Spectrum - Issue 31

Jan/Feb 2013

SPECTRUM

Published by Cystic Fibrosis Ireland

IN THIS ISSUE:

• Events to Mark our 50th Year • CF Ireland Annual Conference 2013 • Kalydeco Update • Exercise Grant 2013 Ñ Round 1 • Thinking of College Next Year?

• 65 Roses National Awareness Week

Issue 31: Jan/Feb 2013 1 www.cfireland.ie

Spectrum / Issue 31

Dear All, Welcome to the first issue of Spectrum for 2013. Happy birthday to Cystic Fibrosis Ireland (CFI), which is a youthful 50 years old and many thanks to all our branches, our members and supporters for their fantastic work since we were established in 1963.

Along with the Irish Cancer Society and the Irish Autism Society we are the oldest patient advocacy group in Ireland and one of the first CF patient groups in Europe. A forthcoming book on the association will give a good insight into how CFI came to be formed and some of our impact over the past five decades. The work of our members and the dedicated doctors and their teams is a story worth telling.

This issue of Spectrum highlights some of the events that will be taking place over the coming year, including a book to mark our 50 years and the thanksgiving and remembrance service on the 23rd of February. Some of our founding and long serving members and doctors will be attending as well as those who have only recently joined. Also join us for a light lunch afterwards Ă‘ it will be a good time to catch up with old and new friends. Don't forget to let us know if you are attending for the purposes of catering, email info@cfireland.ie or call 01 4962433.

As part of our 50th year we are shortening our name to Cystic Fibrosis Ireland (CFI) and we have refreshed the logo, while still retaining our well known kite sign. This will be welcomed by everyone who has tried to put our full name on a t-shirt!

This issue of Spectrum gives you updates on Kalydeco, the SVUH beds issue and lots of initiatives that are happening around the country. There has been significant progress in recent weeks that we can report on and of course we are monitoring the negotiations around new therapies and will keep you fully updated.

Kind regards, Philip Watt (CEO) Alica May (Editor)

Front Cover: Paige Brennan (PWCF, age 5) from Kilkenny at the launch of Beat CF in the South East Ă‘ see page 29).

DISCLAIMER: The views of contributors, when expressed in this publication, do not necessarily reflect the position or policy of Cystic Fibrosis Ireland.

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Jan/Feb 2013

Section 01:

LATEST NEWS : Page 2Ñ7

Events to Mark our 50th Year CF Ireland Annual Conference 2013 Update on Kalydeco Good Progress following Meetings on CF inpatient Rooms in SVUH The St Vincent's Patient Liaison Committee Budget 2013 Ñ Prescription Charge Increase Volunteer Ireland Award Winner --

Section 02:

GRANTS AND SUPPORTS : Page 8Ñ10 Exercise Grant Scheme 2013 Ñ Round 1 Opens 31st January Thinking of College Next Year?

CF Ireland Publications and Information Resources --

Section 03:

FEATURE ON CARERS : Page 11Ñ14

Support for Carers, By Vicky O'Byrne, The Carer's Assocaition Parent Profile, Featuring Kevin Doherty, Parent and Full-Time Carer of Three Children with CF --

Section 04:

SISTER INSIGHT : Page 15Ñ16

Sarah Kavanagh, age 8, who has a Big Brother with Cystic Fibrosis --

Section 05:

EVENT FOCUS : Page 17Ñ19

Marathon Mad for Cystic Fibrosis Ireland, 100 Marathon Challenge for Gerard Fay Brown University Orchestra to Donate Concert Profits to CF Challenge the Greenway in Aid of CF West --

Section 06:

FUNDRAISING : Page 20Ñ33

65 Roses Week National Awareness Week and 1 in 1000 Challenge and Events Overview Community Events Hospital Projects (Waterford and Beaumont) Corporate Fundraising and Thank You --

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Spectrum / Issue 31

LATEST NEWS

SECTION 01

PAGE 2Ă‘7

Events to mark our 50th year Get involved!

Cystic Fibrosis Ireland was formed in 1963 by a small group of parents with the support of the few doctors that were treating people with CF at the time. The first meeting was in a small lecture theatre in Crumlin Children's Hospital, which was itself only in its 5th year of existence.

To mark our 50th year there will be a number of events and initiatives and we welcome initiatives organised by branches during the year.

Invitation to our Remembrance and Thanksgiving Service, Saturday 23rd February The first major event to mark our 50th year is a remembrance and thanksgiving service in the Mary Immaculate Church in Rathmines on Saturday 23rd February at 11.45am, followed by a light lunch in a nearby hotel.

The service is open to all our members, friends and supporters Ă‘ feel free to invite guests along to what should be a memorable event. Music is being provided by the excellent Dublin Gospel Choir.

Book to Mark our 50th Year The inspiring story of CFI will be told in a book that will be launched in April of this year. The book will include insights into the most important events that shaped the story of the association and CF care in Ireland. It will feature the two people who could be described as the 'guiding lights' of CFI, Anne O'Dwyer, the first chairperson and Bridie Maguire, who was involved with the association for thirty years, both as a volunteer and then as the first CEO. Professor Muiris X Fitzgerald, the first CF adult consultant contributes a moving perspective that shows the work of CFI has always been about working closely with clinicians and their teams.

Photos of Branch Events for our Website As part of the project to mark our 50th year, we are inviting branches to send us photographs of events that have taken place over the years. We will be putting these on our website. If you want to send us a photograph of a fundraising event or a branch meeting or photos from our annual conference please send them to Suzie at info@cfireland.ie Please put the year (approximate) when the photo was taken, who is in the photograph if possible and where it was taken. Don't worry if you have only partial information, please send the photos in anyway!

50th Year Fundraising Drive CFI will also be launching a new fundraising drive to mark our 50th year. Despite all the progress in recent years, we still need urgent investment in many CF centres for both inpatient and outpatient /daycare facilities. The importance of research has been highlighted by the emergence of the ground-breaking drug Kalydeco. This drug would not have existed if our sister organisation in the United States, the Cystic Fibrosis Foundation, had not put US$75million to kick start research.

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Jan/Feb 2013

Irish clinicians and the three adult CF centres in Cork, Beaumont and SVUH were closely involved in the trials, as was the adult CF centre in Belfast City Hospital. CFI is funding important CF research in Cork University Hospital, University College Dublin and SVUH and we need further resources to continue this research.

Why not Organise an Event in your Area as part of 65 Roses National CF Awareness Week?

This year our 65 Roses National Awareness Week will run from Friday 12th until Friday 19th April.

The annual CFI conference begins on the 12th April (see below). Why not organise as event in your branch or in your workplace to mark the 50th year of the association, perhaps a fundraising event, perhaps an event to thank those who have been involved in the work of CFI over the past 50 years.

Annual Conference Ă‘ Date for your Diary The annual CFI conference, organised by the national office in partnership with the Eastern Branch, will be in the beautiful Killashee House Hotel in Naas, County Kildare on the 12, 13th and 14th of April. More details below.

CF Ireland Annual Conference 2013 12th-14th April in Kilashee House Hotel, Naas, Kildare

This year's CF Ireland Annual Conference will take place from 12th-14th April in Kilashee House Hotel, Naas, Kildare (www.killasheehouse.com). This is the 50th Anniversary year of CFI. As with previous years we are planning on having informative and interesting seminars that will be beneficial to all of our members as well as a sociable weekend for members to have a break and to catch up with friends. The conference will also include a focus on our 50th year as well as all the exciting developments in CF care in Ireland Ă‘ and the many challenges that remain.

All CFI members attending the conference can avail of a special hotel rate that will help make the weekend not only enjoyable, but affordable too! In order to avail of this special rate, all members must register their attendance directly with CF Ireland before booking with the hotel.

It is very important that all individuals attending the Conference are registered with us so we can comfortably cater for all.

Bookings for the Conference will be open in the upcoming weeks, when all members will receive booking forms and detailed agendas in the post; in the meantime if you have any more queries please contact Suzanne directly on 01 4962433 or email info@cfireland.ie The staff of CF Ireland look forward to seeing you at the conference!

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Update on Kalydeco From Philip Watt, CEO CFI

As you will know from significant recent coverage in the media, Cystic Fibrosis Ireland (CFI) has remained active in continuing to highlight the importance of Kalydeco for our members with at least one copy of the G551D gene mutation.

In particular we would like to thank Katie Murphy, CFI/TLC4CF Regional Development Officer in Limerick and her brother Anthony, who featured on Prime Time. Katie was also on TV AM and undertook numerous radio and newspaper interviews. We have had good feedback from our members for our advocacy work and keeping people up to date on Kalydeco, and this is very much appreciated.

