CFAI Spectrum - Issue 22

Jul/Aug 2011

SPECTRUM

Published by the Cystic Fibrosis Association of Ireland

IN THIS ISSUE:

• Newborn Screening for CF Commences • Annual Reports from the CFRI Published • CFAI to Fund Two New Research Projects • Exercise Grant Round 2 • Fundraising Events this Summer

Issue 22: Jul/Aug 2011 www.cfireland.ie

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Spectrum / Issue 22

Dear All, Cutbacks must not be allowed to undermine recent progress.

It’s an exciting time for Cystic Fibrosis in Ireland. You might say we are going through a ‘purple patch’– but it’s important to temper recent positive developments by stating that we are still playing ‘catch up’ in meeting the historic deficit in CF services in Ireland. Many of the developments, welcome as they are, should have been put in years ago and we still have some distance to go to get the facilities we need.

A major cloud on the horizon is the continuing general cutbacks in health services in Ireland that is impacting on frontline patient CF care, including the moratorium on staff and the pressure on hospital managers to make unrealistic cuts in services to meet budget overruns. Access to disability supports and supports for carers is being reduced as part of these cutbacks and will impact on the most vulnerable in our society. Many of our CF multidisciplinary teams are understaffed, in some cases with no psychologists or medical social workers and increasing pressures on physiotherapists, dieticians, specialised CF nurses and doctors. The cumulative impact of these cuts are still not fully apparent as they are in the process of being implemented and there will probably be more pain in the next budget.

Because of years of lobbying and ongoing funding drives, we have seen important progress in recent months including: • The opening of new CF facilities in Crumlin, Beaumont, Temple Street and Cork • The commencement of newborn screening for CF for the first time in Ireland • The appointment of the first dedicated lung transplant surgeon in Ireland commencing in the Mater in September 2011 • The forthcoming developments in St Vincent’s, Limerick Castlebar and Drogheda • CFAI support for staff/equipment in Galway, Tallaght and Temple Street • CFAI support for crucial research projects in Ireland • CFAI support for grants to members including the exercise, fertility and transplant grants Progress has only been made possible by the CFAI’s groundbreaking ‘Pollock Report’ of 2005, which provides the blueprint for CF services in Ireland. The key has been the active implementation of this report by the CFAI, including at a regional level through the incredible active work of our local Branches aided in some cases by local CF charities.

We will continue to strive to ensure that it’s not a case of ‘two steps forward, one step back’ when it comes to CF services.

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

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Jul/Aug 2011

Section 01:

LATEST NEWS : Page 2-8 Newborn Screening for Cystic Fibrosis Commences ECFS Annual Conference Report New Reports on CF in Ireland from the CFRI New CFAI Branch Officers Elected Reflexology for PWCF and much more...

-Section 02:

RESEARCH BRIEF : Page 9 CFAI Successful in Securing Research Funding -Section 03:

GRANTS & BOOKS : Page 10-12 Exercise Grant Scheme – Round 2 Fertility Grant Scheme 2011 Student Grants & Cystic Fibrosis Books for Children -Section 04:

PARENT PROFILE : Page 13-14 Marisa Reidy, New Parent from Co Kerry -Section 05:

EVENT FOCUS : Page 15-16 1 in 1,000 Synopsis and Photo Gallery -Section 06:

PWCF SPOTLIGHT : Page 17 Ava Li Blount, Karake Kid Matthew Thornton, Tennis Enthusiast -Section 07:

PHYSIO FEATURE : Page 18-19 Clare Reilly, CF Physiotherapist, St Vincent’s University Hospital -Section 08:

FUNDRAISING : Page 20-29 See Inside...

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Spectrum / Issue 22

LATEST NEWS

SECTION 01

PAGE 2—8

NEWBORN SCREENING FOR CYSTIC FIBROSIS COMMENCES As of July 1st 2011 The CFAI warmly welcomes the commencement of newborn screening for Cystic Fibrosis, which officially began on Friday 1st July 2011. Philip Watt, CEO of the CFAI commented: “CF is being added to the conditions tested for in the “heel prick test” for all newborn babies for the first time in Ireland. This is a significant advancement as it means the treatment of CF can begin from birth. Before now it could be weeks, months or even years before parents were told their child had CF. This is an important step towards improving CF servcies in Ireland, but we still have a long way to go before we have the services and supports our pateints need.”

The benefits of early detection and management of CF have been supported by international research and, more recently, through research in Ireland. The addition of CF to the newborn screening programme means that the condition can be identified early and the baby can be referred to the appropriate experts and be treated promptly. Early detection of CF in other countries has also been proven to reduce hospital admissions and the need for invasive therapy.

Dr. Kevin Kelleher, Head of Health Protection and Child Health, HSE, also welcomed the changes to the programme: “Screening for cystic fibrosis, along with the existing five conditions, aids early detection and helps babies to begin treatment as soon as possible. While these conditions are all rare, it’s very important that parents have their baby screened.”

Cystic fibrosis is now screened for through the ‘heel prick test’.

The CFAI has played an active role in the addition of CF to newborn screening, including advocating for it’s commencement in the CFAI Pollock Report (2005). It was also reflected as a priority in the HSE CF Services Report (2009), which largely endorsed the Pollock report.

It is estimated that three babies a week will be diagnosed with CF or will be diagnosed as being a healthy carrier of the altered gene that causes CF. The CFAI website has been updated with a new section containing information leaflets on newborn screening, the sweat test and what it means to be a carrier of the CF gene: http://www.cfireland.ie/articles.php/new_born_screening.

Details of all aspects of the newborn bloodspot screening programme, the test and screening card storage are available on the HSE at www.newbornscreening.ie.

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Jul/Aug 2011

EUROPEAN CYSTIC FIBROSIS SOCIETY CONFERENCE Hamburg, 8-11th June, 2011 The Annual Conference The European Cystic Fibrosis Society (ECFS) Annual Conference provides a forum for all with a common interest in CF to meet and discuss their latest findings from around the world. This series of conferences began as the European Working Group for Cystic Fibrosis (EWGCF) with the first official meeting being held in Stockholm in 1970. This year the conference was held in Hamburg, Germany, with next year’s ECFS conference to be held in Dublin in June. The ECFS is a medical and scientific conference and most of the participants are drawn from health professionals. A number of patient advocacy organisations are also represented, including the CFAI. The conference scientific programme is put together by an invited scientific committee and includes topics covering the entire spectrum of CF-related issues. Presentations are given

by CF team members from around the world and are presented in a range of forums from plenary sessions, symposia, workshops, special interest groups and roundtable discussions.

The Annual Conference provides a platform for companies with an interest in CF-related issues to also exhibit their products.

The CFAI team attended meetings and presentations and networked with other CF Associations from around the world. Below is short summary of some of the main developments.

Infection Control The roundtable was held to discuss infection control issues and was entitled ‘Infection Control – Lifesaver or Killjoy? As in Ireland, many other CF centres are finding it hard to find the right balance between good cross infection guidelines and respecting patient rights and freedom as a community. Agreement was reached that there needs to be two different approaches to the risk, with one set of guidelines for in-patient care and a different set of guidelines to deal with out-patient risks, accounting for the increasing age of PWCF adults who will meet as a result of education and work in the future.

Pharmacoeconomics of CF in European Countries There was a good session on the pharmacoeconomics and on the development of new drugs.

