Spectrum - Issue 25

Jan/Feb 2012

SPECTRUM

Published by the Cystic Fibrosis Association of Ireland

IN THIS ISSUE:

• Exercise Grant Round 1 – Now Open • CFAI Annual Conference 2012 • New Faces at CFAI • PWCF Spotlights • Run, Walk or Jog for CF – Are you 1 in 1,000?

• Fundraising Events this Spring Issue 25: Jan/Feb 2012 www.cfireland.ie

1

Spectrum / Issue 25

Dear All, Towards our 50th Birthday As we approach the 50th birthday of the CFAI we will be marking this important anniversary in a number of ways.

The CFAI is one of the longest established CF Associations in the world. We were developed through the meetings/discussions of parents in 1962 and formally established in 1963. We are one year older than our sister organisation in the UK and three years older than the Belgian Association. The Canadian and the US Associations predate us only by a few years.

The longevity of the CFAI is a tribute to those parents who had the vision to found the Association and to all those parents, people with CF, health care professionals and our supporters, who have been involved in the work of the Association over the past 50 years.

Issues of Spectrum this year (beginning with the next issue) will also highlight some of the milestones of CF care over the past 50 years, both in Ireland and worldwide.

The Annual Conference will also mark the beginning of our anniversary celebrations. We have a wide range of speakers already lined up for our annual conference, so don’t forget to mark the 13th, 14th and 15th of April in your diary for what promises to be a special weekend.

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

2

Jan/Feb 2012

Section 01:

LATEST NEWS : Page 2–7 CFAI Annual Conference – Second Announcement European CF Society Conference – Volunteers Still Needed!

Mid-Western Regional Hospital Limerick Building Update New Faces at CFAI DARE - Important Dates to Remember Patient Liaison Cystic Fibrosis Group SVUH – Update Calling All Teenagers with CF ‘The Drive at 35’, a Book by Andy Lipman Getting Nosey about CF with Oli and Nush, CF Trust UK Holiday Home Offer -Section 02:

RESEARCH BRIEF : Page 8–9 TRYCIS: Transition from child to adult care Quali-TYDES study -Section 03:

GRANTS AND SUPPORTS : Page 10–14 Exercise Grant 2012 - Round 1 Now Open Summary of Grants and Supports for Members in 2012 CF Online Forum -Section 04:

PWCF SPOTLIGHT : Page 15–19 Rosie Fitzgerald, Live for the Day Trevor O’Sullivan, Organ Donation Saves Lives -Section 05:

EVENT FOCUS : Page 20–21 Are you 1 in 1,000 for 2012?

-Section 06:

FUNDRAISING : Page 22–28 65 Roses Awareness Week 2012 Dart Exhibitions Westport Weekend Wobbler Rome Marathon 2012 Paddy Kierans Memorial Poland Walk 2012 Waterford Emergency Services Kayak for CF See Inside for More...

1

Spectrum / Issue 25

LATEST NEWS

SECTION 01

PAGE 2—7

CFAI Annual Conference 2012 White’s Hotel Wexford, 13th-15th April 2012 This years CFAI Annual Conference will be taking place on the 13th-15th April in Whites Hotel, Co. Wexford.

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 to have a break and catch up with friends.

Whites Hotel is a 4 star hotel based in Wexford town, just a two hour drive from Dublin and within easy access of Rosslare Europort and Wexford Train and Bus Station. It also has state of the art conference facilities as well as a “Tranquility Spa” and leisure centre open to all hotel guests. For more information on the hotel please visit www.whitesofwexford.ie.

The CFAI Annual Conference 2012 will be taking place at Whites Hotel in Wexford.

All CFAI 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 the CFAI before booking with the Hotel. It is very important that all individuals attending the Conference are registered with us so that 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 queries please contact Suzanne directly on 01 4962433 or email info@cfireland.ie.

The CFAI Annual Conference 2012 will be held on 13th-15th April.

National Awareness Week 2012 April 13th to 20th Work is in progress for our 65 Roses National Awareness Week, which will take place from Friday 13th to 20th of April. We would encourage all members to get involved and organise events locally to raise awareness and funds for CF this year. Volunteers are also needed for collections at shopping centers around the country, so please get in touch if you are interested!

Please see our Fundraising section for more information on awareness week this year.

2

Jan/Feb 2012

European CF Conference Can You Volunteer?

We are still looking for volunteers for the European CF Society Conference, which will be held at the Convention Centre located in the heart of Dublin, from 6th-9th June. In conjunction with the conference organisers, CFAI are organising and co-ordinating volunteers for the event to ensure its smooth running.

The ECFS Conference is a very prestigious event on the annual calendar for experts in CF, and the programme is packed with plenary sessions, symposia and workshops. Scientific and clinical teams from all over the world will descend to Dublin for the event to discuss, debate and listen to all the latest developments in CF. Given the medical aspect of the conference, we would particularly encourage volunteers who have an interest in the scientific dimensions of CF. 2012 marks the 50th anniversary of the CFAI and the 20th anniversary of the last time the conference was held in Dublin so it is sure to be a special event. If you are interested in getting involved and volunteering at the event, please contact Suzie in the National Office to request a volunteer application form or log on to our website and download a copy.

Some of the tasks include helping with conference pack preparation, providing general assistance to participants during the event and various other tasks. In exchange for your assistance, volunteers will have access some of the conference free of charge.

For more information on the conference programme, please check the following: www.ecfs.eu/ files/webfm/webfiles/File/conferences/Dublin2012/ECFS%202012_2nd%20Announcement.pdf

Volunteers are still needed for the ECFS Conference in Dublin this June.

The ECFS conference will take place at the Convention Centre in Dublin.

3

Spectrum / Issue 25

New Faces at cfai Profile of New Staff Members Ciara Enright, Fundraising Co-ordinator, 1 in 1,000 campaign My name is Ciara Enright and I am proud to be taking over the role of Fundraising Co-ordinator for the 1 in 1,000 campaign. I want to send my gratitude to Maria Caldwell and Kathy Baker ‘1 in 1,000 2011 team’ for doing a fantastic job last year, which has provided me with a great platform for 2012.

I am a native of Co. Limerick, and was delighted to make the venture to Dublin to work for the Cystic Fibrosis Association of Ireland. I studied a BA in Theatre/Music Studies from the Institute of Technology Tralee, a degree I enjoyed thoroughly. Following this, I was elected Welfare Officer for the Students Union, where I spent a year campaigning for the Student Body. On leaving Tralee after 5 years, I began my MSc in Marketing, Consumption & Society from the University of Limerick, where I recently graduated.

Ciara is the new Fundraising Coordinator for 1 in 1,000.

Ladies, I hope you are getting excited about donning your trainers to make a difference for Cystic Fibrosis once more, I know I am. So let’s all get on board once again! You’re 1 in 1000!

If you have any questions please feel free to contact me at e: cenright@cfireland.ie or call t: 01 4962433. I will be happy to talk to you and, more importantly, I look forward to it.

Katie Murphy, PWCF, Regional Development Officer, TLC4CF My name is Katie Murphy and I recently joined the CFAI team, working as the Regional Development Officer for the Tipperary, Limerick and Clare regions (TLC4CF). As I am a person with cystic fibrosis, my appointment to this post is extremely special and rewarding.

I graduated from NUI Maynooth with a BA in Psychology in 2010.

