Spectrum - Issue 21

May/Jun 2011

SPECTRUM

Published by the Cystic Fibrosis Association of Ireland

IN THIS ISSUE:

• Conference Review • New CF Units • Grant Updates & Travel Tips • Life Matters for CF • Upcoming Fundraising Events

Issue 21: May/Jun 2011 www.cfireland.ie

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Spectrum / Issue 21

Dear All, As we head into summer, we can reflect on a few more important steps towards better CF services in Ireland since the last issue of Spectrum.

An Taoiseach, Enda Kenny, T.D. received a strong Mayo welcome at our Annual Conference in Westport in April. He is the first Taosieach to speak at a CFAI conference and he stayed for over two hours chatting with many of the 250 conference participants. We include plenty of photos in this issue of Spectrum and we thank again all our speakers, our sponsors and participants.

The profile of CFAI in the national media remains high. As part of our national ’65 Roses’ awareness week in April, RTÉ aired a special edition of Prime Time. TV3 also showed an excellent programme on Anna Melia and CF, and there was also extensive coverage of CF in the national and local press. The sales of our 65 Roses pin were substantially up this year, with half the proceeds going to national services and half to Branches. Thanks again for all those who gave their support or who organised events linked to this week.

We can look forward to the opening of new CF facilities in Crumlin Children’s Hospital and Cork University Hospital in the next few weeks. We can also look forward to the Flora Women’s Mini-Marathon in June, when over 1,000 women will be running for CF. We are also pleased to report that after late night negotiations, the issue of the number of in-patient beds for CF patients in the new ward block in St Vincent’s University Hospital has been satisfactorily resolved and the text of the agreement reached is included in this edition of Spectrum. The Minister for Health, James Reilly T.D., who endorsed the Vincent’s Statement, has also promised that CF screening for newborn children will begin in July of this year.

The first dedicated lung transplant surgeon has been appointed to the Mater Hospital.

She commences work in the autumn. This will be of great benefit to all those waiting a lung transplant in Ireland, including patients with CF, Alpha 1 and lung fibrosis.

Despite such progress there have been very difficult times during the last few months, particularly for individual families, which reminds us all of the struggles of the present and the many struggles ahead.

As a further contribution to the struggle for better services, we particularly welcome the recent launch of ‘Life Matters for CF’ where CFAI members from Branches in Louth and Meath (including Drogheda and Dundalk) have come together to fundraise for a dedicated out-patient facility for children in Drogheda Hospital. It’s a great development and congratulations to all involved.

Kind Regards, Philip Watt (CEO) Alica May (Editor) 2

May/Jun 2011

Section 01:

CONFERENCE 2011 : Page 2-6 Launch of 65 Roses Week Overview of Presentations Photographs from the Conference -Section 02:

LATEST NEWS : Page 7-9 National Office for Organ Donation and Transplantation New Lung Transplant Surgeon Appointed Newborn Screening to Commence in July St Vincent’s Hospital Update New CF Units Opening Soon PWCF Communications for Children and Teens -Section 03:

GRANTS & INFO : Page 10-13 Fertility Grant Scheme 2011 Exercise Grant Scheme – Round 2 Travel Tips Incapacitated Child Tax Credit -Section 04:

EVENT FOCUS : Page 14-15 Life Matters 4 CF – Official Launch -Section 05:

PWCF SPOTLIGHT : Page 16-17 Katie Moore, Milliner -Section 06:

FUNDRAISING : Page 18-25 Flora Mini-Marathon & 1 in 1,000 Garda Tour de Force Charity of the Year Cheque Presentations And much more...

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CONFERENCE 2011

SECTION 01

PAGE 2—6

LAUNCH OF 65 ROSES WEEK Official Opening of Conference The CFAI Annual Conference took place in Knockranny House Hotel, Westport, Co Mayo on the eve of our National Awareness Week. Over 250 members, friends and delegates descended from all corners of the country to attend our conference this year, making it one our most successful to date.

The conference kicked off in style on the Friday night with a warm welcome from Seán O’Kennedy, Chairperson of the CFAI, Cllr Michael McLoughlin, Leas Cathaoirleach, Westport Town Council, Eamonn Abberton, Mayo Branch Chairperson and Dr Michael O’Neill, CF Consultant, Mayo General Hospital.

Our 65 Roses Awareness week was then officially launched by An Taoiseach, Enda Kenny, T.D. who began by saying that the government was ‘very aware of the challenges that people with CF and their families face in managing their condition.’ He also acknowledged the work of the Association and its committment to improving services for people with CF in Ireland. ‘‘For 48 years, the Cystic Fibrosis Association of Ireland has actively campaigned in the interests of people with cystic fibrosis and their families, increasing knowledge and awareness of the condition. It is as a result of their campaigning that the majority of services provided around the country are in existence.”

Addressing the building work for the new unit at St Vincents University Hospital, Mr Kenny reassurred members that ‘the new Unit in St. Vincent’s Hospital is on track, on time, on budget and it is my intention to make sure it remains that way. The new Programme for Government has committed to expediting its completion and commissioning...and I am confident of delivering upon this. You and your families have waited far too long for this project to open. It can never be forgotten that cystic fibrosis patients are fighting for their lives…you don’t have time for broken promises’.

An Taoiseach, Mr. Enda Kenny, T.D., speaking in Mayo at the Cystic Fibrosis Association of Ireland conference in April.

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‘This Government is very aware of the challenges that people with CF and their families face in managing their condition.’

Full details of the speech can be found at: http://www. merrionstreet.ie/index.php/2011/04/speech-by-the-taoiseach/

May/Jun 2011

In conjunction with the Rose of Tralee, Clare Kambamettu, the Taoiseach presented awards to members who have made outstanding contributions to the Association over the years.

This included a Special Recognition Award to Professor Charles Gallagher, Adult CF Consultant at St Vincent’s University Hospital in Dublin. Zoe Woodward also accepted an award on behalf of the organisers of the 1 in 1,000 mini-marathon fundraising initiative in 2010 that raised much needed funds for a new nuit in Our Lady’s Children’s Hospital, Crumlin, which will be opening soon. Homage was then paid to the Paddy Kierans Memorial Walk committee members, an initiative commenced by Paddy Kierans whose untimely death occurred in December 2006. Julia Kierans accepted this award on behalf of the committee, whose work has raised thousands of euros for cystic fibrosis over the years.