The views of industry, regulatory authorities and patient associations were expressed, each having very different requirements to meet their goals. The patient wants new treatments with fast and easy delivery systems, with regulatory authorities seeking good evidence-based results to approve new treatments. The challenges for industry include the cost of developing new medications and also in examining the possibility of using treatments/medications already approved for other conditions, and the costs involved in both approaches.

Research in CF Preston Campbell from the US CF Foundation looked at ‘Challenges – CF research over the next 5 years.’ Pressure is falling on the CF researchers since it is becoming difficult to carry out high quality trials due to the number of trials in the pipeline and getting access to the required numbers of PWCF who meet the trial entry requirements. Other areas that need to be addressed are how we can make the most out of every research opportunity. We also need to get a better understanding of research data as it will be impossible to do trials in all CFTR mutations.

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Spectrum / Issue 22

New Treatments for CF The big announcement of the conference were the results that the new Vertex drug, called VX-770, is showing exciting results from the clinical studies. VX-770 was tested in a Phase 3 clinical trial with CF patients aged 12 and older who carry at least one copy of a CF mutation called G551D. Patients who took the drug showed dramatic improvements in lung function and other key measures of the disease. Children who took the drug showed marked improvements, similar to those shown in the adult trial.

In both age groups, average sweat chloride levels of patients on VX-770 dropped toward normal – a sign that the drug is impacting the underlying defect in CF. VX-770 is being developed by Vertex Pharmaceuticals, and was discovered in collaboration with the CF Foundation in the US. While we are still distant from a cure for CF, the drug development represents important progress that will likely inform future research.

To find out more on VX770 see link below: http://www.cff.org/aboutCFFoundation/NewsEvents/2011NewsArchive/3-29-Phase-3-VX-770in-Children-Shows-Improvement.cfm VX-770 in subjects with Cystic Fibrosis who are Homozygous for the F508del-CFTR Mutation The results of this study substantially expand the safety database of VX-770 and suggest residual CFTR function may exist in the sweat glands of some patients homozygous for the F508del-CFTR mutation. Results indicate that there is a small effect on the sweat gland by use of VX770 on F508, but it is not of significant benefit to give to this group of the CF community.

The following articles and abstracts are freely available from the ECFS website at the link below: http://www.ecfs.eu/meetings/ecfs/34th+ECFS+Conference%2C+Hamburg%2C+Germa ny/2212 New Medications due out this year (update) TIP (Tobramycin inhalation powder) TOBI® as we all know has been used by CF patients for years. TIP™ Tobramycin inhalation powder has a similar clinical response to TOBI, but with a shorter administration time, improving patient satisfaction and is taken like any other inhaler. Research was carried out on both TIP and TOBI to show that both reduce Pa density and improve lung function in CF patients.

The new TOBI Podhaler from Novartis recently received approval from the EU but it will be some months before it becomes available in Ireland.

NEW BRANCH OFFICERS ELECTED At NEC Meeting on 18th June The newly elected honorary officers of the CFAI, recently confirmed at the National Executive Council Board Meeting on 18th June are: Chairperson: John Coleman Vice Chairperson: Cyril Gillen Secretary: Patricia Duffy-Barber

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Vice Chairperson: Sean O’Kennedy Treasurer: David Fitzgerald

Jul/Aug 2011

NEW REPORTS ON CF IN IRELAND PUBLISHED Overview Provided by Philip Watt, CEO, CFAI The Cystic Fibrosis Registry of Ireland (CFRI) is an independent Registry responsible for collecting and analysing data in CF. This information has played an important part in improving CF care. For example, the data contributed in a significant way to the CFAI’s Pollock report in 2005 that provided the blueprint for CF services in Ireland.

The CFRI publishes Annual Reports and the 2008 and 2009 reports were made available in June of this year. They provide a valuable insight into the steady progress that is being made but also provide an indication of the many challenges that remain. The Annual Reports (links below) provide information on a range of issues including data and general information on: ● Population, including data on gender ● Pulmonary function ● Nutrition ● Physiotherapy ● Antibiotics ● Survival and mortality ● CF Centres ● Genotype It is important not only to look at the data in the reports on a yearly basis but to consider the general trends and projections – estimates of what will happen in future years based on current trends.

For example, it is predicted that the percentage of CF patients over 18 will steadily increase over the next few years from the present figure of 53.2% of the CF population who are over 18. It is also reported in the 2009 report that ‘a death in infancy has become increasingly rare’.

The reports also show on a county basis the largest proportion of PWCF live in Dublin (27.4%) followed by Cork (13%) and Limerick (5.5%).

The CF centres with the largest number of adults attending with CF are: 1. St Vincent’s University Hospital, Dublin (286) 2. Cork University Hospital (106) 3. Beaumont Hospital (88) For paediatric patients the centres with the highest numbers attending with CF are: 1. Crumlin Children’s Hospital (128) 2. Cork University Hospital (83) 3. Mid-Western Regional Hospital, Limerick (76) The next issue of Spectrum will look more closely at the projected survival ages, drawing from recently published research.

Severe Cutbacks in Funding for the CF Registry of Ireland The CFAI is very concerned about the level of funding being provided by the Government to the CFRI and the impact of recent cutbacks. The primary source of funding to the Registry is provided by the Department of Health and Children through the HSE. The CFRI budget was cut from €272,000 in 2008 to an annual budget of €132,000 in 2009.

According to the 2009 report, this ‘has put CFRI under severe financial strain. This cutback in core funding has to be addressed as a matter of urgency.’ A deficit of €78,746 is reported for 2009.

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The CFAI acknowledges the work of the CFRI, the important relationship with UCD where the Registry is based, their ongoing efforts to secure funding, and the skills of the staff team working in increasingly difficult circumstances. We are concerned about the sustainability of the CFRI with the present level of funding and we will be seeking to support the CFRI by raising this issue at the highest levels within the HSE and the Department of Health and Children over the coming weeks.

To access full copies of these resports, please go to the following links: CFRI Annual Report 2008: http://www.cfri.ie/docs/annual_reports/CFRI2008.pdf CFRI Annual Report 2009: http://www.cfri.ie/docs/annual_reports/CFRI2009.pdf

ENTITLEMENTS FOR PWCF We Want to Hear from You The CFAI National Office has recently been made aware of some people with cystic fibrosis being refused certain entitlements, such as the Disability Allowance, based on their not meeting ‘certain medical criteria’. If this situation applies to you, we would strongly encourage you to contact us as this is a matter that the Association takes very seriously.

A briefing paper outlining the extent of such problems is currently being prepared, in particular, challenging the ground for refusal in the first instance, but also to identify other issues for discussion on social welfare entitlements.

CEO of the CFAI, Philip Watt, will shortly be meeting with the Minister for Health and this is a subject that will certainly be raised for discussion. In order to be fully aware of the extent to which this is affecting members nationwide, we urge you to contact CF Advocate Tomas Thompson at 087 9323 930 or email tthompson@cfireland.ie so that we can represent your views and advocate on your behalf.

NEW CONSULTANT RESPIRATORY PHYSICIAN Galway University Hospital CFAI warmly welcomes the news that Dr. Michael O’Mahony, Consultant Respiratory Physician, has joined the cystic fibrosis team at Galway University Hospital. Dr O’Mahony is the first physician appointment in the West of Ireland dedicated to the treatment of adults with CF. Currently approximately 60 patients with CF from Galway, Mayo and Roscommon attend Galway and around half of these patients are adults.