During my studies I developed a keen interest in the psychosocial impact of living with a chronic illness, namely cystic fibrosis. This interest spurred me to complete a Masters in Health Promotion at NUI Galway. The aim of Health Promotion is to enable people to increase control over and therefore improve their health; an ethos which feeds directly into the day-to-day management of CF. I am currently completing a Minor Dissertation as part of the Master’s course in which I am investigating the ‘Sexual health of women with CF in Ireland; knowledge, attitudes and behaviour’. Through this research I hope to ensure that women are well informed about how CF can impact on their sexual and reproductive health.

Katie, PWCF, is the new Regional Development Officer for TLC4CF.

As Regional Development Officer for TLC4CF, I have four main objectives; to advocate on behalf of the TLC4CF community, provide information and support to patients and families, to assist with and co-ordinate fundraising events in the region and to assist with the building process of the new CF specialist unit at the Mid-Western Regional Hospital (MWRH), Limerick.

I am extremely excited to have joined the Cystic Fibrosis Association of Ireland and to be working with TLC4CF. If anyone wishes to contact me, my details are as follows: t: kmurphy@cfireland.ie or e: katie@tlc4cf.com or at 087 1954213.

4

Jan/Feb 2012

Disability access route to education Reminder for Members Applying to the CAO It’s that time of year again when students around the country are getting ready to apply to the CAO scheme and compete for a place in a third level college or university of their choice. Below is a reminder about the DARE scheme, and important dates to note down when preparing for your application.

What is DARE? The Disability Access Route to Education (DARE) is a supplementary admissions scheme which offers college and university places on a reduced points basis to school leavers with disabilities. A list of the colleges/universities that take part in DARE are listed here: www.accesscollege.ie/dare/participate.php Who is it for?

DARE is for school leavers who have the ability to benefit from and succeed in higher education but who may not be able to meet the points for their preferred course due to the impact of their disability.

PWCF are eligible to apply through DARE under the ‘Significant Ongoing Illnesses’ category.

The DARE scheme offers college places to students with disabilities on a reduced points basis.

Why should I apply to DARE? You should complete a DARE application if you wish to compete for one of the reduced points places on offer in the participating colleges. Each college that takes part in DARE has a reserved number of places to offer eligible DARE students at lower Leaving Cert points. This is what is meant by reduced points places. Details of places available and minimun course entry requirements can be found at accesscollege.ie.

Important Dates to Remember 1st February 2012: You must apply to the CAO at www.cao.ie.

1st March 2012: You must disclose your disability and/or specific learning difficulty in your CAO application and fully and correctly complete Section A of the Supplementary Information Form (the SIF is a part of your CAO application). If you wish to be considered for the DARE scheme, you must indicate this on Section A of the fully completed SIF by ticking “Yes” to Question 5 by this date.

1st April 2012: You must return the fully completed Second Level Academic Reference (Section B) and Evidence of Disability (Section C) to the CAO. You will get a letter in late June 2012 (after the Leaving Certificate exam) telling you whether you are eligible for the DARE 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.

A step by step guide on how to apply to the DARE scheme and associated deadlines are available here: www.accesscollege.ie/dare/apply.php For further advice: For support on completing a DARE application, please contact the CAO Helpdesk by clicking ‘Contact Us’ at www.cao.ie or call 091 509 800.

5

Spectrum / Issue 25

Patient Liaison Cystic Fibrosis Group Meeting Update from SVUH The CF team at St Vincent’s University Hospital have asked the CFAI to highlight to all patients with CF the importance of wearing ID bands in hospital – it is vitally important that patients wear wristbands at all times for identity and health and safety purposes.

The CF team reported that they are currently finding it very challenging to get some patients to wear these wristbands. SVUH are aiming towards 100% compliance on patients wearing ID bands in 2012. Recent audit results show that a high volume of Cystic Fibrosis patients do not comply. The CF team are asking that all PWCF, both in-patients and day patients, would cooperate with wearing their electronic wristbands, in the future.

calling all teenagers with CF Conference Calls In response to recent queries from parents regarding supports available for teenagers with CF, we would again like to encourage teenagers and young adults with CF to get in touch with us so that we can improve communications for them.

CFAI would be happy to arrange and host conference calls for any members in this age bracket around the country that are interested in chatting to one another. This is a facility that adults with CF use on a regular basis to discuss particular issues, socialise and stay in touch with one another. Please contact Caroline Heffernan, CF Advocate, on 087 9323933 or email cheffernan@ cfireland.ie if you woud like to get involved or find out more.

‘The Drive at 35’

By Andy Lipman – ‘I have CF, but it will never have me!’

Andy Lipman has Cystic Fibrosis. He is 38 years of ages, is married to his wife Andrea and has two children, Avery and Ethan. He is a college graduate, an Olympic-torch bearer, a motivational speaker and a committed fundraiser.

‘The Drive at 35’ is Andy’s third book and gives an account of life with cystic fibrosis from early childhood to life at college. He writes candidly about his bouts with depression and how he works to maintain an optimistic approach to life. In 11 years, Andy has raised over US$1 million for CF through the ‘A Wish for Wendy’ Foundation, which he started with his father in memory of his sister Wendy who passed away from CF. We are delighted to also announce that Andy will be speaking at the CFAI Annual Conference in Wexford this year.

‘The Drive at 35’ can be purchased online at: www.andylipman. com/books.cfm – all proceeds go to the CF Foundation.

6

‘The Drive at 35’, a book by Andy Lipman, PWCF.

Jan/Feb 2012

Getting Nosey about CF with Oli and NusH Courtesy of the CF Trust, UK Getting Nosey about CF with Oli and Nush is a a short film made for the Cystic Fibrosis Trust UK (www.cftrust. org.uk) by Absolutely Cuckoo, to help children with Cystic Fibrosis understand their condition and to explain to other children what Cystic Fibrosis is.

The cartoon is aimed at children with CF aged four to eight, to help answer some of the questions they may have about living with Cystic Fibrosis. It is just under 6 minutes long and has received wonderful feedback from the CF community here and abroad, so why not log on and check it out for yourself!

Getting Nosey about CF is a lovely cartoon to help children understand more about CF.

To view ‘Getting Nosey about CF’, log on to the CF Trust YouTube.channel here: www.youtube. com/watch?v=WuI72eMrIQI

Holiday Home Offer Lakeside Homes, Our Lady’s Island, Co. Wexford The CFAI were recently approached by residents of Lakeside Homes, Our Lady’s Island, Co. Wexford. They are generously offering the use of a number of fully equipped holiday homes free of charge to our members for the purpose of a Respite Care holiday. The houses will be available from the Sunday 22nd June Friday. The sizes of the houses vary from 3-4 beds.

The village of Lady’s Island is situated 6km south of Rosslare Harbour. It has a lake very close by which is separated from the open sea by a shingle bank and is a well-known walking area.

The village is only a short walk from the holiday homes while the beach is approx. a 2km drive.

A car would be recommended for this reason.

Lakeside Homes are located on Our Lady’s Island, Co. Wexford.

The island itself is connected to the mainland by a causeway and is the site of a well-known pilgrimage held annually in August. The offer is open to any of our members subject to certain terms and conditions.

There are only a limited amount of homes on offer so if you are interested please contact Suzanne directly by emailing info@cfireland.ie or call 01 4962433.

