Spectrum - Issue 34

SPECTRUM

Published by Cystic Fibrosis Ireland

IN THIS ISSUE:

• New CF Facilities Underway at Cavan General Hospital • Public Consultation on Consent for Organ Donation • Cork Celebrate Their 50th Year • Head 2 Head Walk for Beaumont • 1 in 1000 Round Up Jul/Aug 2013

Issue 34: Jul/Aug 2013 www.cfireland.ie 1

Dear All, We thought summer was supposed to be a quieter time?

It's great to see all the work continue around the country with good progress in the new build CF facilities in Drogheda and MWRH Limerick and work to commence in the next few months in Castlebar, Cavan, Waterford and Galway.

We will also be keeping up the pressure (and fundraising) for the CF 'Beds for Beaumont'. It's important to note the building progress in both the large specialised CF Centres and the smaller regional centres.

It is great to see the 50th celebrations around the country, the most recent took place in Cork with a fantastic night. Well done to the Southern Branch (and good to see Kerry well represented also).

Please let us know if you are interested in organising an event in your region.

While it's good to report on progress it's also sobering to note that we are facing growing staff shortages in our hospitals for key posts and many of our families are facing up to problems of unemployment, emigration and reduced incomes.

We hope you will get a break during the summer and maybe we will have a little bit more sun before the autumn Ă‘ we need it!

Kind regards, Philip Watt (CEO)

Alica May (Editor) Front Cover: Lorraine O'Neill and her daughter Mia from Co Cavan. Photo Courtesy of Lorraine

Teevan.

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

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Spectrum / Issue 34

Section 01:

LATEST NEWS: Page 2Ñ6 Plans for New CF Facilities Underway at Cavan General Hospital Transplant News Cork Celebrate Their 50th Year Submission from CF Ireland on the Retention of Cards used in the National Newborn Screening Programme Public Consultation on the Introduction of an Opt-Out System of Consent for Organ Donation Tax Effective Donations CFI Fertility Grant Scheme 2013 Ñ Still Open --

Section 02:

BRANCH FOCUS: Page 7Ñ8 Cork Branch Celebrate Their 50th Anniversary --

Section 03:

PARENT PROFILE: Page 9 Lorraine O'Neill from Co Cavan shares her story --

Section 04:

FUNDRAISING: Page 10Ñ17 National Awareness Week 2013 Overseas Events Challenges & Events Community Events Ñ Get Involved!

Thank You Hospital Projects 1 in 1000 Round Up --

Jul/Aug 2013

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LATEST NEWS

SECTION 01

PAGE 2Ñ6

Plans for New CF Facilities Underway at Cavan General Hospital Work has already commenced on the development of new facilities at Cavan General Hospital, which will benefit children and adults with CF in the Cavan / Monaghan catchment area.

At a total cost of Û150,000, the new unit will include two outpatient rooms which will be located adjacent to the respiratory and the physiotherapy departments. These outpatient rooms will be completed, fully furnished and commissioned, by the end of August 2013.

This project has been made possible due to a partnership approach between the HSE, Cavan General Hospital and the Cavan Branch of CF Ireland, who have made a significant contribution towards the total cost of this project.

There are 28 people with Cystic Fibrosis who attend Cavan hospital and 47 people with Cystic Fibrosis in the catchment area of the hospital. Members of the Branch firmly believe that geographic location should not be a handicap for these people with CF in accessing quality care and patient safety.

L-R: Damien O'Reilly, Acting Maintenance Manager at Cavan General; Rita Cullen and Bernie Walshe, Respiratory Nurse Specialists; Evelyn Hall, Clinical Business Manager for Cavan Monaghan Hospital Group; Rosaleen Cronin, Treasurer, Cavan Branch CFI; Dr James Hayes, Respiratory Physician; Raymond Dunne, Chairperson Cavan Branch, CFI; Lorraine O'Neill and her daughter Mia; Niamh Bolger, PWCF; and Gerry Tully, Estates with the HSE. Photo Courtesy of Lorraine Teevan.

Raymond Dunne, Chairperson of the Cavan Branch of CF Ireland, in welcoming the initiative said "that current best practice and international studies concur with regard to a 'shared care' model of service delivery to PWCF. This shared care model was also recommended by a working group established by the HSE to examine services for PWCF in Ireland and it operates on the basis of outpatient visits, on an alternate basis, between a specialist centre of excellence and a shared care centre."

According to Bridget Clarke, General Manager, Cavan & Monaghan Hospital, "the benefit of this new development is that people with Cystic Fibrosis attending our hospital will have a separate, designated area to receive all their care from the multidisciplinary CF team and the risk of cross infection will be greatly reduced."