An Taoiseach Enda Kenny, TD, and the Rose of Tralee, Ms Clare Kambamettu presenting an award to Zoe Woodward and ‘1 in 1,000’.

Prof Charles Gallagher, leading CF Consultant at St Vincent’s University Hospital.

Julia Kierans receiving award on behalf of the organising committee of the annual ‘Paddy Kierans Memorial Walk’.

Friday evening ended with a drinks reception and music entertainment, allowing members the opportunity to catch up and socialise before the next day.

OVERVIEW OF PRESENTATIONS Saturday 9th April The theme of this years conference was ‘CF – the Challenges for Families, Healthcare staff and a New Government’, and a wide variety of presentations and workshops took place on the Saturday to reflect this description.

Morning Session Mr Seán O’Kennedy, Chairperson, CFAI welcomed participants bright and early on the Saturday morning, while Dr Mary Herzig, CF Consultant, Galway University Hospital chaired the first session. Members who could not attend the conference joined in via videolink.

Professor John Moore, City Hospital, Belfast, kicked off proceedings with his presentation on ‘The Good, The Bad and The Ugly – What do CF Bugs mean for me?’ Philip Watt, CEO of CFAI then addressed some of the challenges facing the new government in the context of the current economic climate. Professor Jim Egan, who has recently been appointed as the new lead for the National Office for Organ Donation and Transplantation, spoke about lung transplantation in Ireland in 2011. Of the 32 lung transplants that have taken place in the Mater hospital to date, 5 have been for people with cystic fibrosis. Prof Egan also pointed out that the number of patients awaiting lung transplantation in Ireland has been increasing steadily since 2004.

He also discussed rates of organ utilisation legislation surrounding consent (opt in/opt out/ 3

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Katie Moore, PWCF and Milliner, places her 65 Roses hairpiece on the Rose of Tralee, Clare Kambamettu, before the conference.

Mr Seán O’Kennedy, Chairperson of the CFAI, speaking at the opening address.

Mr. Eamonn Abberton, Mayo Branch Chairperson speaking at the opening night.

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An Taoiseach, Enda Kenny, T.D., is welcomed by Cllr. Michael Burke, Cathaoirleach, Mayo County Council and Cllr. Michael McLaughlin, Leas Cathaoirleach, Westport Town Council at the opening night of the Conference.

An Taoiseach, Enda Kenny, T.D., being presented with a 65 Roses badge by the Rose of Tralee, Ms Clare Kambamettu and Mr Philip Watt, CEO, CFAI on the opening night.

Dr Ed McKone, CF Consultant at St Vincent’s University Hospital, Mary McCarroll, Eastern Branch of the CFAI, and Tomas Thompson, CF Patient Advocate, CFAI.

May/Jun 2011

Back L-R: Peter Carey, Shane Halligan, Dr. Michael O’Neill, CF Consultant, Mayo General Hospital, Mr. Philip Watt, CEO, CFAI, Vincent O’Malley, Tomas Thompson, David Spillane, Mark Campion and Michael Ring TD, Minister of State, Dept. Transport, Tourism & Sport. Front L-R: Patricia Duffy Barbar, Ita Minogue, Caroline Heffernan, An Taoiseach, Enda Kenny TD, Debbie McCarthy, and Katie Moore.

Lorraine O’Neill, Raymond Dunne, Rosaleen Cronin, Karen Keogan, Cavan Branch.

Eileen Lynch, Claire Toal and Maureen McKeown, Dundalk Branch.

Members of the Louth Branch. Front L-R: Jim Fay, Julia Kierans, Sarah Smith and Gerard Fay. Back L-R: Michael Hughes, Cyril Gillen, Michael Marley and Jo Smith.

Prof John Moore, ‘The Good, The Bad and The Ugly – What do CF Bugs mean for me?’

An Taoiseach Enda Kenny, TD, and Cllr. Frank Godfrey, Louth County Council.

Prof Jim Egan speaking on the subject of lung transplantation in Ireland in 2011, on Saturday.

An Taoiseach Enda Kenny, TD, with Patsy and Deborah Kett of the Clare Branch.

Dr. Kate Russo, Queen’s University, Belfast with Padraig and Lorraine Burns, Mayo Branch.

Suzie Brock and Martin Cahill, CFAI, drawing winning tickets from the raffle at the gala dinner dance on Saturday night.

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mandatory). Dr Kate Russo, Chartered Clinical Psychologist, Queen’s University Belfast finished the opening session with a discussion on the impact that living with CF can have on families, and how stress can influence your thoughts, emotions, physiological feelings and behaviours.

She also suggested ways in which one can better manage these feelings by using certain coping strategies.

Following a short tea break, the parallell workshops began. This allowed people the opportunity to choose a themed seminar that most suited their individual interests and needs: Paediatric Services, including Newborn Screening; Adult CF services, including US Perspective; and CF and Mental Health. Summaries from each of these workshops will be made available to members in our forthcoming annual report.

Afternoon Session The afternoon session of the conference was chaired by Tomás Thompson, CFAI Patient Advocate, and members of the People with Cystic Fibrosis Group first took to the stage with a presentation on ‘PWCF Communication, Past, Present & Future’. Caroline Heffernan, CFAI Patient Advocate, first discussed the physical and mental impact of having CF, and how the issue of cross-infection has hampered physical contact and communication between PWCF. Maria Delaney (PWCF), also joined this session via videolink. Modern technology has a big role to play in overcoming the isolation many PWCF may feel. The CFAI Forum, PWCF Adult Group and social networking sites were mentioned as supports to overcome such isolation.

Dr Ed McKone, CF Consultant, St Vincent’s University Hospital, subsequently provided an overview of genetics and CF. Over 60% of Irish CF patients have two copies of the F508del mutation, which causes severe or “classic” CF. In Ireland, seven mutations account for over 80% of CF, with the G551D mutation being the second most common, found in 11% of Irish patients.

Dr McKone also mentioned how different CFTR mutations can be grouped together according to function. The implications of CF mutations on prognosis, treatment, and new therapies that target the CF gene were also discussed – the most promising is VX770 which is effective in G551D and has important implications for Irish CF patients.