As we expected, the recent decision of the HSE/NCPE on Kalydeco on January 21st 2013 is to broadly recognise the benefits of this drug (while questioning some of the claims of the company as 'yet to be proven'), but also indicating the HSE/NCPE want to negotiate the best price possible as the price being sought by the drugs company is Û235,000 per patient per annum.

Why is Kalydeco so expensive?

There are a number of factors that influence the costs of drugs. These include; • The research and development (R&D) costs • The number of patients who can potentially benefit from the drug • The effectiveness of the drug • The need to make sufficient profit to be ploughed into further research • The overheads and profit margins of the drugs company Kalydeco is what is known as an 'orphan drug'. This is the technical term for a drug for which only a relatively small number of people can benefit from and usually relates to those with a rare disease. Worldwide, CF is usually classified as a rare disease. The unique feature about Ireland is that is the rate of CF is three times higher than the rest of the EU and the United States.

Furthermore, the proportion of people with the G551D CF gene mutation (the so called Celtic gene mutation) is higher in Ireland than anywhere else in the world. In short, Kalydeco is relatively more important in Ireland that anywhere else in the world.

How does Kalydeco work?

In people with the G551D mutation of CF aged 6 and older, Kalydeco helps improve the function of a defective protein, called CFTR. In people with this mutation, the defective protein moves to the right place at the surface of the cell but does not function correctly. Instead, it acts like a locked gate, preventing the proper flow of salt and fluids in and out of the cell.

Kalydeco helps unlock that gate and restore the function of the CFTR protein, allowing a proper flow of salt and fluids on the surface of the lungs. This helps to thin the thick, sticky mucus caused

by CF that builds up in the lungs.

Kalydeco marks a breakthrough in CF treatment because it is the first drug to address the underlying cause of cystic fibrosis.

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Jan/Feb 2013

Ireland played an important role in the development of Kalydeco As many as 20 PWCF in Ireland may have been involved in the clinical trials for Kalydeco.

Furthermore, the CF adult centres in Cork, Beaumont and SVUH were closely involved in the trails.

The CF centre in City Hospital, Belfast also played an important role throughout the development of Kalydeco.

What are the next steps?

The NCPE are entering into negotiations on the price of Kalydeco and to explore the possibility of a 'shared risk' programme, whereby the drugs company Vertex would only be reimbursed for PWCF who clearly benefit from this drug. We understand that it is anticipated that these negotiations will be concluded in weeks rather than months.

Cystic Fibrosis Ireland has urged these negotiations be concluded as efficiently as possible and that a fair price is agreed. CFI will continue to inform our members of further developments, including the trials of drugs that focus on the more common Delta 508 Gene alteration and other innovative CF therapies being developed by a range of pharmaceutical companies.

Good progress following meetings on CF inpatient rooms in SVUH CFI Continue to Monitor Progress

Cystic Fibrosis Ireland (CFI), the HSE, CF Clinicans and the Hospital Management in St Vincent's University Hospital (SVUH) have made steady progress in recent weeks in resolving the problems faced by some people with CF not being able to access CF inpatient rooms in SVUH in November last year. This was contrary to an agreement signed by all parties in July 2012 which provides for up to 34 inpatient rooms when needed.

Three high level meetings have taken place since the problems first arose and the hospital management have now put in place revised procedures to ensure that similar problems do not arise in future.

CFI can confirm that all PWCF who needed to be admitted since the problem first arose last year have been able to gain admission. The highest number of PWCF in SVUH over recent weeks has been 33, which confirms that the full complement of rooms are needed, especially during the winter months. A new 'escalation policy' has been put in place and two rooms in the new Nutley Wing will always be kept free for emergency CF addmissions.

As part of the new procedures, high level meetings between the management and clinicians and CFI will be held on a quarterly basis.

We will of course continue to monitor progress in implementing these new procedures closely and we would be grateful if you would continue to contact us if you experience problems related to the admissions in SVUH. Philip Watt and Patricia Duffy-Barber (secretary of CFI and PWCF) have attended the meetings on behalf of CFI, with thanks to the continuing support and advice from the Board of the CFI, chaired

by John Coleman. Thanks also to the many advocates, especially Orla Tinsley and Jillian McNulty, who have contributed to the public awareness about this issue and to Tom‡s Thompson for all his continuing work in liaising with SVUH through the patient liaison committee.

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The St Vincent's Patient Liaison Committee

By Tom s Thompson, CF Advocate

St. Vincent's University Hospital (SVUH) is the National Adult Referral Centre for People with Cystic Fibrosis. The Hospital, in conjunction with PWCF and Cystic Fibrosis Ireland, set up the patient liaison committee (PLC) Ñ the first committee meeting took place on the 17th of July 2006.

The committee is now seven years in existence and has achieved a number of quality improvement initiatives during this time related to day to day issues in the hospital.

The group meet on a quarterly basis and agenda items are forwarded to the Assistant Director of Nursing in advance of meetings. Participants on the committee include Director of Nursing (chairperson), two patient representatives who are PWCF, members of the multidisciplinary team, Assistant Director of Nursing with responsibilities for cystic fibrosis and Assistant Director of nursing with responsibilities for Infection Prevention and Control. The terms of reference for the meetings is 'To assist in the communication of appropriate information between persons with cystic fibrosis and health care professionals in the provision of care and vice versa.'

Resulting from the PLC there has been a marked improvement in communication; the group facilitates discussion between hospital staff, patient representatives and PWCF who attend SVUH regarding service improvements requiring attention. The meetings are collaborative and discussions flow freely. All appropriate information is discussed and passed on to all relevant personnel within the hospital. The patient reps are PWCF who may attend in person or join via teleconference. The PLC has achieved a lot of improvements in the delivery of patient services since it was established seven years ago. The objective of this group is to continue to improve the patients experience and make their journey more pleasant when in hospital.

As we reflect on the last seven years, many of the issues raised were as a result of the overcrowding of the old wards and the lack of single rooms for PWCF. Now that we have new wards, which are of the highest standard, the work of the PLC will in the future focus on increasing the standards of care to the highest possible level to match the facilities in the new unit.

If you would like to contact the PLC you can email tthompson@cfireland.ie with any issues you would like the CF reps to raise at the PLC. If you don't attend St. Vincent's hospital and feel that there is a need for such a committee in another hospital in which you attend please contact CF House who will be happy to help.

Budget 2013 Ñ Prescription cHARGE iNCREASE We want your feedback

As a result of the recent budget, the prescription charge for Medical Card holders has increased from 50c per item to Û1.50 per item, up to a monthly limit of Û19.50 per family (increased from Û10).

CFI have received several calls from members in recent weeks expressing their concern with this increased rate, which has essentially tripled. The Disability Federation of Ireland, in conjunction with CFI, acknowledge that this will greatly impact on members in need of monthly medication and further increases the burden of those already trying to live with additional costs of disability.

Please contact us with your views on this and how you have been affected so that we are in the best position to advocate on your behalf. Email Alica on amay@cfireland.ie or call 01 4962433.

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Jan/Feb 2013

Volunteer Ireland Award winner Lorainne O'Neill Wins Award in the Campaigning and Awareness sector

At the 2012 Volunteer Ireland Awards Gala Event, in Dublin City Hall, Cavan mother, Lorainne O'Neill was the out-right winner in the Campaigning and Awareness sector.

"My nomination was recognition for everybody who has put so much effort into raising awareness and money for the need of CF facilities at our hospital", said Lorainne.

Lorraine is a self-employed businesswoman and the mother to four-year-old Mia O'Neill, who has Cystic Fibrosis. Since Lorraine's daughter was born in 2008 she has worked tirelessly fundraising for Cystic Fibrosis Cavan. Lorraine's aim was to raise Û60,000 to have a shared care centre at Cavan General Hospital for PWCF in the Cavan/Monaghan/Leitrim and Longford area.

Lorraine put this dream into reality in February 2012 when she began training for the Dublin City Marathon.

She formed the group 'Run DMC 4 CF' with 50 people who joined in support of the cause. In the lead up to the Marathon the group held events such as coffee mornings, quizzes, 5k and half marathon runs to raise money for CF Cavan. Lorraine not only set up the group, she attended the weekly runs and worked a full-time job.

Lorainne receives her Campaigning and Awareness award from the Lord Mayor of Dublin, Naoise ĂŽ MuirĂ­.

"Lorraine does not realise or accept how much she has achieved and only for her I would not have dreamed of completing a marathon or would not have made the friends I have. Lorraine has raised thousands of euro for the Cavan branch of Cystic Fibrosis and has brought huge awareness to the people of Cavan and surrounding counties", said a fellow marathon runner.

Promoting Good Health Messages Paulina Hanrahan on the Radiowaves

Further to our last issue of Spectrum, Paulina Hanrahan is still continuing to promote good health messages for the general public.

It is hoped that we can reduce the possibility of spreading colds, flus and other airborne transmittable disease/viruses for airline passengers as well as those at particular risk, including people with cystic fibrosis.