Karen Keogan, Secretary of the Cavan Branch sees this development as the first phase of a three phase project which will enhance the structure of care "Cavan Branch of CF Ireland is really grateful for PWCF in the area: to all its fundraisers Phase I Ñ provision of 2 outpatient units to be opened in Sept 2013 and supporters who Phase II Ñ provision of 2 inpatient units for adult PWCF have made this Phase III Ñ provision of 2 inpatient units for paediatric PWCF collaborative venture possible."

"We embark on this project in the name of 28 PWCF attendees at Cavan General, the 47 PWCF in the catchment area and in the memory of 24 PWCF Rosaleen Cronin, Treasurer of the Cavan who are no longer with us" said Raymond Dunne. Cavan Branch Treasurer Rosaleen Cronin would also like to express her gratitude to all the fundraisers Branch, CF Ireland and supporters who have made this collaborative venture possible.

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Transplant News Good news! A young woman with CF (aged 29) from Cavan was recently transplanted in the Mater University Hospital. This brings the total number of CF double lung transplants in the Mater hospital to four so far this year and the current general rate of all lung transplantation is up again from last year. With many thanks to the transplant team in the Mater.

New transplant facilities in the Mater are to be formally opened shortly as part of the new wing of the Mater hospital. The transplant teams will be able to avail of the 9 (eventually to be 12) new operating theatres used for all surgery in the Mater and there will be single ensuite pre/post-operative transplant rooms for those receiving lung (and heart) transplants. The transplant assessment and co-ordination unit will also be moved to the new wing of the hospital.

Philip Watt, CEO CF Ireland, along with Dr Barry Plant (Chair of the MSC) and Dr Ed McKone (Chair of the Irish Thoracic Society) met with the interim Hospital Manager, Mary Day, recently and had a chance to see the new facilities after the meeting. We are also pleased to confirm that the Mater Hospital will shortly be advertising the Cardiothoracic surgery post (formerly held by Professor Freddie Wood, and recently appointed President of the Irish Medical Council).

Cork 50th Celebration With many congratulations to Marian Barrett (Chairperson) and all the members of the Southern Branch who recently hosted a wonderful 50th celebration night in Cork. It was a really special evening that was attended by over 150 people. It was an opportunity to thank all those who were involved in the Southern Branch over many years.

In particular there were special awards to the 'two Cathy's' Ă‘ Cathy Carlton (parent and liaison officer) and Cathy Shortt (CF specialist nurse) and to Con O'Sullivan, long-time Treasurer of the Southern Branch. Tributes were also paid to Betty Hand (Kerry Branch) and to the fundraising efforts of our all our members and Build4Life. Many thanks to Dr Barry Plant who spoke on behalf of the excellent CF team in Cork University Hospital, many of whom took part in the evening. Read more about the Cork Branch and their 50th anniversary evening in the 'Branch Focus' section of this issue.

Submission from Cystic Fibrosis Ireland on the Retention of Cards used in the National Newborn Screening Programme CF Ireland made a submission to the Department of Health and the Royal College of Physicians of Ireland in June regarding the retention and possible broadened use of National Newborn Screening Cards. The submission seeks to preserve the integrity and public confidence in the National Newborn Screening Programme in Ireland and in particular in relation to it's importance in screening for CF. The approach of CFI on this issue is to be constructive and forward looking, while seeking to preserve the integrity of the Screening Programme itself. Log on to our website to read the full submission Ă‘ we very much welcome your comments and observations.

Jul/Aug 2013

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Public Consultation on the Introduction of an Opt-Out System of Consent for Organ Donation Currently in Ireland, when a potential organ donor is identified, the deceased person's family is asked for their consent to allow organ donation to take place. This is known as express consent or an opt-in process to becoming an organ donor. In other words, the choice and the decision to become an organ donor rests with the family of the deceased, including where the deceased person had an organ donor card or had indicated their wish to become an organ donor on their driving licence.

The Government now intends to change this system of consent to one of opt-out consent. What this will mean in practice is that the health professionals involved will not have to actively seek the deceased's family's express consent for organ donation. Instead, consent will be deemed unless the person has, while alive, registered his/her wish not to become an organ donor after death. This is known as 'opting-out'.

However, it is proposed that, even though consent is deemed, the family will in practice always be consulted prior to removing any organ and if the family objects to the organ donation, the donation will not proceed. This is what is known as a 'soft' opt-out system.