“As CF has such a significant impact on PWCF and their families, it is important to continually strive to improve the services we provide and to support research initiatives. In this regard the CF Association of Ireland has been hugely supportive, providing funding for dedicated in-patient rooms, specialised equipment for CF patients and hiring of additional medical staff. Their support has also been instrumental in securing my appointment despite the very trying economic times we find ourselves in.”

Dr O’Mahony, Consultant Respiratory Physician, Galway University Hospital We are sure you will join us in wishing Dr O’Mahony all the best in his new position – we look forward to working closely with him in the future.

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Jul/Aug 2011

NEW NATIONAL CHILDREN’S HOSPITAL Update An announcement from Dr James Reilly, TD, Minister for Health, on 6th July confirmed that the National Children’s Hospital would be located on the campus of the Mater Hospital, Dublin.

This followed an independent expert review, commissioned by Dr Reilly in May, which carried out a detailed comparison of the costs of providing the hospital on alternative sites, and an analysis of the clinical benefits involved – the report was unanimous in its recommendation in favour of the existing site. More details on this report can be found on the Department of Health website: http:// www.dohc.ie/press/releases/2011/20110706.html

Planned view from Eccles St of the new National Children’s Hospital.

The Minister committed to completing this project in the ‘shortest possible time’. The plans for the new hospital were officially submitted to An Bord Pleanala on Wednesday 20th July. All the relevant planning submission documentation including planning reports, environmental impact assessment reports and architectural drawings can be viewed online at the following link: http://www.newchildrenshospitalplanningapplication.ie/#volume_5 It is intended that the services currently delivered in the three existing children’s hospitals in Dublin (Our Lady’s Children’s Hospital, Crumlin, Children’s University Hospital, Temple Street and the National Children’s Hospital, Tallaght), will transfer to the Children’s Hospital of Ireland.

The CFAI has been actively involved in making representations to the National Paediatric Hospital Development Board since November 2010 in order to address the concerns of the CF community and to ensure that there are world class facilities for children with CF. Representatives from the CFAI also attended a National Paediatric Hospital Development Team meeting in April where a 3D model of the building was presented and assurances were also given that single en-suite facilities would be provided for all children with CF. The Government will make a final decision on proceeding with the project in the context of its overall review of capital spending, which will be completed in September 2011. CFAI will endeavour to keep members updated on any subsequent progress.

TRANSPLANT GAMES 2012 – APELDOORN, HOLLAND 27th June –1st July 2012 The 14th European Heart & Lung Transplant Games will take place in Apeldoorn, Holland from 27th June – 1st July 2012. This is a unique experience not to be missed by all Heart & Lung recipients. ‘Honour your donor’ and participate at whatever level you are able, to show that organ donation works. Track & Field Athletics, Swimming, Badminton, Tennis and Volleyball are just some of the sports available. If you are interested in participating, please contact Brendan Gilligan on 087 2281159 or Seamus Eager on 087 2574362. For more information please log on to www.Ihlta.com 7

Spectrum / Issue 22

REFLEXOLOGY FOR PWCF An Invitation from Marie Guilfoyle Marie Guilfoyle is grandmother to a 3-year old boy with CF who is living in California. A complementary therapist, Marie recently contacted CFAI to say that she is very interested in studying the potential benefits, if any, to PWCF in having regular reflexology treatments. To this end, she is eager to meet people who might be interested in taking part in this study.

What is on offer?

A full reflexology session is on offer that would consist of approximately 45 mins, every 2 weeks, for 6 months.

Where would it take place?

Preferably within relatively easy travelling distance of Dalkey as this is where Marie works.

Is there an age limit?

Yes. Only individuals aged 18 years or older can avail of this offer (no upper age limit imposed).

The person should also be fit enough to climb short stairs as the clinic room is on the second floor.

What does it cost?

There would be no treatment fee involved as this is a research project.

Marie would love to hear from anyone with CF, who meets the above criteria, and who may be interested in participating in this project. You can contact Marie on 086 3749655 for further information or email guilfoylemarie@hotmail.com

ADVANCE CARE DIRECTIVE Is it for You? Eleanor Walsh, PWCF, has written an article about the many life choices that face people with CF, and particulary those decisions affecting end of life. So what is an Advance Care Directive?

Although there are no precise definitions, it can be thought of as an advance decision about the kind and extent of medical or surgical treatment you want in the future.

For Eleanor, filling in an advance care directive was similar to signing an organ donor card. It also made things less frightening as family were then fully aware of her wishes for the future.

The fact that her decisions can be reviewed on annual assessment, or earlier upon request, also allows felexibility should wishes or decisions need to be changed.

“Whilst I realise that end of life issues are difficult for many people, I can assure you, it will give you great peace of mind to know your wishes will be carried out, in the event that you can no longer speak for yourself. Remember, it’s not just about saying what you don’t want; it’s about saying what you do want.’”

Eleanor Walsh Eleanor’s article ‘Peace of mind with end of life issues’ will shortly be made available on the CFAI website under the Palliative Care section. Alternatively, if you would like a copy posted to you, please contact the National Office.

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Jul/Aug 2011

RESEARCH BRIEF

SECTION 02

PAGE 9

CFAI SUCCESSFUL IN SECURING RESEARCH FUNDING MRCG/HRB Joint Funding Scheme 2011 We are delighted to announce that the CFAI has been successful in securing funding through the Medcal Research Charities Group/Health Research Board Joint Funding Scheme 2011.

This innovative joint funding scheme allows members of the MRCG (of which the CFAI is a member) to support research of particular interest to specific patient populations, where they might otherwise not be in a position to finance the full cost of that research. The partnership with the HRB is important in building research funding capacity in Irish research charities and ensures that all elements of this research funding programme are operated at the highest standards of best international practices.

CFAI will be funding two new research projects in 2011.

The standard of applications submitted to the CFAI was very high this year; 12 applications were under consideration, which made the scheme extremely competitive. The international peer review process was overseen by a grant review body established by the Medical and Scientific Council of the CFAI. An international review committee convened by the MRCG/HRB made the final funding decision, which endorsed the outcomes of the CFAI review process.

Details on the successful research projects are outlined below: 1. The role of mucus and mucins in mediating Pseudomonas aeruginosa colonisation of the cystic fibrosis lung Principal Investigator: Dr. Marguerite Clyne, University College Dublin Duration: 3 years 2. National Prevalence of Depression and Anxiety in Patients with Cystic Fibrosis and Parents: Impact on Health and Quality of Life Principal Investigator: Prof Eileen Savage, University College Cork Duration: 3 years Further details on each of these projects will be made available shortly.

It is hoped that these projects will commence in Autumn 2011. CFAI will endeavour to keep members updated on the progress and outcomes of this research through regular updates on our website and in Spectrum.

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Spectrum / Issue 22

GRANTS & BOOKS SECTION 03

PAGE 10—12

CFAI EXERCISE GRANT SCHEME 2011 – ROUND 2 Opens July 29th We are delighted to announce that Round 2 of the Exercise Grant Scheme for 2011 opens on Friday 29th July!