7

Spectrum / Issue 25

RESEARCH BRIEF

SECTION 02

PAGE 8—9

trycis: A study on TRANSITION FROM CHILD TO ADULT CARE School of Nursing and Midwifery, Trinity College Dublin Project Title TRYCIS: Transition from child to adult care for young people with chronic illness: a study of policies, process, patients, parents and healthcare professional’s perspectives.

This research project is being led by Prof. Imelda Coyne and a team of researchers at the School of Nursing and Midwifery in Trinity College Dublin. TRYCIS is a 3 year research project funded by the Health Research Board (HRB) Ireland.

What we know about transition (term used for the move from child to adult healthcare service) Young people with a chronic illness face many challenges as they move from child to adult healthcare services. A good transition process can help improve the qualitiy of life for young people with chronic illness1 by ensuring that young people attend clinics and continue to follow up with their new healthcare service after transition. It is believed that the transition process might be helped by earlier discussions about transition, written transfer policy between child and adult services, opportunities to meet the new healthcare team, and visits to adult service2,3.

Many people recommend gradual and flexible transition arrangements to help young people adjust to all the changes4. Before developing a structured transition programme, it is important to explore the key concerns of all persons (young people, parents and health professionals) involved in the transition process. This is especially important within an Irish context, as we lack information on what would help young people when they have to move to the adult services.

What we intend to do in this research project We want to obtain a comprehensive understanding of young people’s needs and experiences of moving from child to adult healthcare services, along with their parents and healthcare professionals’ perspectives. We are researching children and young adults with three tracer conditions; cystic fibrosis, diabetes and chronic heart disease. We hope that the results will help health professionals and parents to understand how young people feel about transitioning to adult healthcare services and to provide the support to make the transition process easier for all concerned.

What does this project involve for you?

Young people from six child and adult healthcare services in the Dublin area will be invited to complete a postal questionnaire and will also have the option to participate in an interview. We hope to interview at least 60 young people (10 with each condition from both child and adult services) and their parents and healthcare professionals. The questionnaire includes questions on health and well-being, relationships, satisfaction with services and preferences for obtaining information on the transition process. If you do not receive a questionnaire and you wish to share your feelings, views, expectations or experiences of the transition process please feel free to include these in a letter which you can send to Dr. Orla Dempsey at the School of Nursing and Midwifery, Trinity College Dublin, 24 D’Olier Street, Dublin 2.

8

Jan/Feb 2012

What will happen to the information you provide?

Please know that your participation in the study is voluntary and confidential. Your identity will remain confidential. Your name will not be published or disclosed to anyone. Following completion of this study, all data collected including questionnaires, audio-recordings and notes of what you said will be kept in a locked cabinet for five years (in accordance with data storage regulations). After this period all the paperwork and recordings will be destroyed. The material will not be used in future unrelated studies without your permission.

When the project is completed, we will prepare a report for the funders, Health Research Board.

We will summarise the key findings and this will be available for parents, young people and healthcare professionals. A copy of the executive report will be available on request from the research team at the School of Nursing and Midwifery, Trinity College Dublin.

Department of Health (2008). Transition: Moving on well. Department of Health, London.

McDonagh, J.E. & Viner, R.M. (2006). Lost in transition? Between paediatric and adult services. BMJ 332: 435-436.

3 Tuchman L.K., Slap G.B., Britto M.T. (2008). Transition to Adult Care: experiences and expectations of adolescents with a chronic illness. Childcare, Health andb Development 34(5): 557-63.

4 Day, P., Turner, J., Hollows, A., & Brookes, E. (2007). Bridging the gap: transitioning from child to adult services. British 1 2

Journal of School Nursing 2(4): 146-152.

Quali-TYDES Ireland School of Education, Trinity College Dublin Project Title Qualitative Tracking with Young Disabled People in European States (Quali-TYDES).

The purpose of the Quali-TYDES project is to investigate and explain how new developments in global, European, and national/local policies are impacting on the lives of young disabled adults in several European countries. Led by Dr. Michael Shevlin and Dr. Fiona Smyth at the School of Education, Trinity College Dublin, Quali-TYDES is one of a number of research projects operating under the Inclusion, Education and Society research theme in the School.

The Quali-TYDES Ireland researchers are conducting ‘life-story’ interviews with young people now and would like people with cystic fibrosis to get involved. If you were born in the 1980s, we would like to hear about your experiences, aspirations and expectations on: • Education • Important decisions • Barriers/opportunities • Regrets/dreams • Successes/problems • Who or what helped We can come to you anywhere in the country or will reimburse your travel expenses if you travel to us. If you are willing to participate, or for more information, please contact: Dr. Fiona Smyth, School of Education, Trinity College Dublin, College Green, Dublin 2, Ireland. smythf2@tcd.ie / Tel: 086 3153429 To read more about this study please log on to: www.tcd.ie/Education/research/groups/TCD%20 QT%20Site%5B1%5D.pdf Quali-TYDES Ireland is funded by the European Science Foundation under the ECRP V scheme and by the Irish Research Council for the Humanities and Social Sciences.

9

Spectrum / Issue 25

GRANTS & SUPPORTS SECTION 03

PAGE 10—14

The CFAI provides a range of grants for our members which are available provided an application is made, the grant criteria are met and there are sufficient resources. A summary of these grants are outlined below.

Exercise Grant Scheme 2012 Now Accepting Applications for Round 1 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, the CFAI 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, the CFAI has continued to run this grant scheme and a total of 372 grants have since been awarded to members.

How much funding is available?

The maximum value of this grant is €300 for PWCF over 16 years of age, and €250 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 CFAI National Office by a particular deadline.

What is the deadline for applications?

There will be two rounds for this scheme in 2012.

The number of grants awarded for each call will be limited, and will depend on available funding within the Association. Round 1 is now open. The deadline for submission of applications to Round 1 is Friday 2nd March 2012. Details for the second call will be announced during the summer in 2012.

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 2012’ tab.

For further information about this call, please contact: Alica May, Services and Information Officer t: 01 496 2433 e: amay@cfireland.ie 10

Jan/Feb 2012

To help inspire and motivate you in applying for the Exercise Grant this year, have a read of the following article written by Katie Moore, PWCF, 25, who ran the Dublin City Marathon in 2011.

My Marathon Story, By Katie Moore, PWCF 25, Co. Mayo When I think about my brother Andrew and I running the Dublin City Marathon on 31st October 2011, the first thing that springs to mind is that anything is possible.

My name is Katie Moore, I’m 25 years old and I have Cystic Fibrosis. (My last article for Spectrum was about my millinery business, and my fun travels around the world). I have been running on and off for the last few years, finding it the best form of phsyio for me. Running and being fit makes me far more able to fight off infections, and as I have CF that is one of my main priorities.

I’m determind to be healthy, so therefore I do everything that I can to be healthy – running is one of those things.

Andrew is my only sibling, he’s two years older than me, and super fit. He doesn’t have CF. He’s the complete opposite to me, I’m creative, a bit of a dreamer, he’s academic and doing so well with his career. We travelled a lot growing up, moving from country to country, so we were each others constant friend, I would play GI Joe with him if he would play Barbies with me.

Last June Andrew told me he has signed up to do the Dublin City Marathon for the third time in a row. Of course I thought that was fantastic, never mind doing one marathon but to be signing up for his fourth (he also did the Vancouver Marathon). I kept wondering if I could run a marathon, so once I got it into my head I knew I wanted to give it a go. I signed up for the marathon in July. I continued my usual training of running 4 miles a day, 5 to 6 times a week. Then I gradually started running longer distances, 8 miles to 12 miles. Next thing I was running 17 miles! It was great, I was really enjoying it. My iPod was full of uplifting music to keep me going while running, and I had my ‘body fuel’ Lucozade sport.