The Department is now asking interested parties to submit their views on the practical aspects of introducing a system of opt-out consent for organ donation. In addition to your general views, the Dept would particularly like your views on the questions included in this consultation document: www. dohc.ie/consultations/open/SystemConsent_OrganDonation/ConsultationDocument.pdf There are basically four options: 1. Supporting the present system of opt-in 2. Supporting the move to a hard opt-out whereby next of kin would not be consulted 3. Supporting the move to a soft opt-out, whereby next of kin would be consulted 4. Supporting the move to soft opt-out as part of a package of measures to improve lung transplantation and donation in Ireland Position of the Irish Donor Network The IDN supports the move to soft opt-out as part of a package of measures to improve transplantation and donation in Ireland including: • The appointment of organ donor co-ordinators in major ICU hospitals • Better resourced public awareness programmes • A clear website system whereby people can indicate that if they do not want to donate organs • Stronger partnership between patient groups and government on this issue • The need for an adequately resourced National Office on Organ Donation and Transplantation How to Respond Written responses by individuals, groups or organisations are welcome and should be sent by e-mail to: optout@health.gov.ie or posted to: Opt-Out Consent Consultation, Department of Health, Room 310, Hawkins House, Hawkins Street, Dublin 2 The deadline for submitting responses is Friday 23rd September 2013.

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Tax Effective Donations Cystic Fibrosis Ireland (CFI) can claim thousands of Euro every year by claiming tax relief on your donations. This is a straightforward and simple process, which allows your donation to go even further and for us to get the most out of your gift.

Any taxpayer who donates a minimum of Û250 (Û21 per month) in any one year to CFI can: • Fill out a form allowing the Charity to reclaim the tax on

the donation • Claim the tax themselves if they are a Corporate Donor Changes to Tax Relief on Donations Following the 2013 budget, some changes have been made to the tax relief scheme on charitable donations. The changes summarised below only apply to qualifying donations to eligible charities and approved bodies from the 1st January 2013 Ñ all previous donations up to and including the 31st December 2012 are still subject to the old rules. There is no change to the Corporate tax relief, companies continue to treat donations as a normal business expense and therefore no upper limit on the amount that can be donated.

2013 and beyond • From now on all donations from individuals, both PAYE and Self-Assessed will be treated the same,

with the tax relief in all cases being repaid to the charity.

• Tax relief is to be given at a blended rate of 31% regardless of the rate of tax paid by the donor. All

donations will be grossed up as is currently the case with PAYE donations.

Example: Donation of Û250 will be grossed up at 31% as follows: Û250 / 69 x 31 = Û112.32 tax refund to Charity Therefore Charity receives a total of Û362.32 (Û250 donation & Û112.32 tax refund) • An annual limit of Û1,000,000 per individual, which can be tax relieved under the scheme has been

introduced.

• Donors can sign the approved certificate to cover qualifying donations over a five year period using the new CHY3 'enduring' form or if they prefer for a one year using the CHY4 annual form. In each case the donor is giving the charity permission to claim a tax refund on the donation during the period covered by the form.

Link to CHY3 'Enduring' Form: www.revenue.ie/en/tax/it/forms/chy3cert-charity.pdf Link to CHY4 Annual Form: www.revenue.ie/en/tax/it/forms/chy4cert-charity.pdf 2012 and prior years Charitable Tax relief PAYE taxpayer Tax relief is given directly to CFI and is based on the tax payers marginal rate of tax paid by the individual.

Jul/Aug 2013

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Example: A PAYE taxpayer donates Û250 and marginal rate of tax is at 41% then the charity can claim back a tax refund amount of Û173.73 (Û250 / 59 x 41) Or If the PAYE taxpayer donates Û250 and marginal rate of tax is at 20% the charity can claim back the tax refund amount of Û62.50 (Û250 / 80 x 20) In order for CFI to claim the tax relief, all PAYE-only donations above Û250, either in one lump sum or aggregated in one tax year, require a CHY2 form to be completed, signed by donor and returned to CFI. Link to CHY2 Form: www.revenue.ie/en/tax/it/forms/chy2cert-charity.pdf Self-Assessed Individual If you are a Self-Assessed taxpayer or if you pay a portion of your tax under the self-assessment system, you can claim the tax relief on a donation to CFI as a deduction on your tax return.

Company Donation A company can claim a deduction for a donation to CFI as if it were a trading expense.

CFI Fertility Grant Scheme 2013 Ñ Still Open Just a reminder to members that the CFI Fertility Grant scheme is still open. This grant provides financial support to people with cystic fibrosis and their respective partners who wish to undergo fertility assessment/treatment in the hope of becoming pregnant.

How much funding is available?

The maximum value of the grant for first-time applicants is Û3,000. Members who previously availed of the fertility grant are eligible to apply for a second time Ñ the maximum value of the grant for second-time applicants is Û2,000.

How do I apply?

A Fertility Grant Application form must be completed and supporting documentation from your CF Centre and the fertility clinic you plan on attending must be sent to the CFI National Office by Friday 27th September 2013.

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If you have any queries in relation to the Fertility Grant, please contact Alica May by emailing amay@cfireland.ie or call 01 4962433.

Spectrum / Issue 34

BRANCH FOCUS

SECTION 02

PAGE 7Ă‘8

Cork Branch Celebrate Their 50th Anniversary

By Marian Barrett, Chairperson, Cork Branch It was wonderful to celebrate the 50th anniversary of CF Ireland recently. To mark this occasion the Southern Branch held a celebration in the Rochestown Park Hotel. This was very well supported.

