CFAI Spectrum Issue 30

Nov/Dec 2012

SPECTRUM

Published by the Cystic Fibrosis Association of Ireland

IN THIS ISSUE:

• CF Centre Update • 50th Anniversary of the CFAI Approaches • Information Evenings on new CF Therapies • Christmas Present Ideas • Paddy Kieran’s Memorial Walk 2012 • Fundraising for Hospital Projects • Christmas Carolling for CF Issue 30: Nov/Dec 2012 www.cfireland.ie

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Dear All, CF in-patient backlog in SVUH cleared We are pleased to report that the waiting list of 5 CF patients who needed to access an inpatient room in SVUH over the past couple of weeks has now been cleared. It’s a pity that this was only done in the face of public pressure from the CFAI. Going forward we hope that the Hospital will now fully honour its commitments to provide the adequate number of rooms needed.

Because of the written agreement between the Hospital, the CFAI, the HSE and the lead clinician in SVUH signed in July 2013, there is a clear commitment for the Hospital to provide up to 34 in-patient rooms. We will be meeting with hospital management in the near future to review the operation of this Protocol and to seek to prevent further problems occurring.

Information evenings The two information evenings on new therapies in Dublin and Limerick were very well attended. The CFAI streamed the evenings live and we can report that there were over 150 ‘hits’ on both events – some as far away as Canada and the United States. With thanks to Dr Ed McKone, Dr Barry Linnane and Dr Brian Casserly who provided the inputs.

Remembrance and thanksgiving service to mark our 50th year The CFAI is organising a remembrance and thanksgiving service on Saturday the 23rd February 2013 at 11.45am in the Mary Immaculate Church in Rathmines which will be followed by a light lunch. The excellent Dublin Gospel Choir will contribute to hopefully make it a memorable occasion. The CFAI was established in 1963 and the service is a way of saying a sincere ‘thank-you’ to all who have been involved in the work of the Association over the last 50 years.

Kalydeco The CFAI continues to monitor and to make our views known about Kalydeco (Ivacaftor).

We have advocated that this important drug is provided by the HSE on the one hand and on the other that the drugs company proposes a fair price. Negotiations are continuing and we should have a verdict soon.

With best wishes to you and your family this Christmas from all at CFAI, Philip Watt (CEO) Alica May (Editor)

Cover Photo of Emma Fitzsimons (see PWCF Spotlight, page 14).

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

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Section 01:

LATEST NEWS : Page 2–6 CF In-Patient Backlog in SVUH Cleared Following CFAI Pressure CF Centre Update 50th Anniversary of the CFAI CFAI Information Evenings on New CF Therapies Domiciliary Care Allowance Review Challenge the Greenways Website Wins an Eircom Spider Award Pre-Implantation Genetic Diagnosis Update Passenger Advice on Coughing and Sneezing Needed -Section 02:

CHRISTMAS IDEAS : Page 7–8 CFAI Christmas Cards 2012 Gift Ideas Available from our Online Shop -Section 03:

ENTITLEMENTS : Page 9 Better Energy Homes Scheme -Section 04:

PWCF SPOTLIGHT : Page 10–17 Tai Chi and Me, By Clare Meleady, Co Meath CF or Not, I’m Going After What I Want From Life, By Emma Fitzsimons, Co Dublin My Dublin City Marathon Experience, By Jillian McNulty, Co Longford -Section 05:

EVENT FOCUS : Page 18–20 Paddy Kieran’s Memorial Walk 2012 – Poland Joe Crowley Camino Walk -Section 06:

FUNDRAISING : Page 21–29 Fundraising for Hospital Projects (Waterford and Beaumont) 5k and 10k Santa Dash, 9th December, Clontarf, Dublin Christmas Carolling, 15th December, Temple Bar, Dublin McCabes Pharmacy, Gift Wrapping Service Challenge and Events Overview Thank You --

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LATEST NEWS ∗∗∗

SECTION 01

PAGE 2—6

CF IN-PATIENT BACKLOG IN SVUH CLEARED FOLLOWING CFAI PRESSURE Update 28th November 2012 5 CF patients waiting to be admitted to St Vincent’s University Hospital (SVUH) were given inpatient rooms following the advocacy of the CFAI on the 27th of November. At least one patient had been waiting a week for a room.

On the 27th November the CFAI issued a widely reported press statement pointing out that our patients were entitled to up to 34 beds when necessary in the new Nutley Wing as a consequence of a written agreement (Protocol) agreed by the SVUH, the hospital manager, the CF lead Consultant in SVUH, the HSE and the CFAI in July 2012.

When our press release was issued, there were 28 CF in-patients in SVUH and 5 on the waiting list.

This backlog problem had been building up over two weeks and the CFAI had hoped that it could be resolved internally within SVUH. When it became increasingly clear that the backlog of patients was not being addressed and when worried parents and PWCF contacted us again, the CFAI had to act swiftly in the interests of our patients. We make no apology for having to contact the media and we will do so again if necessary.

Our patient’s health is paramount. If SVUH management had an adequate trouble shooting procedure in place these issues may not have arisen at all. Unfortunately it is not the first time we have had to lobby for the basic rights of our patients in SVUH. The problems in the hospital were first comprehensively identified in the Pollock Report of 2005.

The July 2012 Protocol states that in the new Nutley Wing: • There will be up to 34 rooms for CF in-patients provided when required • 1-2 rooms would be kept free for emergency CF admissions • If the Nutley Wing and 1-2 emergency admissions rooms were full, CF patients would be temporarily accommodated in single rooms in other parts of the hospital and then moved as a priority into the new Nutley wing • These commitments of the Protocol would be monitored and kept under review In our forthcoming meeting with SVUH and the HSE we will seek to know: • Why CF patients have been turned away over the past 2 weeks when the ceiling of 34 rooms had not been exceeded and why was SVUH suddenly able to admit these 5 patients when the CFAI highlighted this issue publically?

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• Why 1-2 rooms in the Nutley wing are not being kept for emergency CF admissions as per the agreed Protocol?

• What specific instructions have been issued by the SVUH management to the bed managers in relation to the implementation of the July Protocol?

• What monitoring mechanisms/troubleshooting process has now been put in place to ensure that these unacceptable delays do not emerge in future?

The CFAI will continue to monitor the operation of the July Protocol closely and we would ask our members who attend SVUH to continue to keep us updated.

CF CENTRE UPDATE Recent Developments Our Lady of Lourdes Hospital, Louth The calls for tender have been sent out for the construction of the CF paediatric out-patient centre in Our Lady of Lourdes Hospital Drogheda and are being assessed at present. Building work is scheduled to commence in February. This is a joint project between CFAI and Life Matters 4 CF (Louth and Meath branches of the CFAI).

Mid-Western Regional Hospital, Limerick CFAI/TLC4CF held a meeting with the hospital manager in the Mid-Western Regional Hospital along with paediatric and adult consultants and members of the multi-disciplinary team. At present, there are some CF patients attending annual assessments where a physiotherapist has not been present. Further, vital annual assessments are being postponed because of the absence of a physiotherapist. The dietitian service also remains stretched – CFAI/TLC4CF are following up on these concerns.

St Vincent’s University Hospital, Dublin In addition to the protocol on room management mentioned previously, the CFAI has also written to the manager of SVUH to seek a meeting around the non-replacement of a CF nurse on maternity leave. Your views would be very welcome in advance of this meeting, in particular those PWCF who have been in St Vincent’s since the new Nutley wing opened. Please contact Helen Whitty with any information on this by calling 01 4962433 or email hwhitty@cfireland.ie.