Radio adverts have recently featured on Radio Nova and Pat Kenny so keep an ear open and help spread the word!

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GRANTS & SUPPORTS

SECTION 02

PAGE 8 Ñ10

Exercise Grant Scheme 2013 Round 1 Opens 31st January

Background and Purpose of the Exercise Grant In order to alleviate the financial burden on individuals and families with CF, and to encourage and facilitate PWCF to increase their physical fitness, CFI initiated a pilot Exercise Grant Scheme in 2009. The purpose of this scheme was to provide financial assistance to PWCF for gym membership fees, purchasing home exercise equipment, fitness lessons etc. Due to the positive feedback received from the pilot scheme and the growing scientific evidence supporting physical fitness for PWCFs, CFI has continued to run this grant scheme and over 600 grants have since been awarded to members.

How much funding is available?

The maximum value of this grant is Û300 for PWCF over 16 years of age, and Û250 for PWCF under 16 years of age.

How do I apply?

An Exercise Grant Application form and a receipt or official quotation (to show what it is you have bought, or what it is you intend to buy) must be sent to the CFI National Office by a particular deadline.

What is the deadline for applications?

There will be two rounds for this scheme in 2013. The number of grants awarded for each call will be limited, and will depend on available funding within CFI. Round 1 opens 31st January. The deadline for submission of applications to Round 1 is Friday 8th March 2013. Details for the second call will be announced at the end of summer.

Where can you get more information about this call?

Log on to www.cfireland.ie and click on the 'Grants and Services' section. The applicaton forms and guidance notes are available for download under the 'Exercise Grant 2013' tab.

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

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Jan/Feb 2013

Thinking of College next year?

Disability Access Route to Education (DARE)

A reminder to all those PWCF sitting their Leaving Certificate Examinations this year Ñ Application procedures for students with a disability.

The Disability Access Route to Education (DARE) is an admissions scheme to improve access to college for school leavers with a disability. Under the scheme a number of third-level places are allocated on a reduced points basis to school leavers using the DARE scheme. To be eligible for the scheme you must provide evidence that your disability has affected your educational performance significantly Ñ see 'Supplementary Information Form' information below.

How the scheme works Each of the third-level colleges participating in the scheme has reserved a number of places on their courses for school leavers who are eligible for DARE. You can find details of the places available through DARE on the websites of the participating third-level colleges (www.accesscollege.ie).

You apply for DARE through the CAO. Once you have been accepted as eligible for DARE, you then compete for the reduced point places based on your Leaving Certificate results. A 'reduced point' place means that you may get a place on a third-level course with less than the full CAO points.

For example, if you are eligible for DARE and you get 430 Leaving Certificate points, you may be offered a place on a course that is 470 points through CAO. However, you must meet the college matriculation and any specific course entry requirements.

Whether you apply for college through DARE or through the standard CAO procedure, there is a range of supports for student with disabilities while they are at college. The supports available vary from college to college but may include: an orientation programme; study skills and extra tuition if required; access to assistive technology and training; mentoring.

Supplementary Information Form To be eligible for DARE you must provide additional information on the Supplementary Information Form. It has 4 sections as follows: • Section A is a personal statement in which you describe the impact your disability or specific learning disability has had on you.

• Section B is a second level academic reference which must be completed by your school and provides information about your educational experience and assists the decision the thirdlevel supports you need.

• Section C is an evidence of disability form which must be completed by the accepted medical consultant or specialist. This provides verification of your disability and helps the decision about the third-level supports that you need.

• Section D is where you state that you wish to be considered for DARE. If you wish to apply for a college place in 2014 under the DARE scheme you should apply online through the Central Applications Office (CAO) before 1 February 2013.

When you are filling in the CAO form you must complete the part of the form to say that you have a disability or specific learning disability. You will then be directed to a separate online Supplementary Information Form.

Your CAO application must be sent in by 1 February 2013 together with completed Sections A 9

Spectrum / Issue 31

and D of the Supplementary Information Form as described above. If you are unable to complete the online application form you can send in a completed paper application form. Section B Ñ the second level academic reference Ñ and Section C Ñ evidence of a disability Ñ must be sent in to the CAO by 1st April 2013. No applications will be accepted after the closing dates. The closing dates are very strict because DARE is an additional application procedure which needs extra processing time.

You will get a letter telling you whether you are eligible for the scheme. If you are told you are not eligible you can ask for your application to be reviewed. If you are not eligible for DARE you can still get into college if you meet the entry requirements for your chosen course.

The CAO helpline at (091) 509 800 can assist school leavers with their DARE application. You can find further information in this list of frequently asked questions on the Access College website.

You can also contact the access services of the colleges participating in the DARE scheme.

Many third-level colleges have a disability or access service which is responsible for giving support and advice to students with disabilities, and the organisation AHEAD (Association for Higher Education Access and Disability) is a voluntary organisation that promotes the participation of students with disabilities in third-level education.

The AHEAD website (www.ahead.ie) has a range of information about educational supports for students with disabilities at third level. It includes advice to students about how to deal with lectures and tutorials and how to use the library. There is information about admissions procedures, accommodation, student services and disability supports and services. The AHEAD website also provides names and addresses of associations that could be of assistance to students. CFI also has a Guide to 3rd level education available www.cfireland.ie Best of luck to you all!

cf iRELAND pUBLICATIONS We Welcome Your Input

CF Ireland is actively working on updating our publications, particularly: • 'A Guide for Parents of Newly Diagnosed Children' booklet • 'Nutrition for your Baby' information sheet for the new parent pack • 'Entitlements for PWCF' booklet Aside form giving the publications a fresher look, we aim to get all content reviewed by healthcare professionals working in the relevant field.

To view our exisiting publication portfolio, please log on to www.cfireland.ie/index.php/ informationabooklets.

If you have any suggestions of topics you would like to see covered in future publications or information sheets, or are willing to share other resources you found useful, please contact Alica May on amay@cfireland.ie.

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Jan/Feb 2013

FEATURE ON CARERS SECTION 03

PAGE 11Ă‘14

SUPPORT FOR CARERS

By Vicky O'Byrne, The Carer's Assocaition

At any stage of life ordinary people can be visited by circumstances that require them to care at home for a relative, partner or friend. For reasons ranging from old age and fraility, diagnosis of chronic illness, an accident, or living with a physical or developmental disability. Over 161,000 people in Ireland give care at home every day to someone they love. Carers provide 3.5 million hours of care a week.

The Carers Association was founded in 1987, and is a national voluntary body and registered charity. Our mission is 'to provide family Carers with emotional and practical supports; to promote the interest of family Carers and those receiving care in the home through partnership, lobbying and advocacy, and to gain recognition and social justice for Carers' invaluable contribution to Irish society'.

We provide supports and services to Carers, including phone enquiries and visitors to the centre on welfare, health care, personal awareness and advocacy issues. We also hold monthly support group meetings, where Carers meet up and talk to each other, as well as gain information and advice.

Each month there is a different facilitator, ranging from mental health and stress management, to more relaxing sessions like reiki. The meetings provide a couple of hours of respite for Carers, and it is a chance to talk to others and provide emotional support, or even a laugh.

We also provide in-home respite services for families in need, through self-referrals, or referrals done by Public Health Nurses and Social Workers. This service is carried out by fully trained and monitored staff, to ensure a high quality of care is given to each person.

Our centre is also a resource for dropping in for a cup of tea and a chat or just some advice.

For more information contact the Carer's Association: Tel: 1800 24 07 24 Fax: 057 9323623 Email: info@carersireland.com Web: www.carersireland.com

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pARENT pROFILE

By Kevin Doherty, Parent and Full-Time Carer of Three Children with CF

My name is Kevin and, with my wife Claire, I care for our three children with CF Ñ 14 year old identical twins, Ciaran and Joe, and two-year old Harry. Ciaran and Joe were almost eight when they were diagnosed in 2006. As babies, the boys failed to thrive and were very sickly Ñ they underwent numerous tests from a very early age as they suffered from diarrhoea from birth and numerous chest infections from five onwards. As nothing was found in the tests, we were always told that it was common for twins to be small and that there was nothing seriously wrong.

In 2006 we took Joe to our GP when his weight plummeted after another chest infection and we expressed our concerns that there was something seriously wrong. He was referred urgently to the consultant in Letterkenny once again. We met with a different Registrar that day and she asked many questions. I vividly remember her examining Joe's fingers (for signs of clubbing, we now realise) before she asked if he had ever been tested for cystic fibrosis. We said that we didn't know, but thought they had been tested for everything at that stage. A sweat test was arranged and the positive test result came through the following week. As they were identical twins, and Ciaran also had symptoms, a sweat test confirmed his diagnosis soon after. Knowing what we do now about CF it amazes us that they weren't diagnosed sooner as they had so many symptoms.