The Cork clinic was founded in the mid 1960's by Dr Tess O'Halloran and Dr. Barry. The treatment for CF was in it's infancy when Dr. O'Halloran began to care for our patients in St.Finbarr's hospital. We could not have asked for a more caring and dedicated physician. Dr. O'Halloran went to Kerry once a month to do a CF clinic in Tralee until Dr. Leahy was appointed.

Pat Wilkinson and a group of friends started a support group and the Southern Branch grew from there. Within a short time Maura Hallinan joined this group and has been the longest serving member on our committee.

Our first appointed dietician was Mairead Reed, she was a wonderful help to our patients she attended St. Finbarr's Hospital and moved with us to the Cork University Hospital (CUH) when it opened. Dr. Brendan Watson was appointed CF Specialist at CUH and Dr. O'Halloran and Dr. Watson both worked together there. Dr Watson was fantastic, his commitment and dedication to his CF patients was unrelenting and he was always seeking better facilities .

With the improvement in treatment and medication the adult population began to grow.

Dr Cathal Bredin came on board to look after our adult patients in the 1980s.

In 1991 the first Specialist CF nurse appointed in Cork was Cathy Shortt. Following her appointment we saw an immediate improvement in our patients treatment.

The Bandon Committee making a presentation to Dr. Barry Plant.

The Pollock report was commissioned in 2003 and it highlighted that the treatment and care of CF patients in Ireland was way below the standard of most other countries.

The CF Association engaged in a major campaign to have more specialist medical personnel appointed.

Now we are very lucky to have such eminent Specialist's as Dr. Barry Plant and his team, who care for our Adult patients. Dr. Muireann NÂ’ Croinin, and Dr. Dave Mullane looking after our paediatric patients.

Con O' Sullivan, Philip Watt and Marian Barrett.

Jul/Aug 2013

Philip Watt, Maura Hallinan and Marian Barrett.

The Southern Branch have always enjoyed a good working relationship with the management and Medical personnel at CUH.

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There have been some great people involved in our committee over the past 40 years Ă‘ too many to mention Ă‘ however, we were very lucky to have many great Chairpersons, Secretaries, and Treasurers, especially Alan Patrick who did so much for our Cork patients. Alan also became National Chairperson and International Vice Chairperson.

We have always had a very hardworking and supportive group on our committees and many have formed wonderful friendships. Down through the years there has been some stalwart members of the committee. I must particularly mention Maura Hallinan who was our treasurer and a brilliant fundraiser for many years and has been a cornerstone of our committee. Con O'Sullivan succeeded Maura as our treasurer and his contribution to our committee has been exemplary.

We are also very lucky to have a wonderful Liaison Officer in Cathy Carlton. She is always there for parents and patients and has been a great friend and support to all.

There has always been a great bond between the Cork and Kerry branches. We have always worked well together and we continue to do so. An example of this was the Build4life campaign which was formed to set up a specialised adult CF unit in CUH . We have to thank all those who fundraised especially Joe Brown and the members of the Kerry and Cork branches who started the Build4Life project; without Joe's initiative and enterprise we might not have such fantastic facilities. We sincerely thank him and the many supporters who raised the funds for Build4Life.

The adult day unit is up and running and is just amazing and we hope to have the inpatient facilities finished before the end of the year. Our next project is to have a specialised CF paediatric unit to include daycare and inpatients rooms. We want this to be a state of the art facility and we will be starting our fundraising campaign shortly.

The National Association has always assisted us in our endeavours. We have always had a great working relationship and we hope to continue in this vein. The Southern Branch has always supported research projects. The improvement in treatment over the years is truly amazing and our hope is that it continues.

We look forward to a bright future.

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Spectrum / Issue 34

PARENT PROFILE

SECTION 03

PAGE 9

My Story

By Lorraine O'Neill, Co Cavan Mia was 7 months old when she was diagnosed with Cystic Fibrosis. She had been quite ill and didn't seem to be improving. It was then that Dr Alan Finan at Cavan General asked about CF in the family. We had no history in either family but the sweat test proved positive so life with CF began.

To be honest, at the beginning I was so shocked and the usual 'whys' were asked but with the support of family, friends and the CF Cavan Branch, we knew we weren't alone. For the next year it was all a learning process with creon, nebulisers, inhalers, vitamins and physiotherapy Ñ all alien in a house that wouldn't even have had a box of panadol in it.

Music was our Saviour. Mia listened to music while she did her nebs and during physio, treating it like playing time, fun instead of a form of torture. It was like she knew no better and this was just normal to her. For us it was easy to settle into as Mia was our first child so we had nothing to compare it to.

Lorraine with her daughter Mia. Photo courtesy of Lorraine Teevan.