Andrew lives in London, so we were in contact with each other all the time, seeing how our training was going. He wanted to know what minute miles I was doing – he had his time down to a tee, whereas I didnt even wear a watch while running. I realised not only am I laid back in life, but also in my running, I needed to start wearing a watch!

Katie with her brother Andrew before the big race.

I moved to Galway in September as I was starting college, studying Art and Design as a full-time mature student. College was great, super busy with so much work to do, but I was enjoying all the work so I didn’t mind. The only problem was that I had less time to train for the marathon. I was also in a big classroom with 110 students everyday, which isn’t a great thing when you have CF, as a lot of people in one room screams infection to me. I started feeling sick, knowing I had a sinus infection with an annoying back drip which caused a permanent sore throat; I didnt want to admit this at first as I had just started college and didnt want to miss any days. I was put on antibiotics, which drained me totally. My marathon training was non-existant at that stage, so I decided I wouldn’t think about the marathon as there wasn’t anything I could do about being sick.

I knew that no matter what I would do the marathon, but that maybe I would have to walk rather than run it.

11

Spectrum / Issue 25

October bank holiday weekend soon approached and it was time for Mum, my boyfriend and I to head to Dublin where we were meeting Andrew. My brother was treating us to stay at the Conrad Hotel which was great as it added to the excitement of the marathon.

Andrew and I walked to the starting point of the marathon, we were all kitted out in our running gear with our numbers pinned on, there was great excitement! Andrew insisted on running with me during the marathon, which is something I didn’t think I would want as I always run by myself. But soon into the marathon I realised I needed him to run with me – you need support at a time like that. I decided I would run the marathon until I had to walk, but I just kept running, not wanting to walk, the atmosphere was fantastic. I really enjoyed the marathon, it was strange, almost like an outer body experience, I didn’t find it difficult since I was just having such a good time and thinking ‘I can’t believe I’m running a marathon.’ Of course, when this thought kept popping into my head I had to hold back the tears! We had so many friends and family out to cheer us on, which really helped me along.

At 22 miles I started to think I’m ready for this to be over, then when I spotted Trinity College I started to run faster – the finish line was near and I couldn’t believe it! We crossed the finishing line, it was amazing, I was so overcome with happiness that I couldn’t stop crying – what an achievement for me. Running the marathon was definitely made easier for me having Andrew’s support along the way; he stayed with me for the full 5 hours and 58 seconds it took me to complete the marathon (normally it takes Andrew under 4 hours).

I had lots of aches and pains and ended up being pretty sick for a few days afterwards so I took it easy for a few weeks and was on some antibiotics. But that’s life when you have CF. I’m 25 now, a few years ago 25 was the life expectancy for people with CF in Ireland, and I’ve just run a marathon. Life is strange, all PWCF know that. But anything is possible, we just need a positive outlook on life even when it’s hard to (I know with CF it can be). Who knows what will happen in another few years for CF. We need to set goals and try our best to reach them – I do believe with a positive attitude and a ‘mind over matter’ mentality our journeys can be made a lot easier.

We did the marathon for the CF West Building Fund, which aims to raise €1 million to build a specialised day care unit at Mayo General Hospital, Castlebar. By running the marathon with Andrew, we managed to raise €1,703.10 for this project.

Katie and Andrew after the race.

For more information on the CF West Building Fund go to www.cfwest.ie.

Social and Distress Scheme Reminder of CFAI Supports The CFAI has limited funds available under the Social and Distress scheme to lend assistance to families of children with CF and adults with CF who are experiencing certain difficulties or financial hardship.

Requests for support through this scheme must be accompanied by a letter from the Social Worker or other health professional who has been involved in supporting the PWCF.

12

Jan/Feb 2012

Transplant Assessment/Transplant Grant Reminder of CFAI Grants We provide financial assistance towards incidental expenses (accommodation, meals and transport) incurred to members and their families who must travel for transplant assessment, transplant and follow-up phases.

What is it worth?

The transplant assessment grant is €300. The transplant grant is €850 if attending the Mater Hospital in Dublin, and €1,200 for those attending the Freeman Hospital in Newcastle, UK. How do I apply?

In order to avail of the transplant assessment grant, a copy of the original letter from Newcastle/ Mater stating the date and time of appointment for assessment must be sent to the CFAI. The CFAI should be contacted directly by a member of the CF/Transplant team or by the next-of-kin of the PWCF for the transplant grant.

When can I apply?

Application should be made as soon as notification of appointment or assessment is sent to the family. The CFAI cannot issue this grant to members retrospectively.

Can I apply again?

Applicants can reapply for support for assessment and transplantation.

Fertility Grant Open in the Summer 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.

What is it worth?

The maximum value of the Fertility Grant for first-time applicants is €3,000. The value of the grant for second-time applicants is €2,000.

How do I apply?

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 form and Guidance Notes will be made available for download under the Grants & Services section of our website once the scheme is announced in the summer. Members are advised to read the grant guidelines in advance of applying for this grant.

When can I apply?

Keep an eye out in Spectrum or look on our website for more information on this scheme in summer 2012.

Members can apply to this scheme up to a maximum of two times.

13

Spectrum / Issue 25

Counselling Referral Reminder of CFAI Supports The CFAI offers a counselling referral service to members who wish to speak with a professional outside of the hospital environment to work through their concerns and difficulties.

How do I apply?

There is no formal application process in place for members to avail of this service. CFAI should be contacted directly, or a family member could contact us on your behalf. The CFAI will approve 4 sessions initially with a counsellor – additional sessions will be subject to approval by the CFAI. All referrals are treated in the strictest of confidence.

When can I apply?

Members can avail of these services at any time.

Can I apply again?

This is not an ongoing service for members; however, if after the initial four sessions you feel that additional counselling would be greatly beneficial; please get in touch with us to discuss the possibility of extending this service further.

cf online forum A Voice for the Irish CF Community Cystic Fibrosis can be an isolating condition at times, with cross-infection issues making it difficult for people with CF and their families to come together, chat and support one another.

The CFAI Online Forum allows people with CF, their familes and friends, the opportunity to ask questions and share their experiences of living with this condition.

There are separate discussion sections on the forum for adults, teens, kids and family and friends. In addition to general discussions, you can post news updates and let others know about fundraising events taking place around the country. The site is moderated by staff of the CFAI who monitor the forum on a day-to-day basis – this ensures that unsuitable topics or material can be edited or removed from the site if necessary.

We would encourage you to use this resource as it provides another platform of communicating, as well as receiving support from other members. In addition to making new friends, you can also exchange information, share news and advice with one another. You can also drop us a line with your ideas, and suggestions on improvements.

So what are you waiting for – log on now and check it out!

Forum link: www.cfireland.ie/phpbb3/

14

Jan/Feb 2012

PWCF SPOTLIGHTS SECTION 04

PAGE 15—19

Live for the day

By Rosie Fitzgerald, PWCF, 24 Rosie Fitzgerald was recently awarded a first class honours degree in Applied Psychology, and also won the HETAC award for academic excellence as best overall student in her college. Along the way she found the time to have a lung transplant. She recounts how CF impacted on her studies.