Temple Street Children’s University Hospital CFAI has received assurances from the HSE that the vacant physiotherapist post in Temple Street Children’s University Hospital will be filled. Interviews were about to take place at the time of going to print.

Beaumont Hospital A fundraising strategy is currently being devised (see fundraising section) for the development of 12 adult isolated ensuite rooms in Beaumont hospital following recommendations from a needs assessment that was recently commissioned by CFAI. Currently, there are only 4 inpatient rooms for 120 adults with CF attending Beaumont Hospital. The CFAI will be meeting with the hospital in December.

Waterford Regional Hospital A fundraising campaign for 4 paediatric in-patient rooms in Waterford Regional Hospital has commenced, bringing together the CFAI branches in the South-West. See fundraising section for more information.

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University Hospital Galway A needs assessment will be undertaken by the CFAI in partnership with the Galway Branch in the future to help inform future priorities for CF adult and paediatric care in the hospital.

50TH ANNIVERSARY OF THE CFAI Remembrance and Thanksgiving Service Scheduled for 23rd February 2013 The CFAI has continued to work on plans for our 50th anniversary, including: • A book tracing the development of the CFAI including a focus on the early years of the association • A remembrance and thanksgiving event at 11:45am on 23rd February 2013 in the Mary Immaculate Church in Rathmines, followed by a light lunch. Live streaming will be available.

Further details will be provided in the New Year. Please note that cross-infection guidelines will be in place.

CFAI INFORMATION EVENINGS ON NEW CF THERAPIES Positive Feedback Received The CFAI have held two information nights on recent and forthcoming therapies/drugs. The first of these took place on Wednesday 7th November in the Ashling Hotel in Dublin. Dr Ed McKone, CF Consultant at St. Vincent’s University Hospital Dublin, was the guest speaker at the event.

Philip Watt also outlined the assessment process for new drugs in Ireland. The information evening was attended by around 50 members. A video stream was made available for people to tune in online and to ask questions during the meeting.

A second information meeting was held in Limerick on 14th November and the guest speakers were Dr Barry Linnane and Dr Brian Casserly of MWRH and about 60 people attended, again with many more watching online.

The feedback from both information meetings has been very positive and we hope to have podcasts from the Limerick meeting on our website shortly in case you missed the meetings.

An information night in Cork is due to be held shortly – keep an eye on our website for further updates.

DOMICILIARY CARE ALLOWANCE REVIEW Consultative Forum Tomás Thompson, CF Advocacy Officer, and Alica May, Services and Information Officer, attended a consultative forum in early November with a selection of other organisations that also made submissions to the Domiciliary Care Allowance Review Group.

As reported in the previous issue of Spectrum, the review group are examining the policy objective of the scheme, medical assessment and appeals processes, including an examination of the duration of review periods for the scheme. The Review Group are expected to make recommendations to the Minister for Social Protection by the end of December 2012 on the basis of their findings. CFAI will keep members updated on any future developments.

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CHALLENGE THE GREENWAY Website Wins a Spider Award The Challenge the Greenway website has won an Eircom Spider Award! The Eircom Spiders Awards recognise and reward Irish businesses for their creativity and innovation in digital media.

The Challenge the Greenway website, which was designed by Sheena Oosten (www. sheenaoosten.com), highlights the annual charity fundraising event, in which participants attempt to complete the 42km Great Western Greenway trail that traverses the idyllic west coast of Ireland. All money raised goes directly towards the building of a specialised day care unit at a Mayo General Hospital for people with Cystic Fibrosis.

Winners of the Charitable & Non-Profit category, Challenge the Greenway, designed by Sheena Oosten. L-R: Caroline Heffernan, CFAI, Des Bishop (Presenter), Julie Crawford, Philip Watt, CFAI.

The ceremony took place in the Convention Centre, Dublin on Thursday 1st November and was attended by Philip Watt, CEO CFAI, and Caroline Heffernan, CF Advocacy Officer CFAI, on behalf of Sheena. Other nominees in the ‘Charitable and Non-Profit Organisations’ section included The Jack and Jill Foundation, Temple Street Children’s Hospital and Trócaire, to mention but a few.

The judges commented that the site ‘demonstrated a cutting edge as it tackled a serious cause in a modern, intuitive and uplifting fashion. The site is both, stylish and current, technically well organised and easy to navigate, a worthy winner.’

Congratulations again to Sheena on behalf of all at CFAI!

A MESSAGE FROM THE KERRY BRANCH Local Support The Kerry Branch meet to discuss all CF related issues and provide support to PWCF, family and friends. All new members are very welcome.

Please contact Colette O’Donoghue Branch Secretary (087 3187461) for any information and future dates of meetings.

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PRE-IMPLANTATION GENETIC DIAGNOSIS UPDATE Irish Medicines Board Grants Licences in Ireland The Irish Independent newspaper reported on 9th November that certain fertility clinics have now been granted licences to screen embryos for genetics disorders, including cystic fibrosis, for the first time.

Pre-Implantation Genetic Diagnosis (PDG) is a technique that allows genetic testing of an embryo prior to implantation and before pregnancy occurs. It is used in conjunction with IVF and allows only those embryos diagnosed as being free of a specific genetic disorder to be transferred into a woman for pregnancy.

The news article revealed that the Irish Medicines Board granted licences to the Beacon CARE Fertility Clinic in Dublin and the Cork Fertility Clinic following rigorous pilot studies and are satisfied that these clinics will carry out the embryo biopsy to a high standard. Couples seeking these tests previously had to go abroad.

The CFAI recognises that Irish couples were already going abroad for the screening and urges those considering this treatment to pursue independent genetic counselling. We understand that this is a sensitive and complex issue for our members and would welcome your input and opinion – please email Alica in the National Office with feedback e:amay@cfireland.ie.

The full news article is available here: www.independent.ie/national-news/clinics-to-begin-testsfor-genetic-disorders-in-embryos-3287931.html

PASSENGER ADVICE ON COUGHING AND SNEEZING NEEDED CFAI Contacts Aer Lingus for Support In response to a suggestion from one of our members, Paulina Hanrahan, the CFAI recently contacted Aer Lingus with the suggestion of promoting good health messages to airline passengers.

Travelling in a confined aircraft space with restricted and shared air supply could increase the risk of picking up infections from other passengers. We suggest that through a brief cabin crew announcement, passengers could be reminded to practice good hygiene by using a tissue whilst sneezing or coughing. This could be supported by posters/inserts in the airlines in-flight magazine with a similar simple message.

Paulina Hanrahan.

We hope that if implemented by Aer Lingus, this simple health and safety message could serve to reduce the possibility of spreading colds, flus and other airborne transmittable disease/viruses for passengers as well as those at particular risk, including people with cystic fibrosis.

Paulina and CFAI are currently waiting to hear back from Aer Lingus and will keep members updated of any future developments in relation to this.

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CHRISTMAS IDEAS ∗∗ SECTION 02

PAGE 7—8

Only a few weeks until Christmas folks! If like most of us you still have the bulk of your shopping to do, why not check out our online store and do your shopping from the comfort of your home.

CFAI Christmas Cards 2012 There are 10 different Christmas cards (see photo to the left) in each pack this year. Each pack costs €6.50 including post and packaging and all proceeds go to CFAI. If you wish to place a large order please contact the main office or email info@cfireland.ie.