We are still incredibly sad and angry that they suffered needlessly for so long.

Ciaran and Joe had always had behavioural problems and difficulties with their social skills and after a number of investigations they were diagnosed with Asperger's Syndrome and ADHD Ñ their diagnosis came a month after they were diagnosed with CF. It was an incredibly difficult time for all of us, coming to terms with everything that was going on.

They are over-anxious about so many things so we have to keep things fairly low key so that they don't get stressed. The boys have a major needle phobia which we are still working on, but vaccinations and blood tests are incredibly difficult and upsetting for all involved.

Ciaran, Joe & Harry having fun on their gokarts.

"I would advise any person who has recently become a Carer to make sure that they have an interest or activity that gives them a break from their normal day-to-day life and helps them to escape from the stress and worry of looking after someone on a full-time basis."

Kevin with Joe, Harry & Ciaran enjoying a summer's day on the beach in Donegal.

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Jan/Feb 2013

Prior to this, we were both working full-time, however a few months before their diagnosis Claire decided to try working part-time so that she could be with the boys after school as they wouldn't eat well outside home. After they were diagnosed, ongoing problems at school and trying to juggle work alongside the boys being unwell meant that we had to reconsider our working arrangements again. We both tried various part-time working arrangements for a period but it soon became apparent that full-time care was needed at home.

Joe, Claire & Ciaran having a cuddle.

Claire returned to work full-time and I gave up my job as Claire's job allowed more flexibility to attend appointments etc but it was very difficult and a massive lifestyle change. I had always worked prior to this and initially it was very hard to adapt to my new circumstances. Not only was I getting used to the fact that I was at home all day, but I was adapting to all the changes involved in the boys' treatments. The thing I missed most was the company and banter at work Ă‘ suddenly I went from being in a busy office surrounded by people to being alone in the house most of the day. I decided early on to approach my role as a Carer as a job in itself and structured my day around a set routine whereby I organised the boys first with regards to their physio, nebulisers etc and getting them ready for school before setting about the housework. The boys had always wanted a dog and as I was around now during the day we were able to go ahead. Our lovely dog, Coco, gave me a great incentive to get out walking and I was regularly walking for miles each day. I find it very important to get out every day for a walk or a run as it can be a great release and I can't stress enough the benefits of exercise for making you feel good. I would advise any person who has recently become a Carer to make sure that they have an interest or activity that gives them a break from their normal day-to-day life and helps them to escape from the stress and worry of looking after someone on a full-time basis.

I am in receipt of Carer's Allowance, without which we would struggle enormously. Having always been in receipt of a wage it was extremely important to me to receive a payment each week as it does feel as if I'm contributing to the household budget and providing for my family. We felt very angry and insulted by the recent cuts to the Respite Care Grant and other carers' benefits as carers are the one group of people who save the Government millions with the work we do and we are so completely dedicated to our families. Carers provide so much more than physical care, there is a huge emotional responsibility also. Our Respite Care Grant has rarely been used towards a break and, like many carers, we don't travel too far in case the children get ill. With the boys having Asperger's, travel is incredibly difficult as they don't like a change in routine and they like to be in their own environment with familiar things around them. The payment has been used to cover day to day expenses such as school uniforms, school books, trips to Crumlin, heating oil, car maintenance, home repairs etc. Given what the carers in this country provide to so many it is beyond comprehension that any payment would be cut.

Being on the autistic spectrum, the boys' behaviour can be challenging, although as they mature it has become easier to reason with them. They are incredibly bright but do not appreciate the seriousness of having CF. They see it as a great inconvenience and it is very difficult to get them to co-operate with physio, for instance, as their attention span is so short. We have to come up with some novel ways to get them to exercise as they are not into sport or team games at all Ă‘ their favourite run-about activity at the moment is playing tag on the beach and it is a great way to get us all running around. They have recently re-ignited their interest in cycling which is great as it is so good for them and we love to see them coming in from a cycle with rosy cheeks!

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Our little man, Harry, was born in August 2010 and was diagnosed with CF at 1 week old. We had hoped the odds would be in his favour and it was hard to come to terms with his diagnosis at the time. His treatment started very soon after he was diagnosed and he thrived from the start and was a very heavy baby indeed! It is hard to believe that he has CF as he continues to exceed all expectations growth-wise. It really is incredible the difference an early diagnosis has made to his well-being and he has developed remarkably well. Whilst we are so grateful that his treatment is going so well, it is difficult not to feel sad that Ciaran and Joe didnt have the same opportunities to thrive. When Ciaran and Joe were a year old they weighed less than 18 lbs; Harry was 26 lb at the same age! It is welcomed that all babies born in Ireland are now screened for CF. We are immensely proud of our three boys. They are incredibly loving and affectionate and bring so much joy into our lives.

Having three children with CF we have to be incredibly organised and life is very busy. We travel to Crumlin about five times a year for clinic/annual assessment and where we can we make the trip up and down in one day Ă‘ the journey time each way is 5 hours. It is stressful, but preferable, to an overnight stay which is expensive and involves packing up half the house before we can leave!

Whilst we appreciate that the expertise is based in Dublin and we are grateful for the support from the CF team in Our Lady's, it is very difficult being so far away. We have a wonderful Link Nurse in Letterkenny which has been a tremendous help to us, but we do feel as though the North West has been forgotten and neglected.

We are immensely proud of our three boys. They are incredibly loving and affectionate and bring so much joy into our lives. Given all that Ciaran and Joe have going on, along with CF, they are doing extremely well and we are so proud of them and their achievements. They are progressing very well in mainstream school and are growing into lovely young men. Harry is the bounciest, happiest little child and brings a smile to everyone's face. There is never a quiet or dull day in our house!!

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SISTER INSIGHT

SECTION 04

PAGE 15Ñ16

Battle with Cystic Fibrosis

By Sarah Kavanagh, who has a Big Brother with Cystic Fibrosis

Sarah is eight years old and is in 3rd class in St.Patrick's National School in Bray. Several National Schools in her area and further afield are involved in the 'Write A Book Project' (writeabook.ie).

This is a competition whereby a child picks a subject and writes about it in English or Irish.The children write the stories in school over a few weeks and then the finished stories are submitted by the teachers into the competition with the other schools.

This is Sarah's story about her brother Se n, aged 14, who has Cystic Fibrosis.

Sarah Kavanagh wrote her story, 'Battle with Cystic Fibrosis' about her brother Se n, who has CF.

Years 1 Ñ 4 This story began in 1998 in Holles Street Hospital, Dublin when my brother Se n was born. He has blonde hair and blue eyes and weighed nine pounds eight ounces and my parents Joseph and Sandra thought that everything was ok. My Mammy has brown hair and green eyes and my Daddy has black frizzy hair and blue as the sea eyes, they are the best parents ever. He had a swollen tummy so was put into Intensive Care. When he was 2 weeks old my parents were told he had Cystic Fibrosis.

Cystic fibrosis is a disease that causes the lungs to be clogged up with mucous. It is common in Ireland and it is created by two carriers of it. In those days they could tell if you had CF by a salty taste from your skin. He was in hospital for 6 weeks and when he got home he was always getting sick after his bottles. He was in hospital every week until he was 1 to check his weight. When he was 2 he played the guitar with my Grandad Dado. My Grandad has grey hair and a moustache. He is lots of fun. He is an Elvis fan. He played a real guitar with Se n who had a pretend guitar. All Se n would say is 'Can we play again Dado!'. Se n is 3, still sick and loving Elvis. He started in playschool and at his school play he did an Irish dance and sang the Bob the Builder theme song. He is great fun.

Years 5 Ñ 8 Se n is now 5 and has started Big School. At Christmas he was very sick in hospital and I was in my mammy's tummy. He got out of hospital 2 days before Christmas. On Christmas morning he did not come down to see his Santa presents until 12 o'clock; my parents told my family that he is not going to be that happy because he is sick. When he went back to school after Christmas he cried and cried and his teacher Miss Freeman told my Daddy to leave Se n in the classroom and after 5 minutes he was not crying anymore. Miss Freeman has dark brown hair and blue eyes. She is really nice and a great teacher.

On the 16th March I was born. I had lots of black hair and blue eyes, Se n's whole life changed.

We played and had fun, Se n loved me. He loved giving me kisses and hugs. We had fights as well but that's always what brothers and sisters do.

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It is Halloween 2005, Se n dressed up as a monster I dressed up as a mouse. I am 2 and Se n is 7. It is Christmas again. Se n got a present wrapped in blue paper and I got one in pink wrapping paper. I looked at what Se n got first. He got a Ninja Turtle Annual and I got an Angelina Ballerina one from my parents. We got presents from Santa too. Se n is mostly healthy, he has to take enzymes which help him absorb food and put on weight and he takes lots of vitamins and has to do physiotherapy to help his lungs.