My name is Rosie and I am 24 years old.

I was diagnosed with CF at six months of age (failure to thrive) and up until my teenage years lived an active and mostly healthy life, requiring IV antibiotics about once a year.

When I went into secondary school, my health seemed to deteriorate and even more so when I hit puberty. I suddenly required IV antiobiotics every couple of months. Luckily, my mum was able to administer the antibiotics at home, so I was able to continue to go to school.

Rosie on receiving her first class honours degree in Applied Psychology from the Institute of Art, Design and Technology, Dún Laoghaire.

But my CF got progressively worse and when I was 17, I was told that it was time to consider a lung transplant. I was in 6th year and preparing for my Leaving Certificate at the time. I was acquiring infections at such a rate that I spent more time on IV antibiotics than I did off. And unlike the years previous, the strength of infections and the toll they were taking on my body was such that I was spending more and more time in hospital. With each course of IVs over, instead of feeling better and ready to return to normal life, I was left exhausted, my body feeling like it needed a month to sleep.

In between all of this, I was choosing what course I wanted to do in college and where I wanted to go. I always did okay academically, but no subjects in school really appealed to me, so it became a task of crossing off what I definitely didn’t want to do (maths and languages) and find something I did. I was always fascinated by how people behave so I figured psychology would be interesting.

But when we went on tours of campuses like UCD, all I could focus on was the sheer amount of walking required to get from building to building. Likewise in Trinity and DIT, all I could see was stairs. My careers advisor suggested a small IT college in Dún Laoghaire I hadn’t heard of before, the Institute of Art, Design and Technology (IADT) so I went along to their open day. It was 15

Spectrum / Issue 25

a modern campus and had a buzz about it but was still very personable. It had a course that appealed to me (Applied Psychology) and at the time it had a much lower and attainable points requirement, so that took the pressure off me having to perform amazingly in the event I was unwell at exam time.

Rosie with her dad David on graduation day.

Like at the other open days I had attended, I was curious about their disability support services. I was quite shy about mentioning my CF but eventually plucked up the courage to speak to a staff member.

She was really encouraging and highlighted the benefit of attending a smaller college was that I wouldn’t get lost in the crowd of numbers if I had to get an extension on an assignment or wasn’t well for an exam. I left the open day really excited.

I had a number of very severe infections in the latter part of sixth year, but a month before exam time I came down with a very serious infection. I don’t remember a lot about that time except that I spent all day in the hospital bed, curtains drawn with no energy to even watch TV. Different drugs were being introduced in an effort to overcome the infection with advice being sought from other teams. I didn’t eat and barely drank, and school and college were the furthest things from my mind.

Then, as if by miracle, the weekend before my English Leaving Cert paper, I turned a corner and began to pick up again. By this point I was fairly apathetic about the exams themselves, but I was keen to at least look at all the papers and attempt questions here and there in the hope of passing a few so that when I repeated a year later, I wouldn’t have to re-sit all of them again. Arrangements were made so that I could sit my exams in Crumlin hospital so that the team were nearby, as I was still too unwell to go home, and had to be on oxygen while sitting the exam. In the couple of hours before each paper I was able to cram some study in and time after each paper was reserved for sleeping. Ultimately, I managed to pass all of my subjects and had enough points for my course in IADT. However, my health continued to decline over the summer and further when I transferred over to adult care in St Vincent’s hospital. I was now dependent on oxygen and had very little energy, and so what should have been my first year in college being a fresher, was spent being treated for infections in St Vincents. Having got my weight up from 38kgs to 45kgs, I went on the active transplant list in Newcastle. My lung function at that time was about mid 20s on a good day, and I required IVs on an almost permanent basis. While I did start my college course, with all this going on, I ended up deferring my first year in college at Christmas.

That July (after six months on the list) I got a call for my transplant and it all went ahead.

The recovery was in some ways very quick, in others frustratingly slow. But fortunately for me it always followed an upward trend. The team suggested instead of restarting college that September, that I wait a year given the unpredictability of the first year after transplant.

By the time I went back to college, I was ready to be challenged. I had a fantastic year group of 30 or so students and my fear of being an ancient old one in the class turned out to be unfounded. My good health meant I got to enjoy all aspects of college life the same as anyone else my age, and my choice of college was vindicated by the great support they gave me throughout my time there.

16

Jan/Feb 2012

The four years passed by at a remarkable speed. I went interrailing one summer and spent two summers away working at a summer camp and then travelling in America. Because I really enjoyed my course and had so much interest in the topics themselves, I would read to find out more rather than feel the need to actively study. This meant I found a good balance of having a social life rather than always being tied to the books.

Healthwise, overall things were good. Every year around winter time however, I managed to acquire a random infection of some sort (septecemia, pneumonia, the flu, a blood clot, swine flu to name a few of the more interesting ones). While these did tire me out at the time, thankfully they really didn’t impact my college life overall as they always seemed to crop up around Christmas break.

In November last, I graduated with a first class honours degree and to my surprise was awared HETAC student of the year for academic excellence. This award goes to the person who achieves the highest marks of the graduating year of that university or college. While I do know how to cram, I wouldn’t consider myself a brain box or anything; rather I believe that if you find something you enjoy, you can do very well at it. I also think when you find something you have a passion for, that can provide you with the added motivation to get better when illness strikes.

Rosie being presented with the HETAC award by Dr Annie Doona, President, IADT, Dun Laoghaire.

Currently I am studying for my Masters in Cognitive Science and Neuroimaging which is both interesting and daunting in equal measure. I don’t know what I will be doing this time next year, I may go down the path of psychology research or I may apply the research skills I’ve gained to a totally different area unrelated to psychology.

So, CF was very frustrating (and unfair), and it did really affect my education (not least that it took me 6 years to get a 4 year degree). And it continues to do so. But it’s important to not let it stop you from doing what you want to do. If it doesn’t allow you to plan ahead a great deal, then enjoy going with the flow. Live for the day!!!

17

Spectrum / Issue 25

Organ donations save lives

By Trevor O’Sullivan, Journalist and PWCF ‘Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of use is obliged, at least for a spell, to identify ourselves as citizens of that other place’ – Susan Sontag At the age of 12 years, a traumatic event changed the course of my life forever and gave me an insight into the transience of life that not many people are given.

After vomiting blood twice I was rushed by ambulance to Our Lady’s Hospital for Sick Children in Crumlin. After two months of enduring a battery of medical procedures I received a stunning diagnosis: my liver was ravaged by cirrhosis. The liver supports almost every organ in the body and when it fails it confers you with a multitude of ailments. So my teenage years were spent battling against often seemingly insurmountable odds.

My liver held out until the age of 20, when I was finally sent to Dublin to be assessed for a liver transplant. When I was told that without one I would die very soon I was inconsolable. I needed counselling before I was emotionally strong enough to prepare for what lay ahead. Waiting for a transplant is something almost impossible to explain. On the one hand you yearn for that call to give you a new life – but on the other side you know the second chance will mean the death of someone else. You go through every conceivable emotion in that time. I finally got my liver in May of 1995 and was only the 42nd person in Ireland to receive a liver, as the procedure was very new then in this country.

Within days my jaundiced and ravaged body radiated health. But my second liver failed due to complications, and I was listed again. In October of the same year I was hours from death and only another liver which came at the last moment saved me. The second transplant lasted 17 hours and only for the incredible skills of surgeon Oscar Traynor and the team I would not be writing this today.

