenic Burren.

Please contact Rosie in the National Office t: 01 4962433 or e: rbegley@cfireland.ie, or Martin e: mcahill@cfireland.ie The 3rd Annual Purple Rose Bike Run – Sat 26th May The 3rd Annual Purple Rose Bike Run from Tipperary Town to Bundoran, Co. Donegal in aid of Cystic Fibrosis takes place on the 26th of May 2012. For more details contact Mary at 086 3408421 or Billy Bresnan on 087 2645918.

Beat for Breath DJ Night – Thurs 31st May Please come along and support this great DJ night in The Lost Society Club, Dublin. €10 Per Person Payable On The Night.

Full proceeds going to CFAI. Neat dress code at this event is essential. For more info email Joe Dunne (CF Parent) at jwdunne@eircom.net Liffey Swim – 26th May (15:15 to 16:00, depending on tides) O’Connell Bridge, Dublin Robbie Clarke (CF parent) is organising this annual event for the 28th successive year. The fact that a new bridge is under construction close to the jumping–off point at O’Connell Bridge has not deterred the swimmers. It is rumoured that a wedding couple in full regalia will be participating. You’ll have to go along to see!

Trim Braveheart Trail Run – 17th June Don Mahon and members of Trim Running Club are organising this event to raise funds for the new CF daycare centre at Drogheda Hospital. The 5km run kicks off at 8pm at Trim Castle, with tea and sandwiches served afterwards.

So if you feel like running on a nice (summer’s!!) evening in the beautiful surrounds of Trim, Co. Meath, call CF House for a sponsorship card.

Biking for CF This event, organised by John Travers (of BOC Gases) and friends took part in this event on Easter Sunday in Offaly. All went off smoothly and safely and a sum of more than €3,000 was raised. Well done to all.

Waterford IT students Union Rag Week CFAI were the beneficiaries of the fundraising, with three other charities, proceeds of this annual event, each receiving a significant sum of €7,500. A special thanks to Denise McCarthy and the Officer group of the Students Union at WIT for your generosity of spirit, courtesy and hospitality in your fundraising efforts.

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Trafalgar Square to Puck Fair Ray Crowley and friends are cycling from Trafalgar Square to Puck Fair, Ireland’s oldest fair, to help fund a Cystic Fibrosis research scientist in Cork University Hospital, Ireland.

They will leave Trafalgar Square just after sunrise on the morning of August 4th, cycle across the English midlands, through the Welsh valley’s and Snowdonia National Park arriving in Holyhead three and a half days later, in time for the afternoon ferry to Dublin.

On the morning of August 8th they leave Dublin and over the next two and a half days, with pit stops in Abbyleix and Adare, they journey down through Ireland and finally arriving in Killorglin Co Kerry in time for the parade on the first day of Puck Fair!

If you would like to get involved, cyclists are asked to raise £250/€300 or more for this worthy cause.

A fully equipped support vehicle will accompany them throughout.

For more information please contact Ray Crowley email: crowleyray@gmail.com

Support Ray Crowley and friends in cycling from Trafalgar Square to Puck Fair.

Spin for CF A ‘Spinathon’ was organised by Karen Rowlett and colleagues at the Newbridge Sports and Leisure complex on Sunday 25th March, raising a fantastic €3,232 for Cystic Fibrosis.

Spinning for CF!

It was a tough event for the participants who all made it a memorable fundraiser for CF. Pictured to the left is the beautiful cake made

by Mairead Blennerhasset of ‘Cut the Cake’ for the event.

Skydive for CF Ben Gabriel, with the support of his Teacher Carmel Neylon, friends and first year students of Gort community school hope to raise much needed funds for the Galway Branch of the CFAI.

L-R: Carmel Neylon (teacher), Kevin Mee (student) Caroline Heffernan (Patient Advocate, CFAI) Ben Gabriel (student who will skydive) and Dan O’Connell (student).

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Ben will do a sponsored skydive for Galway CF build project.

May/Jun 2012

Monaghan Rose Zumba night Eoin Treanor and colleagues of the Monaghan Rose committee chose CFAI as their charity for the second year running. A number of the contestants took part in a ‘Zumba night to raise funds.

See Awareness Week section on Page 5 for a photograph from the event.

Well done, Caoimhe and we hope to see you in Tralee at the final.

McCabes Pharmacys CFAI Chosen as Charity of the Year!

McCabes have chosen CFAI as their charity of the year. Tara Talbot, Rose of Tralee was there to support Marie Duffy, Marketing Executive and baby Grace (recently diagnosed PWCF) at the launch.

We are grateful to McCabes and Marie, and look forward to a fruitful partnership. If you live near a McCabes Pharmacy, go along and see the mammoth-sized poster displayed in their window.

National Flower Festival Clonakilty, Co. Cork June 22nd – 24th 2012 The Association of Irish Floral Artists (AOIFA) will hold the National Flower Festival in Clonakilty, Co. Cork June 22nd – 24th 2012. The title of the Festival is “Circle of Life.” Over 200 floral artists from all over Ireland will decorate the Church of the Immaculate Conception, Kilgarriffe Church of Ireland and the Methodist Church, Kent St. The three Churches are a short walking distance of each other and are in the centre of town.

Proceeds of the Festival will support Cystic Fibrosis Ireland.

The Festival will open in the Church of the Immaculate Conception on Friday 22nd at 7.30pm.

A reception and Preview will follow. All Churches will be open on Saturday 23rd 10.30pm. – 6.00pm and on Sunday 12.30pm -6.00pm. Entrance of €10 will include all Churches. A sales area will include plants, bric a brac, home produce, floral books, candles and floral accessories.

Tea/ coffee will be available.

A concert “A Time to Celebrate” will be held in the Church of the Immaculate Conception on Saturday night 23rd at 8.30pm. Entrance €10. Raffle ticket are available €5 for 3. Many lovely prizes including a mid week break at the Inchydoney Lodge and Spa and a flat screen TV. We also welcome tours (27 already booked in) but we would like to know in advance if a tour is visiting us so that parking etc. will not be a problem and so that we can have entrance tickets ready to avoid queues.

If you have any queries please contact: AOIFA Chairman Una Fleming t: 023 8846165 / 087 2719544 e: ahafore@gmail.com AOIFA Secretary Margaret O’Donovan t: 023 88 46366 / 086 8539723 e: sec.aoifa@yahoo.ie 25

Spectrum / Issue 27

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 26

Charity: CHY6350