Dinners to Make...Things to Bake An easy to use, fun, colourful cook book, which was inspired by Philomena Noyes daughter Debbie who sadly passed away when she was just 16 years old.

Recipes from Darina Allen, Neven Maguire, Rachel Allen and even Daniel O’Donnell are included! The book costs €15 and all proceeds go to the Building Fund at Mayo General Hospital.

Food4Thought Cook Book – Volume 2 Compiled by Breda O’Shaughnessy, Volume 2 of the Food4Thought series offers recipes that are a little more complex, but not Masterchef level.

The book costs €12.50 with all proceeds going to the TLC4CF ‘equipment fund’ to help equip the new CF unit with beds, respirators, monitors etc. Log on to our online shop or contact TLC4CF directly to purchase.

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Can You See What I See? and School is Fun! These books are about a little girl with CF who has a superhero style approach to health challenges. They are heart-warming and fun stories for all kids with practical and positive tips included.

Both books were written by Louise Byrne, parent of Ava Li who has CF. Each book costs €12.50 with all proceeds going to the Life Matters 4 CF project, which hopes to build a new dedicated out-patient unit for PWCF in Our Lady of Lourdes Hospital in Drogheda.

Annette Andrews Piano Recital Annette is a former student of the renowned pianist John O’Conor and grandmother of a child with CF. Following a very successful recital at the Pavilion Theatre, Dun Laoghaire, Annette was invited into the recording studio to record Schubert, Brahms, Ravel, Chopin and Fauré.

The CD is priced at €12.50 with all proceeds going to CFAI.

Never Too Late Written by Isolde McCullagh, this book gives a glimpse into her life and incorporates a series of exercises that help with movement, flexibility and overall health, for people of all ages.

Many have been amazed at her achievements and how she has overcome many of life’s challenges. In this book she shares numerous valuable approaches to every day living...Priced at €10, all proceeds of this book go to CFAI.

A Neutron Walks Into a Bar...

Fun, quirky and informative, ‘A Neutron Walks Into A Bar...’ is a collection of facts, definitions, explanations, biographies and jokes guaranteed to quench a thirst for knowledge, discovery and humour that’s out of the ordinary.

All proceeds of the book go to CF research in associaiton with the CFAI. Now available on Amazon and in bookshops natiowide.

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ENTITLEMENTS ∗∗

SECTION 03

PAGE 9

BETTER ENERGY HOMES SCHEME Support through the Sustainable Energy Authority of Ireland (SEAI) Reduce your energy costs as the cold winter approaches. The Better Energy Homes Scheme provides grants to certain homeowners to improve the energy efficiency of their home.

What can this grant be usd for?

The Better Energy Homes Scheme covers the following energy-saving work: • Roof insulation • Wall insulation, for example, cavity wall, internal dry lining or external insulation • Installation of a high efficiency boiler (>90% efficiency) including a heating controls upgrade • Heating controls upgrade • Building Energy Rating (BER) after the energy saving work is carried out.

• Solar heating How do I know if my home would benefit from energy-saving work?

You can use the Home Energy Self Survey to identify areas in your home which could be improved to increase its energy efficiency.

You can also get a Building Energy Rating (BER) done in advance of any works. A BER assessor will energy rate your home and provide you with an advisory report, which will help identify areas that could be improved to increase the energy efficiency of your home.

How do I qualify for for the scheme?

To qualify for a grant you must: • Be the owner of a dwelling built before 2006 • Use a contractor from SEAI’s registered list • Have a BER carried out after the works are done • Use a BER assessor from SEAI’s National Register • Apply for a minimum amount of €400 with your first application.

Note: you must have grant approval before you buy materials or start any grant-funded energysaving work. If you have already started work, you will not be eligible for a grant.

How do I apply?

You can apply online at www.seai.ie or download an application form (pdf). Online applications will get a response within 3 working days. Postal applications will get a response within 20 working days. SEAI has produced a guide to help with your application, which is also available online.

For more informaton: Sustainable Energy Authority of Ireland t: 1850 927 000 e: hes@seai.ie w: www.seai.ie 9

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PWCF SPOTLIGHT

SECTION 04

PAGE 10—17

TAI CHI AND ME

By Clare Meleady, Co Meath My name is Clare, I am 27 years old and I have Cystic Fibrosis. I’ve lived in Meath my whole life and am very proud to be a Meath woman! Growing up I was always aware of CF but never saw it as a negative. It just meant that my life was a little different but I tried not let it hinder what I wanted to take part in as a kid. Mam and dad never wrapped me up in cotton wool. They let me have every furry small pet under the sun to fulfill my love for animals. They just let me live a normal life within reason and with certain precautions; they never once dampened my dreams or hopes for the future. I think this played a huge part in who I am today. There was never a bar too high that I couldn’t get over. Apart from the high jump in Athletics...now that was just a step too far!

I was always determined to reach my goals even if it meant I would push myself to the limits of my health. When I was a young adult I just thought that you must live life to the full with my health suffering as a result. Now, however, I’ve found a balance between keeping in good health and fulfilling my goals. I was always involved in extracurricular activities like the girl guides, dance, music groups, drama, musicals, horseriding and badminton. They were my passion!

They made me feel like myself and let me express myself in the way I wanted. ‘ I was always determined to reach my goals even if it meant I would push myself to the limits of my health.’

I never much liked secondary school and up until 3rd year I just wanted to leave. I struggled with friends who had bullying tendencies but didn’t see it for a long time. I always bottled things up so never told anyone until years later. I decided I wanted to do transition year which was the best decision I have ever made in my life! I made new friends who are still my best friends now and even met my future husband Barry whom I married last April. It turned my life around and kept me in school!

Clare and Barry on their wedding day.

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After school I went on to study televison production and media communications which I absolutely loved! I have always been a practical person and I thrived in the course as it was all hands on. It was amazing to find a course that looked at other talents apart from just academic qualities. Towards the end I

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struggled a lot with my health and all the work experience that was required. I didn’t want to give in so I pushed myself to the end and did really well.

I began my journey with Tai Chi in 2007 after I graduated from college. Due to the demands of the course and the work experience I was required to do as well as living out on my own, I realised that I just didn’t have the stamina needed for a career. I made the choice to take a break for a year and look at changing the direction in my life. I knew I needed to make changes to my lifestyle in order to improve my health and quality of life. I wanted to find a way to relax as well as boosting my energy levels and improving my breathing. I looked for courses and classes to learn new skills and move forward. I began exploring deeper into holistic therapies and ways that compliment the body, mind and spirit. I went back to college to study reflexology and qualified as a reflexologist after 14 fantastic months of exploring this new world of knowledge. I now needed something to switch off and do something for me. I came across a Tai Chi class and decided to give it a go and see where it would lead me! ‘ I made the choice to take a break for a year and look at changing the direction in my life.’

Firstly, I will tell you a bit about what Tai Chi is.

It’s a low impact, gentle exercise that involves slow graceful dance-like movements of the arms and legs driven by the waist or Dan Tien. It is a Chinese art form which was originally taught as a martial art and some types of Tai Chi can be traced back up to 700 years ago! The fact that it was such an old art form pulled me in straight away and once I saw a demo I was hooked! So I began classes once a week to start.

Since the 20th Century, it has been taught as a way of improving your health and to promote self healing to prevent disease. It is not religious, but based on Taoist philosophy, which I find fascinating! It helps strengthen the muscles and tendons in the body as well as improving posture, relaxing the mind. It is known to help with reducing stress, arthritis, reducing high blood pressure, headaches and help boost the immune system. With all of these benefits it became clear that it was what I was looking for and complimented my CF routine.