Application forms and Guidance notes will be available for dowlnload under the ‘Grants and Support Services’ section of our website: http://www.cfireland.ie/articles.php/grants. As for Round 1, supporting documentation in the form or an official quotation or receipt must be provided with each application. The maximum value of this grant in 2011 is €300 for PWCF over 16 years of age, and €250 for PWCF under 16 years of age.

The deadline for submission of applications is Friday 9th September 2011. The budget allocated for Round 2 is €20,000, which means that the CFAI have invested €60,000 to this scheme for 2011.

Remember that members can apply for this grant up to a maximum of three times, once in any given year. This scheme operates on a first-come first-served basis within these parameters, so be sure to get your forms in as soon as possible in order to be in with the best chance of securing an exercise grant in this round.

Good Luck!

CFAI FERTILITY GRANT SCHEME 2011 Closing Date Approaching The purpose of this grant is to provide financial support to PWCF and their respective partners who wish to undergo fertility assessment/treatment in the hope of becoming pregnant.

CFAI have reserved €30,000 for this scheme in 2011. The maximum value of the Fertility Grant in 2010 was €2,500. For 2011, this has been increased to €3,000 for first-time applicants. Members who previously availed of the fertility grant will be eligible to reapply a second time in 2011 – the value of the grant for second-time applicants is €2,000.

The application forms and guidelines are available for download under the ‘Grants and Support Services’ section of our website: http://www.cfireland.ie/articles.php/grants/_fertility_grant_2011.

The deadline for submitting applications is Friday 12th August 2011.

If you have any queries about these grant schemes, please call Alica May at our National Office, or email amay@cfireland.ie.

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Jul/Aug 2011

GRANTS FOR STUDENTS IN FURTHER AND HIGHER EDUCATION Reminder to Apply!

The student grant is the main source of financial help available from the Irish State for students in full-time Post Leaving Certificate Courses (PLCs) and full-time higher education undergraduate/ postgraduate courses. Support is available to eligible students in most colleges in Ireland.

For eligible students, the grant is there to help with the various costs of participating in further or higher education. Students on part-time courses, access or foundation courses (in higher education institutions) and short courses are not eligible to apply for a student grant.

Family and/or personal income is a key factor that will be assessed when you apply for a student grant but there are also some other conditions. Budget 2011 resulted in a 4% reduction in the rate of the student grant and the qualifying distance for entitlement was increased from 24 to 45 km.

How Do I Apply?

If you think you are eligible for the student grant, you should apply for it as soon as possible. The application process for 2011-12 is now open.

You apply for a student grant to the local authority or VEC in the area where you live. If you plan to attend a PLC or Institute of Technology, apply to your VEC. Otherwise apply to your local authority. The closing date is 31 August 2011, but you should apply as soon as possible.

The online application facility for student grant applications is currently available for 35 awarding authorities (https://www.grantsonline.ie). Alternatively, you can download the application form and guidance notes from www.studentfinance.ie, which also has details of the Fund for Students with Disabilities, the Student Assistance Fund and some third-level scholarships.

FROGS OF A DIFFERENT NATURE

By Gillian Dempsey The following piece was written by Gillian’s mum, Elaine Dempsey.

Gillian was a very special young girl. She was full of life and pushed herself to do as much as she could even when she was not feeling well. Gillian spent a lot of time in Crumlin Hospital.

While on a stay in 2007 and during National Book Week, Gillian’s teacher asked her to write a small story; one of the subjects was frogs. After a lot of brain storming Gill came up with ‘Frogs of a Different Nature’ – she decided to write about her frogs.

When Gill was younger and getting her phyisotherapy treatment in hospital, she was told to ‘cough up the green frogs’ of her lungs so this was always the way she done her physio. Her sister Lauren, who also has CF, used to make a game out of the phyisotherapy sessions and both used to see who got up the most frogs – Gill always won as she had a lot of frogs.

Frogs of a Different Nature, by Gillian Dempsey, is now available.

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Spectrum / Issue 22

Gill passed away on 21st January 2009. While going through some things in her bedroom we came across her story. We decided that we would try and get it published. Through the help of local photographer Robert Redmond who got in contact with Colourbooks Ltd Gerry Kelly, Robert explained to Gerry what we wanted to do and out of the kindness of his heart he promised to sponsor 1,000 copies (half way through the printing of the book his company went into recievership but true to his word he still came up with the books!).

The Dempsey family pictured at the launch of Gillians Book ‘Frogs of a Different Nature’. L-R: Joe, Aaron, Lauren and Elaine Dempsey.

Thanks to the kindness of people we have received another sponsor, ‘Standerd Printers’ from Galway, who are printing another 1,000 copies.

The book is selling well and all money from the book is going to the CF unit at Crumlin Hospital and the Make a Wish Foundation. The book costs €10 and you can buy a copy by emailing frogsofadifferentnature@gmail.com or by calling Joe on 085 7211282.

Cystic Fibrosis Explained for children Tim and Lucy are two children with cystic fibrosis. If you are a child with CF, they will help you understand it by explaining how CF affects them and how their treatments work. If you are a child with a parent, sibling or friend with CF, Tim and Lucy can help you understand why they are sick.

Written by Eleanor Walsh (PWCF), all the royalties from the sale of this book will go to the Cystic Fibrosis Association of Ireland and Cystic Fibrosis Worldwide.

Cystic Fibrosis Teen Transition Programme

Cystic Fibrosis Explained for Children, written by Eleanor Walsh (PWCF).

This programme was designed by an adult who has cystic fibrosis, to help teenagers transition smoothly into adult CF care. By following the programme, each patient will learn, step by step, how to take full responsibility of their own health. It is a gradual process, so patients can progress slowly and feel confident before moving to adult care.

Parents can also follow their progress and, therefore, slowly decrease the responsibility they have over their teen’s health. This programme should in turn make life easier for the new CF team, when dealing with teens, as they will have been prepared for adult care.

Written by Eleanor Walsh (PWCF), 50% of the royalties from the sale of this book will be donated to CF Worldwide.

To purchase books, please visit the Choice Publishing website: http://www.choicepublishing.ie/index_files/cysticfibrosis.htm

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Cystic Fibrosis Transition Programme for Teens, written by Eleanor Walsh (PWCF).

Jul/Aug 2011

PARENT PROFILE

SECTION 04

PAGE 13—14

NEW PARENT FROM CO KERRY

By Marisa Reidy Hanna was seven months old when we first noticed a problem. She had a persistent cough for about a month and, compared with other babies I’d seen, she wasn’t gaining weight. Having been admitted to Kerry General Hospital after Christmas with pneumonia, Hanna was treated with antibiotics and sent home after five days. A month later, during which time her cough never really improved, a follow up x-ray confirmed another bout of pneumonia and so we were sent to Limerick for a CF test.

It’s been a long, testing and emotional six months since the diagnosis, but I’m delighted to say Hanna is doing great. Sometimes I joke that she’s doing better than me! I’m not naive and I’m not fooling myself that she’s not sick, but we take one day at a time. That’s all we can do.

Every time Hanna coughs my heart skips a beat.

That’s just the way it is. While she thinks it’s funny and often exaggerates for effect, I think the worst each and every time. I think I always might. She’s under the care of a specialist CF team at the Mid-Western Regional Hospital in Limerick and, thankfully, they’re very happy with her progress.