Years 9 Ñ 12 On Se n's 10th birthday he cycled to Cork with my daddy on a tandem bike. It took them 4 days and they raised Û35,000 which helped to pay for the new CF Unit in Crumlin Hospital. He won a prize on Newstalk Radio because of the cycle, it was a holiday. We went to Madeira which is beside Portugal for a week. We went swimming and played table tennis it was a lot of fun. When it was time to go home the plane was wobbling and we could not go so the next morning we went home when the plane was fixed. He also met President Mary McAleese who presented him with an award and they posed for photos and we went home very happy.

Sandra, with Se n and Sarah.

Years 13 Ñ Now When Se n was 13 he got an infection called Staph. He had lots of infections and has been in hospital 3 times this year, he is in hospital at the moment. He is having I.V. antibiotics which will make him better. He was put under anaesthetic and they put a Picc Line in his arm for the antibiotics. He is as narky as ever! He has a crush on a girl called Ruby she has blonde hair, blue eyes and a few freckles. He likes her for her lovely personality and looks. He has two best friends, Ben and Conor. Ben has brown hair and brown eyes, Conor has blonde hair and blue eyes. Se n plays rugby and loves it. His battle with CF continues. Note: never give up on yourself and stay strong.

By Sarah Kavanagh.

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EVENT FOCUS

SECTION 05

PAGE 17Ñ19

Marathon Mad for Cystic Fibrosis Ireland 100 Marathon Challenge for Gerard Fay

Bettystown man, Gerard Fay is about to undertake what he considers his biggest challenge to date and all in aid of Cystic Fibrosis Ireland. The challenge will consist of completing 25 marathons over a period of 10 months and also a 50 mile run from Drogheda to Naas in April and a 65 mile run from Cavan to Drogheda later in the year. All funds raised will be used for equipment in the CF daycare facility in Our Lady of Lourdes Hospital, Drogheda and also for equipment in the other CF facilities throughout the country.

Gerard is no stranger to marathons and has completed 75 to date Ñ he has set the Dublin Marathon in 2013 to reach the milestone of his 100th marathon. He has also done numerous walks up and down the country all with the same idea, to raise awareness of Cystic Fibrosis and to fundraise for those who need better facilities and services.

Gerard, who is Chairman of the North Eastern branch of Cystic Fibrosis Ireland, achieved the first part of his goal by handing over Û100,000 from his fundraising efforts and he has now set himself a target to personally raise Û50,000 for CFI before October 2013, when he plans to compete the 100th Marathon.

The marathons this year will all be in Ireland.

Gerard Fay plans to complete his 100th marathon this year in aid of CF!

Speaking about his fundraising Gerard said "When I stated doing these marathons in 1998 there was only two marathons in Ireland in Dublin and Belfast. Now there is one in most counties and some even have two or three. The walk to Naas came about as CF Ireland is celebrating 50 years this year and it seemed appropriate to do 50 miles for 50 years in memory of all those who have lost their lives to CF, but also as a celebration of the advances in treatments for those with CF and hopefully if I achieve my goals the fundraising can be used to improve their treatments and facilities even more."

Gerard would also like to thank those who have helped in this project, in particular, his family, the members of Drogheda and District AC and Boyne AC, The Marathon Club of Ireland and Bootcamp Ireland. Without the training and encouragement I have received from these I would never have achieved what I have and would never have kept going. However, the biggest motivations for this challenge are those with Cystic Fibrosis. They are the real heroes.

To find out more on how to get involved, or to donate, contact Gerard on 087 2398881 or visit www.mycharity.ie/event/marathon_mad_for_cf. Or his website www.seeoffcf.com

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BROWN UNIVERSITY ORCHESTRA to donate concert profits to CF Monday, March 25th, National Concert Hall, Dublin 8pm

Brown University, a prestigious Ivy-League university located in Providence, Rhode Island will bring its award-winning orchestra to Ireland for the first time this March under the direction of Paul Philips. The award winning troupe of musicians will begin their tour on Monday, March 25th at the prestigious National Concert Hall, Dublin and then continue the UCH Limerick and Wexford Opera House later in the week. Cystic Fibrosis Ireland was chosen by The Brown University Orchestra to receive the proceeds of their Dublin concert, as their tour is self-financing and they wanted to 'give back' to the community.

Members and friends of CF Ireland are promised a night of delight, with the Brown Orchestra founded in 1918, recognised as one of the finest university orchestras in the US. With a membership of approximately 100 students, The Brown University Orchestra has performed in Carnegie Hall and the Lincoln Centre to name a few.

In a programme entitled 'An American Celebration of Music', the orchestra will perform a mixture of pleasing repertoire including Gershwin, Barber and Bernstein, amongst other gems.

Tickets for the National Concert Hall, Dublin are Û20/Û15; please quote 'CYFIB25' for a further 20% discount for our friends and members. It will be a wonderful evening for all ages. The more tickets that are sold, the more CF Ireland will benefit!

Further details and tickets can be obtained from the National Concert Hall's website www.nch.ie

Music Celebrations International Concert Tours With Integrity

The National Concert Hall

An American Celebration of Music Monday 25th March, 8pm

Brown University Orchestra

Paul Phillips, Music Director and Conductor Providence, Rhode Island, USA

Rimsky-Korsakov | Russian Easter Overture Gershwin | An American in Paris Barber | Adagio for Strings Abels | Global Warming Perry | “Dublin: Celtic Air and Runaway Reel” from Gemini Concerto Bernstein | Symphonic Dances from West Side Story

Tickets:

All Seats € 15 | Concessions € 10 | Family Ticket € 35 20% Discount for Friends of the National Concert Hall

National Concert Hall Box Office Tel: 01 417 00 00 or www.nch.ie (No Booking Fees)

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FUNDRAISING

SECTION 06

PAGE 20Ă‘33

As Christmas 2012 fades into the distant past, another New Year begins. With more positive economic predictions for 2013, join with us in making this, our 50th Anniversary year, a year to remember in fundraising terms.

We have a variety of events planned already, but we need to constantly innovate to organise more events to provide income to finance the broad range of services for the Cystic Fibrosis community in Ireland.

Take part in exciting events and activities to help us raise awareness of Cystic Fibrosis and to raise much need funds for services and facilities for the benefit of our CF Community.

If you would like to organise your own event please contact the Fundraising Department on LoCall: 1890 311 211 or email: fundraising@cfireland.ie

Wedding Favours Getting married in 2013?

Make your wedding favours truly memorable by donating to Cystic Fibrosis. Donating in this way is a unique way of thanking your guests for celebrating your wedding. It is the perfect finishing touch to your big day and is a more meaningful gift than traditional wedding favours. In return we can provide you with one card per table.

To order Wedding Favours please log onto www.cfireland.ie or email fundraising@cfireland.ie or call 1890 311 211.

Recycling for CF Mobile Phones (all models), Apple iPads and iPods

Did you receive a new phone or iPod for Christmas and would like to recycle your old one?

Through our partnership with the recycling experts at Fonebank, CFI could earn around Û5 for every mobile phone or iPod donated on our behalf. Full details under the Fundraising section on our website www.cfirleand.ie or for queries please contact the CFI. Fundraising team can be contacted at LoCall 1890 311211 or email fundraising@cfireland.ie

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Jan/Feb 2013

65 Roses National Awareness Week 50th Anniversary Fundraising Drive, 12th-19th April 2013

65 Roses National Awareness Week 12th-19th April 2013 Get Involved Today!

More Details to Follow...

Email: fundraising@cfireland.ie Locall:being 1890 311211 Imagine aware of every breath

1963 Ă‘ 2013: Help us celebrate our past, by supporting our future.

Cystic Fibrosis Ireland is celebrating its 50th Anniversary this year and we need your help to make sure it is the most successful!

Over the last 50 years, CFI has strongly advocated for the improvement of services and support for people with Cystic Fibrosis. Many improvements have happened thanks to the trojan efforts of all those who have been involved in the association and the dedicated work of clinicians and their teams, and we now need to build on these achievements through our 50th Anniversary Fundraising Drive.

Why 65 Roses?

'65 Roses' is how some children first learn how to say 'Cystic Fibrosis'.

The symbol in Ireland for '65 Roses Week' is purple roses. Funding is collected at both a national and local level by branches and will help fund both the work of the national office in its fight for adequate services nationally and locallly.

The success of our work and the support the CF community needs is up to you.

Dedicated inpatient and outpatient facilities around the country Funding is required for vital isolation beds and new treatment centres such as Dublin, Cavan, Drogheda, Castlebar, Limerick and Waterford. This will mean that people with CF will have centres with adequate facilities to avoid cross infection when they attend hospital. These services are not an option for better health, they are essential, and they are needed now. Our goal is to provide these facilities in the shortest timeframe possible.