From doing Tai Chi I have noticed many things that have changed in my life and in my body and mind. The most important is that I have become more aware of my breath and breathe deeper than I would have previously. I feel I’ve a greater awareness of expanding my lungs more when breathing during exercise and in day to day life.

The major thing I have noticed is that my immune system is much stronger. I fight colds, sinus and chest infections much better and far quicker. It also helps with my digestion and DIOS, which has been crippling for years. Over the last 12 months I have increased my Tai Chi practice and I have literally had half the bouts of blockages. Can I put it all down to Tai Chi alone? Who can say, but I do believe it has played a huge factor in better health. My body is much stronger in my arms, legs, core, shoulders and chest. From a physical point of view, having a stronger upper body helps especially when having chest infections. If I haven’t been practicing, I notice I am a lot sorer from coughing during an exacerbation.

Tai Chi has helped me a lot in coping with stress in my life. There is no avoiding stress in life as we all know so it’s great to find ways to tackle and cope with it. Stress is in everyone’s life, whether it’s a person stressing you out, a situation, a job, an illness like CF...we will always be put into stressful situations, but it’s how we react to them that matters. Trying not to get worked up and pulled in can be a challenge at times but it’s not always the right reaction. I will admit, I 11

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can be a big ball of stress, worry and anxiety – it’s just the way I am! So Tai Chi has been a godsend to my life! You might ask how does it help?

Tai Chi is a meditation through movement, it helps bring you into the moment hence switching off your mind, stopping it from racing, calming the mind and heightening your awareness of nobody but yourself. By practicing Tai Chi and giving into it, it allows you to switch off the sympathetic nervous system, which is that feeling of your mind racing and thinking of a million and one things, and letting the para sympathetic nervous system take over; the feeling of calm and relaxation then begins.

Clare practices many different forms of Tai Chi.

Reducing stress alone in your life can have a huge affect on your health as the stresses and strains in life can lead to illness, acute and chronic. It helps me slow down in life where it is needed and in turn aids my bowel and reduces the chance of an IBS episode and leading to blockages. I am trying to take the lessons from Tai Chi class and bring them into my life in times of stress. It is a working progress but I know the knowledge is there whether I choose to use it or not!

Another interesting fact is that the words ‘Tai Chi’ mean ‘Stop Fighting’. This refers to the fight from within us as humans. To learn to stop the fight from within and also with people in your life around you. This leads to learning to accept things we cannot change in our lives. I have learned only recently while writing this, the meaning of Acceptance. When this was put to me by my instructor, I thought ‘how have I missed this?’. I have been occupied with being a perfectionist, something I have fought with my whole life – a fear of failure. This is one aspect in my life I need to work on. It is a major lesson in life that everyone can learn and has been personally beneficial for me, living with a chronic illness. Accepting any illness, like CF, even though you are born with it or are diagnosed with it in later life, can be a challenge for some, including myself at times. In Tai Chi, I have found it has taught me to accept my limits and abilities, just as in life to accept my condition and limitations. Acceptance in our lives allows us to move forward and grow as a person.

It is such an amazing skill to learn that can easily be made part of your life. No equipment is needed, bar a room that has enough room or outdoor space to move around in. I work within about 9 foot long and arms width is plenty. That is a huge plus!

Clare practicing Tai Chi, yang form.

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It is easy to work into daily routine as you can do as much or as little as you want. From 5 mins to 2 hours, whatever you are in the mood for. You can do a full form (yang 24 takes minimum of 6 mins), you can chose a part of the form to work on, you can spend hours doing whatever forms and centering exercises you want,

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it’s down to how you are feeling on the day. You can do it anywhere too so even if you’re out for a walk on a beach or park, sure you can just take a few minutes to relax and do some!

There are hundreds of forms and different styles from the different regions of China; for example, Yang, Chen, Li, Hao and Old Wu style. You could spend a lifetime training and never be perfect or know them all. I learned that that’s not the point of it like in other exercises or sports. It’s about living in the moment, enjoying it and relaxing into it, enjoying the quiet within, connecting your body and mind together and feeling your chi flow through the meridians in your body and cleansing you. I have also been introduced to Qi gong which is similar, has the same benfits and compliments a Tai Chi training session. I could rave about it all day too, but that’s another story!

I have met many people in the last 5 years and I am one of the only ones with a chronic illness.

It is for people of any age in every walk of life. Whether you struggle with coping with stressors in your life, if you suffer from depression, if you have an illness or complaint, if you want to do light exercise or if you simply want to learn a new art form – it is enjoyable, beautiful and hugely beneficial. I cannot imagine my life without it!

It is now 5 years later and I have kept at it. The Exercise Grant that is available from the Cystic Fibrosis Association of Ireland has allowed me to continue my training and made it much easier financially in these recessionary times. It has been a huge help to me especially in some weeks when you have to choose to pay a bill or have the luxury of going to class. I am so grateful to be able to avail of this grant as I can’t imagine my life without Tai Chi! It has taken a huge weight off my shoulders!

I have trained with four wonderful trainers from both Ireland and China. They have taught me wonderful things; a lot has gone over my head I’m sure but I know that in time it will all make sense! I have learned many beautiful yang style forms which I will continue to practice forever more. I have been increasing my training gradually over the last year and half in the hope of becoming an instructor in 2013 and to share all I’ve learned. It will be a lifetime of learning and I am up for the challenge! It has given me so much so far, so I’m looking forward to continuing the journey and seeing where it takes me.

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CF OR NOT, I’M GOING AFTER WHAT I WANT FROM LIFE

By Emma Fitzsimons, Co Dublin My name is Emma Fitzsimons, I am 22 years old and I live in Dublin. I’ve got two brothers, a half-brother and a half-sister. Thankfully I’m the only person in my family who has CF. I was diagnosed when I was around 5 months old. My mam says that it took three attempts of the sweat test before I was diagnosed – the first two were borderline – I don’t quite remember but so they tell me! I was pretty sick as a baby, I spent some months in Temple Street Hospital. My mam says I was pretty much at the worst end of the scale. But now, like I said at the beginning, I’ve made it to 22 – wohoo!

I’m pretty lucky as far as CF goes (but let’s just say I’ve yet to win the Lotto!). My lung function has always been around mid-to-high 90’s. I go to the gym 4-5 days a week. I’m sure you’ve all heard it before but I really can’t stress the importance of exercise in CF. I’m not an expert, but I honestly think it’s the reason I am so well.

Right now my FEV1 is a little below my baseline.

Even a course of IV’s didn’t bring it up. I was so disappointed, it was the first time for me that IV’s didn’t sort me right out.

Emma is pursuing a career in music.

While I was on IV’s I hadn’t the energy to do any exercise, as you can probably understand. And if I’m honest with myself, I had been slacking some weeks prior to that, so that didn’t do me any favours. Obviously :(

But now that I’m finished them, I’m back to exercising everyday. I am determined to bring my lung function back up. I also walk my dog Alfie, AKA the love of my life, everyday. He is a yellow labrador, he is the funniest thing ever and I guess he helps me stay fit too! And I suppose I am pretty compliant with meds, nebs and physio too, which also makes a huge difference.

Aside from all the boring CF stuff, I am a singer. I’m sure that’s contributed towards me staying so well! I have sang since I can remember – it’s all I’ve ever wanted to do. I did the Leaving Cert in 2009 and deferred an offer for college to pursue a career in music. So now all I do is write songs!:) I have recorded some original material, and I’m still trying to figure out a sound for me. I also play 14

Emma with her dog Alfie.

