Spectrum Issue 37

SPECTRUM

Published by Cystic Fibrosis Ireland

IN THIS ISSUE:

• CFI Annual Conference 2014 • Lung Transplantation in the Mater • Exercise Grant 2014 Ñ Round 1 Now Open • PWCF Fitness Together Group • Mayo Branch Focus • 'Never Lose the Fight', Spotlight from Gr inne Fahey • 65 Roses National Awareness Week 2014 Jan/Feb 2014

Issue 37: Jan/Feb 2014 1 www.cfireland.ie

Dear All, There is much progress to report in this issue of Spectrum. It's great to see the 'turn the sod' ceremonies in Galway and Castlebar to develop new CF outpatient units. These are partnership projects that involve a wide range of key stakeholders including CFI, the local hospitals and the HSE. Local build funds including Mayo West/CFI Mayo and the Galway CF Hospital fund have been crucial to these projects. The new outpatient unit in Drogheda has been completed and will be formally opened in March. This is also a partnership project involving CFI, Our Lady of Lourdes Hospital Drogheda and the Louth, Meath and Drogheda CFI branches (LM4CF) The progress in lung transplantation rates in the Mater University Hospital has been excellent over the past year. This progress means that most lung transplantation will now be undertaken in Ireland going forward. We understand there have been 4 lung transplants already undertaken in the Mater in January 2014, including 1 CF double lung transplant.

It is hoped that the adult inpatient unit in Cork University Hospital will proceed shortly. There has been an ongoing dispute between a locally based CF charity Build4Life (which has no connection with CFI) and Cork University Hospital. CFI has urged that a compromise is reached as soon as possible to enable the new unit to be built.

We are delighted to tell you that Dublin Airport Authority has announced that CFI, The Special Olympics and the Jack and Jill Foundation are their chosen 'Charities of the Year' for 2014. This was based on a vote by staff and we are very grateful for the support of DAA. Finally to reassure our members and supporters that in the light of the revelations in relation to CRC and Rehab, there are no top-ups of salaries or pensions in CFI, there are no perks such as cars provided to staff, there has been a general freeze in salaries for more than 5 years and much of our work relies on volunteers and the good will of staff and supporters who consistently go beyond the call of duty. CFI relies almost entirely on public fundraising. CFI does 'what it says on the tin' as our Annual Financial Reports demonstrate. We call again on the Government to enact all aspects of the Charity Act to protect the good name of our sector.

Kind regards,

Philip Watt (CEO) Alica May (Editor) Front Cover: Claire Whelan, Mum of Mason (PWCF, age 2) participated in a Skydive for CF with many others in January 2014. See Fundraising section for more information.

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 37

Section 01:

Section 04:

LATEST NEWS:

BRANCH FOCUS:

CFI Annual Conference 2014

By Louise Harty, Chairperson of Mayo Branch, CFl

Page 2Ñ11

Hospital Update Very Good Progress in Lung Transplantation and Organ Donation Issues Survey Shows Inpatient Agreement in SVUH Working Satisfactorily Patient Reported Outcomes in HTA Eastern Branch AGM Ñ Wednesday 19th February çine Stafford, PWCF, is a finalist for 2014 Pramerica youth volunteer awards --

Section 02:

RESEARCH NEWS: Page 12

Page 16Ñ17 --

Section 05:

PWCF SPOTLIGHT: Page 18Ñ19

Never Lose the Fight, By Gr inne Fahey, PWCF age 22 from Thurles, Co Tipperary --

Section 06:

EVENT FOCUS: Page 20

Be One in 1000 for CF Ireland!

Publication of CF Registry of Ireland 2012 Annual Data Report, By Abi Jackson, Researcher, CFRI

Section 07:

Vertex Announces Results of Phase 3 Study of Ivacaftor in PWCF who have the R117H Mutation

Page 21Ñ24

--

Section 03:

INFORMATION/ SUPPORTS: Page 13Ñ15

FUNDRAISING: 65 Roses National Awareness Week 2014 Ñ Better Together Challenges and Events Corporate Thank You --

Exercise Grant 2014 Ñ Round 1 Now Open PWCF Fitness Together Group Cork City Childcare Company Launch New Booklets for Pre-school for Children with CF Long-Term Illness Card and Medical Card: Important news for PWCF and their families Adjustments to the Housing Adaptation Grant Schemes for People with a Disability --

Jan/Feb 2014

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LATEST NEWS

SECTION 01

PAGE 2Ñ11

CFI Annual Conference 2014 Ñ "Better Together" 28th Ñ 30th March 2014,The Galway Bay Hotel, Salthill, Galway The Cystic Fibrosis Ireland Annual Conference will take place on the 28th Ñ 30th March 2014, in the Galway Bay Hotel, Salthill, Galway. This year's conference theme is 'Together We Work Better' focusing on the need for a multi-disciplinary approach in the management of CF. As per previous years, Saturday's agenda offers a wide range of seminars and talks including; updates on new therapies and Kalydeco, importance of exercise, life post-transplant and practical advice and inputs from PWCF. Special Guests will be announced shortly.

We also have two sessions of three parallel seminars running on the Saturday morning and afternoon. We invite members to come and join these informal workshops and interact with other members.

Morning Seminars: • Coping with CFÑ helping parents to deal with the difficult questions • Making physiotherapy fun for children • Cross infection and hygiene control Afternoon Seminars: • Compliance and adherence in CF • New parents discussion group • Transition from paediatric to adult care All CFI members attending the conference can avail of a special hotel rate that will help make the weekend not only enjoyable but affordable too! In order to avail of this special members rate, all guests must register their attendance directly with CF Ireland before booking with the Hotel. It is very important that all individuals attending the Conference are registered with us so we can comfortably cater for all.

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

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Spectrum / Issue 37

Hospital Update Paediatric Issues in Cork University Hospital A report on the challenges in the paediatric unit in CUH has been drawn up by CFI. This arose from a gap in CF specialist nurse cover over a one week period before Christmas. The report has been submitted to the Hospital Management and the HSE. University Hospital Galway The turning of the sod for the new paediatric outpatient unit took place on 8th December 2014 in University Hospital Galway (UHG). The unit, which will cost Û590,000, is being funded by the hospital and the dedicated Hospital fund chaired by Mary Lane Heneghan, Chair of the Galway Branch of CFI. The unit will be located behind the existing paediatric unit in UHG. It will include 4 en-suite examination rooms, a main treatment room for procedures, a gym for physiotherapy and supporting offices for staff.