For those of us who were hungry enough for more information and discussion, the afternoon workshops offered members a choice from the following: Microbiology of the CF Lung; Focus on Patient Interaction/Fundraising with CF centres; and A Profile of CF in Ireland and Genetics.

Again, an overview from each of these seminars will be published shortly in our annual report. The plenary session finally wrapped up proceedings for the Saturday whereby rapporteurs presented five key points from each of the parallel seminars to the rest of the conference participants.

After a few hours of rest and relaxation, attendees congregated for a drinks recetion before the gala dinner dance. A raffle was held and prizes included a laptop, camera, Raddisson hotel voucher and cash. A great night was had by all, and thanks were, and continue to be, extended to the Mayo Branch for their support in organising this year’s conference!

Note: Webcasts from the conference will soon be made available for viewing on the CFAI website.

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LATEST NEWS

SECTION 02

PAGE 7—9

NATIONAL OFFICE FOR ORGAN DONATION AND TRANSPLANTATION HSE Press Release The HSE has established a National Office for Organ Donation and Transplantation. The office will be led by Professor Jim Egan, Consultant respiratory and transplant physician at the Mater Misericordiae University Hospital. The office will endeavour to enhance organ donation in Ireland and underpin the quality of outcomes for patients following organ donation in line with the European Directive on Organ Transplantation.

“There is a need for organ donation and transplantation to be given a national focus and the establishment of this office will enable that to happen. We need to enhance the number of organ donations as a national priority and ensure that those patients awaiting organ transplantation have the maximum opportunity of life saving treatment.”

Professor Egan, Clinical Lead for the National Organ Donation and Transplantation Office.

Dr Philip Crowley, National Director of Quality, Risk and Clinical Care said the HSE recognised the need to bring greater focus to this area. ‘There is tremendous work being done in this area by doctors and nurses in our hospitals and this office will further support this work and enhance organ donation and transplantation.’

NEW LUNG TRANSPLANT SURGEON APPOINTED Mater Hospital Dr Karen Redmond has been appointed as the first dedicated lung transplant surgeon to the Mater Hospital in Dublin. Dr Redmond is also a specialist in ex-vivo lung perfusion, a new technique that allows time to accurately assess the lung and to optimise function of injured donor lungs so that they can be successfully transplanted into patients Ms Redmond completed her medical degree and postgraduate doctorate (MD) from University College, Dublin, and underwent her specialist training in cardio-thoracic surgery from the Royal College of Surgeons Ireland in June 2007. She has since trained at Toronto General Hospital, Canada and her most recent appointment has been Consultant in Thoracic Surgery and Lung Transplantation at the Royal Brompton and Harefield NHS Foundation Trust.

We welcome and look forward to Dr Redmond taking up her next post at the Mater Hospital in Dublin soon.

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NEWBORN SCREENING TO COMMENCE July 1st Minister for Health, James Reilly T.D. has confirmed that CF screening for newborn children will begin in July of this year. ‘The National Newborn Bloodspot Screening Programme (NNBSP) is in operation since 1966 and already screens newborn infants for five conditions including phenylketonuria, classical galactosaemia, homocystinuria, maple syrup urine disease, congenital hypothyroidism and from 1 July 2011, cystic fibrosis will be included,’ he said.

In order to comply with data protection legislation, Minister Reilly has said that ‘a number of changes are now being implemented with regard to the newborn screening card (NSC) and the NNBSP. These changes include the development of a new NSC, obtaining written consent for the mother to have her newborn infant screened for the above conditions, retaining the NSC for ten years (to be disposed of in the child’s 11th year), and that the information pertaining to the result will be retained for 25 years in line with HSE policy on the retention of healthcare records.’

A new parent informaiton sheet is also being developed.

These changes have evolved from collaboration between the National Newborn Bloodspot Screening Laboratory, Children’s University Hospital, Temple Street, the Department of Health and Children, the Data Protection Commissioner and the Health Service Executive. CFAI also participated in the National Steering Group to plan for newborn screening.

ST VINCENT’S UPDATE Joint Statement Issued We are happy to inform members that the issue surrounding the number of inpatient beds for CF patients in the new ward block at St Vincent’s University Hospital has been satisfactorily resolved. Confusion and unease arose following a statement issued by Minister James Reilly TD on RTÉ’s Prime Time on 12th April, which suggested that just 20 inpatient beds in the new development would be dedicated to CF patients. Philip Watt, CEO, CFAI expressed serious concerns that 20 beds would be insufficient in winter time when patients are ‘at their sickest and do not have the time to wait for beds.’

Following late night negotiations between Nicky Jermyn, CEO, St Vincent’s University Hospital Group, Prof Charlie Gallagher, Director, National Referral Centre for Adult Cystic Fibrosis, Philip Watt, CEO, CFAI, and Dr Barry White, National Director, Clinical Strategy and Programmes, HSE, a joint statement was issued on 15th April regarding the provision of beds for CF patients in the new unit at St Vincent’s University Hosiptal in Dublin. The agreement, which was signed by these individuals, is as follows: ‘We welcome the development of the inpatient and day care 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 8

May/Jun 2011

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.’

This satisfactory conclusion and welcome clarification to in-patient provision in the forthcoming CF unit in St Vincent’s has also been approved by the Minister for Health, James Reilly T.D. The protocol to ensure that two beds will be kept free for CF patients at all times is currently being developed by the stakeholders.

NEW CF UNITS OPENING SOON Crumlin and Cork A new four-bed isolation, inpatient unit is soon to be opened at Our Lady of Lourdes Hospital in Crumlin. The CFAI committed €750,000 to its development in 2009/10, the funds for which was drawn from a range of resources, particularly the Shane Kinsella Fund and the 1 in 1,000 initiative in 2010.

Likewise, a new CF ambulatory daycare unit is set to open in Cork University Hospital shortly, comprising five individual isolation rooms solely for CF patients, a dedicated gym, a multidisciplinary team room and consultation suites. The new unit in Cork was built in a partnership between the HSE and local Munster CF charity, Build4Life, which raised more than €200,000 – the CFAI was hugely supportive of the fundraising effort.

Dr Barry Plant, programme lead for adult CF care at CUH, commented that the new facility marks the start of an important phase in the hospital’s provision of care for CF patients. “CF patients are living longer into adult life - in the past, the majority of CF patients were children but now 56 per cent or so are adults. The majority of these are still young adults in their 20s and 30s, but we have patients in their 40s, some in their 50s, a few living into the 60s and we have one patient in their 70s, and it’s these patients living with CF who the ambulatory care centre will cater for,” he explained.