Nov/Dec 2012

gigs! I have a wonderful following on YouTube, people are so supportive and kind. I get a lot of encouraging messages from people to never give up and to chase my dreams. ‘ Pick yourself back up and keep fighting, go after what you want in life, head on!’

I know on my bad days those messages from people really help me to stay strong. So I was inspired to write a song for people like me! You guys who have to fight through life, as tough as it can be, while simultaneously battling CF. I recorded this song for YouTube, it’s called ‘Follow the Rainbow’ and it’s uplifting I swear!

Emma performing at a gig.

In the video I state at the beginning that I wrote the song thinking about the pain of rejection from trying to pursue a music career. I really wrote it to help me through those bad CF days when I’m on IV’s and my lung function drops and everything just gets a little bit scary. I didn’t want to mention CF in the video as I’m not sure whether people that don’t have CF would understand. But if you watch it, you’ll know the real reason I wrote it; it can be our little secret!:) I hope it might inspire you to pick yourself back up and keep fighting, go after what you want in life, head on!

So that’s where I’m at right now, I’m planning on spending some time in London next year to do some gigs and get my name out – I suppose and to see where the road takes me!

CF or not, I’m going after what I want from life, even if I’ve to take a suitcase of meds with me!

And I hope you guys do the same!

If anyone would like to check out my YouTube page you’ll find me at: youtube.com/emmafitzsimons I have a facebook too! It’s facebook.com/emma-fitzsimons-fan-club And lastly, I have Twitter! If you want to check it out, my address is: twitter.com/emmassongs.

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MY DUBLIN CITY MARATHON EXPERIENCE

By Jillian McNulty, Co Longford I’m 36 years old and if anyone told me this time last year that I would train for and complete a marathon within a year I would have laughed at them!

At that time I was in and out of hospital every 4-6 weeks and staying for an average of 6 weeks at a time. I was just over surgery for reflux and had been on a liquid diet as a result for 8 months, losing 14kg in the process. I was doing very little exercise, maybe a 20 minute walk a few times a week and that was even an effort. Then I was told earlier this year that my PFT’s weren’t going to get any better – they had been at the same level for roughly 2 years. The 20% I had lost wasn’t coming back and so there were tears, loads of tears.

There and then I decided I wasn’t going to accept it, I had to at least try to gain something back; I wasn’t just going to give in and let it happen without a fight. A few days later I saw a TV advert for the Spartan Challenge where 26 people would be trained to take part in the Dublin City Marathon. There was a voting process in which I came second in the country. Then there was an interview with 52 finalists out of roughly 6,700 people that had entered. When I first entered the competition online in February I started walking more and more each day, and was comfortably walking 10km a day – then I got the phonecall to say I was chosen as Longford’s Spartan.

I ended up in hospital for a month straight away but Denise my physiotherapist (who I am convinced got me on the road to actually running!) had followed my progress in the competition and we decided to start running. OH MY GOD, what a shock I was in for! At first I felt like I was dying, my legs hurt and I was coughing so much it was nearly unbearable. The first few days of training I left the gym looking like a right mess and dreaded walking back to my room because I looked so bad! But after two and a half weeks I started to notice a major improvement – I was running comfortably, there was no huffing and puffing, no coughing and spluttering – I had turned a corner. Suddenly I started looking forward to my daily runs in the hospital gym! In the last week I was doing so well, running flat out for over 30 minutes and I wasn’t even out of breath.

When I got home I continued running and even though I still needed to be admitted to hospital my stays were only for a month and I didn’t feel sick, I was still running throughout my exacerbations. As part of the Spartan Challenge I was entered into the Dublin Race Series in which I completed a 5 mile, a 10km, a 10 mile and the half marathon in the Phoenix Park. I even took part in the Fingal 10km while I was an in-patient. Training in the last 6 weeks was very, very tough; I had once weekly long runs which started at 12 miles and went right up to 20 miles. I found these particularly tiring as the longer miles took 3-4 hours each day.

Jillian, Longford Spartan, and Karl.

16

A month before the marathon I woke up and was stuffed with a cold, had tonsilitis and chronic sinusitis. When I was told that I needed to be admitted I was still hopeful as there were 4 weeks left until the big day. My trainer came in to the hospital and met with my consultant who dropped

Nov/Dec 2012

the bombshell that he was very concerned as I hadn’t been this sick in a long time. If I got the go ahead I had to walk instead of run so that I wouldn’t put too much stress on my body; he wasn’t sure that my body would cope with 26 miles as I had only been training for 5 months. I was in tears, I wanted to run, I had trained to run but if that’s what it took for him to allow me to go ahead then that’s what I had to do. ‘ I would urge anyone who isn’t exercising to get out there and start, you can do anything you set your mind to.’

It stayed this way for another two weeks and I remained persistant that I was doing this no matter what as I felt fine. My consultant suggested I do a supervised 16 mile run with my physiotherapist and if I could do this with no problems then he would give the go ahead to do the marathon.

Jillian and her well earned Dublin City Marathon medal.

Only 10 days before the marathon we set out on a 16 mile route in four laps of 4 miles with one physiotherapist per each slot of 4 miles. I did great, I blitzed it and finally they were more confident that my body was able to cope. However, 4 days later my PFT’s took a massive nosedive and again the doubts and worries arose. It was 6 days until the marathon when my consultant came to see me and asked if I still really wanted to do this; I told him that I really did and tried to hold back my tears. His face said it all and I’ll admit I lost a little bit of hope that day; he said he’d give me until Friday to concentrate on clearance and exercise and we’d see what happened.

Thankfully on Friday (3 days before the marathon) they done PFT’s again and they had jumped back up to the level they had been over 2 years before so I got the go ahead! The days before the marathon were absolutely mental with newspaper and radio interviews. Some of the newspapers reported that I was the first or second person with CF to do a marathon, which wasn’t true as I knew of other people with CF who had done a marathon before me so that was frustrating.

Many PWCF have contacted me asking me how I did it, knowing that I wasn’t exactly hell bent on exercise until this year. Others had practically given up but after seeing my progress over the 5 months, decided to give CF a good kick in the backside and get out there and try not to let it win. I will never not exercise again, running has made such a difference to my life, my PFT’s have dramatically improved and I feel so good after running – it’s like my lungs open up and all the air gets into them. It’s something I will continue to do.

As well as creating positive awareness for CF I also raised nearly €900, which brings to a total of €5,300 that I have raised for CF in the last year alone. In June 2013 I will cycle 255km from Ballina to Dublin to raise funds for CF and St Vincent’s Hospital, and already I have loads of support from people! Right now I am resting up after the marathon as it has taken a lot out of me, so easy does it for the next few weeks and then it’s onto training for my cycle in June.

I would urge anyone who isn’t exercising to get out there and start, you can do anything you set your mind to, but be careful don’t over do it. I don’t know if I will ever take part in another full marathon because it is very demanding and very tiring on the body, but I intend to continue to run 5km, 10km and even half marathons. I never thought I would be capable of even thinking about completing a full marathon, but I’m very proud that I achieved it.