Marion Keane from Maam, who lost her 14-year old daughter Stephanie to CF 4 years ago, officially turned the first sod.

Marion also lost her son Thomas to illness and says her late uncle wanted to do something to remember both children who died so he bequeathed a house that will provide the funding for the new centre.

Spectrum is an invaluable source of information for members, indeed over 95% of members report reading it (as confirmed through our Grant and Support Services survey in November 2013).

Although a lot of you receive each issue of Spectrum by email, over 1,000 members are still getting the hardcopy by post, and the cost of postage alone often outweighs printing costs for each issue!

At the sod turning for a new Paediatric Outpatient Unit for patients with Cystic Fibrosis at Galway University Hospitals, from left: Mary Lane Heneghan, Chair of Galway Branch, CFI; Maureen Fitzhenry; Marian Keane and Bill Maher, CEO, West / North West Hospitals Group.

Philip Watt, Mary Lane Heneghan and other members of the Galway Branch represented the CFI at the event.

Well done to the Galway Branch of CFI and the hospital fund.

Our Lady of Lourde's Hospital, Drogheda The new outpatient unit in Drogheda has been completed. The official opening will take place in mid-March.

This project has come to fruition from a partnership approach involving CFI, the Louth, Meath and Drogheda CFI branches (Life Matters4CF), and Our Lady of Lourdes Hospital Drogheda.

We are looking forward to the launch day and will report back on the event in future issues of Spectrum.

Jan/Feb 2014

Help Us Reduce Printing and Postage Costs

So once again, we would like to ask you to consider switching to receive Spectrum by email which you can check easily on your smart phone or on your computer at home. Not only would this reduce printing and postage costs, you'd also be doing your bit for the environment!

So what are you waiting for, email info@cfireland.ie or call 1890 311211 and make the switch today!

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Mayo General Hospital, Castlebar The Taoiseach, Enda Kenny, turned the first sod on the site of a new day care and outpatient Cystic Fibrosis facility for adults and children at Mayo General Hospital as part of an official visit to the hospital on Monday 16th December 2013 (see photographs in Branch Focus section).

A total investment of Û1.3m has been agreed for the building, including approximately Û900,000 raised by fundraising contributions co-ordinated by Cystic Fibrosis West (Û615,000), including the Mayo Branch of Cystic Fibrosis Ireland, and national fundraising from Cystic Fibrosis Ireland (Û285,000). A further Û150,000 was contributed from the National Lottery (with Û50,000 to follow next year) and Û200,000 will be provided by West/North West Hospitals Group through Mayo General Hospital. The hospital will equip the new building at an estimated cost of Û40,000.

John Coleman, Louise Harty, Tom s Thompson and Caroline Heffernan and members of the Mayo Branch of CFI represented the CFI at the event and John Coleman spoke on behalf of CFI and Martina Jennings on behalf of CF West. Well done to all in the Mayo Branch of CFI and CF West and to Tom s and Caroline for their crucial support.

St. Vincent's University Hospital It is now 12 months since the new admissions procedures have been in place in SVUH. CFI circulated a survey to be filled in by those who have attended SVUH as inpatients in 2013. 89.7% of patients with CF surveyed agree that the SVUH admissions policy is 'generally working well' (see page 7 in this issue ).

Very Good Progress in Lung Transplantation and Organ Donation Issues There has been significant progress in a number of aspects of organ donation and transplant policy in recent weeks.

2013 preliminary figures for organ donations are: • Deceased donors: 86 • Living Kidney donors and transplants: 3 Transplants from deceased donors: • Kidneys: 147 • Livers: 55 • Lungs: 32 including 9 CF • Hearts: 11 • Pancreas: 10 The Mater Hospital carried out 14 lung transplants in 2012 of which four were for people with CF. In 2013, a total of 32 lung transplants were carried out, of which nine related to people with CF. As part of the Irish Donor Network, CFI have been very active in supporting opt-out consent plus the need for additional resources especially for organ donor co-ordinators. We have taken part in many meetings during 2013 on this issue. The support of Joe Brolly has also helped raise awareness on this issue.

The government have committed Û2.9m for 19 new transplant and organ donation staff including organ donor co-ordinators. The CFI Medical and Scientific Council (MSC) met in December to discuss the new arrangements with the Freeman's Hospital in Newcastle which came into effect in January (see next article). The Mater met with Newcastle and there is agreement between the two parties going forward. The MSC unanimously supported these changes.

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Spectrum / Issue 37

Most Lung Transplantation to be Undertaken in the Mater Last week, the National Centre for Cardiothoracic Surgery at the Mater Hospital formally announced that most adult lung transplantation, including CF lung transplantation will now be undertaken in the Mater Hospital. The small number of paediatric lung transplants of patients in Ireland will continue to be undertaken in the UK. This follows on from major positive developments in the Mater over the past two years including: • The appointment of Ms. Karen Redmond as the first dedicated lung transplant surgeon in the Mater • The ongoing expertise of the existing lung transplant team including Mr Lars N lke and Mr Jim

McCarthy and Transplant Co-ordinator Professor Jim Egan • The forthcoming opening of the new transplant centre in the Mater • The more than doubling of the rate of lung transplants between 2012 and 2013, including CF lung transplants • The forthcoming change in organ donor consent and the allocation by the government of Û2.9 towards increasing transplant staff, including organ donor co-ordinators Ñ something the CFI and the Organ Donor Network have battled for over the last year The Mater Hospital will continue to work closely with the Freeman Hospital in Newcastle on a case by case basis and the HSE will continue to fund adult lung transplants in the UK where necessary. It is anticipated that the small number of paediatric transplants may also be undertaken in a paediatric hospital in Ireland in future, but that in the meantime they will be continued to be undertaken in the UK. The following is an extract from the Press Release issued by the Mater Hospital on Friday 31st of January: Mr. Jim McCarthy, Director at the National Centre for Cardiothoracic Surgery, who performed the first lung transplant with Mr Freddie Wood in 2005 commented: "We will, in the next year, be celebrating ten years of performing lung transplants in Ireland. We have a very skilled and extremely busy surgical team undertaking complex cases.

Part of the strength of the unit is the spectrum of surgery that is carried out. This includes all forms of specialised heart and lung surgery such as transplantation, ventricular assist device implantation for patients with a failing heart who cannot wait for heart transplantation, coronary bypass surgery, valve surgery and adult congenital surgery and the full range of thoracic surgery.