Grants and Support Services Funding is paramount to our grant in-aid service, which provides financial help and access to vital services: Exercise, Fertility, Transplant, Bereavement, and Social & Distress grants are only but a few of the financial supports provided.

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What will be happening during 65 Roses Week?

Date Event Friday 12th April Launch of 65 Roses National Awareness Week at our Annual Conference in Kilashee House, Kilcullen Road, Naas, Co. Kildare Friday 12th April Ñ CFI Annual Conference and AGM Sunday 14th April Friday 12th April Ñ Selling of 65 Roses Emblems throughout the Country. National Friday 19th April Awareness Week Events organised locally Friday 19th April 65 Roses National Awareness Week Flag Day How will CFI National Office support fundraising?

The National office will undertake the following: • Distribution of our 65 Roses Emblems • Organise volunteers in shopping centers during the awareness week, more specifically on Friday April 19th • Countrywide support. We are here to help you help us!

How can branches get involved?

• Co-ordination of volunteers and local centres • By organising to sell emblems during 65 Roses National Awareness Week • By organising other fundraising and awareness initiatives in and around the week of the 12th19th of April What can you do?

Join our quest to raise awareness for Cystic Fibrosis: • Organise your 65 Roses event, we will provide the support you need in return for your time and effort to mark our 50th Anniversary Celebrations • Volunteer and join our fundraisers in your local shopping centre • Support our 50th Anniversary Drive. Pledge the amount you can afford by visiting our website and donating towards it. A range of pledges area available from Û20 to Û1,000. If you want to celebrate our 50th Anniversary, but you can't support our 65 Roses National Awareness Week, get in touch and we will support you whenever you decide the time is right!

Please get in touch to order your pack or let us know if you want to support Cystic Fibrosis. Contact Martin or Eufemia at 01 4962433 or email us at fundraising@cfireland.ie, mcahill@cfireland.ie, esolinas@cfireland.ie

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Jan/Feb 2013

Shopping Centre Location Carlow Shopping Centre Fairgreen Shopping Centre Sky Court Shopping Centre Desmac Bandon Shopping Centre Carrigaline Shopping Centre Ballincollig Shopping Centre Blackpool Shopping Centre Douglas Court Shopping Centre Paul Street Shopping Centre Wilton Shopping Centre North Main Street Shopping Centre Douglas Village Shopping Centre Merchants Quay Shopping Centre Courtyard Shopping Centre

Address Kennedy Avenue Barrack Street Shannon Bandon

County Carlow Carlow Clare Cork

Date Available 19th April 19th April 2013 16th Ă‘ 17th April 2013 12th Ă‘ 13th April 2013

Main Street, Carrigaline Main Street, Ballincollig Blackpool Douglas Paul Street Sarsfield Road, Wilton North Main Street

Cork Cork Cork Cork Cork Cork Cork

19th April 2013 19th April 2013 19th April 2013 19th April 2013 19th April 2013 20th April 2013 19th April 2013

Douglas Village

Cork

19th April 2013

1/5 Patrick Street

Cork

19th April 2013

Donegal

19th April 2013

Donegal Galway Kerry Kildare Kildare Kilkenny

19th April 2013 19th April 2013 19th April 2013 19th April 2013 19 April 2013 19th April 2013

Kilkenny

19th April 2013

Limerick

19th April 2013

Louth Louth Meath Tipperary

19th April 2013 14th September 2013 20th April 2013 19th April 2013

Tipperary Westmeath Westmeath

19th April 2013 19th April 2013 19th April 2013

Wicklow

19th April 2013

Lower Main Street, Letterkenny Letterkenny Shopping Centre Port Road, Letterkenny Westside Shopping Centre Quirke Road, Newcastle Killarney Outlet Centre Fair Hill, Killarney Manor Mills Shopping Centre, Maynooth WhiteWater Shopping Centre Main Street, Newbridge MacDonagh Junction Shopping MacDonagh Junction Centre EuroSpar Fairhouse Newpark Shopping Supermarket Centre Watchhouse Cross Shopping 2 Watchhouse Cross Centre Drogheda Town Centre Limited West Street, Drogheda Scotch Hall Shopping Centre New Road, Drogheda Navan Shopping Centre Kennedy Road, Navan Thurles Shopping Centre Slievenamon Road, Thurles Roscrea Shopping Centre Castle Street, Roscrea Buckley's Supervalue Mullingar Harbour Place Shopping Centre Harbour Street, Mullingar Bridgewater Centre North Quay, Arklow

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Shopping Centre Location Ashleaf Shopping Centre Nutgrove Shopping Centre Management Blanchardstown Centre Dundrum Town Centre Northside Shopping Centre Royal Hibernian Way Shopping Centre St Stephens Green Shopping Centre Liffey Valley Shopping Centre

Address Cromwellsfort Road, Crumlin Nutgrove Avenue, Rathfarnham Blanchardstown Sandyford Road, Dundrum Oscar Traynor Road, Coolock Dawson Street

County Dublin 12

Date Available 19 April 2013

Dublin 14

19th & 20th April 2013

Dublin 15 Dublin 16

19 April 2013 19th April 2013

Dublin 17

19 April 2013

Dublin 2

19th April 2013

St Stephens Green West

Dublin 2

19th April 2013

Dublin 22

19th April 2013

Dublin 24 Dublin 24

6th April 2013 19th April 2013

Dublin 5 Dublin 6 Dublin 7 Dublin 7 Dublin 9 Dublin 17 Dublin Dublin Dublin

30th March 2013 19th April 2013 19th April 2013 19th April 2013 19th April 2013 19th April 2013 19th April 2013 19th April 2013 19th April 2013

Dublin

19th April 2013

Dublin Kilkenny Limerick Limerick Limerick Limerick Monaghan Waterford Waterford Wexford

19th & 20th April 2013 19th April 2013 19 April 2013 19th - 20th April 2013 19th April 2013 19th April 2013 19th April 2013 19th April 2013 19 April 2013 19th April 2013

Font Hill Road, Clondalkin The Square Town Centre Tallaght Citywest Shopping Centre Citywest Business Campus, Fortunestown Artane Shopping Centre Artane Castle Swan Shopping Centre Lower Rathmines Road Phibsboro Shopping Centre Phibsborough Road The Park Shopping Centre 44 Prussia Street Omni Park Shopping Centre Omni Park, Santry Clare Hall Shopping Centre Malahide Road Millfield Shopping Centre Naul Road, Balbriggan Blackrock Shopping Centre Frascati Road, Blackrock Bloomfield Shopping Centre Lower Georges Street, Dun Laoghaire Stillorgan Shopping Centre Lower Kilmacud Road, Stillorgan Superquinn Shopping Centre Newcastle Road, Lucan High Street Mall High Street Arthurs Quay Centre Arthurs Quay Crescent Shopping Centre Dooradoyle Parkway Shopping Centre Dublin Road Castletroy Shopping Centre Castletroy Monaghan Shopping Centre Dawson Street Georges Court Shopping Centre Georges Street City Square Shopping Centre City Square Gorey Shopping Centre

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Jan/Feb 2013

Flora Women's Mini-Marathon June 3rd 2013

Blaze a Trail for Cystic Fibrosis as part of the One in 1000 Team It's that time of year again ladies, time to dust off the runners and for this year's Flora Women's Mini-Marathon (FWMM). Here at Cystic Fibrosis Ireland (CFI), our goal is to recruit 1000 + women to take part in one of our biggest fundraising initiatives on June 3rd 2013.

Over the past 3 years, CFI has raised a whopping Û500,000 for people with Cystic Fibrosis (CF) in Ireland through women's participation in the FWMM. These funds have allowed CFI to fund a new state of the art 4 bed ward for children in Crumlin Hospital, to provide support and services for people with CF and to fund new and additional isolation beds and treatment unit.

To participate, follow these two easy steps: Entries for 2013 FWMM open on February 18th and close April 24th 1. Register for the FWMM at www. florawomensminimarathon.ie or find the official entry form in the Evening Herald every Monday and Saturday when entries open on February 18th.

Don't be disappointed, please register as soon as possible on or after this date as the mini-marathon fills up fast.

2. Email details of your confirmation/race registration number to runningforcf@cfireland.ie or call 1890 311211.

You will be provided with a t-shirt, sponsorship card and details about race day.

Blaze a Trail for Cystic Fibrosis as part of the One in 1000 Team.

We welcome individual runners, and teams of any number, maybe you could ask your mother, your friend, your colleague, sister, daughter...it's a great way to get active and work towards something empowering for yourself, your team and for those living with CF in Ireland.

One in 1000 is about bringing women together for a great cause, raising awareness, giving support and achieving a goal, whilst helping children and adults with CF. For more information contact Ciara at runningforcf@cfireland.ie or LoCall 1890 311 211.