Mia is now 5 years old and thank god she is good. She had IVs four times, but oral antibiotics generally do the trick. Her wee bowel gives her some trouble but mostly she is in good health. Mia knows that she has CF and that she takes tablets (creon) other kids don't have to, but we have brought her up to know that she has Cystic Fibrosis Ñ it doesn't have her. Mia calls all her CF meds what they are Ñ creon is creon, nebs are nebs. We have taught her this as we feel if you call all your every day meds 'medicine', you grow up thinking you're sick as well as those around you. Mia looks on the likes of calpol as medicine.

I got involved with the CF Cavan Branch shortly after Mia was diagnosed. I found that they knew what I was going through and they got me through the hard days. As the months went on I just wanted to help. It was one thing to find out your daughter had a life-threatening illness, but then to find out about the lack of facilities was just another kick in the stomach. I couldn't just sit back and wait for things to get better, I needed to do something.

With the help of great friends I started to fundraise. We organised the Cuilcagh Challenge 2011 and raised Û10,465 and again in 2012 raised Û8,743. On September 14th this year we will have our third run at it and hopefully it will be another great day. Cuilcagh is Cavan's highest peak, so it's a nice climb with fabulous views when you reach the top. Also last year after months of training I led 56 people from Cavan to run the Dublin City Marathon. Our group 'Run DMC 4 CF 2012' raised a massive Û60,000 and I can say that as I crossed that line, holding Mia's hand, it was one of my proudest moments. Mia said "Mammy you won!", and you know what, I might as well have.

We are working hard to raise money to improve facilities in Cavan General. We are delighted to announce that our out-patients unit is in the process of being completed and we hope to have it up and running

by September 2013. The next phase will be an in-patient adults unit and then phase 3 will be paediatrics.

Cystic Fibrosis is a horrible illness and if you could take it from your loved one you would. Unfortunately that's not life so you must take it. My advice to give is the advice I was given Ñ remember they're a child first that has CF. Keep life as normal as possible and remember you're not alone.

Jul/Aug 2013

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FUNDRAISING

SECTION 04

PAGE 10Ñ17

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

If you would like to organise your own event or take part in a challenge please contact our Fundraising Team on LoCall: 1890 311 211 or email: fundraising@cfireland.ie

National Awareness Week 2013 Did you organise an event or locate one of our boxes in your local shops during our 65 Roses National Awareness Week?

Mary Duff is a well know Irish singer, with over 20 years of experience in the international music scene, and best known for regularly touring with Daniel O'Donnell.

Mary Duff's phenomenal talent as a singer, Please ensure you send any funds raised for together with the great stage presence and this campaign to CFI National Office as soon as charisma she possesses, is testimony of her quietly powerful and captivating persona. There possible. is a genuine warmth about this lady that touches Work has already started in planning for our all who come into contact with her, and she enjoys National Awareness Week 2014. Watch this a dedicated, very supportive fan following. space!

The Committee has already started working on planning the Walk 2014 with the support of Mary Duff and look forward to working with her in Recycling for CF making the walk even more successful.

Get your school or company involved. Full details under Fundraising on our website www.cfireland. New York Marathon 2013 ie or for queries please contact the CFI Fundraising The event is now only 3 months away and we have still few places available. Get in touch and don't team. miss out the experience of a lifetime!

Overseas Events

Challenges & Events

Camino Walk 2013 Our newest international fundraising venture has Dublin Marathon Ñ Bank Holiday Monday 28th raised a lot of interest. The group will be travelling October 2013 Join Team CF Ireland and run the Dublin Marathon to Spain in just over 6 weeks' time. in 2013! Registration is now open. Sign up today!

We would like to wish the participants good luck with the Camino and thank them for the Help us have the biggest team running across fundraising and physical efforts which this the streets of Dublin. Register directly on www.dublinmarathon.ie and contact us for a challenge requires. sponsorship pack.

Paddy Kierans' Memorial International Walk Ñ Trafalgar Square to Puck Fair Cycle Ñ 3rd-9th Tuscany, Italy 2013 A large group will be travelling to Tuscany in August October as part of our Paddy Kierans' Memorial Fancy joining Ray Crowley and his cycle team from Walk 2013. The work is ongoing to ensure it is London to Kerry? Or join in for a day or two? A fully equipped support vehicle will accompany another amazing experience for our walkers. you throughout.

The Walk Committee and CFI are delighted to announce Mary Duff as patron of the Paddy For more details contact Ray Crowley email: crowleyray@gmail.com Kierans' Memorial International Walk.

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Spectrum / Issue 34

Dublin City Triathlon Ñ Sunday 25th August Another upcoming challenge you can join is the Dublin City Triathlon. To register log on to www.dublincitytriathlon.com and contact us in the National Office for a sponsorship pack.