‘It gave me an indescribable appreciation of life’ Only a few moments after that mammoth surgery I bled internally twice needing another two more trips to theatre. When I finally came off the ventilator things kept deteriorating, requiring three more operations to deal with chronic complications. Then, after an intensive recovery I started to plan for the future.

Trevor urges us all to carry organ donor cards.

Picture Courtesy of Michael McLaughlin.

18

The gift of life bestowed me with an appreciation of life that is indescribable. It forces you to prioritise what is truly important and makes the trivialities that others worry about pale into insignificance. It allowed me to fulfil my dream of doing a journalism degree in Dublin City University and also to travel to Graceland, as the music of Elvis was a huge source of comfort through those difficult years.

Jan/Feb 2012

The medical profession could never work out why my liver had failed initially. I had lung problems as a child which was put down to asthma. But in 2006 those lung problems began requiring constant hospital stays. Last year I was aghast to discover the source of all my problems: at an incredibly late age to be diagnosed, I was told I had cystic fibrosis.

It has taken me a full year to come to terms with that bombshell but as before I plan to fight to the bitter end. I will in time need a lung transplant and more than likely another liver as the cystic fibrosis will damage that again; possibly even a kidney as the anti-rejection drugs are toxic to that organ and I already have a modicum of damage.

I am here because someone carried an organ donor card. I have seen at first-hand how people close to certain death can become reborn. They take that second chance and grab it with both hands and make a contribution to life that is inspirational. I implore people to think of the following scenario. If a doctor told you that you were dying, you would be devastated beyond belief. But what if you were then told by that same physician ‘But we can save you with a new organ’? You would most certainly accept it.

If you would take the gift of life, why not do the same for someone else?

This article was also publised in TheJournal.ie on 3rd October 2011:www.thejournal.ie/author/ trevor-o’sullivan Trevor O’Sullivan tweets at @elvisrockysly.

19

Spectrum / Issue 25

EVENT FOCUS

SECTION 05

PAGE 20—21

aRE YOU 1 IN 1,000?

Run, Walk or Jog the Mini-Marathon for CF in 2012!

We are recruiting for 1,000 + plus women to run, walk or jog the mini-marathon for Cystic Fibrosis to raise much needed funds.

It’s that time of year again, where here in CFAI we begin our work on one of our biggest fundraising initiatives, ‘1 in 1,000’, which takes place June 4th as part of the 30th anniversary of the Flora Women’s Mini-Marathon. Join the Rose of Tralee, Tara Talbot, and ambassador for Cystic Fibrosis in 2012, and get involved in the 1 in 1,000 Mini-Marathon initiative this year!

1 in 1,000 has made a difference Over the past 2 years, funding raised by women running in the Flora Women’s Mini-Marathon has raised over €400,000. This has allowed CFAI to fund a new state of the art 4 bed ward for children in Crumlin Hospital and to provide vital new supports for parents of children with a newly diagnosed child. Please help us in 2012 when your support is more needed than ever.

We are asking each runner to raise €200 in sponsorship, but if you miss your target we will of course thank you for any support you can provide.

What 1 in 1,000 can achieve for 2012 Ireland has the highest rate of CF in the world, but our services still lag far behind other EU countries. The target for 2012 is to attract over 1,000 runners and to raise €200,000 for vital isolation beds and new treatment centres in Dublin (CF adults), Drogheda, Co Louth (CF children) and Castlebar Co Mayo (CF adults and children). 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. If we reach our target it will bring us ‘over the line’ and building may be able to commence as early as December 2012.

20

President McAleese viewing the new 4 bed ward at Crumlin hospital recently.

Ciara Enright, 1 in 1,000 Fundraising Co-ordinator, Philip Watt CEO, Tara Talbot Rose of Tralee and Ambassador for CF in 2012, and Martin Cahill Fundraising Manager.

Jan/Feb 2012

To participate, please follow these two easy steps: Entries for 2012 FWMM open on February 22nd and close April 20th.

Are

1000 en walkers needed f Services in Mini M

1. Register for the Flora Women’s Mini-Marathon when entries open on February 22nd at www. florawomensminimarathon.ie or find the official Entry Form in the Evening Herald every Wednesday and Saturday from the 22nd of February.

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

Email runnin call 18 www.cfire pack and fu on how YO 1 in 1000

2. Email details of your confirmation/race registration number to runningforcf@cfireland.ie or LoCall 1890 311 211 and we will provide you with a t-shirt, sponsorship cards, details of a hotel to leave your clothes/prepare for the race. A ‘goody bag’ of sponsored gifts will be provided on the day of the race.

1 in 1,000 is about bringing women together for a great cause, raising spirits, awareness, support and a huge sense of achievement.

Where possible we’re encouraging women to run in teams; so maybe you can get friends, family or colleagues involved – 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.

Even if you can’t get a team, that’s ok...you are still 1 in 1,000 amazing, empowering women and we value your effort and support. We welcome individual runners, and teams of any number.

Any sponsorship you raise and donate to CFAI is much appreciated, and will go towards the programmes described above.

For more information contact Ciara at runningforcf@cfireland.ie or LoCall 1890 311 211.

Are You 1 in 1,000?

Participants in the 1 in 1,000 Mini-Marathon initiative in 2011.

Participants in the 1 in 1,000 Mini-Marathon initiative in 2011.

21

Spectrum / Issue 25

FUNDRAISING

SECTION 06

PAGE 22—28

Fundraising, both local and national, continues to thrive in the sense that many events are proposed throughout 2012, and information will be constantly updated on our fundraising calendar. Given the continuing difficult economic climate we operate in, this augurs well for CFAI and income targets.

There is, however, no room for complacency in this regard, as disposable incomes drop and we find we are working harder to maintain value of fundraising. The generosity of spirit of our volunteers, and our donors is heartening, and we appreciate all their efforts.

We especially welcome the appointment of Ciara Enright as ‘1 in 1,000’ Co-ordinator, and Rosie Begley, who will provide cover while Eufemia is on maternity leave (Rosie will feature in our next issue), and finally Katie Murphy, PWCF, to TLC4CF as Regional Development Officer.

65 Roses Awareness Week 2012 April Friday 13th –20th Work is in progress for our 65 Roses National Awareness Week, which will take place from Friday 13th to Friday 20th of April. We have been in touch with the major centres around the country and in the next issue of Spectrum, we will have a final list on where you will be able to purchase pins/ trolley coins. If you would like to volunteer for the day, we will be very happy to hear from you.

Alternatively we are inviting all our willing and enthusiastic members to organize their own 65 Roses event during the week: get creative and organize your own entertainment night or challenge, we will provide all the support needed.

cfai AS cHARITY OF THE yEAR Update GSK Charity of the Year 2011 The final total raised by this partnership was over €26,000, and we are very grateful to all at GSK for their efforts.

Experian Charity of the Year 2011/12 This initiative continues until March and monies are still being raised.

UCD Engineering Society UCD Engineering Society has chosen CFAI as their charity of the year for 2012 and this also promises to be an excellent fundraising partnership.

22

Jan/Feb 2012

Dart Exhibitions 2012 February 12th and March (date to be confirmed) We have two major Dart Exhibitions coming up as fundraising initiatives.

On February 12th, Eric Bristow, MBE, World Masters and World Champion Darts player, will be involved in a darts exhibition which will take place in the Brookwood Inn, Corduff, Dublin 15.