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EVENT FOCUS ∗∗∗

SECTION 05

PAGE 18—20

PADDY KIERAN’S MEMORIAL WALK 2012 – POLAND Committee Member Review The Cystic Fibrosis walkers this year were challenged in some ways more than previous years and in truth each walker would say it was probably an experience of a lifetime, a fundraising walk never to be forgotten. Most of us have met members of the large Polish community living in Ireland, indeed people with whom we share a lot both in nature and in humour, but this year’s Cystic Fibrosis walk endorsed what we feel and endeared us all the more both to the people and the country especially when we found that Cystic Fibrosis is a common challenge.

Participants of the Paddy Kierans Memorial Walk to Poland, 2012.

It was an early start on Sunday 23rd September for our 10 day journey. After a 2hr 40 min flight we arrived in Krakow Airport, which is a small airport and caused no delays. This meant we were able to transfer with speed to a busy and enchanting city in less than an hour. Krakow, situated in the south of Poland, is a most beautiful and welcoming city in which one was totally relaxed. But after an initial hearty lunch we immediately set about our task. The initial walks went through this city which is adorned with more than 120 catholic churches. It is a city which proudly honours Pope John Paul II, who served as a curate for many years and made Archbishop there in 1964.

One could not go to Krakow without observing the amount of streets, squares and buildings that pay homage to the man not to mention the number of statues we came across.

We of course walked up Wawel Castle which stands majestically over the Vistula River and is iconic of the city. The next two days we travelled out to Ojcowski Park Narodowy, which is less than an hour from the city centre, and walked through tricky trails. At the Lokietek Cave we saw the craftsmanship of erosion and wandered in awe at the perceived shapes. We also managed not to disturb the bats, to many a delight. A visit to Auswitch and later by some to Oscar Schindler’s Factory really focused the mind. This was followed by a visit to the Jewish 18

Nov/Dec 2012

area in the city where there lived approximately 70,000 people before the second world war and subsequently reduced to a current practicing population of just over 200.

On the 28th September after our customary honorary night when we were all delighted this year to honour and make a presentation to Catherine Walshe in appreciation for her contribution to so many walks over the years, we left Krakow. Our next stop was Zakopane further south.

This is a mountainous area popular for winter Ski but with no snow it offered beautiful walking landscapes. The after walk memory here was the celestial rafting down the Dunajec River with it’s incredible tranquility and scenery to match.

The walks were challenging, the visit to Auswitch concentration camp was daunting, the trip to Wieliczka Salt Mines near Krakow was fascinating, the visit by some to the monastery of St. Maria Faustina Kowalska was most spiritual, but meeting the Cystic Fibrosis Association of Poland was most special and enlighting. With this visit we found the per capita problem of Cystic Fibrosis in Ireland is 10 times more intense than in Poland. CF Poland are celebrating their 25th year and as our association is entering its 50th year, we share amongst many things these major milestones.

We were cordially invited to meet with the CF Poland Association in Rabka en route back from Zakopane to Krakow. We were hosted to a professional and most welcoming presentation of the status of CF in Poland by Ms Dorota Hedwig, Chairperson, and Anna Skoczylas-Ligocka, the CEO. From our side Callie O’Sullivan with little notice addressed the meeting and gave a most professional talk on the Irish CF status. This was followed by a short walk around the hospital grounds where we heard about their soon to be opened isolation facilities and an address by Professor Henryk Mazurek who is a doctor specialising on Cystic Fibrosis. In short, the parallels between Ireland and Poland were extremely bonding and the challenges they face in Poland are common to what we have gone through in the past and what we are now facing. Their longest surviving transplant patient is six years hence they were extremely delighted and encouraged to meet with Declan O’Doherty, a staunch twelve year survivor in our midst. This meeting alone made our journey most worthwhile and constructive. It is now decided to meet and share notes if possible wherever future walks take us.

We are delighted to confirm that invitations are now underway to join us in ‘A taste of Tuscany’ Fundraising Walk 2013. As is the case funds raised will assist towards the funding of research and general provision of support services to persons with Cystic Fibrosis, to increase knowledge and awareness of CF and to give advice and support to people with Cystic Fibrosis and their families.

L-R: Catherine Walsh, Birr, Declan O’Doherty, PWCF, Transplant recipient, who completed his third walk, others being in San Francisco and Turkey, Caroline Dunphy, Clane, Hugh Malone, Mountmellick and Marie Coen, Athlone!

Participants of the Paddy Kierans Memorial Walk to Poland, 2012.

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JOE CROWLEY CAMINO WALK €19k Raised for CFAI A big THANK YOU to Joe Crowley who braved the Camino Walk and raised an outstanding €19k for the Cystic Fibrosis Association of Ireland and the Pharmacy Benevolent Fund. Joe Crowley walked the Santiago de Compostela (The Way of St James) Joe’s journey, followed the ancient pilgrimage route in Northern Spain, beginning at the foot of the Pyrenees on August 24th and finished in Santiago in the north-west corner of Spain in late September 2012, a distance of 800km. See below a record in poetry style of his journey...

The Peregrino A dream, a thought, a deed.

Preparation, training, equipping.

Looking forward, trepidation, angst.

Locum, fundraise, organise.

Pack, weigh, empty, re-pack.

Boots, shoes, trainers.

Dublin. Biarritz. St Jean Pied de Port.

Credential, walk, Orisson.

Sleep, wake, walk, rain.

Roncevalles 790k to go!

Walk, sun, talk, eat.

Buenos Dias! Hola! Buen Camino!

Dream, meditate, debate.

Think, resolve, relax.

Walk, sun, talk, sleep.

Colours, creeds and ages all.

Churches, cathedrals, masses.

Fields, hills, mountains.

Villages, towns, cities.

Albergues, Casa Rurales, Hotels.

Bocadillo, Zumo Naraja, Cafe con Leche.

Menu Peregrino, Menu del Dia, Vino Tinto, Water.

Walk, sun, talk, sleep.

Cellulitis, sun stroke, bed bug bites.

Blisters, ankles, feet, backs.

Contemplation, realisation, relaxation, exploration.

Roman roads, ancient bridges, Wine fountain.

Friendly people, smiling walkers, sun shining.

Vineyards, meseta, meadows, farmyards.

Pamplona, Logrono, Burgos, Leon.

Galicia like home 150k to go!

Photos, diaries, new found friends.

Cruz Ferro, O Cebreiro, Campostela.

Tears, laughter, sadness, joy.

Rational, emotional.

Mind rested, body tired.

Masses of people smiling all.

Is this the real world?

No! It’s the Camino!

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Nov/Dec 2012

FUNDRAISING ∗∗∗

SECTION 06

PAGE 21—29

Once again, we take this opportunity to thank our volunteers and supporters for your trojan efforts to fundraise on behalf of CFAI. Given the economic climate, we appreciate how difficult it is to maintain and increase income from community fundraising in particular. So thank you all very much for your continued support.

FUNDRAISING FOR HOSPITAL PROJECTS Waterford Hospital and Beaumont Hospital Dublin The fundraising team at CF House are committed to giving our best efforts to two major capital projects, and with the co-operation of parents, families and friends of CF, we look forward to providing fundraising support to CFAI in meeting the objectives of both projects briefly described below. CFAI staff Eufemia, Ciara, Rosie and Martin are strongly committed to this. With the continued co-operation and broadening of fundraising efforts of all, we can make these projects memorable successes and milestones in the development of facilities for PWCF in Ireland.