Keep an eye out in the next issue of Spectrum for more information on the official opening of each of these new units.

PWCF COMMUNICATIONS Focus on Children and Teens Following the PWCF communications presentation at our Annual Conference in Westport this year, the question was asked ‘how can children and teens with CF who may wish to discuss CF issues with each other do so in a safe, cross-infection-free way?’.

The answer – CF advocates Tomas and Caroline are willing to facilitate teleconference calls monthly on the CFAI conference line for each group individually. If you are interested, please contact Caroline on cheffernan@cfireland.ie.

How does this work? On a given day and time set by the group interested in chatting, we all call the conference line and enter in a particular code. You will be given the number and code required by Caroline.

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GRANTS & INFO

SECTION 03

PAGE 10—13

FERTILITY GRANT SCHEME 2011 Opens Very Shortly 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.

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

The application forms and policy guidelines for this scheme are currentlly being finalised and will be available for download under the ‘Grants and Services’ section of our website shortly.

In the meantime, if would like to link in with other members who have undergone fertility treatment or if you have any queries about our fertility grant scheme, please call Alica May at our National Office, or email amay@cfirelnad.ie.

EXERCISE GRANT SCHEME 2011 – ROUND 2 Opens at the End of July This has been a hugely successful initiative of the CFAI, which was first piloted in 2009 due to encouragment of the PWCF Group. Over 250 members have availed of this grant to date and many have since testified to the enourmous benefit the grant has impacted their health.

CFAI originally earmarked €40,000 for the exercise grant in 2011, but this budget has since been increased to €60,000 to meet the demand of such a high volume of applications received in Round 1.

Round 2 of this scheme opens at the end of July, at which point the application forms and associated guidelines will be available for download on the CFAI website. The deadline for submission of applications will also be announced then. As for Round 1, supporting documentation in the form or a quotation or receipt must be provided with each application.

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 the next round.

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TRAVEL TIPS For CF Families and PWCF It’s that time of year again where many of you will be planning a holiday abroad. Some lucky people may even be contemplating a round world trip backpacking, and others will just need a few weeks in the (guaranteed!) sunshine.

So 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 below.

Planning a trip to the sun? Here are some travel tips to help with your preparations.

Health and Travel Documents Health-related travel documents may help avoid hassles when crossing a border. The following information would prove useful: • A list of your medications (trade/generic names) and a description of why you need each one • A letter from your CF clinic detailing your diagnosis, medication and equipment, especially if travelling with a compressor, insulin or EpiPen needles • Your CF clinic’s contact information Make photocopies of these documents so you can give a copy to any official who requests it.

Keep the originals on your person or in a safe place at all times (hotels often have a safe or lock box in guest rooms). Another handy tip is to scan and email these details to your email account so that they can be printed off when you need them.

Travel Insurance It can be difficult to obtain travel insurance as an individual with CF (or any chronic illness). A document outlining the travel insurance options for PWCF it can be downloaded on the CFAI website at: http://www.cfireland.ie/news.php/news/shownews/158.

If you are travailing within the European Union you should apply for a European Health Insurance Card. One Card is needed for each individual or member of the family.

Please note that it is very important for people with CF to have a comprehensive travel insurance policy before taking a trip abroad. Failure to purchase adequate insurance could result in you incurring massive costs should you require medical treatment while you are away.

Travelling with Medical Devices and Medications If you need a compressor while on vacation, take your own, or ask for a portable one that has a battery pack from your Local Health Centre, if electricity is unavailable or unreliable. If the clinic does not have a portable compressor available, clinic staff will help you locate one.

If you are travelling to North America, find out about the electricity voltage and frequency, and the type of plugs needed. You will likely require plug adapters and/or voltage converters to avoid damaging your electrical equipment and to use it safely. Voltage adapters and other electrical equipment can be purchased at most electronics stores.

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Getting Medical Treatment While on Vacation If you are unwell on vacation, contact your CF clinic, your medical insurance company, or a local hospital or medical centre. If you need immediate medical attention, hotel staff can usually direct you to the closest health care facility, and arrange transportation for you.

When you see a doctor in another country, take your CF clinic’s emergency and general contact numbers, your passport and insurance documents. If you pay for anything, always obtain a signed receipt. If you are unwell upon your return home, be sure to contact your CF clinic (or family doctor) as soon as possible, so that you can be checked for illnesses.

Tips to help you navigate your way with holiday preparations.

Extended Travel If you are travelling for an extended period of time, it is wise to locate the nearest CF clinic to where you will be visiting; you can get information on CF centres abroad from Cystic Fibrosis Worldwide: www.cfww.org.

Medications Many medications are temperature-sensitive, so special care should be taken. Room temperature is generally identified as 15 to 30˚C. Keep all drugs at the recommended temperature, and keep them away from strong light and sources of extreme heat or cold (e.g. windows, automobiles, and appliances). Enzymes should always be kept at room temperature. Be sure to store items that require refrigeration promptly so that they are not exposed to unnecessary heat. When travelling during the summer months, be certain to store refrigerated medications appropriately, but do not freeze them. Medications placed directly on top of a freezer pack can freeze, harming them.

Dehydration Dehydration can occur very quickly, especially in hot, humid weather. Do not wait until you are thirsty to take a drink – always keep your fluid intake up! To help avoid dehydration, limit caffeinated beverages, which act as a diuretic and can cause increased fluid loss. Drink plenty of water, fruit juice and/or sports drinks before, during, and after exercise. Alcohol also contributes to problems of fluid imbalance, so avoid drinking in excess.

Food and Water Practice good hygiene to avoid infection. Wash your hands well and frequently. If you can’t wash your hands with soap and water, use an alcohol-based waterless hand sanitiser. When dining out, avoid food from unreliable sources, such as street stalls and kiosks. Wash all fruits and vegetables thoroughly, and avoid any unpasteurised products (such as unpasteurised milk, yogurts and cheeses).

Use extra sun-block When you are outside, use extra sun-block, especially if you are taking medications that increase sun sensitivity.

This document will be soon be available for download from the CFAI website.

Thanks for Tomas Thompson for compiling these travel tips.