Admission is free, however, participants will need to fill the sponsorship cards to be able to play against Eric. For further information on getting involved contact Steve or Robbie at 01 8223286.

The second Darts related event is due to take place in March in Bakers Corner Pub, Blackrock on a date that has yet to be announced. The hero of the night is professional darts player Wayne “Hawaii 501� Mardle and it is planned to have 18 local players who will need to raise funds for Cystic Fibrosis to be in with a chance to play against the man himself. Details of these events will be made available closer to the date.

Thanks all involved in the organization of both events and indeed all those who will be raising money towards Cystic Fibrosis as we have no doubt they will be a resounding success.

Institute of Technology, Tallaght FM February 7th Institute of Technology, Tallaght student radio station are holding a continuous 33-hour long broadcast to raise funds and awareness of CF in the college on Wednesday 7th February.

Collectors will be out in the grounds throughout the day shaking buckets for CF.

Westpark Fitness Indoor Triathlon 2012 March 10th We are delighted to be chosen as charity for the Westpark Fitness Indoor Triathlon 2012, for the third year in succession.

The event will take place on March 10th. For sponsorship cards and full details, please contact Alison Kane at Westpark Fitness, Tallaght t: 01 4626911.

Monster Raffle March 16th Theresa Donnelly, CF parent is holding a monster raffle with too many prizes to list here. Full details are on www.cfireland.ie

23

Spectrum / Issue 25

Westport Weekend Wobbler CF West, Co Mayo; March 17th-18th Cystic Fibrosis West Building Fund are delighted to team up with Johnny Oosten for the first ever Greenways Challenge, to raise funds for a much needed isolation unit at Mayo General Hospital (MGH). This will provide the facilities needed to support CF patients in their daily struggle against Cystic Fibrosis. We have a target of raise €1,000,000, so every contribution helps.

‘Westport Weekend Wobbler’, takes place on March 17th and 18th. The weekend involves climbing Croagh Patrick on St. Patrick’s day, dressed up as, you guessed it, St. Patrick! Following this is the Greenway Challenge on March 18th, which involves a picturesque off-road walk/cycle trail that traverses Ireland’s Atlantic coast and follows the old Achill/Westport railway-line.

The 2nd Annual Croagh Patrick challenge commences on the 17th at 12:00, and the climb should take around 2 hours to complete. Participants are invited to dress up as St. Patrick and climb the 2,510ft. Sponsorship cards are available (details below). There will be refreshments in the car park afterwards.

The first “Challenge the Greenway” event will take place on March 18th and this involves completing the Great Western Greenway. The route begins at Achill Sound, then passes through Mulranny and Newport and finally finishes up in Westport. Participants can walk, cycle or both. The distance of the route is approximately 26 miles/43km.

Why not set yourself a goal and take part in both while fundraising for a great cause. For further information on these events, contact Niall Abberton on 083 1163179 or visit www.cfwest. ie for the Croagh Patrick Challenge and contact Johnny Oosten on 087 9828 015 / 094 90 23343 or visit www.challengethegreenway.com for Challenge the Greenways.

Please note – if you are taking part in both events you need to register your name with Niall and Johnny however you need only one sponsorship card which you will receive from Johnny.

24

Jan/Feb 2012

Rome Marathon 2012 Everyone’s a Winner – Team CF The Rome marathon will take place on March 18th 2012 and we have still places available.

A marathon is an exciting experience in itself, however, Rome will offer much more than that with its beautiful monuments and history! The fundraising target is €2,500 and the package includes return flight, 4 nights’ accommodation in a twin room in a centrally located hotel (single room available with supplement), and race entry.

If you would like to take part or you have a group of friends interested in it, please contact us as soon as possible.

Biking for CF Easter Sunday John Travers of BOC Gas, and his friend are fundraising by organising a motorcycle run on Easter Sunday with a start time of 2pm. The route, starting from Farresll’s pub in Killeen goes through Castledermot, Carlow, Kilkenny, Ballyragget, Durrow, Abbeyleix, Portlaoise, Stradbally and back to Farrell’s in Killeen where tea, sandwiches and refreshments will be served and a prize draw will be held.

Waterford Emergency Services Kayak for CF Date to be Finalised 15 members of Waterford Gardaí, Waterford Marine Search and Rescue and Tramore Fire Service are Kayaking 65 Miles from Wexford to Wales in aid of the CFAI. They hope to achieve the largest single group to attempt this crossing. All funds are being ring-fenced for a proposed adult CF facility in Waterford Regional Hospital. So, c’mon, all you Waterford, Wexford and South Kilkenny CF supporters, let’s get behind the lads in their Trojan effort to raise funds.

Volunteers to help with fundraising should call Alan Magner on 087 9257105 (or at Waterford Garda station) or leave a comment on their Facebook page: www.facebook.com/ WaterfordCysticFibrosis.

Waterford Emergency Services Kayak For Cystic Fibrosis.

We are excited to be part of this amazing fundraising effort and we would like to wish good luck to all those involved (Waterford Branch members please call Martin Cahill on 087 2627326 or 01 4962433).

25

Spectrum / Issue 25

Fundraising calendar Listings There is a variety of events coming up in the next months, some of which are already listed on our fundraising calendar.

If you think something is missing, or you are aware of an event that’s coming up and it is not listed, please let us know at fundraising@cfireland.ie or esolinas@cfireland.ie.

Also if you are aware of any initiative/club etc. looking for submissions for charity of choice, please let us know.

Paddy Kierans Memorial Poland Walk 2012 23rd September-2nd October 2012 We are delighted to introduce you to our 2012 national fundraising walk to Poland: the two locations chosen for the trip are Krakow and Zakopane.

As Krakow is a city that has developed over many centuries, it provides a showcase setting for many various styles of architecture, with its historic center which includes the Old Town, Kazimierz and the Wawel Castle – included as the first of its kind on the list of UNESCO World Heritage Sites in 1978. Krakow is also well known for its parks and gardens and it will, without doubt, offer an amazing experience for all.

The second stop of our walk is the stunning Zakopane, which is located approximately two hours from Krakow and on foot of the Tatra Mountain and National Park. Its amazing views and surroundings will accompany the group in visiting waterfalls, taste tea in the local shelters and it will be soon clear why this is one of the most popular choices for mountaineering tourism. Total cost per person: €2,560 (Single supplement applies on request €260).

The availability is limited and places will be allocated on a first come first served basis. Further details are available in the enclosed brochure.

Krakow is one of the chosen destinations for the Paddy Kierans walk this year.

Zakopane is also on the itinerary for the Paddy Kierans walk this year.

New York Marathon 2012 Details to be Announced Shortly We are pleased to announce that we will have a limited number of places this year, so call us if you wish to take part. Full details in next issue.

26

Jan/Feb 2012

Team Eva Ireland to Everest Challenge Completed The extended Boyle family, spanning from Co. Cavan, Co. Meath, Co. Mayo and Co. Donegal, have succeeded in raising €5,465 for the CFAI by getting involved with the Ireland to Everest 32 Step Challenge – an expedition which involved climbing the highest point in each of the 32 counties of Ireland in 2011.

Philip Watt, CEO and Martin Cahill, Fundraising Manager of the CFAI would like to acknowledge the Boyle family for their persistence and dedication throughout the year and to all of those who took part in this challenge to raise much-needed funds for Lung Transplantation in Ireland.