1. Waterford Hospital Project The green light for the refurbishment of 4 rooms to provide isolated ensuite paediatric facilities has finally been given. The present and future value of this project to children in the areas of Waterford, Wexford, Kilkenny, Tipperary and Carlow is inestimable and bodes well for those attending Waterford Hospital. Dr. A. Das, Paediatric Consultant, and CF Clinical Nurse Specialist Anne Doyle have demonstrated their active commitment to the project by attending two initial meetings with CF parents in recent weeks to explain the project. Martin Cahill and Rosie Begley are co-ordinating the project from CF House and locally with support for fundraising events.

A fundraising target of €250,000 is set for this project and we look forward to working with parents and branches concerned to complete the project on time. It is necessary to contain all funds in a dedicated account for this project for a variety of reasons, not least that of taxexemption and charitable status. 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.

Philip Watt, CEO, will officially launch this fundraising initiative in the Rita Nolan suite at Dooleys Hotel, the Quays, Waterford, on Wednesday 5th December. Many thanks to the Darrer family, June, Tina and Margaret for your support to CFAI in provision of facilities for fundraising events at Dooleys Hotel. Please accept both our deep appreciation for your support, and also our sincere condolences on your recent sad loss of Brendan, husband and father. Ar dheis De go raibh a Ainm.

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2. Beaumont Hospital Project Following a needs assessment, 12 adult isolated ensuite rooms are reported to be required at Beaumont Hospital. This is a major capital project, and again, will greatly enhance facilities for PWCF from north Dublin and environs.

Beaumont Hospital is one of three major centres in Ireland for adult Cystic Fibrosis care, yet at present there are only 4 in-patient rooms for CF patients. Recent research and international standards show that 12 CF in-patient 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.

A steering group has been formed, led by Mary McCarroll, CF parent and Board Director of CFAI, with CFAI Chair John Coleman, and supported by Martin and Rosie at CF House. The success of this project depends on achieving a fundraising target of €2.5m over the next 3 to 4 years. Some major initiatives are currently in the planning stages and will be published on our website www.cfireland.ie and regularly in Spectrum also.

Concentrated fundraising efforts from the CF community, particularly parents, friends of the association, and PWCF availing of the facilities both now and in the future, is a key element in achieving this major objective. Please call Martin or Rosie for fundraising support at 1890 311 211.

As with the Waterford Hospital Project, it is necessary to contain all funds in a dedicated account for this project for a variety of reasons, not least that of tax-exemption and charitable status. 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.

5K AND 10K SANTA DASH Saturday 9th December, Clontarf, Dublin A Santa Dash will take place on Saturday 9th December in Clontarf, Dublin. Walkers, runners and children are welcome in both events which include a 5km and 10km stretch. The run will take place on the beach on North Bull Island, and starts at 2pm.

To join ‘Team CFAI’ you must register at the following link: www.multisports.ie For more info log on to: www.santadash.ie.

For sponsorship card contact us at 01 4962433 or email Rosie at rbegley@cfireland.ie or Martin at mcahill@cfireland.ie 22

Nov/Dec 2012

CHRISTMAS CAROLLING Saturday 15th December, Temple Bar, Dublin CFAI will be carol singing at Temple Bar, Dublin on December 15th spreading Christmas cheer for passing shoppers. We are looking for volunteers to support our wonderful acapella group by helping with our bucket collection from 2.30pm to 4.00pm and 4.30pm to 6.30pm.

Please email Ciara at cenright@cfireland.ie if interested in some Christmas fun whilst helping Cystic Fibrosis.

MCCABES PHARMACY Christmas Gift Wrapping Service McCabe’s Pharmacy is fundraising for the CFAI over the Christmas period with a gift-wrapping initiative. When any customer buys a gift in McCabe’s Pharmacy, staff will gift-wrap it in return for a donation towards the CFAI. The CFAI is McCabe’s Pharmacy’s nominated Charity of the Year and the family pharmacy chain has already completed a number of fundraising drives. To coincide with Cystic Fibrosis Awareness Week, pins and trolley coins were available to purchases from all 21 branches of McCabe’s Pharmacy with proceeds going directly to CFAI. Staff also raised much needed funds by taking part in the Mini-Marathon.

Pictured is Martin Cahill, Fundraising Manager with the Cystic Fibrosis Association of Ireland and Sharen McCabe, Managing Director of McCabe’s Pharmacy.

Sharon McCabe, Managing Director, McCabe’s Pharmacy said: “We are delighted to be raising funds for Cystic Fibrosis, which is very close to our hearts. Our team has really got involved in the fundraising drives and we look forward to a busy Christmas of wrapping gifts in aid of the CFAI.” Speaking at the launch of the Christmas gift-wrapping fundraiser, Martin Cahill, Fundraising Manager with the Cystic Fibrosis Association of Ireland said, “We rely heavily on the support of the public and so we really appreciate the fundraising activities by McCabe’s Pharmacy.”

They will also be selling our Christmas Cards (ten different designs in a pack) for €6.50!

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ARMY NO 1 BAND CONCERT Wednesday 19th December, College Green, Dublin The Army No 1 Band will perform in concert with seasonal music at the Bank of Ireland building, College Green, Dublin 2 on Wednesday 19th December from 1-2pm. All proceeds raised will be donated to CFAI. CFAI is the charity of choice of Rev. Fr. Bob McCabe (chaplain to the forces) who tells us that his two reasons for choosing our charity are firstly that ‘CF’ are his designatory letters, and secondly, he was impressed by the description of the meaning of ‘65 Roses’ on our billboard posters. Thank you, Fr. Bob, for choosing CFAI.

NORTH COUNTY – DUBLIN MACRA CFAI is Charity of Choice for 2013 We are delighted to be chosen by North County – Dublin Macra as their charity of choice for 2013. Macra is an organisation for young people between the ages of 17 and 35 who are interested getting involved in sports, travel, drama, debating, or just want to meet new people and have some fun!

Cystic Fibrosis is very close to their hearts after being saddened by the passing of one of their friends and that’s why their fundraising efforts in 2013 will go to raise funds and awareness for Cystic Fibrosis.

The fundraising season started with a Pub Quiz on November 22nd in Doyles Pub, D2, while their major event “Be Green Be Seen” will take place on the 16th of March in the Green Isle Hotel, Newlands Cross. We are looking forward to working with them and will keep you posted on any upcoming events.

Charity Of The Year Partnerships Is your workplace looking for the Charity of the Year 2013/2014?

If so, get in touch and let us know. We are constantly looking for Corporate Partnerships and we need your help in ensuring submissions from CFAI are received in time.

THE GIVING GUILD 14th December, Four Seasons Hotel, Ballsbridge A group of ladies who raise funds for a selected charity through an annual lunch, have chosen CFAI as the beneficiary of their fundraising in 2012.

A lunch is scheduled to take place in the Four Seasons Hotel, Ballsbridge, at 2pm on 14th December. Due to a cancellation, a table has become free. Cost of table for 10 is €1,000. At this late stage, individual places can be booked.

Contact Sheila Campbell on 086-8185967.

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NATIONAL AWARENESS WEEK 2013 Waterford Hospital and Beaumont Hospial Dublin Our 65 Roses Week will take place from 12th–19th April with our National Flag Day being on April 19th. As in previous years, we will contact a number of shopping centres nationally and organise the sale of our merchandise in all authorised locations. Will your local shop support our Awareness Week? Get in touch and let us know and we will include it in the list of locations nationwide.

At the same time, we invite all willing fundraisers to organise their own fundraising event to help us mark the week and raise awareness for Cystic Fibrosis. The opportunities are unlimited, the more creative the better; from a lovely coffee morning to a mad last chance Debs night, it will be an amazing opportunity to draw friend, family and your local community together, while raising so much needed awareness and funds for a cause close to your heart.