For more information contact: Sue: 086 3760818 Marcella: 086 8390942 Seamus: 087 8222750 Sheila: 086 1086286 e-mail: cyclenorthclare.tlc4cf@gmail.com facebook: North Clare CF Cycle

GaelForce West Ñ Saturday 17th August The funds raised for TLC4CF will be used to This might appear as an improve services and treatment for all in the impossible challenge; however region with CF. it is achievable by everyone: all it takes is preparation and training.

To register, log on to www.gaelforceevents.com/ trailblazer and contact our fundraising team for a sponsorship pack.

Skydive for Cystic Fibrosis Skydives are a very popular and fun way to raise funds with friends.

Contact us for further info on how to organise your jump.

Join TLC4CF at the North Clare Charity Cycle on 21st September.

Kilnaboy girls with Sean Kelly, Trisha, Sheila, Marcella, Sue, Sean Kelly, Brid, Catherine and Ailish.

North Clare Charity Cycle and Run in aid of TLC4CFÑ 21st Sept A North Clare Charity Cycle will take place on Sat 21st September 2013 in aid of TLC4CF and CF. Community Events The 75km and 127km cycle routes will take place in the scenic Burren and Atlantic coast and the 10km and 40km route is a more leisurely family route that also passes by Fr Teds! A 6km fun run is also on offer.

Entry Fees is Û30 for the cycle and Û10 for the run Goodie Bags are also included. Register online at www.tlc4cf.com.

Jul/Aug 2013

There are a number of community events coming up in the next couple of months. Listed next are just few of the initiatives planned.

We would invite everyone to support all the fundraising activities taking place locally and let us know if there is something coming up that you would like to highlight in the next issue of Spectrum.

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50 Peaks for Cystic Fibrosis Gerry Walker was born with CF in February 1962. By the age of 41 his health had seriously deteriorated. In July 2008, Gerry had a lifesaving double lung transplant. Within 12 months of his transplant, he climbed the highest peaks in Ireland, England, Scotland and Wales, climbing Scaffel Pike on the anniversary of his transplant.

The 4-Peaks challenge was a tribute to his donor.

Now, Gerry and his wife Margaret are embarking on the 50 Peaks Challenge to celebrate Gerry's last 5 years of wonderful life, as a tribute to Anne O'Dwyer the founder of the CFI, to the many who have lost the battle with CF, to raise awareness of CF and also to raise funds for the work of CF Ireland.

Within the 50th anniversary year of CF Ireland, Gerry and Margaret will climb the 50 highest peaks in Ireland. The challenge started on Sunday 28th April when they climbed Tonelagee Mountain, they will climb 3 peaks over 1,000m, 11 over 900m, 26 over 800m and 10 peaks between 790m and 800m before the end of 2013.

Gerry and his wife Margaret on top of the British Isles.

To support Gerry's challenge, you can donate on: www.mycharity. ie/event/50years50peaks/ Trash the Dress Ă‘ Sunday 25th August Trash your wedding dress (or someone elses!). We are aiming to get as many brides together to do a "Trash the Dress" shoot all in aid of CF, you would need people to sponsor you to trash your dress and in return have a fun day out!

Date: 25th August, Location: Clonkeeran House, Carbury Kildare, just off the M4, home of Runamuck Challenge. Please email: trashthedresscfireland@gmail.com with contact details if you would like a sponsorship card.

Meeting Point: Night Club area in the Hamlet Hotel where Alan from the Black Knights will provide entertainment. We are entering our event into the Guinness Book of Records as it hasn't been done before so you will be making history!

Trash your wedding dress in aid of CF on Sunday 25th August.

Racecourse Challenge for Cystic Fibrosis Antony Lewis-Crosby, parent, set on the unique marathon project to visit every one of the 87 racecourses in Ireland, England, Scotland and Wales in alphabetical order to raise money for Cystic Fibrosis.

The challenge started back in 2009, including the 26 racecourses in Ireland. The last leg of his Irish challenge took place in Wexford on July 27th 2013. For further information on the challenge or to contact Antony please visit his website at www.racecoursechallenge.org We wish to take this opportunity to thank Antony and all his family for the support provided by raising funds and awareness of Cystic Fibrosis. We wish him the best with the rest of the races in the UK. 12

Support Antony Lewis-Crosby with his Racecourse Challenge for Cystic Fibrosis.

Spectrum / Issue 34

Marathon Man Ñ Gerard Fay Congratulations to Gerard Fay, marathon man who racked up a remarkable 260 miles Ñ a total of 10 marathons Ñ during a 10 day challenge in Sixmilebridge, Co. Clare this July.

Gerard is currently undertaking a marathon challenge, which began in October 2012 and will finish in October 2013. He will complete his 100th marathon for Cystic Fibrosis during the Dublin City Marathon.