The number of thoracic procedures has increased by approximately 300% over the past 2 to 3 years. This is important in a unit that is now doing a significant amount of lung transplants. We have established a long and valuable relationship with Newcastle and we will continue to consult with them on a case by case basis, as we do with other transplantation facilities around the world. I would like to take this opportunity to express our gratitude to our Newcastle colleagues and, most importantly, to the donors who have given the greatest gift in the most difficult of circumstances."

Jan/Feb 2014

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Mr. Lars Nšlke Cardiothoracic, Surgeon at the Mater Hospital, added: "The relationship we established with Newcastle in 2000, on behalf of the Department of Health, was structured to facilitate the Mater Hospital to commence lung transplant surgery with little to no learning curve.

The Mater has been successful in developing a highly skilled team of surgeons and support staff, who have successfully carried out some of the most complex lung transplants right here in Ireland.

Since the first single lung transplant in Ireland was performed in May in 2005 the range and complexity of transplant surgeries has increased year on year, while maintaining the excellent survival results as published in the British Medical Journal (BMJ) in 2012. (BMJ Open 2012, Mar 28; 2(2)) In January 2006 the first double lung transplant on an emphysema patient and in 2007 the first double lung CF patient transplant was done.

Alternative transplantation strategies such as the use of extra-corporeal life support (ECLS) and lobar lung transplant have been successfully used in the Mater to support and transplant small or complex patients. ECLS is being used before, during and after surgery to support the sickest patients who could not survive without this type of support."

Last year was a record year for lung transplantation at the unit with a total of 32 lung transplants, with excellent survival rates and outcomes comparable to national and international standards. The increase in lung transplants is multi-factorial and would not be possible without the generosity of donor's and their families, at an incredibly stressful time. In addition, with the advent of the HSE National Organ Donation and Transplantation Office there is an enhanced cohesive approach to organ donation and utilisation Philip Watt, CEO of Cystic Fibrosis Ireland and Chairperson of the Irish Donor Network said: "We congratulate the Mater University Hospital lung transplant team. 2013 has been an outstanding year for all lung transplantation, with the overall number of lung transplants increasing from 14 in 2012 to 32 in 2013 including the number of Cystic Fibrosis double lung transplants which increased from 4 in 2012 to 9 in 2013. We look forward to this excellent progress being sustained into 2014 and beyond. We also thank the Newcastle team for all their valued life-saving work and welcome the ongoing co-operation between Ireland and other EU countries on transplant issues going forward."

In a further underscoring of the rational for repatriation the unit and it's team will be moving to new state-of-the-art facilities at the Mater Hospital.

That, along with increasing sub specialisation within the surgical team, will further ensure patients receive the highest possible levels of treatment.

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Spectrum / Issue 37

Survey Shows Inpatient Agreement in SVUH Working Satisfactorily Almost 90% (89.7%) of inpatients with CF surveyed in St Vincent's University Hospital (SVUH) feel that the CF inpatient admissions policy is 'generally working well'.

This is a key conclusion of an online survey that was completed by 39 inpatients with CF who were admitted to SVUH at least once in 2013.

Many of the patients surveyed had been admitted 2,3 or 4 times or more to SVUH during 2013. The survey was completed by almost one quarter of all those with CF who attended as inpatients in the hospital in 2013.

The revised admissions policy was developed in December 2012 in the wake of access problems highlighted by CFI in the media when the new ward block, the Nutley Wing, in St Vincent's Hospital opened in 2012. Following this 'glitch' new procedures were introduced.

At the core of the Agreement that was signed in 2012 on behalf of SVUH Hospital Management, Consultants, the HSE and CFI is a mechanism to ensure that people with CF have access to inpatient rooms when they need them, but to also free up inpatient rooms for use by other patients when they are not being used for CF care. Up to 34 rooms in the new Nutley Wing are available, of which 20 are ring-fenced for CF patients only and 12 can be used by non-CF patients when not needed. Two are set aside for emergency CF admissions at all times.

The number of CF inpatients in SVUH varies. There is, in general, a lower number of patients with CF in the summer months and a higher number in the winter months though 'spikes' in admissions in other months can also occur. The number of inpatients with CF in SVUH varied from 22 in the summer months up to 35 (maximum) in November 2013. The average monthly figures are lower (see graph below).

2013 CF inpatient data supplied by SVUH.

Jan/Feb 2014

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In short, if all 34 rooms in the Nutley Wing had been ring-fenced for CF patient care then there would have been periods where rooms would have been empty but could not be used for other patients.

Philip Watt, CEO of CFI stated that "while the feedback from most people with CF surveyed has been positive, we will not be complacent and there is a minority of inpatients in SVUH who have had a more negative experience that need to be raised with management. We will continue to closely monitor and address all problems that people with CF have in relation to inpatient rooms in SVUH, or other issues should they arise. The policy adopted in SVUH is pragmatic and generally seems to be working well. It provides a useful model for other hospitals that are developing inpatient care for CF, for example in Limerick and Cork."

Summary of Key results from the CFI survey (results applies to those who answered the survey) 89.7% of PWCF admitted in 2013 agree the SVUH admissions agreement is 'generally working well'.

On average, 89.2% of all PWCF admissions in 2013 were to a single ensuite room the new Nutley Wing (the new ward block).

89.7% 10.3%

From your experience, do you feel the inpatient admissions policy being operated in St Vincent's Hospital is generally working well?

Were you admitted to a single en-suite room in the Nutley wing?

On average, 68% of all PWCF admissions to SVUH in 2013 were in the St. Christopher's Ward which is the ward with 20 ring-fenced rooms for PWCF and which is part of the Nutley Wing.

69.2% of those surveyed stated they were very happy with the standard of room provided, 25.6% felt their room was 'satisfactory' and 5.1% (2 people) were unhappy about the room provided to them.

25.6% 69.2% 5.1%

Please indicate your level of satisfaction with the standard of room provided to you.

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Spectrum / Issue 37

While this survey paints a largely positive picture, it should not be inferred that there are no problems.

While it is very encouraging the inpatient admissions policy is perceived by the PWCF surveyed to be 'generally working well' there are points that need to brought to the attention of management.

These include: • A commitment to not use the former private hospital to

accommodate PWCF even on a temporary basis, while recognising this rarely happens at present • The need for further thought to be given to the additional needs of PWCF with Cepaecia, while recognising the additional crossinfection precautions needed • Those who are admitted to other (non-Nutley Wing) single ensuite rooms in SVUH (while small in number) could in some cases be moved more speedily to the Nutley Wing

"While the feedback from most people with CF surveyed has been positive, we will not be complacent" Philip Watt, CEO CFI

Methodology There were 39 completed questionnaires, representing almost one quarter of those who were admitted to SVUH as CF inpatients in 2013.