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INCAPACITATED CHILD TAX CREDIT Reminder The Incapacitated Child Tax Credit can be claimed by a parent/guardian of a child in Ireland who is permanently incapacitated, either physically or mentally. The Revenue Commissioners regards Cystic Fibrosis as permanently incapacitating. The disability must have arisen before the child reached the age of 21 or while s/he was in full-time education.

In 2011, the Incapacitated Child Tax Credit is €3,300. This is effectively a €3,300 discount off your tax bill. A credit may be claimed for each child where more than one child has cystic fibrosis.

How to apply You should call or write to your local tax office outlining the credit claimed and the name(s) of the child(ren). A first claim should be accompanied by a doctor’s certificate showing: • The date the incapacity first arose • The degree and extent of the incapacity For more information, please contact visit the Revenue contact locator webpage to find the Locall number for your region. You can find more detailed contact details for your region here: http:// www.revenue.ie/en/contact/index.html Tax is calculated as a percentage of your income. Tax credits are deducted from this to give the amount of tax that you have to pay. A tax credit has the effect of reducing your tax liability by the amount of the credit. Tax credits are not relevant to people who do not have enough income to be liable for tax.

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EVENT FOCUS

SECTION 04

PAGE 14—15

LIFE MATTERS 4 CF – OFFICIAL LAUNCH

By Loretta Allen Byrne Life Matters 4 CF, is made up of a forum of people from Co. Louth and Co. Meath who are campaigning to open up a dedicated outpatient facility for the 25 children with cystic fibrosis from Meath and Louth attending Our Lady of Lourdes Hospital in Drogheda.

As we all know, Cystic Fibrosis is a chronic genetic condition affecting primarily the lungs and digestive system. It is very hard for people with CF (especially young children) to manage their condition on a daily basis without the support of proper facilities/services and trained full-time dedicated staff. Life Matters 4 CF feel it is important that the services for peadiatric CF patients be improved up to European Standards and on par with the postive improvements for CF adults, i.e., dedicated day units and isolated rooms with en-suite facilities.

ANNEVILLE HOUSE

HOSPITAL CAR PARK

WINDMILL ROAD

With the help of the CFAI National Office, we have been able to secure a building on Windmill Rd facing onto the carpark of Our Lady of Lourdes Hospital and this, along with the positive support from hospital management, has enabled us to move forward with this project. We have verbal planning permission but wanted to make sure the HSE were agreeable before we submitted permission – this is now in process.

The Life Matters 4 CF logo.

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ANNEVILLE CRESCENT

On completion, these premises will be furnished to high specifications with isolated rooms and filtered air conditioning, thereby reducing the risks of cross infection. The CFAI National Office will also be making representations on behalf of our children to have the appropriate level of specialised staff in place, including a permanent CF Consultant.

The Drogheda and Dundalk Branches of the CFAI have been fundraising for the last 4 years in anticipation for the improvement of CF services and facilities in Drogheda. All funds collected to date have been transferred to a domain account set up soley for this purpose. Special thanks to Gerard Fay (Drogheda Branch) & Máire and Ian Gallagher (Dundalk Branch) who have organised Marathons & Lumber Train Treks annunally for the above improvements.

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client

Cistic Fibrosis Association of Ireland

project Out Patients Facility at n°52 Windmill Road

Site Plan Scale 1:500

date

SITE OUTLINE IN RED ROAD ACCESS

description

Drogheda Co. Louth site plan

drawing

1028 ske

HOSPITAL ACCESS 16/3/11

issued to the HSE and clients

job ref.

1/200 scale

issue October 2010 date

0-001

series

n°

1028 ske CAD file name

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

Plans for the new day care unit in Drogheda.

Iain, Cathal and Máire Gallagher with CF Nurse Specialist Mary Woods at the Lumpers Train Trek.

May/Jun 2011

Official Launch of Life Matters 4 CF The official Launch for Life Matters 4 CF was held on Saturday 23rd April in Kilmessan, Co. Meath.

We were delighted to have celebrity guest, Aintree Grand National Winner Jason Maguire who agreed to open the event. The event was attended by hundreds of well wishers and was held in the form of a family fun day.

Loretta Byrne and Máire Gallagher, Life Matters 4 CF.

Máire Gallagher, Loretta and Michael Byrne, Martin Cahill (CFAI), Meath West T.D Ray Butler, and ladies taking part in the Mini-Maraton for Life Matters 4 CF with Jason Maguire, Aintree Grand National Winner 2011, Native of Kilmessan and Patron of Life Matters 4 CF.

Life Matters 4 CF welcomes all families affected by Cystic Fibrosis to come and join our campaign to open up this day unit. We would also like to make you aware that if you are curruently attending Crumlin or Temple Street at present, you are entitled to use Drogheda as a shared care facility.

(Unfortunately fundraising and the support from charitable companies will be the main source of income that we will have to make this happen.)

Local Support A fundraising campaign is also currently underway in Co. Meath, which is being organised by Loretta Byrne and a committee of ladies from Kilmessan, Co. Meath. This is happening thanks to the support of approximately 200 ladies from the village of Kilmessan (we have two young children with CF in Kimessan) and surrounding areas who have pledged their support to this worthy cause by agreeing to complete the Flora Woman’s Mini-Marathon. We are overwhelmed by the support from well wishers and would like to wish them good luck on Marathon Day. If you have any fundraisers happening in your area, please consider supporting our campaign.

You can make donations on mycharity.ie/events/lifematters4cf or you can contact Loretta Byrne on 087 205 8778 who will be able to advise you on where to lodge money or who will have information on upcoming events.

We will also have a stalls at the Scurlockstown Fair, Trim, Co. Meath on 19th June. If you are around, please come over and show your support.

The Steering Group for Life Matters 4 CF includes Máire Gallagher, Loretta Allen Byrne, Cyril Gillen, Gerard Fay, Philip Watt and Peter Hughes.

Loretta Byrne (Parent of a young boy with CF), Life Matters 4 CF (Louth, Meath Fundraising Committee of the CFAI).

