Issuu

SPECTRUM

IN THIS ISSUE:

Published by Cystic Fibrosis Ireland

Issue 35: Sept/Oct 2013 www.cfireland.ie

• Team at Cork University Hospital secure EU research funding • Thinking well and Feeling well as a PWCF • LTI vs the Medical Card • Branch Focus on Waterford Sept/Oct 2013 • Spotlights from Gemma Kent and Lawrence Brennan

Dear All, Cystic Fibrosis Ireland (CFI) will be meeting with senior management in Cork University Hospital (CUH) and the HSE concerning specialised CF nurse cover in the paediatric unit of CUH. The gap in nursing cover reveals a systemic problem that has been building in Cork and in many other CF specialist centres and which has been previously highlighted by CFI. Because of government health policy across the country, key healthcare staff on sick and maternity leave are not being replaced. When this policy combines with increasing patient numbers, as is the case in Cork, there is a real danger that there will be gaps in services at critical times. There was a great turn out for the Eastern Branch 'Beds for Beaumont' walk on Sunday 29th September on a beautiful autumnal day. It marks the beginning of a campaign to build 13 inpatient rooms for adults with CF in Beaumont Hospital. The building projects in Limerick and Drogheda Hospitals are progressing very well. Many congratulations to local branches in the areas which have combined so effectively to raise funding for these essential projects (TLC4CF and LM4CF) respectively, with support from the National Office. Fundraising for 4 inpatient paediatric rooms in Waterford and for a new outpatient centre in Castlebar are also progressing well and we hope to be signing contracts for the Mayo General Hospital project shortly. The Galway Branch, led by Mary Lane Heneghan, and the CF team, led by Dr Mary Herzig, have made great progress in developing plans for a new paediatric unit in University Hospital Galway, in a relatively short period of time. This development will make a significant difference when it is finished. More information to follow in future. In this issue of Spectrum there is also more information on the excellent news about the Cork led international CF research project. With many congratulations to all in CUH, especially Dr Barry Plant, who is also Chair of the CFI Medical and Scientific Council. The latest encouraging figures for lung transplantation in the Mater for the year to date are reassuring and are also featured in this issue. Kind regards, Philip Watt (CEO), Alica May (Editor) Front Cover: Lorraine Moore, Alex Moore (PWCF, 8) and David Moore at the PFAI Over 40's Football Match on 14th September (see page 22 for more). 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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Section 05:

LATEST NEWS

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International Project led by Cork University Hospital to Develop Personalised Antibiotic Treatment for CF patients During Respiratory Infections An international consortium of Cystic Fibrosis clinicians and scientists, led by Dr Barry Plant based in Cork University Hospital has launched a major EU-funded research project focused on the development and trial of personalised antibiotic treatment for patients with CF during respiratory infections. CFMATTERS an acronym for 'Cystic Fibrosis Microbiome-determined Antibiotic Therapy Trial in Exacerbations: Results Stratified' will receive approximately Ă›6 million in funding from the European Union's Seventh Framework Programme. At present, when a person with CF has a respiratory infection they are treated with more general antibiotics. There are fears that this approach has built up patient resistance to antibiotic treatment. As part of this new study, mucus will be taken from the CF patient at the time of infection and its bacterial DNA will be analysed. "CFMATTERS offers a personalised approach to antibiotic treatment. It will enhance individual patient responses and decrease drug resistance by employing next generation technologies. CFMATTERS brings together a powerhouse of international expert clinicians and scientists to further enhance the understanding on how best to treat all chronic and acute infections," said Dr Barry Plant, director of the Adult CF Centre at Cork University Hospital.

Congratulations to Dr Barry Plant, who recently secured EU funding for an exciting research project.

It is widely hoped that CF will just be the first disease to be treated in this way, with a whole range of other antibiotic-treated diseases open to inclusion in the future. Antibiotic resistance is one of the most significant challenges facing the healthcare system in the EU owing to unnecessary and inappropriate use of antibiotics. Personalised antibiotic treatment could limit the development of anti-microbial resistance globally, by only prescribing those antibiotics that are necessary for an individual patient. Cystic Fibrosis Ireland CEO Phillip Watt said: "This is a tremendous opportunity for Ireland to become a world leader in CF care and drug resistance. The success of CFMATTERS will have important, positive implications for all patients with CF and their families." The EU-funded study will be completed over the next three years, with the Irish leg to be undertaken at Cork University Hospital.

CF Ireland Responds to Staff Shortages in CUH A number of parents of children/young people with CF have contacted us recently regarding the absence of a specialist nurse in the CF paediatric unit in Cork University Hospital for a period of 2 weeks commencing 24th September 2013. A meeting has been arranged with the senior hospital management team in CUH including the CEO in the Hospital to highlight our strong concerns in relation to this matter. Minister for Health, James Reilly TD has also been directly contacted as this problem is impacted upon by:

Spectrum / Issue 35

1) The HSE policy of not replacing staff who are on maternity and sick leave and 2) Many CF centres around the country are understaffed, in particular centres where there has been an increase in CF patients in recent years, such as Cork.

Progress in Transplant and Organ Donation in Ireland There has been an encouraging increase in lung transplantation rates in the Mater Hospital in recent months, including CF double lung transplants. Between January 2013 and September 2013 (9 months), 7 CF double lung transplants have been undertaken in the Mater, compared with 4 CF double lung transplants over the 12 months of 2012. Total lung transplantation has also increased. There has been a total of 20 lung transplants to date compared with 14 for the whole of last year. Cystic Fibrosis Ireland has taken a leading role in supporting the development of the lung transplant programme in Ireland through: • Advocating for a dedicated lung transplant surgeon to be appointed. Ms Karen Redmond was appointed in October 2011 • Advocating for Organ Donor Co-ordinators to be appointed in our major ICU hospitals as part of the change in a soft opt out system of organ donor consent • Supporting the innovative EVLP lung perfusion process in the Mater Hospital pioneered by Ms Redmond in partnership with the 'Second Chance' fundraising group • The government has signalled that it intends to change the system of organ donor consent as part of the forthcoming Human Tissue Bill. The submission from CFI and other patient groups is available on our website www.cfireland.ie

Positive Feedback from our Members about the Services Provided by CFI Many thanks to everyone who filled in our questionnaire about the services we provide in Cystic Fibrosis Ireland. The results have been presented to the Board of CFI and have helped shape our strategic plan for 2013/2014. A more detailed version will be available on our website in the near future. Some key findings include: • High satisfaction levels on the advocacy and services provided by CF Ireland, but also the need for us to do more on particular issues, including access to education and employment • Social welfare, medical and treatment information, education and travel are the issues that our members most often seek advice on (parents and PWCF) • Communications with are members are highly valued, especially through Spectrum, but you also wanted to have more 'face to face contact' for example through more regional information meetings and the need for more information on particular issues on our website • There needs to be a stronger focus on the South West Cork/Kerry in our work and we should better communicate the work that we are doing for that region • The 50th year events have been very well received by most of our members and we should consider a national remembrance and thanksgiving event again in the future • There is recognition of the work we have undertaken on transplant issues, but we need to do more in relation to post-transplant support Sept/Oct 2013