The survey was undertaken online as a survey monkey and checking measures were included to ensure that only SVUH inpatients could respond.

Jan/Feb 2014

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Patient Reported Outcomes in Health Technology Assessment There has been a significant improvement in the communication between the National Centre for Pharmacoeconomics (NCPE) and patient organisations over the past few months, a relationship which has developed due to the increasing number of new therapies that are in the development pipeline for a wide range of illnesses, including Cystic Fibrosis.

The NCPE are responsible for carrying out the Health Technology Assessment (HTA) of pharmaceutical products for the Health Service Executive (HSE) in Ireland. The HTA is a systematic evaluation of the clinical effectiveness, cost effectiveness and/or the social and ethical impact of a health technology on the lives of patients and the health care system. The HTA ultimately informs the decisions made by health care policy makers; the HSE in an Irish context.

Cystic Fibrosis Ireland was recognised as being the only patient organisation to proactively engage with the NCPE during the HTA and also to provide extremely useful data, which helped to inform the ultimate decision for the reimbursement of Kalydeco.

The NCPE agreed to facilitate a training day on HTAs for Patient Leaders on the 24th January 2014, an event which was attended by a number of patient organisations and representatives. The overall aim of this event was to inform patient organisations on how best to maximise their engagement in the HTA process over the coming years.

During the training day Cystic Fibrosis Ireland was recognised as being the only patient organisation to proactively engage with the NCPE during the HTA and also to provide extremely useful data, which helped to inform the ultimate decision for the reimbursement of Kalydeco.

During the day there were insightful presentations from Professor Michael Barry (Head of the NCPE), Dr Roisin Adams (Deputy Head of NCPE) and Professor Cathal Walsh (NCPE). After much debate and discussion some clear consensus were met by both the NCPE and patient representatives, most importantly; Communication and engagement is a priority. There was a general consensus among those present that the media should not be the first port of call for the patient who wants access to a new treatment and that patient organisations should communicate directly with the NCPE. CF Ireland was again commended on using this approach in the initial stages of the HTA for Kalydeco. The NCPE accepted the importance of communication has never been higher on the list of priorities.

Data provided by patient organisations is invaluable in the assessments processes carried out by the NCPE. The door of the NCPE is open to patient groups to share data and information that would assist them to make more informed decisions for the benefit of the patient. Given that there are a number of new innovative therapies in the pipeline CF Ireland is cognisant that the provision of patient reported outcomes of PWCF taking similar therapies will be more important than ever.

It is one year since the Minister for Health; Dr James O'Reilly approved the reimbursement of Kalydeco for PWCF with the 'Celtic' / G551D genetic mutation. Approx. 120 Irish PWCF are currently in receipt of this new therapy and we would be delighted to hear about your experiences of 'Life on Kalydeco'. If you have been taking Kalydeco, or your child has been taking this new therapy we are hoping you will get in touch with us and let us know how this has impacted on your/your family's life.

Anyone who would like to share their experiences/story please get in touch by contacting Katie on kmurphy@cfireland.ie or call 01 496 2433.

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Spectrum / Issue 37

Eastern Branch AGM ร Wednesday 19th February The Eastern Branch of CF Ireland will hold its next Annual General Meeting on Wednesday 19th February and all members in the area are invited to attend.

The meeting will take place at 8pm in the National Office of CF Ireland at 24 Lower Rathmines Rd, Dublin 6. If you are interested in coming along and meeting other people in the region, please contact Mary McCarroll, Secretary of the Eastern Branch, on 087 411 9812.

To find out more about the Eastern Branch, please see the 'Branch Focus' section of the last issue of Spectrum.

รงine Stafford, PWCF, is Finalist for 2014 Pramerica Youth Volunteer Awards รงine Stafford Clonmel, PWCF, from Clonmel has been announced as a finalist for the 2014 Pramerica youth volunteer awards.

Part of รงine's volunteering was fundraising for the CF Waterford hospital project. She also set up a youth SVP conference in her school, went to Lourdes as a carer and tutored elderly people in computers.

The winners will be announced at a gala dinner in Donegal on the 26th March. Wishing รงine the very best of luck from all at CF Ireland!

For more information on these awards: www.pramerica.ie/spirit/

Jan/Feb 2014

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RESEARCH NEWS

SECTION 02

PAGE 12

Publication of CF Registry of Ireland (CFRI) 2012 Annual Data Report

By Abi Jackson, Researcher, CFRI Ever wondered what information collected by the CF Registry of Ireland can tell us about CF in Ireland?

The CF Registry of Ireland will shortly be publishing their annual report on its website www.cfri.ie/ publications.php.

Nearly 93% of all people with CF in Ireland have agreed to participate in the Registry, with more joining every day. By collecting hospital records for each patient and saving them all in one place, the CF Registry has been able to build a profile of the CF population in Ireland. Having a central database on CF is important for research, for CF services planning, and for supporting new drug/treatment development, approval of new drugs through the regulatory process and ongoing drug safety studies.

Over forty years ago, CF was considered a childhood disease. Information gathered by the CF Registry has shown that in Ireland, over half (52.2%) of all people living with CF today are aged 18 years and older. The oldest Registry member is in their sixties. Registry data has shown that survival continues to improve particularly for younger age cohorts.

In the 2012 update of the Annual Data Report, the CF Registry highlights the growing number of hospitalisations, complications and respiratory exacerbations requiring IV antibiotics experienced by people with CF. In 2012, half of the time adults received IV antibiotics was spent at home, not hospital.

The CFRI endeavours to collect and analyse information relating to CF in order to improve the quality of care for all people with CF. Currently, the CF Registry is involved in monitoring the effect of the introduction of novel therapies (such as Kalydeco) and the newborn CF screening programme. The Registry hopes to share this information in future Annual Data Reports.

Vertex Announces Results of Phase 3 Study of Ivacaftor in People with CF who have the R117H Mutation At the end of 2013 Vertex published the results of the 24-week phase 3 randomised double-blind study of Ivacaftor (Kalydeco) in people with CF over the age of 6 who have at least one copy of the R117H genetic mutation. In the study, the mean absolute difference in the change from baseline in % predicted FEV1 between people on Kalydeco versus those on Placebo was 2.1% and the mean relative difference in % predicted FEV1 was 5%.