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PWCF SPOTLIGHT

SECTION 05

PAGE 16—17

KATIE MOORE Milliner, Artist, Traveller & Fundraiser I was diagnosed with CF when I was 6 months old, my family and I were living in America, I was born there. When people ask me ‘what is it like living with CF?’ I sometimes think ‘what is it like not living with CF?’ I don’t know any different, this is me, I’m 24 years old and have always known I have CF. As a child I was told I was ‘special’ because of it, which was great for me to hear as I always wanted to be a magical princess who rode around on her unicorn – children are able to cope with a lot more than we realise. I’m a very positive person. I look after myself really well, I don’t drink or smoke, I eat very well, I run or cycle everyday, and I take all my medications. I’m determined to keep myself as healthy as possible.

I’m a very creative person, which I feel very lucky to be. I love art. I actually think my love of art started from spending so much time in hospital when I was growing up and always getting colouring books and pencils as gifts. I have taken part in lots of art exhibitions, my last one being at the Galway Arts Festival. I also love to sew, I started customizing and making my own clothes when I was around 10, there was always a sewing machine at home, as my mum used to do alterations. I then went on to study Art and Design for a while. I had to go on work placement, so I decided to apply to some local milliners in the West of Ireland; I had a great time learning the skills of a milliner. I then got accepted to have a work placement with Philip Treacy in London, which was an amazing experience, I couldn’t believe my luck. I learned so much from my time at Philip Treacy’s; he was so nice to me.

Also I loved living in London. Walking around both Camden and Notting Hill markets was so much fun, there’s so much culture and creativity there. I used to walk around there soaking it all in, a hub of inspiration.

I work for myself as a milliner now, Katie Moore Millinery. It works out great working for myself, I don’t need to ask my boss for days off to go to my CF Clinic’s (it used to be so annoying having to use my holidays for clinic days). I’m my own boss. Also if I’m sick and need to take it easy, I can. I feel very lucky getting to do something I love. I recently made a headpiece inspired by the Cystic Fibrosis ’65 Roses’ Awareness pins – it is up for auction on www.cfwest.ie, all funds raised go to Cystic Fibrosis West Building Fund for the construction of the new specialised CF day care unit at Mayo General Hospital.

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Katie had a work placement with Philip Treacy in London, where she had an amazing experience perfecting her skills.

May/Jun 2011

I love to travel, as a child I grew up in America, Saudi Arabia, Bahrain and then Ireland. In 2009 I decided I wanted to go on a round the world trip, so my planning begun. I got my shots, packed lots of medication and a letter from my doctor explaining a bit about me, and my medical history. I was so excited about my trip and couldn’t wait! I was a bit nervous that I might get sick while I was away, but I kept thinking positively. My boyfriend and I headed off in February 2010. First stop Bangkok, then on to Koh Samui and Koh Tao, I love the sunshine! Australia was next followed by New Zealand. We were in New Zealand for 3 and half months, working on the north island and then travelling around the south island in a campervan. Because of the very damp weather in New Zealand I got a chest infection, I had to give up my job and take antibiotics for two weeks. We decided to speed up our time in New Zealand and move on to the heat! That’s the great thing with the flexible round the world tickets; you can change around your dates as you go, with no hassle at all. We went to Fiji, it was great, but I found the poverty there very sad. We stayed in a 34-bed dorm room there so I was a bit worried that I might have picked up some bugs, but all went ok. Next stop Hawaii, I loved it there.

Surfing or body boarding during the day and then at night we hung out with new friends, or even went to a movie on the beach.

We had a stop over in LA and then New York. We were very lucky and got to stay in a gorgeous suite at The Waldorf Astoria as my half brother works there and thought we deserved a treat!

I had an amazing time on my round the world trip, we went away for 6 months. I’m already planning my next big trip. Of course I got some questions like ‘was I not too afraid to go away since I have CF’, but like I said, I’ve always had CF just like I’ve always had dreams of travelling, so I wouldn’t let my CF get in the way of living my life, as we all know life is too short.

Times Square, NYC (last stop on the round the world trip).

Waking up the campervan in New Zealand after being snowed in (even though it was June!).

This year a group of friends and I climbed Croagh Patrick on St. Patrick’s Day, in aid of Cystic Fibrosis West Building Fund. I tried to climb Croagh Patrick before but I couldn’t, my breathing was terrible, so I was very excited how I was able to climb it this time, all in 3 hours. I also completed the Western Peoples West of Ireland Women’s Mini-Marathon, which took place on 1st May in Castlebar, Co. Mayo in aid of Cystic Fibrosis West Building Fund.

I ran my last 10k in 2009, it took me 58 minutes.

Because of my CF I appreciate everything that I have, especially the everyday things, like being able to walk, talk, dress myself, have a roof over my head – these are important things that maybe if I didn’t have CF I wouldn’t give it a second thought, who knows.

Katie at the Sydney Opera House, Australia.

Yes, I have CF, but I also have a fantastic group of friends, the best boyfriend, a great mum and the cutest goddaughter, all of these make my live better.

I’m a very lucky person, CF and all.

Katie with some of her closest friends.

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Spectrum / Issue 21

FUNDRAISING

SECTION 06

PAGE 18—25

Many thanks to all who have supported fundraising to date this year. While times are difficult, there is no shortage of volunteers helping us to raise the funds to keep up the level of services required for the CF community, and this is very much appreciated. Thank you for your support and we look forward to your continued support into the future.

65 ROSES NATIONAL AWARENESS WEEK 2011 Thanks to All 65 Roses National Awareness Week took place from April 8th to 15th and was a resounding success. We are delighted to report that the week achieved its objectives of increasing awareness and raising much needed funds for local and national initiatives. This was due in no small part to the support provided by Branches, volunteers and fundraisers, who rose to the challenge.

A variety of events took place throughout the week: shopping centres, pub nights, music nights, wax and shave events, TV and radio interviews etc. which generated an amazing amount of national coverage for Cystic Fibrosis.

We look forward to having an even bigger 65 Roses week in 2012.

CHARITY OF THE YEAR 2011 Experian and GSK We are delighted to report that we have been chosen as Charity of the Year 2011 by Experian and, separately, GSK. Employees of both companies will organise fundraising events throughout the year with CFAI being the beneficiary.

We wish to thank our supporters, who proposed and voted for CFAI to be chosen and we look forward to working with them throughout the year to maximise the benefits of these initiatives.

MAYNOOTH FLOWER AND GARDEN CLUB May 28th A plant sale will be held on the square in Maynooth on Saturday 28th May, with all proceeds going to CFAI. Contact Moira Baxter on 086 4041927 for more information.