There were 261 responses to our survey which is a valid response in statistical terms of which 49% were parents, 38% were PWCF and 8% health care professionals. We can only give a brief flavour of the survey here for space reasons. For example: In response to the question "Do you feel that CFI plays an active role in advocating for improved CF services in Ireland?" 92% said ' Yes' which is very encouraging. A huge focus of our work in recent months and indeed years has been to improve CF services across Ireland. Some of the outcome of that work you will know includes: • The improvement of many CF centres across the country, not just in Dublin but in many key centres through advocacy, fundraising and of course the Pollock Report which identified designated CF centres and significantly increased the number of CF consultants and team members around the country • The advocacy to improve access to new and innovative drugs, including Kalydeco • The advocacy to improve transplant and organ donor rates in Ireland including the appointment of the first dedicated lung transplant surgeon to the Mater • The advocacy against cutbacks in CF services • The advocacy for individual members including in relation to benefits, medical cards, education etc In response to the question: Have you ever contacted CFI and/or the CF Advocates for information and advice? 68.5% of PWCF have contacted CFI advocates for information and advice 76.7% of Parents have contact CFI advocates for information and advice For those that answered 'Yes' to the previous question, we asked respondents to indicate the area in which they sought advice and guidance. For PWCF benefits and entitlements followed by information on medical issues/treatment; education and travel (there was a similar response from parents). In response to the question: 'How satisfied were you with the support and advice provided by CFI and the CF Advocates in helping resolve your query?', again there was a very encouraging response with almost 83% saying the service was 'excellent or good'. This still leaves a margin for improvement which we will work on going forward.

In response to the question 'Do you feel that CFI plays an active role in advocating for improved CF services in Ireland?' 92.7% of respondents said 'Yes'.

Above are the main areas in which PWCF seek advice and guidance from CFI and/or the CF Advocates.

Spectrum / Issue 35

In response to the question: Are there any particular issues or challenges you are affected by and that you feel CFI should highlight more from an advocacy point of view, the following were highlighted below (HCP refers to health care professionals).

"On speaking with patients, all grants are much appreciated, and reduce the worry and financial hardship of certain aspects relating to their care." (Quote from Health care professional) How satisfied were you with the support and advice provided by CFI and the CF Advocates in helping resolve your query?

Are there any particular issues or challenges you are affected by and that you feel CFI should highlight more from an advocacy point of view? PWCF PARENTS HCP/OTHERS 1. Employment Ñ need for Medical card to be Patients on the transplant list flexible working conditions/ available to all PWCF should not have to review their working from home medical card it should be granted on an emergency/long term basis without financial assessment 2 Disability Allowance Ñ People in rural areas are Core staffing is important for all particularly when co-habiting very isolated CF centres. I think it's important to ensure that large CF centres have appropriate core staff who can then advise smaller centres. 3 Medical card issues Government to provide Campaigning to keep small centres support for capital dealing with a very small number projects of individuals can be counterproductive 4 Fertility/PGD costs Promoting organ donation awareness 5 Housing support Educating disability officers in 3rd level about CF 6 Health insurance 7 Housing Support Finally, a heartening 95% of our members read Spectrum Ñ thanks for all your feedback, its much appreciated. It will really help how we shape our services going forward

Sept/Oct 2013

FEATURE FOCUS

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Thinking well and Feeling well as a Person with CF By, Dr Ail n O'Dea, Senior Clinical Psychologist working in CF in Beaumont Hospital Living with a chronic health problem can be stressful full stop. Living with CF is no different. As many readers will know, there are times when the challenges you face as a person with CF may cause you to feel worried, anxious or even down. As a psychologist who has worked with people with CF for several years I am genuinely struck by how well PWCF cope most of the time. Resilience is the norm. That said there are times when the stress of coping with CF can cause upset and even distress to the most resilient of people. Challenges in CF The experience of living with CF is totally individual to each PWCF. While there is certainly no "one size fits all" way of describing the emotional issues in CF, there are particular issues that tend to be more challenging than others, such as the following: • Adjusting to change Ñ coping with changes to your treatment, changes in your health or in your daily life as a result of CF can be a source of stress • Coping with the demands of staying well Ñ the pressure of having a busy treatment schedule to keep up on a daily basis is often a big challenge in CF • CF and your personal life Ñ CF does not define you, however, there may be times when CF impacts more on your relationships and choices in life and this can be difficult

"It's no one thing in CF, it's all the different things added together that sometimes makes it hard to deal with." (Quote from PWCF)

Helpful Coping Strategies It's a short statement, but the quote below summarises this whole section in many ways. You might find it interesting to know that the person who said this is someone who has dealt with a lot of the most challenging aspects of CF for a long time. "Thinking well" doesn't always mean being positive. Expressing anger, upset or frustration can be a positive thing if it's what you need to do. • Talk: Talking helps. It's not always possible to change the reality of what you're dealing with, but talking to the right person can help you to deal with that reality in the best possible way • Stay Active: Exercise, even at low levels, can boost your immune system, your sense of well-being and your mood. Even simple stretches or a short walk can help • Connect: A lot of people with CF overcome the cross-infection issue by getting support from other PWCF online • Laughter & Fun: It's not always easy to enjoy the lighter side of things, especially when you're unwell, but laughter and positive thoughts support your immune system by fighting stress and helping you feel connected with others • Relaxation: Guided relaxation exercises focussed on the breath or the body can help to slow things down and support you to connect with your body at times of stress 6

"When I'm thinking well I'm feeling well." (Quote from PWCF)

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• Mindfulness: Mindfulness is a practice that helps you to stay in the here and now by paying attention to what's happening in your body and your mind. The Beaumont Hospital website has a great resource, the Mindfulness and Relaxation Centre (MARC), where you can learn more about this and download free exercises (www. beaumont.ie/marc) • Watch that Thought: We all have patterns of thinking that are unhelpful. The problem is that they often become so automatic we're not even aware they're happening • If you're interested in learning more about this area there are lots of websites, including the following (www.cci.health.wa.gov.au/ resources/doctors.cfm) you may find helpful. Sitting down with a therapist or psychologist to look at your thinking patterns in more detail is also an option to consider • Make Plans: PWCF often report that planning something to look forward to, even something small, is really important, especially if you're going through a difficult time When and How to get Support Everyone gets down sometimes. Everyone has anxious days for all kinds of reasons. Most times you will work through upset or distress by yourself. There may be times however, when you may benefit from extra support, particularly if you are finding anxiety hard to deal with or if you're worried that you're in bad form and can't pull yourself out of it. Your first port of call should be to talk to a health professional you trust, such as a member of your CF team; they are used to dealing with these issues and can refer you on for extra support if necessary. Seeing a therapist or psychologist for "talk" therapy may also be an option. If there is a psychologist on your CF team he or she can help you understand what's happening and support you on the road to recovery. For some people support groups and medication are also helpful.