Gerard has raised Û100,000 for CF over the years, with the aim of raising more funds during this marathon extravaganza to support facilities for people with CF throughout the country. To sponsor Gerard visit www.seeoffcf.com 25 Marathons in 10 months Challenge Balbriggan man, Barry Casserly hopes to have run 25 marathons between January of this year and the next Dublin City Marathon on the October Bank Holiday weekend all in aid of Cystic Fibrosis Ireland.

Starting out as a personal challenge, Casserly is now using the venture to raise funds for CF which affects a family friend's granddaughter, little Saoirse Brophy (6).

'Marathon Man' Gerard Fay and Balbriggan man Barry Casserly are undertaking mammoth marathon challenges in aid of CF.

"I didn't know much about CF, it can be quite devastating and I've got three children, we're blessed that everything is ok with them," said Barry. With Saoirse's inspiration, Barry is now more than ever determined to cross the marathon finishing line for the 25th time this October with the hopes of raising both awareness and funds for CFI. To support Barry's fundraising efforts, you can donate at the following link: www.mycharity.ie/event/barry_casserly_s_event/ Lanesboro Triathlon Club Ñ 3.5km Sponsored Swim Sean Farrell and the Lanesboro Triathlon Club have organised a 3.5km sponsored swim in the River Shannon. The event will take place on Monday 5th August at 2pm, starting from Kilnacarrow Bridge to Lanesboro Bridge, Co. Longford.

To get involved please email: sponsoredswim@trilanesboro.com or text 087 6271044. We would like to wish all participants good luck with the challenge! If you would like to support you can donate on www.mycharity.ie/event/lanesboro_tri_sponsored_swim/ Benefit Night in aid of Cystic Fibrosis Are you looking for a great night of entertainment? Sinead Kennedy, parent, is organising a Benefit Night on August 13th 2013 to raise so much needed funds.

The event will take place in the Thunder Road Cafe in Temple Bar, Dublin from 8pm. Tickets are on sale at Û20, and include 2 course dinner, live music with Sean Boland and plenty of raffle prizes. To get involved please contact Sinead on 085 7378493, get your ticket and enjoy a great night for a good cause.

If you would like to organise a Fundraising event please call The Fundraising Team on 01 4962433 or email: fundraising@cfireland.ie

Jul/Aug 2013

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Thank you Bloom 2013 THANK YOU to all our wonderful volunteers who helped out in the heat at Bloom this year.

Congratulations and thank you to Erika Reeves who won a Bronze for her very creative CF garden. Û1,500 was raised from the weekend.

Leitrim to St. Vincent's Cycle Huge congratulations to Jillian McNulty, PWCF and CF campaigner, who completed the Leitrim to St. Vincent's Cycle challenge.

24 Hour DJ Event A big thank you to Phil Watson & friends from Radiomade Web: http://radiomade.ie/ for organising a 24 hour DJ event and raising Û4,468 for CF. Mt.Elbrus 4 CF Well done and Thank You to Trevor Deady and his two friends Paul Maher and Garry McCullagh, who climbed Mt.Elbrus (5,642m, Russia) on June 8th. The group sponsored their own trip and have raised Û2,584.42 for CF so far.

L-R (back): Philip Watt, CEO, CF Ireland; Mr. John Hickey, CEO, St. Vincent's Foundation; Prof. Noel Whelan, Chairman, St. Vincent's Foundation; Dr Ed McKone, CF Consultant, SVUH. Front: Jillian McNulty and her mum Francis McNulty.

Trevor Deady and his two friends Paul Maher and Garry McCullagh, climbed Mt.Elbrus (5,642m, Russia) on June 8th and raised Û2,584.42 for CF Ireland.

L-R (back): Jillan was given a warm welcome by friends and supporters when she arrived at SVUH.

To support their fundraising effort, you can donate Following her friend Eleanor losing her battle with CF on December 3rd, Jillian decided to do a at www.mycharity.ie/event/7summits4cf/ fundraising cycle which began on June 21st, which would have been Eleanor's birthday, and arriving CF Tag Rugby Pub Event A big thank you to Nuala Carey from RT , TAG to St.Vincent's University Hospital on June 24th.

Rugby Ireland & Peggy Kelly's Pub for supporting our CF Pub Quiz in June aimed to the members Jillian is now planning to complete her fundraising taking part in the Tag Rugby Tournament taking efforts by organising an event on August 16th.

Further details coming up shortly. place in Harold's Cross Stadium.

The support of TAG Rugby Ireland and locals was Truck Run and Family Fun Day, Longford 29th Ñ 30th June hugely appreciated.

Thank you to Hazel Robinson, parent, who undertook the mammoth challenge of organising a Academy of Medical Laboratory Science Thank you to all Management and staff who had truck run followed by a family fun day in Longford. their Biannual Conference & Gala Dinner in April The event was a success, thanks also to the and collected Û1,545 for CF. support of friends and family.