Although the study didn't meet its primary endpoint in the absolute change from baseline in FEV1 between patients taking Kalydeco versus those on the placebo, it was noted that "people with the R117H mutation exhibit range of severity in their CF lung disease, and as patients get older, the disease often results in decreased lung function". For example patients aged between 6 and 11 years old taking part in this trial had a mean baseline FEV1 of 96%.

Taking this into account, researchers then stratified data, looking only at the results for people with CF aged 18 years and older. This group showed significant improvements in lung function and other key secondary endpoints. The mean absolute difference in percent predicted FEV1 was 5% and the mean relative treatment was 9.1% through the 24 week treatment period.

Some additional improvements reported for all age groups taking part in this clinical trial were; statistically significant decreases in sweat chloride and improvement in patient-reported outcomes.

There were no significant differences in the frequency of pulmonary exacerbations or changes in BMI noted. For more information on these trial results you can read the full article here: http://investors. vrtx.com/releasedetail.cfm?ReleaseID=814799 12

Spectrum / Issue 37

INFORMATION/SUPPORTS

SECTION 03

PAGE 13Ñ15

Exercise Grant 2014 Ñ Round 1 The first round of the Exercise Grant 2014 went live on Friday 24th January and the application form and guidance notes are now available on our website. As always, this is one of our most popular grant schemes, so please be sure to get your application in as soon as you can to increase the chances of getting the grant.

In response to our recent survey on 'CFI Grants and Support Services' and in the interest of transparency, please see below some commonly asked questions about this scheme: What can the exercise grant be used for?

This grant can be used for any activity that constitutes physical exercise. Examples of purposes for which it can be applied for include: • Gym membership or Sports Club fees • Exercise equipment for home use, for example, treadmill, exercise bike, weights • Exercise or sporting lessons, for example, swimming lessons, horse-riding, yoga, or fitness classes • Trampolines • Bicycles What is the value of the grant?

The maximum value of the Exercise Grant is Û300 for PWCF over 16 years of age, and Û250 for PWCF under 16 years of age Is the grant means tested?

No, the grant is not means tested so income is not taken into consideration when assessing your eligibility for the grant.

When is the application deadline?

The deadline for submitting the application and supporting documentation in Friday 7th March.

How do you decide who to award the grant to?

A number of things are taken into consideration when deciding if an application can be approved: 1. You must be a member of CF Ireland and meet all the grant criteria outlined in the guidelines 2. The application form must be completed and a quotation or receipt must be provided 3. If you were awarded the exercise grant for 3 consecutive years, there must be a break of one calendar year before you can apply again. So, for example, if you were awarded the exercise grant in 2011 (Round 1 or 2), 2012 (Round 1 or 2) and 2013 (Round 1 or 2), you will not be eligible for the grant in 2014 (your 'break' year) and the next time you can apply is in 2015. This rule is implemented in the interest of fairness and to allow as many people as possible avail of the exercise grant.

4. The Exercise grants are awarded on a first-come, first-served basis providing all the grant criteria are met. A total of Û30,000 is allocated to each Round of the exercise grant in 2014. Once this budget is exhausted, we cannot issue further grants until the next Round goes live (a new application form must be supplied for each Round).

For more information, contact Alica on 01 4962433 or email amay@cfireland.ie Jan/Feb 2014

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PWCF Fitness Together Group

By Eimear Higgins, PWCF, Co Cork Would you like to get fitter and healthier? Need some motivation?

Motivation is just one click away! PWCF Fitness Together Group is a Facebook group that is open to all adult PWCF. This group was set up on January 12th 2014 to bring adult PWCF together to motivate and encourage other adult PWCF to become fitter and healthier.

Everyone finds it hard to keep exercising and to remain motivated enough to push yourself, especially in the winter! This is not unique to PWCF! Any group can help to motivate you; however this new group is one of a kind. This is the only group where those who are helping to push and encourage you will understand not only the importance of exercise, but the daily struggles that are synonymous with CF and how these struggles can affect your ability to exercise. By having this group on Facebook, we can help each other to get through the tough days and to keep up the exercise, especially when we have had setbacks, without any risk of cross infection.

This is a place where you can rant about those days where you coughed up a lung in the gym, get excited about those days where you swam an extra length in the pool or laugh about the days where you cannot catch the dog to take him for a walk! This is a place to discover that you are not alone! Whether you can run 20 miles or walk 20 metres, you will find someone who has an insight into why you need encouragement or may understand your frustrations on hard days!

This group is up and running now. It has the highest privacy level on Facebook, "secret". This means that posts are not public. It also means that all members need to be invited into the group.

This group is open to all adult PWCF and can be accessed by posting on the 'PWCF Facebook Group' page that you would like to become a member or asking a current member to add you.

Cork City Childcare Company Launch New Booklets for Pre-school Children with CF Cork City Childcare Company recently developed two booklets 'How to Support a Child with Cystic Fibrosis (CF) in Pre-School: A Guide to Help Parents Navigate the First Steps into Pre-School' and 'Supporting Children with Cystic Fibrosis in ECCE Settings: Information for Practitioners'.

These publications have a practical aim in helping parents and early years workers support children with Cystic Fibrosis to benefit from every opportunity their pre-school experience can offer.

With thanks to Cork City Childcare Company for producing these booklets, which can now also be viewed on the CF Ireland website.

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Spectrum / Issue 37

Long-Term Illness Card and Medical Card: Important news for PWCF and their families CF Ireland circulated the following information to members by email in early January. We are including it here again for those that prefer to keep up to date with developments through Spectrum.

Thanks to a recent change in Department of Health policy, if you are a person with CF who holds a medical card, you are now also entitled to apply for and be granted a long-term illness card.

Cystic Fibrosis is one of the 15 conditions recognised for inclusion in the LTI scheme. The LTI card allows you to receive drugs, medicines, and medical and surgical appliances directly related to the treatment of your illness, free of charge. It does not depend on your income or other circumstances.

The medical card on the other hand is means tested, but can also be provided on discretionary basis in exceptional circumstances.

What does this mean?

As a result of changes in the last budget, medical card holders must now pay a Û2.50 prescription charge for each item dispensed by the pharmacist through this scheme. There are no prescription charges associated with the LTI card.

If you are currently accessing medications related to CF through your medical card, you can now get these through the LTI card and still retain the use of your medical card for other purposes. This would result in you avoiding prescription charges and could save a potential Û25 per family per month.

What do I do next?