"I think how I feel healthwise ties in hugely with how I am feeling mentally. If I am down in myself I feel sick, chesty, tired. But when I'm happy, even if I have an infection, I still feel good. So I try to keep on top of my thoughts, don't let things build up." (Quote from PWCF)

The most important thing if you're feeling down or anxious is that you let someone know and get the help you need since looking after you, your emotional and mental health, is a key part of living well with CF. Sincere thanks to the many people with CF attending the Beaumont Hospital CF unit who have shaped this article and the booklet "Living Well with CF: Taking Care of You" by sharing their stories. It is a privilege to work with you. Thanks in particular to Orla Walshe and Dean Archbold for their assistance. Dr Ail n O'Dea is a Senior Clinical Psychologist working in CF in Beaumont Hospital. She can be contacted at ailinodea@beaumont.ie Sept/Oct 2013

CLINICAL TRIALS

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Over the past year there has been a lot of focus on participation in clinical trials Ñ but what does it all mean? What is a clinical trial? A clinical trial is defined as "a prospective study comparing the effect and value of intervention(s) against a control in human beings". Clinical trials are carried out in order to evaluate the effectiveness and safety of a new drug or medical treatment. Clinical trials are conducted in phases which map out the progression of a clinical trial from preclinical research through to approval and administration of the new treatment.

Participating in a Clinical Trial Participating in a clinical trial is voluntary and therefore it is the person's decision if they would like to participate or not. However, there are factors that allow someone to participate (inclusion criteria), and factors that disqualify Phases of a clinical trial someone from participating (exclusion criteria). Preclinical research: Before new treatment can be Generally, these are based on things such as age, administered to patients, the underlying research gender, illness, previous medical treatment, and hypothesis (the explanation for how the new other medical conditions. treatment works) must be proven in a laboratory. This stage is called preclinical research, and it Except in exceptional circumstances you cannot often takes years to turn this knowledge into a be entered into a trial without signing an informed new treatment . consent form. This information is vital to ensure participants are aware of and understand the È Phase 1 trials are usually conducted with a small key facts about a clinical trial before deciding number of healthy volunteers with a particular whether or not to participate. Signing the focus on participant safety, examining the side- informed consent is not a contract. Participants effects of a drug. This phase often examines how may withdraw from a clinical trial at any time the drug is metabolised and excreted. before or during a clinical trial. Withdrawing from a trial before completion will not impact on the È Phase 2 trials test a new drug in a larger group medical care you receive in your CF centre. of people who have a certain disease or condition. Very often in phase 2, participants receiving the Can I find out about ongoing clinical trials? drug are compared with participants receiving a Your medical team should be your first form of placebo (inactive substance). Phase 2 trials are contact when enquiring about clinical trials. Cystic primarily concerned with the safety of the new Fibrosis Foundation (US) has a useful resource drug and short-term adverse effects are studied. which maps the development of drugs directly affecting people with CF, which is available Treatments will only move into a Phase 3 clinical at the following link: www.cff.org/research/ trial if phases 1 and 2 suggest that a treatment drugdevelopmentpipeline. is useful and safe in ways that patients would regard as important . Another useful resource from the US provides information on trials conducted around the world È Phase 3 trials either compare new drugs with and is available here: www.clinicaltrials.gov. whatever treatments are currently in use or with a placebo drug. This stage examines how well the 1 Friedman, L.M., Furberg, C., & DeMets, D.L. (2008). treatment works in practice, and examines any Fundementals of Clinical Trials. Springer: New York. 2 Hulley, S.B., et al. (2013). Designing Clinical Research. side-effects of the new treatment. È Phase 4 studies are carried out after a drug has been approved for marketing. These studies aim to gather additional information about a drug's safety, efficacy or optimal use. 8

3 IPPOSI. So you've been asked to take part in a clinical trial? www.ipposi.ie/index.php/information-centre/clinicalresearch 4 Clinical Trials.Gov. Glossary of Common Site Terms. http://clinicaltrials.gov/ct2/about-studies/glossary# Spectrum / Issue 35

INFORMATION/SUPPORTS Flu Vaccinations Ñ Reminder

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Who should NOT get seasonal flu vaccine? The vaccine should not be given to those with a history of severe allergic (anaphylaxis) reaction to a previous dose of the vaccine or any of its constituents.

What is seasonal flu (influenza)? Seasonal Flu is a highly infectious viral illness of the respiratory tract that can be life threatening. Flu is a serious illness which can cause complications in people with long term medical conditions, those What about people with egg allergy? People with egg allergy can get seasonal flu aged 65 years and over and pregnant women. vaccine. This may be given by your GP or you may Is it cold or flu? need referral to a hospital specialist. Flu symptoms come on suddenly with a fever, muscle aches, headache and fatigue. A cold is a Why do pregnant women need to get seasonal flu much less severe illness than flu. A cold usually vaccine? starts gradually with a sore throat and a blocked Pregnant women are at higher risk of severe or runny nose. Symptoms of a cold are generally complications from flu. Flu vaccine protects mild compared to flu. pregnant women during pregnancy and provides ongoing protection to their newborn baby. What is the seasonal (annual) flu vaccine? Each year the seasonal (annual) flu vaccine When should you get the flu vaccine? contains three common influenza virus strains. Vaccination should take place in Sept and Oct. The flu virus changes each year Ñ this is why a new influenza vaccine has to be given each year. How long does it take the vaccine to work? The vaccine starts to work within 2 weeks. How does seasonal flu vaccine work? Seasonal flu vaccine helps the person's immune What can I expect after vaccination? system to produce antibodies to the flu virus. The most common side effects will be mild and When someone who has been vaccinated comes may include soreness, redness or swelling where into contact with the virus these antibodies the injection was given. Headache, fever, aches attack the virus. and tiredness may occur. Some people may have mild sweating and shivering as their immune How safe is flu vaccine? system responds to the vaccine. Seasonal flu vaccines have been given for more than 60 years to millions of people worldwide. How do I get vaccinated? Reactions are generally mild and serious side People aged 18 years or older may attend either effects are very rare. The seasonal flu vaccines their GP or Pharmacist. People under 18 years of cannot give you the flu. age should attend their GP for vaccination. Who should get seasonal flu vaccine? Vaccination is strongly recommended for: • Persons aged 65 and over and those with a long-term medical condition such as diabetes, heart, kidney, liver, lung (including Cystic Fibrosis) or neurological disease • People whose immune system is impaired due to disease or treatment • Persons with a body mass index (BMI) over 40 • Pregnant women (can be given at any stage of pregnancy) • Residents of nursing homes and other long stay institutions, healthcare workers and carers • People with regular close contact with poultry, water fowl or pigs. Sept/Oct 2013