Hanna with her mum Marisa.

While I don’t think I’ll ever properly come to terms with Hanna having this condition, it’s not going to consume my life. I can’t let it. Yes, it has knocked me for six, but there’s only one thing to do when you get knocked, and that’s get up again and dust yourself down. While my husband and I and our families are fully aware that CF is a potentially life-threatening disease, we take every day as it comes and do our best to prevent infection. That’s not to say we wrap her up in a bubble (as much as I want to), but we manage the condition as best we can – with great support from family, friends and work colleagues.

We also focus on the positives, which are reinforced by our CF team in Limerick – that she will live a relatively normal life, do all the things little girls do, and grow up to go to college and get married if she so wishes. Yes, she’ll have a tougher road, suffering infections along the way, but, unfortunately, that’s the nature of the beast we’re dealing with.

Medicine has also come a really long way over the past two decades and there are currently huge advancements happening in the US, which could have potentially life changing effects on PWCF if successful. Like I say to people, who knows what treatments will be available before she even goes to school or reaches her 10th birthday?

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Spectrum / Issue 22

What we do need here though is for our government to realise the benefits of specialist CF facilities in this country and invest. We are seriously lacking in this regard and it’s only because of fundraising drives by charity groups that we are making any progress. Despite their best efforts, that progress is slow.

Hanna, child with CF, in the driving seat at home in Kerry.

I have bad days when I cry, get angry and poor God comes in for more abuse, but then, when that’s done, I pull myself together and say, ‘right, this little girl is depending on you, so get a grip.’

While no one wants to be told their baby is sick, the doctor could have told me a lot worse on that fateful day in February. Is that much consolation? I have to think so. There are hundreds of parents with children in far worse positions, who would probably trade places with me in a heartbeat. My mum told me that and it’s something I think about a lot — especially on those bad days.

It’s glass half full for me — it has to be! And who knows, with continued research and future investment, that glass might some day be completely full. Here’s hoping...

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EVENT FOCUS

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1 IN 1,000 SYNOPSIS Congratulations to All Involved Check out the great photos from the Harcourt Hotel of the 1 in 1,000 women who all completed the Women’s Mini-Marathon on June 6th. Thanks again to all who participated, and if you haven’t done so yet, contact Maria in the CFAI National Office to find out how to send in your donations!

Thank you to everyone who has fundraised and sent in sponsorship already. We held a draw for those that got sponsorship in by June 24th, and here’s a list of winners, and the prizes they received: ● Cecily O’Hanlon – 1 night B&B for 2 in Kilronan Castle ● Gemma Normile – Nuxe Luxury Skincare Hamper ● Áine Long – Voucher towards spa treatment in Temple Spa ● Ciara Close – Kelkin Healthfoods Hamper ● Cathy O’Grady – Signed Neven Maguire Cookbook and DVD

Rose of Tralee, Claire Kambamettu, supporting our 1 in 1,000 campaign for 2011.

1 in 1,000 Co-ordinators Maria Caldwell and Kathy Baker with Fundraising Manager, Martin Cahill, on the morning of the big race.

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Jul/Aug 2011

PWCF SPOTLIGHT

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AVA LI BLOUNT Karate Kid, Age 4 Louise Byrne and Steve Blount have a little girl, Ava Li, age 4 with CF. Louise says that when Ava Li was smaller, she used to copy her fumbling through a few Tai Chi moves. As Ava Li got a little older she could do it as well as Louise could (not too difficult she says!), so they thought Karate might be fun for her. Ava Li was the only girl in her class when she started and was by far the smallest there, but that seemed to spur her on!

The class is 45 mins weekly and is great for upper body movements, stretching, balance, discipline, confidence and coordination. More recently, Kung Fu Panda plus the funky, selfassured Rapunzel in Tangled have helped encourage Ava Li towards greater things. She went for her first grading in April and came away a proud yellow belt warrior. As well as benefitting from the fun exercise, students are taught about focus and internal strength...a couple of fairly handy character traits to have in your back pocket I think!

Ava Li on receiving her yellow belt with her proud parents Steve Blount and Louise Byrne.

MATTHEW THORNTON Tennis Enthusiast, Age 7 Matthew Thornton (7) loves Tennis! He was hooked after doing an U8 tournament at Greystones Tennis Club last summer and has gone on to do 3 hours of tennis squad each week since.

All this exercise and love for the game helps keep Matthew healthy and fit, along with giving him the confidence to compete in Open Tournaments at Rathgar, Bray and Carrickmines this spring. He also can’t wait to enter the U8 East Leinster Open and Greystones Tennis Club Championship, which take place in Jul-Aug. Matthew was recently given a gift of Wimbledon Centre Court tickets to see Roger Federer, which has kept him motivated and enthusiastic!

Matthew at Centre Court in Wimbledon this summer.

Luckily for Matthew, he applied to and was awarded the CFAI Exercise Grant, which his Mum Carolyn says has really helped towards his tennis tuition and his dream of a trophy shelf in his room!!

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Spectrum / Issue 22

PHYSIO FEATURE

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CLARE REILLY CF Physiotherapist, St Vincent’s University Hospital Clare works in St Vincent’s University Hospital, National Referral Centre for Adults with Cystic Fibrosis. She has been there since June 2001, which makes this her 10th year!

Where did you study/qualify?

I graduated from University College Dublin in June 2000 with a BSc in Physiotherapy and then continued on to complete a Masters in Research (MSc) after I graduated. During the time I was studing for my MSc, I worked part-time in James Connolly Memorial Hospital Blanchardstown, and worked within UCD with undergraduates. When I finished my research I took a post as Clinical Tutor in St Vincent’s, but as soon as the Senior Physiotherapy position became avaliable I applied and got the job.

I specialised in CF, mostly because it was one of the few placements I completed as an undergraduate that really consolidated the fact that I had choosen the correct career path. I had two very experienced and inspiring seniors in cystic fibrosis, Deirdre Concannon and Marjan Jensma, to teach me all I know, and left very big shoes to fill when I took the job.

Describe your average day I don’t think you get an ‘average day’ working in CF, and that’s probably why I love the job so much. I am so lucky here in SVUH to work with other physio’s who are all dedicated to the care of adults with CF – we have a fantastic physiotherapy team and they make coming to work a treat.

My patient group are so busy in the morning taking nebs or getting that all important second snooze that my treatments don’t start til about 9.30am, so I spend this time doing paperwork and having an early coffee break (I’m a coffee addict!).

Then it’s all action. All patients here in SVUH get two dedicated physiotherapy sessions each day of a minimum of 30 mins. One session is airway clearance and one session is exercise (a mixture of cardiovascular work, strength or stability work). As a team, we try to establish a routine that is sustainable and I’m a firm believer that we can do anything if we set a routine and stick to it.

Why is physiotherapy so important for people with CF? Physiotherapy has always been percieved as a cornerstone therapy for patients with cystic fibrosis and I believe it’s essential to maintain wellbeing in people with CF. Airway clearance is so important in maintaining good ventilation, reducing retained secretions, which in turn reduces the potiential for infective exacerbation. It will minimise coughing during the day and give patients the freedom to start their day and get on with life.