Apply for a LTI card if you do not already have one. An application form can be downloaded here: www.hse.ie/eng/services/list/1/schemes/lti/ltiform.pdf or get one from your GP or Local Health Office. It will need to be signed by your doctor or consultant to confirm your condition and list your medications, then bring it to your local health office for processing.

• For more information on the LTI scheme: www.hse.ie/eng/services/list/1/schemes/lti/ • For more information on the Medical Card scheme: www.hse.ie/eng/services/list/1/schemes/mc/

Adjustments to the Housing Adaptation Grant Schemes for People with a Disability The following changes were announced by The Department of the Environment, Community and Local Government in January 2014 in respect of the housing grant for people with a disability.

• The maximum income threshold has been reduced to Û60,000 (previously Û65,000).

• The percentages of approved costs covered by the grant have been adjusted on a sliding scale (but the maximum grant stays at Û30,000, or 95% of approved costs). So for example, a person with an income of up to Û30,000 will have 95 per cent of their costs covered. The proportion covered falls by 10 per cent for every Û5,000 extra in earnings. So, a person with an income of up to Û35,000 will have 85 per cent of their costs covered.

• Extension works will only qualify if no suitable cheaper option is feasible • An occupational therapist must confirm that the works are fit for purpose and that they meet the applicant's needs in the most economic way • Income of all household members will now be included in the means test (though Carer's Allowance should be disregarded) (also applies to the Mobility Aids Grant Scheme) • Applicants must prove that they have complied with the Local Property Tax (also applies to the Mobility Aids Grant Scheme) Jan/Feb 2014

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BRANCH FOCUS

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PAGE 16Ă‘17

Mayo Branch

By Louise Harty, Chairperson of the Mayo Branch, CFI, and mother to Cian, PWCF, age 10 The Mayo branch was re-established after many years of lapse in 2007. For me I just felt that in order to avail of anything for our families we needed to be part of a team. Martin Cahill (RIP) the Fundraising Manager of CF Ireland at the time was really proactive in getting the Mayo branch established. Back then, Galway was the nearest branch and for families living as far away as Belmullet that could mean a 6 hour round trip, which was not a viable option for most.

"The struggles that parents and families can go through is often eased by someone that has walked that road and can offer the reassurance"

Louise Harty, Chairperson of the Mayo Branch, CFI.

Letters were sent to anyone interested in forming a branch to get in contact and our PWCF advocate was able to guide us into what, who and where we were as a branch. The benefits of being a branch meant that we were recognised as a voice for CF and were able to avail of much needed services.

Information as to physiotherapy services became available for those previously not accessed and a CF nurse part-time post was secured on a reviewed annual basis for Mayo General hospital.

A large crowd gathered for the event, which has been many years in the making.

While our branch numbers have never been particularly high, there is a great drive and energy from everyone involved, which keeps things together. It feels good to be able to talk to another parent or person with CF (PWCF) and they know what you are talking about. From a parents perspective I feel it's important for people to have support services nearby whether accessed or not. For me as a parent of a child with Cystic Fibrosis I found, especially in the early days, a sense of isolation as Cian's weakened immune system meant we stayed at home to prevent infections. The struggles that parents and families can go through is often eased by someone that has walked that road and can offer the reassurance.

The idea for the outpatient building started following the publication of the Pollock report (2005), which highlighted the need for dedicated facilities to minimise cross infection and put our people with CF at further risk. Martina Jenning's sister of a PWCF started the initiative and from there it snowballed into a Û1.3 million build which is now on course and building has begun.

An Taoiseach Enda Kenny turned the sod for CFWest building project on 16th December 2013.

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The outpatient build comprises of two ensuite bedrooms incorporating positive and negative air pressure. A treatment room, laboratory, meeting Spectrum / Issue 37

room, kitchenette and exercise corridor will give our PWCF comfortable but, more importantly, safe surroundings. Hospital acquired infections will be minimised and a better standard of care will be implemented. At present, as with many hospitals, our adults with CF are treated within the paediatric unit. The opportunity to receive treatments within a specialised unit offers them a more dignified service in an environment catering specifically for Cystic Fibrosis.

Our fundraising for this build seems to have been ongoing for years. We have had so many fundraisers and events. Our branch can be very imaginative and we have almost looked at every potential money maker possible. Croagh Patrick Challenge, Greenway Cycle challenges (see right), cookery books, auctions, calendars, parachute jumps, theme nights, golf tournaments are only a few of the events put together.

The launch of the 'Challenge the Greenway' event was also attended by An Taoiseach Enda Kenny.

"There is a great drive and energy from many of our members"

The goal of this build for every single person involved is to avail of an opportunity to provide our PWCF with the best possible care in the best possible environment. Towns, villages and communities have joined at a county, national and international level. Schools, colleges, clubs have joined forces to provide an overwhelming sense of support. We have been very fortunate that in a time when money hasn't been as readily available, the generosity of so many people have made this dream a reality.

Jan/Feb 2014

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PWCF SPOTLIGHT

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Never Lose the Fight

By Gr inne Fahey, PWCF Age 22 from Thurles, Co Tipperary Here I stand facing my opponent eye to eye. We gaze at each other with a steely determination. I'm going to give as good as I get, I always do. No matter how tired I am, no matter how out of breath and uncomfortable I feel, I refuse to give up. I will not be defeated. I will not lose this fight.

Recently someone whom I had never met before described me as an extremely determined person. On hearing this, my mam began to laugh in agreement, she told me it was my stubborn nature that ensured I never let anything get in my way. I suppose this is the way I also view having Cystic Fibrosis. I never thought I should be treated any differently from anyone else. This probably stems from the way both my brother and I were brought up. From a young age, we were never wrapped up in cotton wool or allowed to limit ourselves due to our illness. From heading out farming with my dad as children and tumbling around the yard with our sheepdogs to being pushed into the glacial Irish sea every summer, rain, hail or shine by our mother, we were just the same as any of our peers: carefree, full of life and usually covered in mud. We played, we laughed, we fell, we were picked up again, our tears were dried, and we were sent on our way.

Gr inne is currently undertaking a degree in Radiography at UCD.

So when it came to looking at career options and studying at college, "No matter how tired I am, my choices weren't based on what college course would be easiest no matter how out of breath and uncomfortable I feel, to complete and schedule around my treatments, physiotherapy, I refuse to give up. I will not hospital visits and appointments. I wanted to challenge myself but I be defeated. I will not lose also wanted to do something that was worthwhile and rewarding. In this fight. " September 2010 I headed to UCD to study Radiography. Many people were shocked with my career decision and more than a few have said to me "I thought a hospital was the last place you would want to work". However, I find tackling the hospital environment both as a patient and as a student on placement has benefitted me greatly.