Have you got an idea? Contact the fundraising team at 1890 311 211 to discuss it further and you can be assured we will provide every support possible.

MINI-MARATHON 2013 3rd June 2013 Mark it into your diary ladies, the date for the 2013 Flora Women’s Mini-Marathon is 3rd June.

Keep an eye on our Facebook page and www.cfireland.ie in the New Year with information on how you can be part of it! Here are the banking details for those yet to lodge their funds from 2012.

• Bank: AIB Account Name: One in One Thousand Sort Code: 93-10-71 (add name to narrative) • Send a cheque to 1 in 1000, CFAI, 24 Lower Rathmines, Dublin 6 (payable to 1 in 1000) • Make an online donation at www.cfireland.ie (add 1 in 1000 to narrative) For any queries, email cenright@cfireland.ie or Lo Call 1890 311 211

RECYCLING FOR CF With Fonebank Are you getting a new phone or iPod for Christmas?

Remember through our partnership with the recycling experts at Fonebank, CFAI could earn around €5 per donated item.

What can be recycled for CFAI? Mobile Phones (all models), Apple iPads and iPods.

Donate in 3 easy steps: 1. Place phone(s) in a suitably sized Jiffy bag and seal securely with your order details inside. If you do not have a jiffy bag wrap the phone(s) in bubble wrap or tissue paper and place in well taped envelope or box. Please note that we do not require chargers or boxes but do require batteries 25

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2. We recommend that you use registered post as you can insure your phones with An Post.

3. Please state on the envelopes that you are recycling for CFAI. Fonebank Unit C2 Airside Enterprise Centre Airside, Swords Co Dublin

Or at greater risk by FREEPOST to:

Fonebank Unit C2 Airside Enterprise Centre Airside FREEPOST S4728 Swords, Co Dublin

For more information, contact Fonebank by email: info@fonebank.ie or call: 01 4229004. If you’d like to hold a collection in your school or community centre, please get in touch with the CFAI Fundraising team at LoCall 1890 311211 or email info@cfireland.ie

CHALLENGES & EVENTS Overview Below New York City Marathon – THANK YOU Well done to all those who travelled to New York to take part in the New York City Marathon 2012.

It was with much disappointment that the marathon was cancelled two days prior to the event because of the devastation caused by Hurricane Sandy. One of the worst hit areas was Staten Island, where the marathon was due to start. We applaud those who joined in as volunteers for a day with the Red Cross to assist those rendered homeless and donated clothing to local Salvation Army stores.

It wasn’t all bad as on Sunday 4th November an impromptu ‘Run in the Park’ took place in Central Park for all the runners and, in addition, the Dublin Marathon organisers arranged a run in the Phoenix Park, near the Phoenix monument and the U.S. Ambassador’s residence – on Sunday 18th November.

CFAI wish to thank all our runners, in particular for the fundraising effort carried out during the year.

If you would like to get involved for 2013 please contact us at 01 4962433 or email Eufemia at esolinas@cfireland.ie or Martin at mcahill@cfireland.ie

Runners stop for a photo on their way to Central Park to run.

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Dublin Marathon – THANK YOU Our heartfelt thanks to all our wonderful runners who pounded the pavements of Dublin City for 26 miles for CF on 29th of October 2012.

What’s next?

We are asking our runners to lodge their funds raised as soon as possible to help CFAI provide vital isolation beds and new treatment centres nationwide. 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.

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

Michael Littleton who ran the Dublin Marathon and has raised over €5,000 for CF! With him is baby Grace Duffy (PWCF) Graces mother, Marie Duffy and in the front Amy Littleton, Abby Littleton and Sarah Duffy.

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 CFAI, 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 CFAI. Make an online donation on the www.cfireland.ie ‘Donate’ page.

To Hell & Back Winter Challenge – Sunday 27th January Ireland’s toughest 10k Challenge What? Challenging 10k run that will test your boundaries When? Sunday 27th January, start: 12.30pm Where? Kilruddery Estate, Bray, Co. Wicklow Who? Anyone who likes a challenge How much? €45 (indiv.) €145 (team) How to register? Log onto www.hellandback.ie For sponsorship pack contact us at 01 4962433 or email Rosie at rbegley@cfireland.ie or Martin at mcahill@cfireland.ie London Marathon 2013 – 21st April 2013 We have managed to secure a few places for the biggest marathon in Europe: the London Marathon is a must for all 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 €2,000. Places are LIMITED and will be available for a short time only, so if getting fit after the festive season is your New Year’s resolution, the London Marathon could be for you! Call us to secure your place before it is too late.

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Skydive for Cystic Fibrosis Are you up for a challenge in 2013?

How about 5,000 feet skydive jump!

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.

THANK YOU Fundraiser Acknowledgements Hell & Back Challenge – October 2012 A big thank you to Joe Dunne (CF parent) and his team for braving the Hell & Back Challenge in October and raising over €2,000 for Cystic Fibrosis.

The Hell and Back Team.

The Hell and Back Team.

Malahide Bridge Club Many thanks to Ms Anna Walsh, Captain of the Malahide Bridge Club, and club members for organising a Charity Night in aid of Cystic Fibrosis on November 16th.

The night was a great success, raising €1,260. Well done to the organisers and thanks to everyone who generously supported the event.

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Nov/Dec 2012

Wax Off Event A big THANK YOU to Paula Lambert and friends who organised a ‘Wax Off’ event in September and raised €3,185.21.

Cork to Cobh Road Race Sincere thanks also to Ruth and her brother Tony Archer who raised €1,200 in the Cork to Cobh Road Race.

Sale of Work A huge thank you also to our young fundraisers Alex and Lewis (nephews of Zoe Woodward, CF Parent) who had a Sale of Work at their garden gate in aid of CF!

Paula Lambert and friends raised €3,185.21 for CFAI.

Ruth & her brother Tony at the Cork to Cobh Race.

The photo to the right shows Alex and Lewis just after they set up the stall and were rearing to go.

The boys sorted through their toys for things to sell and spent their Saturday afternoon busy selling and raising €83. Well done boys!

Alex and Lewis who recently organised a little ‘sale of work’ after a playroom clearout.

Halloween fundraising Thank you to all those who organised some seriously spooky Halloween fundraising events.

We received some exciting and fun reports, so well done to all organisers and thank you to all people who supported them.

Golf Classic - Blainroe Golf Club A big thank you to all members of Blainroe Golf Club, Co Wicklow for organising a Golf Classic and raising €5,369. Special thanks are due to Patricia Delahunt for your support of CFAI once again.

And finally...Watch out for new and exciting events in our next Spectrum 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 e: info@cfireland.ie

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Spectrum / Issue 30

About the Cystic Fibrosis Association of Ireland (CFAI) The CFAI is a registered charity CHY 6350 that was set up by parents in 1963 to improve the treatment and facilities for people with CF in Ireland. It is a national organisation with many Branches around the country.

The CFAI is committed to working to improve CF services in Ireland and our recent progress includes: ● Lobbying to ensure that the new national adult CF centre in St Vincent’s University Hospital was be completed ● Providing funding towards new CF Units around the country including Crumlin, Drogheda, Galway, Mayo and Limerick Hospitals ● Funding research in Cork University Hospital, St Vincent’s University Hospital and University College Dublin ● Campaigning to improve the rate of double lung transplantation in Ireland ● Providing advice and expertise

ISSN 2009-4132 ISSN 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

Charity: CHY6350 30