Exercise is something that is promoted in all walks of life and the guidelines we give here for exercise are essentially the WHO guidelines for exercise in all population groups. Everybody (that’s right even mum’s, dads, brothers, sisters, husbands, wives and partners) should partake 18

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in exercise of approx 30 mins, 5 days a week. The benefits of exercise are multiple in the context of CF: it promotes effective airway clearance, its builds muscle strength, releases endorphines which make us feel great, works on our postive body image and well, should be fun!

How important is exercise in the management of physiotherapy?

During exercise the secretions in our lungs increase in water content and therefore are easier to clear; so, as you can imagine this is of great benefit to effective airway clearance, making any secretions in the lungs easier to move. During exercise the oxygen demands of the body increase, and in response to this our lungs increase their ventilation by opening up all the parts of the lungs we don’t use when sitting down and resting. Therefore, you are moving air through every section of your lung and helping move any secretions you have in areas that are not ventilated at rest.

Exercise is equally important in building oxygen efficent muscles that we can rely on to prevent injury and also during exacerbation can maintain function.

We are very lucky that the CFAI have an Exercise Grant Scheme where you can avail of some finanical help to set you on the path to an effective exercise programme – this grant can help you buy some equipment or gym membership that will promote exercise. You should discuss the options with the physiotherapist at your CF centre to see what is the best option for you before you decide.

Do you have any tips for PWCF/parents on how to improve compliance and exercise?

I believe in routine, as boring as that sounds! I was told recently that it only takes 21 days to form a habit, so if you can establish a routine that works with your day, and keep it up, before you know it you will be exercising! If possible, work exercise into your day to day activities, for example, if you can use exercise as part of your commute to work or college or school, do! It’s so easy to stick to your walk if it’s how you get home from work. Cycle, or get off the bus a few stops early.

Some of my patients walk during their lunch break.

Find an activity that you enjoy, and keep looking until you find one – if you are a team person, find a group to exercise with. If you are a runner, there are lots of clubs that cater for all levels of runners and you will often find that these groups are only delighted to see you partaking in their sport and enjoying it, and are less concerned on what time you do your 400 metres in!

What aspect of your job do you find most challenging?

Sometimes it is difficult to build a rapport with every patient, and it is so important that every patient has a good relationship with a physiotherapist so that they have a person that they trust, they can ask questions to and that they will accept the advice that is given. I find it very challenging in situations that, for whatever reason, you don’t ‘click’ with a patient or if a patient is uncompliant with treatments. Afterall, this is what we do and it’s great when you can work with someone and see the improvements – it makes everyday worthwhile. I find it challenging also when a patient gives their best to a treatment programme, gets their IV’s, works hard with the physio and the dieticians and nurses and yet doesn’t regain the lung function quickly; it’s sometimes hard to accept when their hard work is not rewarded as it should be.

What do you enjoy most about your job?

The challenge of taking the patient who has been unwell, and working with them and regaining good function and following that patient through to discharge home, those are the best days – seeing someone discharged home after a prolonged admission is always good for everyone.

What is the HAES form?

Habitual Activity and Exercise Score – it’s a questionnaire that allows us to calculate your activity levels, not just taking into account what exercise you do, but also how active you are during the day. It’s a great measure that is well validated in the literature.

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Spectrum / Issue 22

FUNDRAISING

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BIKEFEST 27th August This is a motorcycle event which commences with a gathering of bikers at Kilkenny Castle on Saturday 27th August at 12pm. All bikes leave the castle at 3pm en route to Cork city, overnighting at Silver Springs Hotel and returning to Kilkenny on Sunday 28th August. The proceeds of the event go to CFAI and Team Hope, a third world charity.

Motorcyclists will converge on Kilkenny, coming from many parts of Ireland, and it is hoped to arrange receptions, sale of pins etc. at designated stops around the country to raise funds and awareness. We will be notifying Branches and the CF community seeking volunteers in these areas.

We particularly require volunteers in Kilkenny on the day, and Cork that evening – please call Eufemia or Martin in the National Officer for more information.

LAKES 10K Saturday 10th September This year the Lakes 10k will take place on Saturday 10th September in the beautiful setting of the Lower Lake, Blessington. Lorna Brennan, chief organiser, indicates that they are hoping to reach the 600 mark with entries this year.

Details at www.cfireland.ie, alternatively full details are available on www.thelakes10k.ie, or email the club at thelakes10k@gmail.com.

IRELAND TO EVEREST – 32 STEPS FOR CF Upcoming Climbs This summer the team continue to climb the highest peaks in the 32 counties, with the final climb taking place in August 2011. Sponsorship cards and t-shirts to purchase will be made available in each climb so please contact us if you want to get involved!

See over for a list of final peaks left to climb, directions and meeting points are made available on the teams website and in our fundraising calendar closer to the climbing date.

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● Co. Mayo: Mweelrea. Height: 814m (2,671ft) Saturday 30th July 2011 ● Co. Down: Slieve Donard. Height: 850m (2,789ft) Sunday 7th August ● Co. Limerick/Tipperary: Galtymore*. Height: 919m (3,015ft) Saturday 13th August ● Co. Wicklow: Lugnaquilla. Height: 925m (3,035ft) Saturday 20th August ● Co. Kerry: Carrauntoohil. Height: 1,038m (3,406ft) Saturday 27th August Funding will go to the National Lung Transplant Fund recently established by the Cystic Fibrosis Association of Ireland. For further information on the Ireland to Everest 32 Steps for CF challenge see: http://irelandtoeverest.com/32-steps-for-cf/. For any further info you can also contact Cian at 086 8882879.

KILDARE BRANCH MEETING Wednesday 14th September A meeting of all CF parents in the Kildare area is scheduled for Wednesday 14th September in Kaedeen Hotel, Newbridge to discuss ways of re-activating interest in the area. All are welcome to attend.

Despite the impression that not a lot happens in Kildare on behalf of CF, the photograph to the right proves otherwise. Seen here are Branch Officers Oliver Delaney (Secretary) and Frankie Durney (Chairperson) presenting a cheque for €17,000 to Martin Cahill of CF House. Phil Dunphy, who beavers away in the background, was unavailable for the photo.

Kildare Branch Secretary Oliver Delaney and Chairperson Frankie Durney presenting a cheque for €17,000 to Martin Cahill of CF House.

CF LUGATHON Saturday 1st October Our yearly CF Lugathon is scheduled for Saturday 1st October. This event involves a hill-walk up Lugnaquilla Mountain, the highest mountain in Wicklow. The view from the summit is amazing.

Soup and sandwiches to sate the appetite will be available in Fentons of Donard afterwards.

Details will be published on www.cfireland.ie shortly and previous entrants will be contacted soon. Join us for a great day out and raise much needed funds for CF.

ISTANBUL & CAPPADOCIA WALK 2011 October 2011 Final arrangements are being made for the Walk 2011. The Walk Committee is glad to announce that places have been fully filled and no doubt the trip will be an amazing experience for all involved.

As previously advertised, each walker is requested to fundraise €2,625 for an unforgettable trip to soak up the Turkish culture.

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DUBLIN CITY MARATHON 2011 October 31st The Dublin City Marathon 2011 will take place on October 31st at 10am. CFAI has already had a number of people taking part and raising funds for cystic fibrosis. Get in touch and we will provide t-shirts and sponsorship cards.

Please note that to take part in the event, you will need to personally register for the marathon at http://dublinmarathon.ie.