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May/Jun 2011

1 IN 1,000 & FLORA MINI-MARATHON June 6th Thanks to all the women that have signed up to being 1 in 1,000 at this year’s Flora Women’s Mini-Marathon. It’s going to be a fun day, and we look forward to seeing over 1,000 get around that 10km course in Dublin on June 6th in aid of Cystic Fibrosis.

Our 1 in 1,000 Facebook Page competition winner was Claire Kenny who won a night for 2 in the Absolute Hotel in Limerick. We have more great prizes for those of you who get your sponsorship/donations in by June 20th. Prizes include a night for 2 B&B at Kilronan Castle; Spa vouchers, luxurious skincare hampers; Hairdressing vouchers and much more! Those of you who have registered on My Charity are included in that draw already – and if you haven’t registered, why not do it – it’s an easy way to raise funds! Here is the link you’ll need: http:// www.mycharity.ie/charity/1in1000. Just follow the instructions to get yourself set up.

In the next issue of Spectrum we’ll have photos and a full report on how the day went. Good luck with your training and see you on June 6th!!

Louise Jordan, Michelle Massey, Apprentice winner Joanne Martin and Rose of Tralee Clare Kambamettu supporting 1 in 1,000 for the CFAI. Abbott are the main CFAI Sponsors for 1 in 1,000.

NEW YORK MARATHON 2011 Places Still Available 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 €5,000 to €3,999.

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 4962433and reserve your place before it is too late!

ISTANBUL & CAPPADOCIA WALK 2011 Application Deadline 31st May The Walk Committee is glad to report a huge amount of interest in this year’s walk to Istanbul and Cappadocia.

As previously advertised, each walker is requested to fundraise €2,625 for an unforgettable trip to soak up the Turkish culture. The deadline for acceptance of applications is 31st May 2011.

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Spectrum / Issue 21

GARDA TOUR DE FORCE 2011 Departs Kilkenny, 6th June Garda are out in force fundraising for the Tour de Force. Below is just a quick reminder of dates and steps involved. Approximately 70 cyclists will take part in the cycle, which will start from the Garda Sports & Leisure Centre, Westmanstown, Dublin 15.

The itinerary is as follow: • Depart 13th June at 9.30am from Westmanstown Golf Club for Athlone • Athlone to Galway, via Clonmacnoise Shannonbridge, Ballinasloe, Athenry, Galway • Galway to Clifden, via Spiddal, Carna, Maam Cross • Clifden to Westport via Leenane, Louisburgh • Westport: Climb Croagh Patrick and return to Westport Please come out in huge numbers to support them!

TEXAS HOLD’EM Now on 11th June The “Texas Hold’em” night in aid of Cystic Fibrosis scheduled for 29th April in Courtown Golf Club has been moved to the ’The Buglers’ pub, Rathfarnham and will take place on 11th June at 8pm.

Contact Kevin at 087 2595803 for more information.

GOLF CLASSIC IN AID OF CYSTIC FIBROSIS WEST BUILDING FUND Saturday 11th June at Enniscrone Golf Club, Co. Sligo A Golf Classic in aid of the Cystic Fibrosis West Building Fund will be held on Saturday 11th June at the Enniscrone Golf Club, Co Sligo.

Team of four - 120 euro per team. Presentation of prizes will take place at 8.30pm, accompanied by live music.

All funds raised will go to the construction of the new specialised CF day care unit at Mayo General Hospital.

For further information and bookings, please contact Enniscrone Golf Club 096-36297 or Katie 087 2244410.

CF West Golf Classic, which will be held on Sat 11th June at Enniscrone Golf Club, Co Sligo.

BALLYMURPHY TRUCK RUN 12th June CFAI have been chosen as the beneficiaries of this event, which is in its second year. The event takes place on 12th June and runs from Ballymurphy at 12 noon, over Mount Leinster and down into Bunclody.

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May/Jun 2011

An expected 200 trucks will take part, and Martin Cahill has been invited to drive the lead truck!! (this is dependent on the RTE mast being moved out of the way for the day)

IRELAND TO EVEREST – 32 STEPS FOR CF Upcoming Climbs The Ireland to Everest Team keeps climbing the Irish Peaks. This summer the team will climb the highest peaks in the 32 counties, with final climb taking place in August 2011. There is still time to join in and support Cystic Fibrosis in the process. Sponsorship cards and t-shirts to purchase will be made available in each climb.

Below is a list of final peaks left to climb, directions and meeting points are made available on their website and in our fundraising calendar closer to the climbing date.

• Co. Waterford: Knockmealdown. Height: 794m (2,605ft) Sunday 29th May • Co. Carlow/Wexford: Mount Leinster. Height: 796m (2,612ft) Saturday 23rd July • 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.

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 on the day 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.

IPPA HAPPY FACES 2011 €45,000 Raised for CF We are pleased to announce that IPPA Happy Faces Day 2011 raised a fantastic €45,000 for CF. Many thanks to Dermot Byrne, Chair of the Happy Faces committee, and members, Jonathan Sultan, Marketing Manager of Canon, and all the photographers from around the country who participated, donated studio time and their expertise to make this such a successful event for the second year running.

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Spectrum / Issue 21

KARYN JENKINS MEMORIAL TENNIS TOURNAMENT Raised €11,667 for CF A huge thank you to the ladies who organised the Karyn Jenkins Memorial Tennis Tournament in the Glenalbyn Tennis Club, Stillorgan, Co. Dublin on Saturday 9th April.

Denise Murphy and her able committee of Gertrude Ward, Marian Duggan and Val Cassidy organised an excellent tournament and raised €11,667 for CF.

Gertrude Ward (parent), Martin Cahill, Aoife Ward (PWCF), Marian Duggan and Denise Murphy.

SOROPTIMISTS INTERNATIONAL 65 Roses Project Every two years, Soroptimist 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 65 Roses National Project logo adopted by Soroptimists International.

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.

CBS TRAMORE Transition Year Students The Transition Year students of CBS, Tramore have raised funds for Cystic Fibrosis during their project and presented the proceeds on Monday 23rd May. Well done, lads!

WHITE COLLAR BOXING Artane Community Centre Willie Lyons organised a very entertaining boxing event in the Artane Community Centre with son Barry providing the music. Jem and Lorraine Downes (CF parents) and family members looked after the ticket sales and raffle as Willlie was busy keeping the boxers apart. Concern arose about our public liability insurance when a sprightly 79 year-old boxer stepped into the ring!