If you have a Medical Card or GP Visit Card the vaccine and consultation are free. If you do not have either of these you will be charged a consultation fee for seasonal flu vaccine. Please make an appointment with your GP or Pharmacist NOW. Pneumococcal vaccine If you are 65 or over or have a long term medical condition you should also ask your doctor about the pneumococcal vaccine which protects against pneumonia if you have not previously received it. For more information visit www.immunisation.ie 9

McCabes Pharmacy Special Offer Ñ Free Flu Vaccination! Flu Vaccine Sign A3 landscape:Layout 1

As you may know, McCabes Pharmacy chose Cystic Fibrosis Ireland as their Charity of the Year for 2013. As such, McCabes Pharmacy are now offering people with Cystic Fibrosis and their immediate families a FREE Flu vaccination in any of their branches! This service is available to anybody over the age of 18 years. If you wish to avail of this service, please visit www. mccabespharmacy.com to find your nearest branch.

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Arm Yourself with a flu vaccine Getting a flu vaccination is the single best way to avoid getting the flu. Plus, it can help you avoid serious complications, especially if you’re at higher risk.

High Risk ● ● ● ● ● ● ● ● ●

Persons aged 65 and over Those with a long-term medical condition such as diabetes, heart or lung disease People whose immune system is impaired due to disease or treatment Persons with a body mass index (BMI) over 40 Pregnant women (can be given at any stage of pregnancy) Residents of nursing homes and other long stay institutions Healthcare workers Carers People with regular close contact with poultry, water fowl or pigs

For more information log on to www.mccabespharmacy.com

McCabes are offering a FREE flu vaccine for PWCF this year! How do I avail of this offer? You must make an appointment with the pharmacist in advance of going to the pharmacy.

You must tell the pharmacist that you are a person with Cystic Fibrosis or are an immediate family member. This is to ensure no other person with Cystic Fibrosis will be in the pharmacy at the same time. McCabes pharmacy will endeavour to space out appointments for PWCF half an hour apart. The vaccination will be conducted in a well ventilated area and our hygiene standards are impeccable. Fully trained pharmacists will administer the vaccination. The procedure will take approx. 10 minutes and you must allow enough time to remain in the pharmacy for 15 minutes after the vaccination. Please ensure that you bring your Long-term Illness book or medical card with you. If it is a family member getting the vaccination, please bring the same with you and a source of ID. For more information on McCabes Flu vaccination service please log onto: www.mccabespharmacy. com/health-checks/flu-vaccine-vaccinations-ireland

Development of Infection Control and Equipment Care Information Resources Following an extremely informative session regarding infection control and equipment care at the CF Ireland National Conference 2013, we are currently developing an information resource addressing the three main topics highlighted in this session; basic infection control, equipment care and personal hygiene. In partnership with Ms Barbara Slevin (Assistant Director Of Nursing Infection Prevention & Control Mid-Western Regional Hospital Group) we aim to have this practical resource available for all of our members in the coming months. In the meantime, if you have any questions or particular issues in relation to this topic please get in touch with CF Ireland and we will do our best to ensure these issues are addressed in our information resource. For more information call 01 496 2433 or email Katie at kmurphy@cfireland.ie. 10

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LTI vs the Medical Card One of the many questions we get from members to CF is "what are the advantage of the Medical Card over the Long-Term Illness (LTI) card?" The medical card is mean tested. To qualify for a medical card your weekly income must be below a certain figure for your family size. Cash income, savings, investments and property (except for your own home) are taken into account in the means test. PWCF are not automatically entitled to a medical card. The LTI scheme does not depend on your income or other circumstances and is separate from the medical card scheme and the GP visit card scheme. PWCFcan get free drugs, medicines, medical and surgical appliances for the treatment of CF under the LTI scheme. PWCF are automatically entitled to an LTI book as it does not depend on income or other circumstances, unlike the medical card. This book lists the drugs and medicines for the treatment of your condition, which will be provided to you free of charge through your community pharmacist. All that you need to do is apply for one at your Local Health Office. Are there any advantages of the LTI scheme over the medical card? The big advantage of the LTI scheme is that you don't have to pay prescription charges. A Û1.50 prescription charge is charged for each item that is dispensed by your pharmacist through the medical card Ñ this expense could rise to Û19.50 per month or Û234 per year for people using the medical card. All items listed in your LTI book are dispensed free of charge through the LTI scheme. Secondly, as your LTI book lists all the items for the treatment of your CF, you don't have to go to your local GP for ongoing prescriptions Ñ you can just walk into the pharmacy and order your medication. If you need to get new items added to your LTI book, you just need to go to the Local Health Office with the prescription from the CF Consultant/GP and they can add it to your LTI book. Note that all new drugs and medicines must be related to your CF in order for them to be added to the LTI book. Are there any advantages of the medical card over the LTI scheme? PWCF who have an LTI book and not a medical card, can be liable for inpatient charges of Û75 per day up to a maximum of Û750 in any 12 consecutive months. This charge is generally relinquished for PWCF as persons receiving treatment for prescribed infectious diseases get the charge waived by the hospital. If you hold a medical card you do not have to pay the inpatient charges. Sept/Oct 2013

Very few PWCF under 16 have medical cards as most PWCF only get the medical card as a result of being on Disability Allowance or a Back to Work Scheme. The following health services are available to people in receipt of a medical card: • G eneral medical and surgical services, including all inpatient services and outpatient services in a public ward in a public hospital (including consultant services) • Medical and midwifery care for mothers and infants • Free GP care from those doctors who have a contract with the HSE • Supply of prescribed approved medicines and appliances subject to prescription charge for each item that is dispensed costing up to Û19.50 per month or Û234 per year over the medical card • Dental, ophthalmic, and aural services • A maternity cash grant for each child born From 1st January 2013 persons on medical cards pay a reduced rate of Universal Social Charge Ñ 4% on income above Û10,036 to Û60,000 and 7% on income above Û60,000. On average if your income is Û30,000 you can save Û900 per year, increasing to a total of Û2,000 on income up to Û60,000.