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Challenges & Events Overview Below

New York City Marathon Ñ 3rd November 2013 Places will soon become available for the New York City Marathon 2013. If you would like to get involved please contact us at 01 4962433 or email Eufemia at esolinas@cfireland.ie or Martin at mcahill@cfireland.ie London Marathon 2013 Ñ 21st April 2013 We have managed to secure few places for the biggest marathon in Europe: the London Marathon is a must for all the marathon lovers. All entries are available as part of a full tour package only, which includes: flights from selected airport all taxes, fees, charges and checked-in baggage, 2 nights twin/sharing with full buffet breakfast including VAT and service charges, guaranteed race entry, including official marathon programme, buffet dinner at hotel restaurant on Saturday evening, coach transfer to race start from the hotel, and travel insurance.

Fundraising target is Û2,000.

Places are limited and will be available for a short time only, so if the London Marathon will be part of your New Year's resolution, better call Martin or Eufemia to secure your place before it is too late.

Paddy Kieran's Memorial International Walk Ñ 5th-12th October 2013, Tuscany, Italy Once again, we are delighted to introduce you to our National Fundraising Walk, which will take place in Tuscany, Italy.

The walk which is an annual event will raise much needed funds towards research and support services for people with Cystic Fibrosis and their families. We again endeavour to maintain the excellent work of Paddy, a founding member of the walk committee.

Italian sunshine, beautiful sceneries and amazing food are only some of the rewards for all your fundraising efforts. The walk will take place from October 5th to 12th and includes return flights, transfer, dinners and accommodation bed and breakfast on a sharing room basis. Further details in the enclosed brochure.

Places are limited and are available on a first come, first served basis. If interested, contact Eufemia at 01 4962433 or email esolinas@cfireland.ie.

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Jan/Feb 2013

Run A Muck Challenge Ñ Saturday 9th March WHAT? Ireland's Original and most popular off-road fun and run challenge for joggers and runners of all abilities Ñ 1 lap (~5k) and 2 lap (~10k) options.

WHERE? In grounds of Clonkeeran House, near Johnstown Bridge, Co Kildare (just off N4 approx 25 mins drive from Jct 7 of M50) WHEN? Next Challenge is Sat 9th March 2013 Ñ first wave starts at 11am WHY? A fun challenge for all HOW TO REGISTER? Log onto www.runamuckchallenge.com To be part of Ireland's most popular off-road fun race. For a fundraising pack call 01 4962433 or email Martin on mcahill@cfireland.ie or Rosie on rbegley@cfireland.ie.

Great Ireland Run Ñ Sunday 14th April Join Ireland's leading running event. For sponsorship pack contact us at 01 4962433 or email Rosie at rbegley@cfireland.ie or Martin at mcahill@cfireland.ie.

To register, log onto www.greatirelandrun.org.

Skydive for Cystic Fibrosis Are you up for a challenge in 2013? Would you like your company to get involved in a group jump?

How about 5,000 feet!

The first thing to do is contact The Irish Parachute Club and express your interest in taking part in a charity skydive: The Irish Parachute Club, Clonbullogue Airfield, Edenderry, Co Offaly. t: 1850 260 600 w: www.skydive.ie Once you have received the information from the Parachute Club, please contact Rosie at 01 4962433 or email rbegley@cfireland.ie to receive your Fundraising pack.

Trafalgar Square to Puck Fair Cycle Ñ August Fancy joining Ray Crowley and his cycle team from London to Kerry? Or join in for a day or two?

A fully equipped support vehicle will accompany you throughout. For more details contact Ray Crowley email: crowleyray@gmail.com

Community Events Overview Below

Over 35 Football Match in aid of CF Come along and support Cloughan Celtic vs Rossan Rovers football match on February 23rd at 3.30pm, Kinnegad, Co. Westmeath. For more info contact Richie on 087 1241214.

Swim 1k for Cystic Fibrosis This is a great event for the swimming lovers. The event will take place in the 20m pool (= 50 lengths) of the Club Vitae of the Maldron Hotel, Portlaoise on February 23rd /24th and March 23rd /24th.

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Registration fee of Û20 per individual/Û40 per team. T-shirt and swimming caps will be given to each competitor. Light lunch will be also available after the event, generously sponsored by the Maldron Hotel.

For further info or registering contact Melissa at 085 7126419 or melissaduncan30@hotmail.com.

Tournafulla 5km Road Race in aid of TLC4CF On Sunday 31 March 2013, the inaugural Tournafulla 5km Road Race and Non-Competitive Walk will be held in the tranquil village of Tournafulla, in County Limerick, in aid of TLC4CF and the Limerick Dialysis Unit in Limerick Regional Hospital.

Entry fee is only Û10 for runners and Û5 for walkers, and all monies raised will be given to two worthy causes. Changing facilities, showers, free parking and light refreshments available. Walk starts at 12:30pm. Runners start at 1pm.

This new event is designed to suit all levels of athletes, from serious road runners to noncompetitive fun runners and walkers. Prizes will be awarded for 1st, 2nd and 3rd male and female overall and for 1st over 40 & 50 and 1st under 18. For more information or to register for the event visit www.tournafulla5k.ie or call TLC4CF (Katie) on 087 1954213.

Be Green Be Seen, North Dublin Macra Event North Dublin Macra want to welcome you to the annual fundraiser, 'Be Green Be Seen', which will be held at the Green Isle Hotel, Newlands Cross, Dublin 22, on Saturday the 16th of March 2013.

Dancing will commence at 8pm in true Macra style to the well-known band '2morrow's Party', finger food will be served around 11pm followed

by DJ and bar extension.

The tickets costing only Û15 can be purchased by contacting Joe White on 087 3010241 and Aidan McCann on 086 0867474. Tickets should be purchased in advance of the night and are in high demand so please get your orders in early.

Please return enclosed ticket reserve sheet with club and members names.

For hotel bookings please contact the Green Isle Hotel on 01 4593406, or email reservations@ greenislehotel.com and quote 'Macra' to avail of special discount rate.

'Be Green, Be Seen' will be held on St.Patricks eve at the Green Isle Hotel, Newlands Cross, Co Dublin.

Why not make a weekend of it in the Capital city, with fantastic entertainment lined up, be it St Patrick's Day parade or The Club Championships in Croke Park, something for everyone.

Challenge the Greenways Up for a challenge? Support CF West building fund by participating in Challenge The Greenway on 23rd March! Contact Caroline Heffernan for details / Email: cheffernan@cfireland.ie Mob:087 9323933. See flyer in 'Event Focus' section.

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Jan/Feb 2013

hOSPITAL pROJECTS Beaumont and Waterford

Beaumont Hospital Project As stated in our last issue of Spectrum, we urgently need to raise Û2.5million for 12 in-patient isolation rooms in Beaumont Hospital for people with cystic fibrosis, and we need your help.

Beaumont Hospital is one of three major centres in Ireland for adult Cystic Fibrosis care, yet at present there are only 4 inpatient rooms for CF patients. Recent research and international standards show that 12 CF inpatient rooms are needed as a matter of urgency in the hospital.

Currently, 120 adults with CF attend Beaumont Hospital. This figure represents a 50% increase in patients since 2008, when there were 80 adult CF patients and it is predicted that 10-15 more patients will be added each year as patients transfer from paediatric CF centres.

All CF patients will need inpatient care to help fight infections and to provide care when health deteriorates. Because of the nature of CF, many people require hospital treatment for a number of weeks. Due to the risk of cross-infection, the rooms needed are specially designed hi-spec isolation rooms. At present, the number of inpatient isolation rooms for people with CF in Beaumont fall significantly below international standards and recent research shows we urgently need a 12 room facility.

If you would like to organise a fundraising event please call The Fundraising Team on 01 4962433 or email: fundraising@cfireland.ie. The dedicated account is: AIB, Rathgar, Dublin 6.

Irish National Association for Cystic Fibrosis Beaumont Hospital Project Sort code: 93-10-71 Account no: 11835253 Please ensure your name is written in the narrative section of the lodgement slip.

Waterford Hospital Project The fundraising drive to raise Û250k, which is the estimated cost of refurbishing 4 rooms to provide paediatric isolated ensuite facilities in Waterford Regional Hospital for Cystic Fibrosis has well and truly started. With approximarely Û45k raised to date, the fundraising committee have organised a Valentine's Dance, Fashion Show, Head shave and many more events. Follow them on Facebook http://www.facebook.com/WaterfordCysticFibrosis.

The present facilities are, and have for many years been unsatisfactory for the appropriate care and treatment of children who suffer with CF. Isolated and ensuite rooms are a key element of the safe treatment of children, as they are susceptible to cross-infection from hospital superbugs and other airborne bacteria as inpatients. A child with CF can sometimes spend two weeks in every three-month period in hospital for intravenous antibiotic treatment.