NEW YORK MARATHON 2011 Sunday 6th November We still have places available for the New York City Marathon 2011. We are aware that large fundraising targets are tough to reach in the current economic climate, so we have decided to drop the fundraising target from â‚Ź5,000 to â‚Ź3,999.

The package will be the same and includes flights, accommodation, race entry and an enjoyable personal experience, while supporting the cause. At this price, we expect places to go quickly.

So what are you waiting for? Get in touch with Martin or Eufemia at 01 4962433 and reserve your place before it is too late!

ROME MARATHON 2012 St. Patricks weekend Did you ever wonder what it would be like to run in one of the most historical cities of the world?

If you are not interested in the long haul flight to go to New York, but you would like to run a marathon in aid of Cystic Fibrosis while admiring history around you, the Rome Marathon 2012 it is what you are looking for.

We have already received enquiries and we are in the process of putting details and indeed teams together. Interested parties wishing to take part should call Martin or Eufemia in the National Office for full details, which will go on www.cfireland.ie shortly.

GSK CHARITY OF THE YEAR 2011 Saturday 1st October As previously announced, GSK has chosen CFAI as their charity of the year 2011 and all the staff is actively involved in organising events to raise funds for CF. The Cork office organised a cycle from Cork to Limerick over the weekend of 22nd July, while the Dublin office is organising an indoor triathlon. More details will follow in the next issue of Spectrum.

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EXPERIAN CHARITY OF THE YEAR €2,000 Raised for CF Experian has also chosen CFAI as their charity of the year 2011. Management and staff are fundraising events, and raised €2,000 at a business lunch recently by having a silent collection.

ASSOCIATION OF IRISH CELTIC SUPPORTERS CLUBS Donation to CFAI CFAI was chosen as one of two benefiting charities for a donation from the Association of Irish Celtic Supporters Clubs (AICSC), and a cheque was presented to Martin Cahill at their gala Dinner on the 2nd July at Citywest Hotel.

Many thanks to all Celtic supporters and also to Paul and Elmarie Tipper, CF parents, who nominated CFAI for the donation.

FAIRY AND ELF FAIR Held on 1st May A Fairy & Elf Fair took place at Causey Farm, located just 5 miles from Kells, Co. Meath, on Sunday 1st May. Fun workshops were held, such as making magic wands or troll sculptures, not to mention visiting the Fairy Queen in her carriage, dancing at the Pixie Disco, or playing Tingo Bingo. Storytelling and maypole ribbon dancing were also part of the fun. Beautiful artwork by Liza Kavanagh was also on display.

The farm animals also welcomed visitors; including pigs, cattle, sheep, goats, hens, ponies, ducks and Neddy the donkey. €1,250 was raised at the Fairy and Elf Fair with all proceeds going to the Cystic Fibrosis Association of Ireland – a huge thank you to all involved!

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GARDA TOUR DE FORCE 2011 Departed Kilkenny, 6th June This event was a resounding success that raised a grand total of €60,000 for the Cystic Fibrosis Building fund in Mayo.

Tomas Thompson, CF Advocate of the CFAI, was nominated as the ‘food guru’ for the event. The cycle finished up in Westport, Co Mayo and was met by the Lady Mayoress of Westport Town Council and the local Garda Superintendent. A reception that evening in the Castle Court Hotel, followed by a mini-pubcrawl, and a climb up Croagh Patrick the next day marked the completion of the event.

We are indebted to the committee of Garda Tour de Force for their generous efforts on behalf of Cystic Fibrosis.

CYSTIC FIBROSIS LIFFEY FUN SWIM

By Swimmer, Albert Caffrey On 10th June at 6pm, a group of people gathered on O’Connell Bridge in Dublin to participate in the Cystic Fibrosis Liffey Fun Swim from O’Connell Bridge to Butt Bridge to raise funds for cystic fibrosis.

Approximately 60 people showed up on a very cold evening for the 7pm start. Some hardy annuals and experienced swimmers, as well as novice swimmers who were there to gain experience and support the charity, dived or jumped from O’Connell Bridge into the freezing cold River Liffey below – it was a spectacular sight!

Swimmers anand Supporters from the Liffey Fun Swim for CF.

Swimmers get ready on O’Connell Bridge!

The crowd on O’Connell Bridge showed great support and encouragement to all the swimmers.

All those who participated completed the swim safely down to Butt Bridge. The swimmers took refuge from the torrential rain afterwards in some local cafes and pubs.

Many thanks to all involved in yet another successful Liffey Swim for CF!

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FUNDRAISING IN DOWNINGS

By Martin Fleming This event took place over the 10th and 11th of June, starting on Friday morning with a coffee morning and cake sale at the Mevagh Resource Centre. A big thank you to all who baked for the morning and helped out on the day and also to Marietta and all her staff for supporting the event.

The day was rounded off with a Lovely Girl competition and a People Auction in the Beach Hotel. A huge thanks to all the guys who proved themselves great sports for entering. Thanks to Mairead McClafferty, Brid Byrne and Danny McGroddy for acting as judges for the night. Micheal (Prioncie) McBride was deemed the winner on the night. For all those who gave their skills for the people auction, a big thank you. A fantastic night’s music was provided by DJ Gerry Logue.

Saturday kicked off with the national schools disco in the Empire Club, Downings Bay Hotel. The winners of the art completion were announced at the disco, the overall winner was Aoife Donnelly from Cranford National School.

The Grande Finale was held in the Harbour Bar, where many people shaved their heads, beards and moustaches by Aoife Doherty. Others had their chest and legs waxed by Catherine Casey and her staff for these great causes. Music was provided by Declan McClafferty, George Kelly and other local musicians for free, closing the events on a high note.

To all the local businesses who sponsored the events with prizes, and to the businesses who gave their premises and time freely in Downings, a huge THANK YOU. The events were organised by Mary McBride, Roisin Toland, Karen Carney and Martin Casey supported by Darragh McClafferty’s expertise in fundraising from the Beach Hotel. The weekend was a huge success where all members of the community participated fully, and raised to date a staggering €6,740 to be divided equally between the two charities. To all, well done and thank you. Photos

by Martin Fleming

BALLYMURPHY TRUCK RUN Took Place on 12th June This was a well supported event with 97 trucks of all shapes and sizes participating. The exact fundraising total has not yet been computed as we are still awaiting return of all sponsorship cards.

The weather was generally bad, and the visibility on Mount Leinster was extremely poor, but this did not deter the truckers. A ‘truckers’ dinner was laid on in the Hilltop in Ballymurphy with music to suit all tastes. Special thanks to the organisers, and to Brian Doyle and Dave Bently, both CF parents, for their huge input.

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Spectrum / Issue 22

MIDLANDS BRANCH FUNDRAISING Cheque Presentation held on 6th July On 6th July, Jillian Mc Nulty (PWCF) handed over the proceeds of her fundraising event at the Courtyard in Longford in June.

Jillian received great support from the Community in Longford and the event was attended by Senator David Norris, who conducted the draw for the donated prizes.

Street entertainment, including that of Charlie McGettigan, was provided free of charge and the event was co-ordinated

by Martina Glennon (Optimum Events).

Well done to all.

Jillian McNulty (PWCF) presenting a cheque to Gerry Johnson of the Midlands Branch.