Medical Card Reviews A number of people have contacted CF Ireland recently to say their medical card is being reviewed. The medical card is usually issued for 3 years after which your eligibility is reviewed. Depending on your circumstances, it may be issued for a shorter period. If your circumstances change, you must inform the HSE, as you may no longer be eligible. If your income or family circumstances change you must inform Client Registration Unit, LoCall 1890 252 919. The HSE may also carry out random reviews of continued eligibility, to ensure that people who hold cards are still eligible, based on national guidelines. If you are selected at random for a review, you will receive a personalised letter and review form for completion. You will be notified of the specific date by which the review form must be returned to the Client Registration Unit in Dublin. If you do not return your review form your application cannot be re-assessed and your card may not be re-issued. You may continue to use your expired card to get medications while a review is taking place, as long as you continue to be involved in the review process. Please contact us here at CF Ireland if you experience any trouble in relation to getting medications while your card is being reviewed. Appeals If you have been refused a medical card and are not satisfied with the decision, you may have it reviewed at your Local Health Office. Your circumstances may have changed or you may have left out some relevant information from the original application. If following this you are still not satisfied you may make an appeal to the Appeals Office of your HSE Area. The contact details will also be contained in your letter of refusal. The Appeals Office will conduct a reassessment of your application. This will be conducted by HSE staff who were not involved in deciding on your original application. GP Visit Cards Having a GP Visit Card only allows you to visit your GP for free. To apply for a GP Visit Card, you use the same application form as that for a medical card. While your GP Visit Card application is being processed, the HSE will also assess your entitlement for a full medical card. Eligibility for all GP Visit Cards is means tested, but the income guidelines are currently 50% higher than for the medical card. For information and guidelines on assessments see HSE guide to Medical Cards/ G.P visit Cards: www.hse.ie/eng/services/list/1/schemes/mc/forms/ assessmentguidelines.pdf 12

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Exercise Grant 2013 Round 2 Ñ Still Time to Apply! There is still time to apply to Round 2 of the Exercise Grant Scheme Ñ the deadline is Friday 18th October. Just a reminder to those of you who have not yet applied, the application form is available on our website. This will need to be sent to the National Office, along with either a receipt or quotation to show what it is you plan to use the grant for. We aim to let you know within a couple of weeks whether your grant application was successful or not. Applications are assessed on a first-come, first served basis. We have Û30,000 allocated in the budget for this round. Be sure to get your applications in as soon as you can to be in with the best chance of securing a grant in this call! For more information please contact Alica at amay@cfireland.ie or call 01 4962433.

Fertility Grant 2013 Ñ Now Closed The Fertility Grant Scheme 2013 is now closed. There was a lot of interest in the fertility grant over the past few months and we were delighted to be able to approve 15 applications for people with CF. We hope to have some positive stories to share from these applicants in time to come Ñ keep an eye out in Spotlight! The Fertility Grant Scheme will open again in May 2014. If you have any feedback for how the scheme should be changed to better reflect your needs for next year, please email Alica at amay@cfireland.ie.

'Living with Loss' Ñ Public Information Evening on Bereavement November is traditionally a month for remembrance. The Irish Hospice Foundation event aims to provide information about grief and the range of supports available to bereaved people. Members of the public are invited to attend a free public event which will be held on Friday 1st November from 5.30-8.30pm at Alexander Hotel in Dublin 2. This is a 'drop in' evening. The evening will open at 5.30pm with a formal introduction and an opportunity to chat to voluntary bereavement support services about the supports they provide. At 6.30pm John Lonergan will address the gathering and speak on the theme 'Living with Loss'. At 7.30pm Mary O'Rourke will give a personal reflection on loss. Sept/Oct 2013

BRANCH FOCUS

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Waterford Branch Ñ Beat CF in the South East By Anne Doyle, Clinical Nurse Specialist for CF at Waterford Regional Hospital The Waterford Regional Hospital (WRH) Paediatric Project launched in December 2012 under the title ÔBeat CF in the South EastÕ. The first meeting in Kilkenny was well attended and a committee was subsequently formed. The official launch of this project took place in Dooley's Hotel Waterford on the 4th December 2012. The project involves the refurbishment of 4 rooms on the Paediatric Ward to have en-suite and stateof-art infection control facilities. We currently have 25 children attending WRH and, although we have single rooms, none are en-suite. Going forward meetings have been held weekly on Monday nights in Dooley's Hotel, courtesy of the hotel, and we owe a debt of gratitude for their support for this project as they also hosted a number of our fundraising events including 'A Valentines Dance' and a fashion show. An upcoming event that will also be held in the hotel on the 26th October is a disco entitled 'DJs Unite for Cystic Fibrosis' and will involve 8 DJs on board for the night which looks like the makings of a great event for the October bank holiday weekend. "Our committee meetings have been a great success for brain storming ideas," Anne Doyle Clinical Nurse Specialist for CF at Waterford Regional Hospital Other events over the year included quiz nights, a Bed Push in Waterford City, the Carrick on Suir Motor Club, Willie Loughnan Forrest Run, shave and wax events, 10k walks, sponsored cycles, golf classics and a participant in the Waterford Viking Marathon to name but a few. We also received a large volume of donations from local business in the form of cash and spot prizes following letter writing and phone contact from members of the committee. A number of bucket collections were also very successful.

Dr Animitra Das, Consultant Paediatrician, and Anne Doyle, CF CNS, at Waterford Regional Hospital.

We could not have raised all this money, almost Û150 000 to date, without the help and support of the fabulous people of Waterford, Kilkenny, Wexford, Carlow and Tipperary in the south-east region from which all our children with Cystic Fibrosis who attend WRH live. A major event in June which brought soccer back to Kilcohan Park, the original home of Waterford United, involved a Waterford United football club legends squad and a PFAI squad and the pitch relined in the centre of the now greyhound stadium in Kilcohan park Waterford with the help and support of the IGB and Carl Pallas and staff at the stadium. A fab night was had by all with soccer, greyhound racing, a silent auction raffle and the auction of a grey hound pup. 14

Paige Brennan (PWCF, 5) with local hurlers Noel Connors (left) and Walter Walsh (right) at the launch of Beat CF in the South East.

Spectrum / Issue 35

The 2013 Golf Classic at Mount Juliet in aid of the Waterford Project was another great success.

Lots of supporters turned out for the Bed Push in Waterford City!

Waterford United football club legends and a PFAI squad brought soccer back to Kilcohan Park.