Congrats to the Boyle family on their excellent fundraising.

Pictured above (back row) is Madge Boyle, Donna McTaggart, Martin Cahill (Fundraising Manager, CF), Cian O’Brolchain (Ireland to Everest leader), Shaun Boyle, Lorraine Boyle. Front row: (holding cheque) Catriona Boyle, Eva Boyle, Tina Aughney.

Piano Recital Cheque Presentation to CFAI Annette Andrews, mother of Barry, gave a lunchtime piano recital in the Pavilion, Dún Laoghaire, in order to raise funds for CF.

Pictured above at the cheque presentation is Barry Andrews, Philip Watt CEO CFAI, Annette Andrews and Martin Cahill Fundraising Manager CFAI.

A total of €4,823 was raised for CFAI at this event, and we would like to extend a huge thank you to Annette for being involved.

Emma Keenan MEMORIAL FUND In Associaiton with Life Matters for CF The Emma Keenan Memorial Fund was set up in remembrance of Emma Keenan (PWCF) who passed away very suddenly but peacefully on Sunday May 8th 2011. The youngest in her family, Emma had a brother Paul and a sister Edel. She will be remembered as a great character who was very accepting of her illness and displayed a tremendous amount of courage throughout her short life.

All monies raised through this memorial fund will go to forthcoming building developments for a new out-patient unit at Our Lady of Lourdes Hospital Drogheda, Co. Louth where Emma attended.

Emma Keenan (RIP).

27

Spectrum / Issue 25

Midlands Branch Fundraising in Mullingar During Summer 2011 Barry Leonard, Damien Clogher and Robert Lynch (all from Mullingar) took part in the Gaelforce West event 2011 in Westport. They were successful in raising €5,000 for the CF Midlands Branch and a further €5,000 for the Mater Hospital Transplant Unit.

A presentation was made to Gerry Johnson (Branch Treasurer) at an event in Matt Cullen’s Bridge Bar, Mullingar.

Well done to all.

cAVAN bRANCH fUNDRAISING Summary of Recent Events The Cavan Branch have been busy fundraising recently, and would like to acknowledge the following events and donations:

28

Students from St Mogue’s College, Bawnboy, Co. Cavan climbed Kilimanjaro and at the cheque presentation to the Cavan Branch of CFAI were (L-R): Neasán Neary, Greg McGovern, teacher Janet Moore, Michaela Bannon, Ciara Simmons, Aishling Smith, Aoife McGovern and College Principal Anne Conahan; front row (L-R) - Liam Bannon and Ray Dunne.

Among the survivors of the Cuilcagh Climb, in aid of the Cavan Branch of CFAI, were (L-R) Conor Higgins PWCF, Mary Lynch, Dermot Condon, Michael Higgins Jnr, Michael Higgins Snr, Christopher Higgins, Kiaran McBreen and Martin Higgins.

Friends of the Cavan Branch of CFAI from Mountnugent have been fundraising for the branch for 28 years and at the presentation of the proceeds from their 2011 Draw were; Back row (L-R) Lorraine Brady, Fiona Cooke, Audrey Brady, Brigid Kenny, Denise Reilly and Tess Brady. Front row (L-R) Sarah Brady, Raymond Dunne, Mary Greene and Rosaleen Cronin, Treasurer of Cavan Branch CFAI. Pic: Aiden McCabe

Daniel O’Donnell with the organising committee of the 33rd Ballinagh Concert. Back row (L-r) Tom Moore, Sandra O’Reilly, Mel Doherty, Gerry Brady, Dessie Ronan, Tony Corr, Daniel O’Donnell, John Leddy, Peter Fitzsimons, Felix Gormley and Raymond Dunne.

Front row (L-R) Eileen Delaney, Pauline Donohoe, Mary Dunne, Patsy McGlynn, Mary Tyler, Margaret Fitzgerald and Bridie Powell.

Jan/Feb 2012

Calendar of Key Events February ● Love your Lungs’ Day / 14th February / www.irishthoracicsociety.com/ ● Rare Diseases Day (RDDay) on 29th February 2012 March ● Concert for CF Children’s Centre in Drogheda Hospital on 3rd March at Drogheda Arts Centre ● Westport Weekend Wobbler, 17-18th March ● Rome Marathon 18th March April ● CFAI Annual Conference, White’s Hotel Wexford, 13-15th April ● Cystic Fibrosis National Awareness Week 13th-20th April

● 65 Roses Day on 20th April 2012 CFAI National Collection Day June ● ‘1 in 1000’/Flora Women’s Mini Marathon on 4th June 2012 / www.florawomensminimarathon.ie ● European Cystic Fibrosis Society Conference, Convention Centre Dublin on 6-9th June 2012 / www.ecfs.eu ● CFWW/CFE/CFAI European CF Patient Advocacy Conference on 6th June 2012, Convention Centre Dublin October ● Dublin City Marathon on 29th October 2012 / www.dublinmarathon.ie

Visit the events calendar on www.cfireland.ie for more information or locall 1890 311211.

Local Branch Contacts Carlow Leigh Bolger 059 913 0009

Eastern (inc Dublin) Mary McCarroll 087 411 9812

Limerick Owen Kirby 087 967 9176

Sligo Iris Murphy 086 825 8525

Cavan Karen Keoghan 049 437 1988

Dundalk Adrian O’Hagan 042 933 5994

Louth Peter Hughes 087 312 4589

Tipperary Mandy Quigley 052 32 096

Clare Kenneth Flanagan 086 222 2290

Galway Marie Brennan 086 817 8552

Mayo Pádraig Burns 087 686 7560

Waterford Bernadette Power 051 64 1913

Southern (Cork) Cathy Carlton 086 893 4335

Kildare Oliver Delaney 087 238 1208

Meath Loretta Allen Byrne 087 205 8778

Wexford Fiona Bodels 086 603 7470

Denise Taylor 086 050 0803

Kilkenny Carmel Delaney 086 313 6029

Midlands Gerry Johnson 0902 75 704

Donegal Brendan McLaughlin 074 913 2208

Esther L’Estrange 087 616 0399

● TLC4CF: Contact: Marcella Clancy (086 8390942) and Linda Drennan (087 2255650) ● CF West: Contact: Pádraig Burns 087 6867560 ● Life Matters 4CF: Contact: Loretta Allen Byrne on 087 2058778

29

Spectrum / Issue 25

About the Cystic Fibrosis Association of Ireland (CFAI) The CFAI is a registered charity CHY 6350 that was set up by parents in 1963 to improve the treatment and facilities for people with CF in Ireland. It is a national organisation with many Branches around the country and our members are mostly parents and people with CF. The CFAI is committed to working to improve CF services in Ireland and our recent progress includes: ● Lobbying to ensure that the new national adult CF centre in St Vincent’s University Hospital will be completed ● Providing funding towards new CF Units around the country including Crumlin, Drogheda, Galway, Mayo and Limerick Hospitals ● Funding research ● Campaigning to improve the rate of double lung transplantation in Ireland ● Providing advice and expertise

ISSN ISSN2009-4132 2009-4132 ISSN 2009-4132

Cystic Fibrosis Association of Ireland t: +353 1 496 2433 CF House f: +353 1 496 2201 24 Lower Rathmines Road e: info@cfireland.ie

Dublin 6 w: www.cfireland.ie

Ireland Company Reg: 449954 30

Charity: CHY6350