IN MEMORY OF PAUL MINCHIN Donation to CFAI Paul Minchin from Bagenalstown Co Carlow sadly passed away on the 12th of May this year at the Mater Hospital. The family had a collection on the day of Paul’s funeral in lieu of flowers, and along with personal donations from friend and family members, raised €2,000 for the CFAI. Paul is survived by his parents Peter & Margaret, brothers Patrick, Sean, Peter and Martin, and sister Sinead, and sister in law Gillian and niece Hilary.

“We are very grateful to the CF Association for all the support they have given to Paul and the family over the last 22 years, and my family and I will continue to help raise funds and awareness of CF for the years to come.”

Sinead Minchin

Front: Martin Cahill being presented with a cheque by Sinead Minchin after Paul’s months mind mass, along with Breda Barrett and Kate Doyle (Parents of PWCF).

PWC AND LOCAL SCHOOL GET “ON YER BIKE” TO SUPPORT CYSTIC FIBROSIS Thanks to All PwC, together with Localise, a youth development organisation, held a fundraising event “On yer Bike” with the students from local school, St Laurence O’Toole’s, Seville Place, Dublin 1 on Friday 13th May. Over 100 PwC people and students from the school cycled some 250km (equivalent from Dublin to Cork) in a “cyclethon” at the offices of PwC to support the Cystic Fibrosis Unit in Temple Street Children’s University Hospital.

The success of the project, which was in no small part due to the students’ determination and hard work, is demonstrated by the generous donations received.

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Derek Cleary, Director of Services, Localise, said: “The children have really benefited from the project, while also getting a taste of working with a business and testing their project management skills. It is through working together with local businesses such as PwC that communities can really grow and develop and this project showed the power of this collaboration.”

About Localise Localise, Youth and Community Development organisation, has over 35 years of experience in community action and active citizenship.

About PwC PwC provides industry-focused assurance, tax and advisory services to build public trust and enhance value for its clients and their stakeholders. PwC has more than 2,000 people working in the Irish Firm.

Ronan Murphy, Senior Partner, PwC with students from St. Laurence O’Toole’s School, Brendan Lucas Santos (left), Casey Nugent (right) Lisa Kinlan (front left), Dion Pigott (front right).

DOC MORRIS PHARMACY DONATION €1,000 Donated to CFAI CFAI recently received a donation of €1,000 from Doc Morris Pharmacy, which opened a new outlet is Castleknock in June 2011.

Local customers and members of the CFAI, mum Rebecca Comyn and her daughter Mia (PWCF, age 1) cut the ribbon for the grand opening (see right).

Rebecca Comyn and her daughter Mia (PWCF, age 1) at the opening of the new Doc Morris pharmacy in Castleknock, Co Dublin.

CAVAN BRANCH FUNDRAISING €4,645 Raised for CF The Cavan Branch raised a total of €4,645 from their Easter Raffle, which was held on Sunday 26th April. The draw took place in the Bridge Inn Mountnugent, Co Cavan. This marked the 28th year of this particular fundraising event, which was started by Martin and Bridgid Kenny in 1983.

A total of 28 people commit to selling tickets for the Cavan Branch each year which makes it a very well supported event.

The Branch would like to thank everyone who bought tickets and donated prizes for the raffle.

Cheque presentation of €4,645 to the Cavan Branch.

Front Row, L-R: Sarah Brady, Raymond Dunne (Chairman of Cavan Branch), Mary Greene (Co-ordinator Local Branch), Rosaleen Cronin (Treasurer, Cavan Branch).

Back Row, L-R: Lorraine Brady, Fiona Cooke, Audrey Brady, Bridgie Kenny, Denise O’Reilly, and Tess Brady.

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AHERLA & DISTRICT VINTAGE CLUB CO CORK

By David Murphy The Aherla and District Vintage Club split funds raised this year between the Cystic Fibrosis Association of Ireland and two local orginasations. From 10am the Village of Aherla was getting prepared and fingers crossed for good weather. The food stalls along with other locally produced products started to set up their Farmers Market. The band set up their area and quickly began to entertain the people. The Sportsmans Bar was now getting to be a hive of activity with registrations taking place as well as teas and fresh scones freely available supplied by the two local organisations.

Members of the committee at the cheque presentation to Liam McCarthy, former Chairperson of the Southern Branch, CFAI.

A selection of vintage cars that participated in the event.

65 Roses pins were on sale and organ donor cards and awareness information sheets were handed out. By 11am, the village had a maginficent display of vintage cars and bikes. The tractors pulled out first, and the cars and bikes started on a different route. There were now over 80 registrations, and the cars took in some beauitful scenery on the way to Garrestown. Once again, the motorbike stewards kept everyone together with a bike or two at every junction. Not one car took a wrong turn so well done to these lads.

After a short break, the journey back to Aherla began. Sandwiches were prepared by three local CF families in Hickeys Bar for everyone as they returned to hear the results of the raffle. Everyone was in agreement it was a very well orgainesed day, so well done to all involved!

SOROPTIMISTS INTERNATIONAL 65 Roses Project Every two years, Soroptimists International adopt and support a particular charity project at national level. In November 2009, Soroptimist International Ennis & District initiated “65Roses” as a two year project with the aim of raising €100,000 for cystic fibrosis by November 1st 2011.

On 1st May, President Stasia McDermott announced that €76,598.93 has been raised by the 20 Soroptimist Clubs in Ireland and pointed out that that their ‘ongoing efforts will continue to improve conditions for people with CF’. The amalgamation of many small efforts has yielded this excellent result, including jazz brunches, fashion events, cake sales, casino evenings and raffles to name but a few. The outstanding support from the Soroptimists will make a very significant contribution to improving CF services in Ireland.

Philip Watt, CEO of the CFAI, and Martin Cahill, Fundraising Manager, look forward to meeting with the Soroptomists on 24th September in Ennis. Co Clare.

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65 ROSES & CHRISTMAS ART COMPETITION Closing Date for Entries is 15th August 2011 Just a reminder to our younger readers that the closing date for entry to our 65 Roses Christmas Art Competition is 15th August, so only another few weeks to get your entries in!

The theme of the competition is “What I like about Christmas”, and as the winning work will be used to produce our Christmas Cards, drawings should reflect this theme. We are also asking children to include a greeting line for the inside of the card.

The competition is open to all children with Cystic Fibrosis resident in the Republic of Ireland between the age of 4 and 15 years. The competition will have an overall winner, whose artwork and greeting line will be used as the publicity face of the competition during the festive season.

The theme of this years 65 Roses Christmas Art Competition is ‘What I like about Christmas’.

In addition there will be 3 awarded categories: ● 4 to 7 years old – 3 winners. ● 8 to 11 years old – 3 winners. ● 12 to 14 years old – 3 winners.

The winning drawings for each category will be used to produce our national Christmas Cards for the year 2011.

Please see our previous edition of Spectrum for full details on Rules and Entry Requirements or alternatively contact CFAI National Office for more details.

Entries should be sent via post to Eufemia Solinas, 65 Roses & Christmas Art Competition, CFAI, 24 Lower Rathmines Rd, Rathmines, Dublin 6.

Please remember to include: ● Name of artwork ● Greeting line ● Child’s name, age, address ● Contact number ● Parent’s name and signature Winners will be announced in the next issue of Spectrum.

Best of Luck!

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Spectrum / Issue 22

ISSN 2009-4132

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