Not to be missed are our committee meetings which have been a great success for brain storming ideas and great craic also. Another strategy has been to keep fundraising initiatives constantly highlighted in the media and we have had with great coverage on the local radios and local papers with photo opportunities and interviews Ă‘ collectively this has kept the profile of our project high on the agenda in the south-east area, As well as our upcoming DJs Unite for CF on the 26th October in Dooley's Hotel, other planned fundraising events include a Car and Tractor Run organised by the Mullinavat Vintage and Classic Car Society 6th October 12md in Mullinavat (registration Ă›20), a sponsored Horse Ride in the Kilcooley Estate Co Tipperary on the 13th October by Balingarry friends of Cystic Fibrosis, a Squataton in Tipperary in September, and a Dance Extravaganza in Whites Hotel Wexford on the 1st of November. We will also be having a bucket collection at the Winterval Festival Waterford in December and in City Square on the 22nd December. Exciting times for Cystic Fibrosis facilities at WRH and a big THANK YOU to everyone involved including all at Cystic Fibrosis Ireland.

Sept/Oct 2013

PWCF SPOTLIGHT

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OAK, Olly and Creepy the Bear: The Story of the Two Suitcases Film Week By Gemma Kent, PWCF aged 15, Co Cork For me, CF has meant a lot of different things growing up. When I was younger, it was just two letters that meant I had to take capsules before I ate something. Nothing special, no big deal, everyone else probably did it anyway. But when I started school, I realised it made me unique: I was the girl in the class who needed tablets when she ate. And that was seemingly all there was to it: tablets. In secondary school, it earned me a few glances at first but I think being honest really helped there Ñ while in primary I never took my tablets out from beneath the table, in secondary I adapted the policy of just taking them like you would anything else. Let there be questions, because as soon as you're asked, you can answer, and then there's no more secrets. Pretty soon, you're making a show of your capsules in front of strangers just so you can share your story (a method that has yet to fail in striking up dinner conversation). CF also began to mean a lot more to me than just tablets. As I got older, I began to understand better what exactly it was and how it would affect me. Sometimes it was all a bit too much to take in. Sometimes I asked myself "Why me?" over and over again. But I guess as time goes on you come to accept it and move on. You can let CF rule your life, or you can rule it. I first heard about Helium back in March 2012 when Helene Hugel, from Helium, contacted me and asked if I'd be interested in taking part in an "innovation day" through Skype. It was later on in July when I got in touch with Emma Eager, another member of Helium, who was interested in making an online forum for teenagers with chronic illnesses who had an interest in the arts. She told me that Helene had mentioned me and my love of creative writing and that she was wondering if I'd be interested in this project too. Writing is my life and I'm always looking for ways to improve and get experience; this project seemed like the perfect way to do this so there was no hesitation in saying yes! Following a number of emails between Emma and I, as well as ideas from other teens interested in the project, my entry for the name of the new site, "Iridescent Oak", was decided on and adapted as OAK (an acronym for Online Arts docK).

The OAK homepage.

With the website finally named and published, attention turned to the Film Week scheduled for the week of the 29th of November, not long away at all! I'd really enjoyed being a part of Helium's projects so far and I was keen to get involved in the film week too, but at first it looked like that might not happen...I was in third year at the time and the steady panic of the too-fast-approaching Junior Cert was setting in. This midterm was like catch-up time and I'd wanted to use it to get up-to-date on some schoolwork and revision. I was also going away on holidays for some of the week so I was already cutting it all quite tight. Fortunately, though, there was a way I could be in the two places at once... Someone suggested that I take part in the brainstorming sessions during the week online, via Skype. Now I'll admit, I was a bit sceptical about it all at first. I'd had my fair share of using Skype before and it's not always the most reliable of things. Maybe it's down to a slow internet connection, but calls through Skype can often be difficult to hear and, more often than not, have a time-delay. But it was either be there on Skype or not be there at all, so there wasn't much that could be done in the end! So it was decided, I was going to be Gemma the Online Girl for this project! When the 30th of October finally came along I was up and raring to go for 11am. Siobh n, another one of the mentors for this project, called and (after the happy revelation that my laptop had a built-in microphone) we got to 16

Spectrum / Issue 35

work! Being the shy person that I am, I wanted to stick with just a call for the project and not use the video link. This meant that the closest thing everyone on the other side of the screen had to a picture of me was my Skype Profile Picture at the time: my cat Olly (who went on to play his own role in the film, but more on that later). After introductions, we each shared "Something you would not guess about me". You'd really be surprised what some people said! Of course, I remember what I said, that I wanted to be a writer when I was older and that I was already working on my first novel. To be able to just say that in front of a group of people with no hesitation was a whole new experience for me because it's not something I normally do. Looking back on it, I can see how the project really boosted my confidence in that way. Following this, we discussed some goals and potential challenges all of which we put on what we called a 'Graffiti Wall'. At the end of the film week, we looked back on this wall to see if we had reached our goals and conquered our challenges (I'm glad to say we certainly did).

Cast and crew with Gemma online to the left.

After this, we started on an activity that I remember really enjoying: storytelling. Ben Murnane, another one of the mentors, oversaw the activity. We each picked an item from the bag (one of the teenagers taking part took one out on my behalf) and then invented a story around it. One girl on the project picked Ben's old teddy bear and came up with the idea that he was an Editing session on Skype. evil teddy bear who went on a killing spree. I don't know if any of us knew it then, but that actually at once. Personally, I think it was the small group became the basis for our whole film. at each table that really helped a lot of us quieter people come out of our shells! At this stage, the Next day, the Two Suitcases studio was converted teddy bear idea had been decided and now it was into a World Caf . Now for those of you who just a matter of what exactly we were going to have never heard of it, a World Caf is a really have him do. interesting and clever way to brainstorm ideas for a film while also getting everyone's input. I suppose the only major downside to being Basically, as many tables as are needed are set up an online participant was the fact that my and a small group of, say, four or five people sit at involvement had a limit. While the other teenagers each table. They discuss ideas based on the theme were there, in the flesh, all day, I was at home and of the table (my first table, for example, was art). couldn't well spend my whole day at my laptop! Then, after a certain length of time, everyone Ñ This was especially the case when it came to our bar one person from each table Ñ gets up and small holiday. Of course, the crew understood moves to another table. It's the job of the person exactly where I was coming from and there was no left behind to inform the new arrivals of what trouble in not being able to make an appearance was being discussed before. In this way, everyone on Thursday. Despite this, I still wanted to turn up gets to "bring something to the table" and lots of one last time, so I made it my goal to squeeze in a different aspects of a film can be brainstormed few hours while we were away. Sept/Oct 2013

And I must say, I'm very glad I did. Following our World Caf everyone met up at the one table again to finalise some things. What our first scene would be, characters we'd need, and so on. One idea that was being thrown around was that of a Cyber Bully featuring in the film Ñ played by yours truly! Now, as I mentioned, I'm not exactly a very outgoing person and the idea of actually acting in the film was a bit daunting. I didn't want to say no though, so I just went along with it. I never really imagined that two days later I would actually be taking part in the filming!

hopefully made them think twice about where they left their childhood bears from now on!) and the whole crew was really proud.