Having served time on both sides of the divide, I try to combine my experiences to make sure my patients are always the most important part of the job.

Whether you are questioning going to college with CF or you are a parent or family member worried about whether your child/niece/nephew/ brother or sister is ready to head off into the big bad world alone, I say don't second guess yourself and go for it! Being a college student has made me take control of my disease. I'm not saying that standing on my own two feet and living away from home has been a walk in the park. Learning to sort my own medication, schedule my own hospital appointments and live without my mam's cooking was somewhat of a challenge, but with each obstacle over come I felt like I became more independent. I've met so many wonderful people since I started in UCD. I've made a whole new support system of amazing friends who I know I can count on no matter what situation I may find myself in. They are wonderfully understanding and supportive of me and help me deal with the challenges CF likes to surprise me with every so often.

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Gr inne has a whole support system of amazing friends, pictured above with her friend Louise Buckley.

Spectrum / Issue 37

Unfortunately I was diagnosed with chronic fatigue syndrome on top of my CF in second year of my course. During this time I really felt like I had the stuffing knocked out of me, having to take a leave of absence firstly for a year and then a second year on top of that. There were many low points during this time where I thought I might never get back to living a 'normal' life, well lets say as normal as a PWCF can!

However with time, treatment and the support of my family and friends I eventually recovered and finally returned to UCD last September. I feel that the defect in our genes as people with CF also hardwires us with an unrelenting refusal to give in and it was this persistence that helped me get back on my feet and back to studying. I like to joke that I am taking the scenic route through college; yes, it may take me 6 or 7 years to complete my course but with determination and perseverance hopefully I'll eventually get to the other side. I thank my lucky stars every time I can get up, head into college, learn something new and spend time with my friends. Although this pleasure may sound very mundane, I remind myself daily to never take anything for granted and appreciate even the smallest blessings because sometimes the things we view as a given, are the very things someone else is wishing for.

Gr‡inne with her family. L-R: Martin, (Dad) Philip (brother), Gr‡inne and Geraldine (Mum).

"While my weakness may be my disease, my strength is the way in which I have not allowed it to affect my life "

Every single person we meet daily is fighting his or her own private battles. For some people their opponent in this battle is their struggle with mental health, for some it's their financial or family situation, for me and for so many others it's our battle with a chronic illness which tries to place limits on us reaching our true potential. No matter how many sucker punches CF throws at me, I will not lose my obstinate refusal to give in to this life-limiting disease. While my weakness may be my disease, my strength is the way in which I have not allowed it to affect my life.

To read Gr‡inne's blog, log on to : http://grafor100minds.wordpress. com/

Jan/Feb 2014

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EVENT FOCUS

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PAGE 20

Be One in 1000 for CF Ireland Ñ Flora Women's Mini-Marathon, 2nd June 2014 It's that time of year again to dust off the runners and start training for the Flora Women's MiniMarathon (FWMM). Here at Cystic Fibrosis Ireland (CFI), our goal is to recruit 1000 + women to take part in one of our biggest fundraising initiatives on 2th June 2014.

Our Goal: Recruit 1,000 participants. Your Goal: Be One in 1000 for CF. Why be One in 1000?

Over the past 4 years, the CFI One in 1000 appeal has raised a whopping Û600,000 for people with Cystic Fibrosis (CF) in Ireland. These funds have allowed CFI to fund a new state of the art 4 bed ward for children in Crumlin Hospital, to provide support and services for people with CF and to fund new and additional isolation beds and treatment units nationwide. This is one of our biggest fundraising events Ñ we need your support and dedication to continue this good work.

Training for the mini-marathon is a great way to get active and help raise much needed funds for a worthy cause. Take part individually or get a group together and make a fun day out of it! Like previous years CF Ireland will be hosting a party in Dublin all day with refreshments, music and prizes to reward all our participants.

2013 participants with Philip Watt, CEO of CFI, outside the CF Ireland Race Day party, the Harcourt Hotel, Dublin 2

Where to start?

Entries for the Flora Women's Mini-Marathon 2014 open on February 19th.

STEP 1: Register for the FWMM at www.florawomensminimarathon.ie or find the official entry form in the Evening Herald every Wednesday and Saturday when entries open on February 19th.

STEP 2: Email details of your confirmation/race registration number to runningforcf@cfireland.ie or Lo Call 1890 311 211 STEP 3: Start training!

What comes next?

Once you have registered with us you will be provided with your fundraising pack which includes a t-shirt, sponsorship card, tips for online fundraising and race day information.

Follow the Onein1000 event on Facebook and get tips and advice for the day along the way! www.facebook.com/1in1000 For more information on this event or any other please contact Suzie at runningforcf@cfireland.ie or Lo Call 1890 311 211.

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Spectrum / Issue 37

FUNDRAISING

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PAGE 21Ñ24

65 Roses National Awareness Week 2014 Ñ Better Together Over the last 50 years, CFI has strongly advocated for the improvement of services and support for people with Cystic Fibrosis.

Why 65 Roses?

'65 Roses' is how some children first learn how to say 'Cystic Fibrosis'. The symbol in Ireland for '65 Roses Week' is purple roses.

Why do we fundraise?

Funds are collected at both a national level, and also at local level by branches, and will help fund the work of Cystic Fibrosis Ireland in its fight for adequate national and local services.

There is much to build upon: • The approval of Kalydeco in Ireland • The doubling of the rate of lung transplantation in the Mater hospital, including CF patients • The progress in new facilities in Limerick, Drogheda, Mayo, Crumlin, Galway and Cork, including the contribution of CFI and local support • The ongoing clinical trials for new therapies But there is also much to do: • The impact of cutbacks on CF care • The fact we are still playing catch up because of the historic lack of investment in CF services • The need for better services especially for paediatric patients in Cork University Hospital and for adults in Beaumont Hospital • The increasing difficulties in fundraising because of the CRC controversy which means we need to do more to keep up with fundraising for services and facilities Grants & Support Services Funding is paramount to our grant in-aid service, which provides financial help and access to vital services: Exercise, Transplant, Bereavement, Social & Distress Grants are only but a few of the financial supports provided.

Dedicated inpatient and outpatient facilities around the country Funding is required for vital isolation beds and new treatment centres such as Dublin, Cavan, Drogheda, Castlebar, Limerick and Waterford. This will mean that people with CF will have centres with adequate facilities to avoid cross infection when they attend hospital.