Noel Connors All Star Waterford Hurler, Paige Brennan aged 5 (PWCF) and Walter Walsh Kilkenny Hurler and All Ireland 2012 'Man of the Match'.

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We once again appeal to CF families in the Carlow, Kilkenny, Tipperary, Wexford and Waterford areas to support this appeal with organised fundraising events, no matter how small it may seem.

For fundraising materials, assistance and advice, call Martin or Rosie at 01-4962433. The dedicated account is: AIB, Rathgar, Dublin 6 Irish National Association for Cystic Fibrosis Waterford Hospital Project Sort code: 93-10-71 Account no:11835170 Please ensure your name is written in the narrative section of the lodgement slip.

Online ShoP Oatlands College Sing for CF

Buy a Song this New Year for CF on iTunes 'For the First Time' a cover of the Script's song by 'Oatlands College' all in aid of the 'CF Beds for Beaumont' Campaign!

Oatlands College Choir pictured above.

Please support this campaign, and share this with your friends and family. A big thank you to teacher Kim Cunningham and all at Oatlands College Choir. Simply search for 'Oatlands College' in iTunes .

Corporate Fundraising Charity Partner for 2013

Manpower We would like to welcome on board 'Manpower Ireland' employment expert agency as a Charity Partner for 2013. The partnership will see the staff of Manpower Ireland organise various events throughout 2013 starting with a coffee morning in February.

Would your business like to follow in the steps of Manpower, whether you are planning a long-term partnership or a onceoff event, our team are here to support you, email Ciara at cenright@cfireland.ie to get involved, raise staff morale and make a difference to the lives of people with CF. 30

Jan/Feb 2013

Thank You Acknowledgements and Cheque Presentations

Joe Crowley Camino Walk Thank you to Joe Crowley who braved the Camino Walk in August and raised a fantastic Û19k for Cystic Fibrosis Ireland and the Pharmacy Benevolent Fund.

Paula Lambert's Wax and Shave Event Killester Club, Dublin Congratulations to Paula on raising Û3,185 thhrough her Wax and Shave night in the Killester Club.

Paula raised Û3,185 thhrough her Wax and Shave night in the Killester Club.

Rosie Begley, Fundraising Co-ordinator CFI and Paula Lambert at the cheque presentation in CF House.

Christmas Fundraising Thank you to all those who organised or participated in Christmas fundraising events and purchased our Christmas Cards. We received lots of donations and fantastic photos, so well done to all our valued supporters.

Brian Hurley, Conor Hurley, Nick Pickett and Gary Weldon jumped off Loughshinny pier in Rush Co Dublin for CF.

Santa Dash A big thank you to all participants who took part in Santa Dash in December! It was a fun packed day for all on Clontarf beach!

The Nolan family and their daughter Ruth (far right) who took part in the Santa Dash!

'Team Senan' family and friends who took part in the Santa Dash for Senan (PWCF)!

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Fifth Annual Pat Dowling Memorial Match, December 26th 2012 Well done and thank you to all those involved in the Fifth Annual Pat Dowling Memorial Match in Ballinkillen, Co Carlow. Anne Dowling kindly dedicated the proceeds to CF in memory of her late husband Pat. Sean and Paul Minchin, brothers of the late Paul (PWCF) took part, playing for Ballinkillen, and Paul tells us that all had a great day out. Û463 was raised for CF and thank you to both teams as well as the organisers for your generosity.

Robin Giller's Ranelagh 100 Minute Marathon A big thank you to Robin Giller and team for participating in a 100 Minute Marathon in the Dublin 6 area, on Sunday 9th December, and raising Û2,720 for CF.

Robin Giller and friends raised Û2,720 for CF at the 100 Minute Marathon.

Army No 1 Band A big thank you to The Army No 1 Band and team for their Christmas music and collection in Dublin and raising Û2,065 for CF. Fr. Bob McCabe, (chaplain to the Forces, or CF as his designatory letters show) organised the event, the band were super and thank you all for your support.

The Army No 1 Band presenting a cheque of Û2,065 for CF.

Dublin Marathon 2012 27k has been raised so far; thank you and well done to all that participated!

Our heartfelt thanks to all our dedicated runners who pounded the pavements of Dublin City for 26 miles for CF on 29th of October 2012. Just a reminder to runners to lodge fundsraised as soon as possible to help CFAI provide vital isolation beds and new treatment centres nationwide.

Direct Lodgements can be made at: Bank: AIB, 9 Terenure Road, Rathgar, D6 Account Name: Fundraising Account Account Number: 0857 8593 Sort Code: 93-10-71

Don Mahon, Trim Athletic Club ran 2012 Dublin Marathon to raise money for Cystic Fibrosis Ireland. His efforts realised €2650 which will help in the provision of improved facilities for patients and their families. (L-R) Martin Cahill, CFI, Niamh Mahon (PWCF) and Don Mahon.

IMPORTANT: It is essential that you put your name in the narrative section of the lodgement slip so we know who the funds are from and can receipt you/acknowledge the donation accordingly.

Send a Cheque to CFI, 24 Lower Rathmines Road, Dublin 6, reference Dublin Marathon 2012. Please write your name on the back of the cheque.

My Charity lodgements will come directly to CFI. Make an online donation on the www.cfireland. ie donate page.

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Jan/Feb 2013

Cavan Branch of CFI from Mountnugent Friends of the Cavan Branch of CFAI from Mountnugent have been fundraising for the branch for 29 years and at the presentation of the proceeds, Û4,580, from their 2012 Easter Draw were; See also the 'Latest News' section and read about Cavan mother, Lorainne O'Neill, who won a Volunteer Ireland Award.

Back row (L-R) Denise Reilly, Fiona Cooke, Bridgid Kenny, Raymond Dunne, Lorraine Brady, Claire Masterson and Eileen Brady. Front row (L-R) Audrey Brady, Mary Greene Phyllis McDonnell, Rosaleen Cronin, Treasurer of Cavan branch CFAI, Martina Fenlon and Tess Brady. Pic: Aiden McCabe.

Challenge the Greenways Ñ Cheque Presentation Johnny Oosten and Dennis Dunleavy present CF West with a cheque for Û21,000 towards CF West building fund for a specialised CF and respiratory out-patients unit and day care centre for people with cystic fibrosis in the West of Ireland. We would like to take this opportunity to thank everyone who helped make this event so successful. A special thanks to the Order of Malta from Achill and Westport, all who participated and to the general public who sponsored the participants. CF West would like to thank everyone for their continuous support and generosity towards CF.

L-R: Liam McHugh, (Order of Malta Westport) Caroline Heffernan (CFWest) Ellen Caffertey (Order of Malta Achill).

L-R: Dennis Dunleavy, Tomas Thompson (CF Advocate) Mary Lynn (CF Nurse) Johnny Oosten Caroline Heffernan (CF Advocate) Charlie Meehan (General Manager of Mayo General Hospital) Ellen Caffertey and Liam McHugh (Order of Malta Achill and Westport) Edel Fahey (CF West).

Tipperary Association for Cystic Fibrosis cheque presentation to St. Vincent's Foundation Tipperary Association for Cystic Fibrosis, as part of their fundraising, very kindly donated Û2,000 to St. Vincent's Foundation. The money will be used for the benefit of CF patients in St Vincent's University Hospital.

Michael Hickey Chairman of Tipperary Association for Cystic Fibrosis is pictured presenting the cheque to John Hickey and Ger Lanigan Ryan of St. Vincent's Foundation.

Michael Hickey, Chairman of the Tipperary Branch for Cystic Fibrosis Ireland, presenting thea cheque to John Hickey and Ger Lanigan Ryan of St. Vincent's Foundation.

We thank all our volunteers in 2012 sincerely, and look forward to your continued support in our efforts in 2013!

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About Cystic Fibrosis Ireland (CFI)

CFI is a registered charity CHY 6350 that was set up by parents in 1963 to improve the treatment and facilities for people with CF in Ireland. It is a national organisation with many Branches around the country.

CFI is committed to working to improve CF services in Ireland and our recent progress includes: ● Lobbying to ensure that the new national adult CF centre in St Vincent's University Hospital was completed with up to 34 in-patient beds for people with CF ● Providing funding towards new CF Units around the country including Crumlin, Drogheda, Galway, Mayo, Waterford, Beaumont and Limerick Hospitals ● Funding research in Cork University Hospital, St Vincent's University Hospital and University College Dublin ● Campaigning to improve the rate of double lung transplantation in Ireland ● Providing advice and expertise

ISSN 2009-4132 ISSN 2009-4132 ISSN 2009-4132

Cystic Fibrosis Ireland t: +353 1 496 2433 24 Lower Rathmines Road f: +353 1 496 2201 Dublin 6 e: info@cfireland.ie

Ireland w: www.cfireland.ie

Company Reg: 449954

Charity: CHY6350 34