The icing on the cake for me will always be the screening itself. There was something really brilliant about finally meeting all these wonderful people, with whom I'd been working with for so long over the internet, face-to-face at last. 'The Internet Girl' had finally shed her cloak of mystery and now people finally had a face to put to my name other than Olly's! The feedback for the film was immense and really positive all round. Creepy the bear had put a smile on everyone's face (and

So that's the story of our 2012 Film Week and what we've got planned for 2013. As for what I've planned for my own future? Well, nothing is set in stone yet anyway! I could be a best-selling author or a journalist or a secretary for all I know! Fingers crossed that I'll finally get that book written and you'll see it on a window shop display in your local bookstore in years to come. Who knows? In the meantime, all I do know for certain is that I don't intend to let CF stop me trying any of it.

Our next film week starts in October (during midterm) in the Irish Museum of Modern Art (IMMA) in Dublin. In the run-up to this, we'll be using OAK to brainstorm ideas for the next film. It looks like we're going with an internet based film about RPGs (role-play games) so if this is an area that interests you, we'd love you to get in touch! OAK provides a great opportunity to get involved, especially if you don't want to Ñ or can't Either way, it came about that I ended up getting Ñ be there for the actual week. If you do decide my first role in a film (I can't remember exactly to get involved then you can contact Emma at when I agreed to it all, but I remember knowing I communications@helium.ie or you can sign up at was needed for recording on the Friday anyway)! OAK (www.onlineartsdock.com) and get in-touch My character, Stacey, is the Cyber Bully in the from there. film. Her Skype profile picture is my cat, Olly, so that's how Olly got to play his part for the film in the end! Now I've got to say, the actual filming was one of the best parts of the week. Not only did we have a really good laugh doing it, but there was a really great feeling about finally being able to put all that planning into action. However there were, as there always is, some ups and downs with filming. What I found the hardest was (unsurprisingly) using Skype. As I said, Skype Courtyard at IMMA, where the next film week will take place. isn't always the most reliable of things and when it comes to online acting it really doesn't make life Just to quickly mention OAK, it is, as I said, a site easy. Between losing the connection just before designed for children with chronic illnesses like my cue was given and sometimes not being able to CF. It's a place where you can share pictures and hear my cue full stop, it could be pretty frustrating documents and get in touch with other people at times. But we all kept our heads about us and who are in similar circumstances to you. You can got through it! Funnily enough, it turned out that choose to share your story with others or simply my somewhat-faulty connection wasn't as big a set aside your illness and show off your talents! deal as I'd thought. About two weeks later Emma For children with CF in particular, it's a great way Eager, along with Zachary Cole were in touch with to get to know other PWCF in a safe environment me again to get a few more recordings of some where you can stop worrying about passing on of my lines. These, thank goodness, turned out your germs! Either way, it's really worth a look if much better than the first try and were the ones you're interested and I, personally, would love the used in the film. chat so do track me down if you join!

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Don't Be Afraid to Follow your Dreams By Lawrence Brennan, PWCF aged 29, Co Wexford My name is Lar, I'm 29 years old and I have Cystic Fibrosis. I was diagnosed when I was 9 months old. As a kid I attended Harcourt street then later onto Tallaght hospital Ñ I'm now attending St Vincent's. Over the years I've met some amazing people, both staff and patients. When I look back at my childhood I have only good memories, yes I spent a lot of time in hospital but I was lucky with the amazing family I have. My Mam and Dad worked really hard to give me and my two sisters the very best in life which a lot of you reading this will relate to Ñ all the work that goes into caring for a child with CF being in hospital or on home IVs. They tried to treat me as normal as possible by not wrapping me up in cotton wool, which I'm very grateful for, and I would urge other parents to do the same. I loved playing football as a kid and was a massive Manchester United fan, playing sports was really important growing up. Thankfully I was never a big fan of video games Ñ sitting for hours in front of a TV is just not me Ñ the more active you are the better your health is going to be in my opinion. When I was 15 I ran into some bad luck with my lung collapsing three times in one year; in some ways this really was the turning point for me to become as fit as possible and so I took my time but worked hard and got my function to 92% a few years later. I think the doctors thought my health was going to go down hill but it only got better so please bear this in mind if there is anyone out there going through a tough time.

"Don't be afraid to follow your dreams and don't let CF get in the way"

Lar with his beautiful wife Shelly on their wedding day.

Sept/Oct 2013

Lar when his lung function was at 92%.

I qualified as a Fitness instructor 3 years ago Ñ this is something that made me so proud as it's something I've always wanted to do. Don't be afraid to follow your dreams and don't let CF get in the way or anything else for that matter, within reason of course. If it wasn't for exercise in my life I don't think I'd be here today. Two years ago I ran into that old problem again with a collapsed lung that just wouldn't heal after two big operations and six chest drains in 5 months, kidney stones in between Ñ everything looked really bad but with the support of Shelly and my family, and my strong reserve, we got through it. On 3rd August 2012 my biggest dream of all came true; myself and Shelly got married. It was the most amazing day of my life and I'll never forget it. At present I'm on continuos IVs, be it in hospital or at home, and I'm on the active transplant list one year now. Still no calls as yet but we are keeping positive and working very hard to keep strong for when 19

the transplant comes along. Yes exercise is very limited at times but there's always something you can do no matter how sick you are; it's just finding the right balance between not pushing yourself too hard, finding the right exercise for you and also giving yourself good recovery time. There are some great physios out there too and you have to put in the hard work whether you enjoy it or not Ñ the benefits are all there, trust me.

Lar and the team at TV3 after his recent interview when he spoke about the importance of exercise for PWCF.

"You have to put in the hard work whether you enjoy it or not Ñ the benefits are all there, trust me"

I was interviewed by The Morning Show team on TV3 recently. I really wanted to get some positive messages across about people living with CF because I felt that there had been some negative publicity and media coverage about CF in the last few years. I also wanted new parents to see that it's not all bad Ñ you can still follow your dreams and get married, go to college, get your dream job or travel abroad and see the world. I have to say we are very lucky in St Vincent's hospital in that 99% of the staff are just amazing and they go above and beyond the call of duty. If only hospital management would help the staff out we would be laughing altogether, but a massive thank you to the staff especially those on St Christopher's ward Ñ you all know who you are. If I can ever help anyone out with advice please don't hesitate to contact me on Facebook or email me on larfranbrennan@hotmail.com. I also want to use this opportunity to thank my wonderful wife Shelly, my Mam and Dad, Amy, Amanda and the few really good friends we have, and CFI for asking me to do this piece, also the Tracie lawlor trust for all the help and support over the years. You can watch the TV3 interview with Lar at the following link: www.youtube.com/ watch?v=GnCPs6nQDrM. Also he will be posting exercise videos from his hospital room on YouTube soon which you may want to check out!