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Spectrum / Issue 34

Castleblayney College Charity Football Match Thank you to the Transition Year students from Castleblayney College, Castleblayney, Co. Monaghan who organised a charity football match and raised Û3,000 for Cystic Fibrosis Ireland, which was presented at Castleblayney College's recent Awards Night.

Vintage Car Rally Ñ Tipperary Branch Many thanks to the Clonmel Veteran and Vintage Classic Car Club who recently presented a cheque of Û6,500 to Michael Hickey, Chairperson of the Tipperary Branch, CF Ireland.

Transition Year Students Shane Deery, Ryan O'Neill & Martin Maguire presenting the cheque to Mrs Kathleen Maguire (on behalf of CF Ireland) also in picture is Mr. Eoghan Mullooly (Teacher) & Ms. Anne Lennon (Awards Night Co-ordinator).

Rainbow Run A Big thank you to Sharon Byrne and family who braved the Rainbow Run on Sunday 28th July in D n Laoghaire.

Clonmel Veteran and Vintage Classic Car Club at a cheque presentation to Michael Hickey, Chairperson of the Tipperary Branch, CF Ireland.

Birthday Present for CF A huge thank you to Charlotte who asked for donations to CF Ireland as an alternative to getting birthday presents from her friends.

Charlotte's cousin Annabel has CF. Below is a picture of Charlotte on her 7th birthday.

Sharon Byrne with son Shaun and husband Michael at the Rainbow Run in D n Laoghaire.

Jul/Aug 2013

For her 7th birthday, Charlotte asked for donations to CF Ireland instead of birthday presents from friends.

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Lions Club of Ireland Ñ Annual Fundraiser The Lions Club of Ireland do a yearly fundraiser and the District Governor and his wife nominate a charity or charities of choice to donate the funds. Û4,500 was donated to Meningitis Ireland and Û4,500 was donated to Cystic Fibrosis Ireland.

Monica Smith mentioned that CF Ireland was chosen this year due to the connection with Marie Duffy (McCabes Pharmacy) and daughter Grace (PWCF).

L-R: Rosie Begley, CF Ireland, Monica Smith and Joe (District Governor).

Hospital Projects Waterford Hospital Project A big THANK YOU to all who are involved in fundraising for Waterford Regional Hospital. Û136, ooo raised so far with more to come in. For fundraising materials, assistance and advice, call Rosie at 014962433 or email: rbegley@gmail.com Beaumont Hospital Project We urgently need to raise Û2.5million for 12 in-patient isolation rooms in Beaumont hospital for people with cystic fibrosis, and we need your help.

You can help us in a number of ways by: • Organising a fundraiser Ñ see list of Fundraising ideas on our website • Taking part in an event such as the 'Head to Head Walk' (see below) • Donate to the CF Beds for Beaumont Appeal today Head 2 Head Walk Ñ Sunday 29th September 2013 The 1st CF 'Head 2 Head Walk' will take place this year on Sunday, 29th September. All funds raised from this event will go towards the Beds for Beaumont Campaign. The 26 mile route will take place in the beautiful surrounds of Dublin Bay. Participants can choose to walk from Howth Head to Sandymount or from Sandymount to Bray Head.

The walk will start from 9.00 am. Aged 16+ may only register.

For sponsorship pack please call the Fundraising team on LoCall 1890 311 200 or email fundraising@ cfireland.ie. Check back soon on our website for more details!

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Spectrum / Issue 34

1 in 1000 Round Up Congratulations to our fantastic fundraisers who took to the streets for Cystic Fibrosis on June 3rd as part of the Flora Women's Mini Marathon.

It's hard to believe it's been over a month since our 1000 plus women (and our few men dressed and heeled) took to the streets of Dublin and blazed a trail for CF. If you would like to reminisce why not head online to www.facebook.com/1in1000 and check out our photos from the Harcourt Hotel 'One in 1000' base.

Also if you have any fun snaps you'd like to share online, please email them to runningforcf@ cfireland.ie We want to say a big thank you to each and every one of you that has fundraised and sent in their sponsorship to CF House, which is climbing each day. Details are below for those yet to lodge their donations.

So Ladies, well done to all, let's keep the donations from your fantastic fundraising efforts coming in.

Finally we hope to you all next year on June 2nd 2014 once more helping children and adults with CF in Ireland.

Direct Lodgements Bank: AIB Account Name: One in One Thousand Sort Code: 93-10-71 Please include name in narrative section of the lodgement sip so that funds can be receipted accordingly Cheque Send a cheque to One in 1000, CFI, 24 Lower Rathmines, Dublin 6 making it payable to One in 1000 (please Jul/Aug 2013

include your name on the back of the cheque) Online Donation Make an online donation at www. cfireland.ie My Charity My Charity donations will come directly to the One in 1000 account

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About Cystic Fibrosis Ireland (CFI)

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

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

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

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

Ireland w: www.cfireland.ie

Company Reg: 449954 Spectrum / Issue 34

Charity: CHY6350 18