These services are not an option for better health, they are essential and they are needed now. Our goal is to provide these facilities in the shortest timeframe possible.

Jan/Feb 2014

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What will be happening during 65 Roses Week?

Date Friday 28th March Friday 28th March Ñ Sunday 30th March Friday 28th March Ñ Friday 4th April Friday 4th April

What's On Launch of 65 Roses National Awareness Week at our Annual Conference in Galway CFI Annual Conference Selling of 65 Roses Emblems throughout the Country National Awareness Week Events organised locally 65 Roses National Flag Day

How will CFI National Office support fundraising?

The National office will undertake the following: • Distribution of our 65 Roses Emblems • Obtain permit from venues to sell emblems during the awareness week. List of shopping centres confirmed will be available online in the coming days.

• Countrywide support. We are here to help you help us!

How can branches get involved?

• Co-ordination of volunteers and local centres • By organising to sell emblems during 65 Roses Week • By organising other fundraising and awareness initiatives in and around the week and/or throughout the month of April.

What can you do?

Join us in raising awareness for Cystic Fibrosis: • Organise your 65 Roses event, we will provide the support you need.

• Volunteer and join our fundraisers in your local shopping centre.

We would invite everyone to run their own awareness events throughout the month of April.

A number of event have already been plan to help us raising awareness for Cystic Fibrosis, like the 65 Roses Ball, more details below.

65 Roses Ball Join Michelle and Daniel (parents) who are organising the 65 Roses Ball in correspondence with our 65 Roses Awareness Campaign.

65 Roses Ball is being held in the beautiful Fitzpatrick's Castle situated in Killiney, Co Dublin on the 12th April 2014. Tickets are Û60 per person and include a drinks reception 7.30pm with some light music by the Harpur Twins, followed by a three course meal.

Live band All Talk starts at 10pm: fabulous band that will have everyone on the dance floor!

To purchase tickets contact Michelle and Daniel through the Facebook page 65Roses Ball, Fitzpatrick's Castle, Killiney, Co. Dublin or email on 65RosesBallcf@gmail.com You can also call into Dalkey Pharmacy to purchase a ticket at 3 Railway Road, Dalkey.

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Spectrum / Issue 37

Challenges & Events If you would like to take part in any of the challenges, please register online and contact us for your sponsorship pack.

Kilimanjaro Challenge 2014 We had to change dates of this expedition, due to a flight schedule change.

Challenge the Greenway 2014 Challenge the Greenway will take place on March 29th, 2014. The cycle starts at Achill at 11am on the morning of the 29th and finishes at Westport House, Westport.

The new dates are 18th-28th of October. The trek is proving to be extremely popular: to secure your place please get in touch.

New York City Marathon 2014 Already there is a lot of interest for the New York Marathon 2014. Details will be released in the coming weeks. If you are interested in taking part, let us know and start fundraising early.

Paris2Nice Cycle Challenge We are going to have a team in the 2014 Paris2Nice Cycle Challenge this September.

The launch of Challenge the Greenways.

You will see some of the most beautiful parts of the French countryside, all organised by a wellestablished cycling travel company. This is a great opportunity to see France in a different way, to improve your own health and fitness, and to raise funds for CF in this unique challenge!

You can register for this event at www. challengethegreenway.com or by contacting Caroline on 087 9323933.

The money raised from this event goes directly into the CFWest building fund. CFWest is committed to building a Specialised Respiratory Out-Patient Unit and Day Care Centre facility for people with cystic fibrosis in the West of Ireland and is costing Û1,300,000.

Walk to the Sound of Music in Austria for CF Few places are still available for our International Walk to Austria.

The walk will take place from September 20th Ñ If you think you would like to take part Ñ visit the 27th 2014 and the group will head to the home of Paris2Nice website to get all the info you need for closing dates (places are limited!!) registration, the much loved Sound of Music. information evenings, training schedules Ñ www.

The fundraising target for this challenge is Û2,900 paris2nice.com per person (single room supplement available on To join the CF Ireland team Ñ contact Maria Ñ request). mcaldwell@cfireland.ie for details.

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Corporate DAA Charity of the Year 2014 Cystic Fibrosis Ireland is one of three charities chosen by Dublin Airport Authority for their Charity of the Year programme! So when you, your friends and family go through the airport this year, have a look out for our poster and collection points. The two other charities been supported this year are Jack and Jill Foundation and Special Olympics Ireland.

Whether you are planning a long-term partnership or a once-off event, our team are here to support you, email Fundraising at fundraising@cfireland. ie to get involved, raise staff morale and make a difference to the lives of people with CF.

Jonathan Irwin, CEO Jack & Jill Foundation; Matt English, CEO Special Olympics Ireland; Siobh n O'Donnell, Chairperson DAA Charity Committee, and Philip Watt, CEO Cystic Fibrosis Ireland, celebrating the launch of the DAA Charity of The Year 2014 programme.

Thank You Huge thanks to everyone who contributed by organising and/or supporting our fundraising activities throughout the country during the Festive Season and January.

EMS White Collar Boxing Night Thank you to two amazing Frontline Emergency Teams Ñ the Paramedic Staff of the National Ambulance Service who took on the Fire Fighters of Dublin Fire Brigade in an EMS White Collar Boxing Event in aid of Cystic Fibrosis Ireland on November 29th.

In particular we would like to extend our thanks to Claire and Stephen (parents), Derek Gray, Rebecca Forde and all the crowd involved for the huge efforts in making this event a huge success, raising an amazing Û3,427.34 towards the provision of support services for Cystic Fibrosis.

The team is looking forward to organising the next tournament in the summer months.

L-R: Claire Whelan (Mason's mum), Derek Gray of the National Ambulance Service, Stephen Merrigan (Mason's Dad), Mason Merrigan, Peter Conroy of the Irish Fire Services & Philip Watt, CEO CF Ireland.

Skydive for CF Thanks to all the brave people who took part in a Skydive for CF on January 11, 2014 organised through the Irish Parachute Club! See a photo of Claire Whelan on this issue of Spectrum; Well done! We are in awe of you!! Once all the funds are through we'll announce the total raised. Also, a big thanks to Ian and Caroline and the crew at the Irish Parachute Club for facilitating the CF team on the day If you would like to participate in a skydive for CF, please email fundraising@cfireland.ie

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Spectrum / Issue 37

Jan/Feb 2014

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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 37

Charity: CHY6350 26