Thankfully, there were no injuries.

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May/Jun 2011

NEWMAN’S OWN FOUNDATION US$10,000 Donation The Newman’s Own Foundation presented a total of US$400,000 to Irish charities at a function in the Westbury hotel on 5th May. CFAI received $10,000 dollars, having been nominated by Ms. Sally Lynch.

CARNVALE BALL €17,770 Raised for CF Georgina Cavey and her fellow Project Team colleagues from the MBS in Project Management course in Smurfit Business School presented a cheque for €17,770 as the proceeds of the Carnvale ball held in February.

MIDNIGHT SHAKERS MASQUERADE BALL 650 Guests Attended This event took place on 14th May in Burlington Hotel, Dublin 2 with an attendance of approximately 650 guests. Many thanks are due to Seamus, Deirdre, Paddy, Stephen, Sarah and Sarah, whose efforts over recent months made the whole event possible. Their organisational skills shone throughout, and an evening of dinner, raffle, music and dancing was enjoyed by all.

Thanks are due also to all the sponsors, particularly Bernard Broderick of Broderick Brothers who supplied plenty of delicious bars. Both Michelle Massey and Jamie Moran of 2010 ‘The Apprentice’ fame, attended as supporters of CF

WAX, SHAVE OR COLOUR Held on 9th April Well done to Claire Mooney (PWCF), and parents Ciaran and Miriam, who organised a ‘Wax, Shave or Colour’ event on 9th April in Isaacs Well pub in Clonmellon, Co Westmeath and raised a massive €5,500 for CF. The DJ, Barman and all those who helped out on the night deserve a mention also.

The variety of ‘coloured’ heads in Clonmellon for weeks afterwards, was a sight to see!

Miriam Mooney, Martin Cahill, Claire Mooney and Ciaran at the cheque presentation for the Wax, Shave or Colour event.

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Spectrum / Issue 21

PARIS & LONDON MARATHON Many Thanks to All! We wish to thank all the participants of the Paris and London Marathon, who raised vital funds for Cystic Fibrosis. We had positive reports of the events, without recounting the usual marathon aches and pain. We certainly hope everyone enjoyed the experience and we are already planning to have even bigger teams taking part next year!

RATHCORMAC VINTAGE CLUB Held on 20th March Rathcormac Vintage Club held a Vintage Rally in Support of the Southern Branch of the Cystic Fibrosis Association of Ireland on Sunday 20th March. The wet Saturday had everyone nervous for the big day, but as a member of the club said on the Sunday morning, ‘never underestimate the power of the Rathcormac Boys’.

What started off dry and bright turned into a most glorious day. From early on Sunday morning, vintage tractors and cars started to arrive at the old carboot sale site. Registrations were carried out in glourious sunshine, plaques were given out along with raffle tickets for a meal for two in the splendid Rathcormac Inn, kindly donated by Jim and Kathy Dunne.

By 10:45 the collection of Vintage and classic tractors and cars was swelling and a sight to behold for admirers that called to feast their eyes on such a huge variety of our past. Word was given by Chairman Mr Tom Fitzgerald that the cars were pulling out first at 11am, a beautiful scenic route was planned and we would meet up with our tractor friends in Clodaulane where Jim and Gaye Doherty had plenty of irish stew teas/coffees laid on for everyone, and this turned out to be just the case when we arrived. After a chat and a browse around all the different models, the second part of the journey began back to the Rathcormac Inn through Fermoy with some beautiful scenery. Arriving back at Rathcormac shortly after 3pm we were treated to more refreshments at the Inn. Meal vouchers went to Peter Murray and the Cup went home this year with Niall Collins and his 1.6 MK2 Escort Ghia – a much admired car during the day. Congratulations to both tractors that joined in for winners and also to the Rathcormac Vintage Club and eve- Classic Rathcormac Vintage Club run. ryone involved for yet another very succesful day, and many thanks for choosing Cystic Fibrosis as their Charity this year .

Rathcormac vintage club was founded in November 2006 with about forty members. Since it started it has raised €44,618 for worthy causes including Rathcormac National School, Bartlemy National School, Breast Cancer Unit C.U.H., Marymount Hospice Cork to name but a few.

This years road run was done in aid of the Southern Branch of Cystic Fibrosis Association of Ireland. Proceeds from this event were presented at the Rathcormac Inn on 30th April.

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Vintage cars also at the event.

May/Jun 2011

PROUDLY SHE STANDS AFTER 150 YEARS A Book about St Mary’s Cathedral, Kilkenny This is an excellent book outlining the history of St Mary’s Cathedral, one of Kilkenny’s best known landmarks. The cathedral celebrated its 150th anniversary in 2007 at which point journalist Ray Cleere penned this book to document the fascinating insights into the history and development of this magnificent building, and to catalogue many of the events that have taken place there in its 150 year existence.

An impeccably researched and produced publication, this is a must have for a any avid historians out there.

Proceeds from the sale of this book, which is priced at €10, are being donated to CFAI, and copies may be obtained at all popular bookshops in Kilkenny city or by contacting Ray at 087 1221976.

A bookshop will also be opening beside the Cathedral later in the year, which will be selling copies of the book.

All proceeds going to Cystic Fibrosis.

Official Christmas Cards of the Cystic Fibrosis Association of Ireland.

Tel: 01 496 2433

65 ROSES & CHRISTMAS ART COMPETITION

Priced at just €10, the book is available for purchase in shops around Kilkenny.

Closing Date for Entries is 15th August 2011 After a successful first year, we are delighted to announce the launch of the “65 Roses & Christmas” Competition for the second year. As previously, the idea behind the Christmas Appeal is to give a chance to the younger CF population to express their artistic skills!

Overall winner in 2010 by Aoife O’Donnell, Age 10.

Clionadh King, Age 10.

Roisin McGannon, Age 15.

The closing date for sending in pictures is Monday 15th August 2011. Entries received after this date will not be considered. 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 our children to include a greeting line for the inside of the card. The winning drawings for each category will be used to produce our national Christmas Cards for the year 2011.

More information is available as an insert with this issue. Please contact Eufemia in the National Office if you have any further queries.

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Spectrum / Issue 21

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