Spectrum / Issue 35

EVENT FOCUS

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Upcoming Overseas Events Join our International Teams and be part of one of our lifetime experiences! Kilimanjaro Trek, 15th Ñ 25th October 2014 This is the challenge everyone is talking about! We have teamed up with one of the leading providers of International Expeditions to ensure the climbing challenge also becomes an amazing experience. The Kilimanjaro trekking group will depart on October 15th and return on October 25th . What's included: • International return flights from Dublin to Kilimanjaro, economy class • All transport in Tanzania • All accommodation in hotels/camping for the duration of the itinerary based on two people sharing • All meals and drinking water for the duration of the itinerary except in Arusha where accommodation is based on B&B • Local guides, porters and permits • Expedition leader and doctor • All group gear consisting of first aid kits, mountaineering equipment, cooking equipment etc • An expedition t-shirt • A celebratory dinner at the end of the expedition • Fundraising materials and support This challenge demands a good level of fitness and it will require some ongoing training for the next 12 months. If you are interested, contact us soon and start early both your training and fundraising challenges. Virgin Money London Marathon Ñ 13th April 2014 Now that the Ballot for the London Marathon is officially closed, we are pleased to announce that, once again, we have the opportunity to offer a tour package with entry to the race included. The London Marathon is the most sought after European running event: race entry is impossible to be obtained at this stage. If you would like to take part in this world renowned event, while raising much needed funds for CF, this is your opportunity. The tour includes: • Flights from selected airport, including all taxes, fees and charges • Checked-in baggage • 2 nights twin or double sharing with full buffet breakfast, including VAT and service charges • Guaranteed race entry • Buffet dinner at hotel restaurant on Saturday evening • Private coach transfer to race start from the hotel (runners only) • Guide services • Travel insurance (including cover for marathon participation) Availability is limited and entries will be allocated on a first-come first-served basis due to huge amount of interest. If you would like further details on our upcoming overseas challenges, contact Eufemia at 01 4962433 or esolinas@cifreland.ie Sept/Oct 2013

FUNDRAISING

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We are delighted to report fundraising is busy at present. Being busy is not enough! We need much more support and much more events taking place to support the Cystic Fibrosis community in Ireland. If you would require any further information on any event below, or would like to talk about organising your very own event, get in touch at fundraising@cfireland.ie or 01 4962433.

CFaces Raising Awareness of CF We are always looking for new faces to help us here at CFI to raise awareness of Cystic Fibrosis. We need people with CF (PWCF) for photo shoots and interviews or parent's stories for online sharing to build a community of support and friendship etc! Would you like to get involved in creating and maintaining awareness of CF in the community at large? Email Ciara at cenright@cfireland.ie to see how you can help!

Community Events Tuscany Walk 2013 The time has come for our 30 strong group to depart for our Paddy Kieran's International Walk to Tuscany. The group will raise the Irish flag in the beautiful Italian sceneries from 5th Ñ 12th October. We would like to commend and thank all our walkers for the continued support towards Cystic Fibrosis Ireland and we hope everyone enjoys the walk and their time in Italy. PFAI Over 40's Football Matches A series of international matches organised by the PFAI (Professional Footballer's Association of Ireland) over 40s team to raise vital funds for Cystic Fibrosis Ireland kicked off on Saturday 14th of September at Home Farm Football Club Stadium. The boys in green played the Czech Republic with a score of 0 Ñ 1. A big thank you to our very own Alex Moore (age 8 PWCF) who led the boys on to the pitch on 14th Sept. Ben Weafer (age 5 PWCF) also led the boys on to Home Farm pitch for the second match on Saturday 28th when ROI took on Wales, final score 4Ñ1. Thanks to both Ben and Alex for helping us out on the day!

Alex Moore (PWCF, age 8) led the boys in green on to the pitch for the big match on 14th Sept.

Ben Weafer (PWCF, age 5) shaking the hands of the Welsh team before the match.

Ben Weafer with Mark O'Neill who organised the event.

Spectrum / Issue 35

Rummage Pop-up Fashion Shop A charity pop-up shop will open in Carlow from 2nd Ñ 12th October 2013. The shop has been set up by Mary and her daughter Maria, PWCF, and will sell new and vintage items of high street fashion.

Mini-Marathon Mark it into your diary ladies, the date for the 2014 Flora Women's Mini-Marathon is the 2nd of June. Keep an eye on our Facebook page and www.cfireland.ie in the New Year to find out how you can be part of it.

Don't miss the opportunity to bag great bargains, Here are the banking details for those yet to lodge while supporting Cystic Fibrosis. We have no their funds from 2013. doubt it will be a great success. • Bank: AIB Account Number: 93-10-71 (add name to narrative) • Send a cheque to One in 1000, CFI, 24 Lower Rathmines, Dublin 6 ( payable to One in 1000) • Make an online donation at www.cfireland.ie (add One in 1000 to narrative) For any queries, email Ciara at cenright@cfireland. ie or LoCall 1890 311 211 Maria (PWCF) with her mum Mary preparing for the pop up Fashion Shop.

Get down to the Rummage PopUp Shop!

Evening of Irish and Classical Favourites Ñ Saturday 19th October Come along and support Darren Mooney Tenor and friends at an evening of 'Classical and Irish Favourites' in Parkview Hotel, Co Wicklow in aid of Cystic Fibrosis.

Challenges & Events If you would like to take part in any of the challenges, please register online and contact us for your sponsorship pack. Dublin Marathon Ñ Bank Holiday Monday 28th October 2013 Join Team CF Ireland and run the Dublin Marathon in 2013! Registration is now open. Sign up today!

Halloween Fundraising Halloween is the perfect time of the year to organise fun and exciting fundraising events, Help us have the biggest team running across which are perfect for both children and adults. the streets of Dublin. Register at www. dublinmarathon.ie and get in touch. Are you planning a dressed up party, zombie run or a trick and treat adventure for your children? Hell & Back Titan Ñ Sunday 3rd November 2013 Organise your own Spooky/Fancy Dress event and Hell & Back Series is proving hugely popular: the raise vital funds for CF! There is plenty happening, event involved running through, over and under but we need more! various different types of terrain, including the Little Sugar Loaf Mountain etc. EMS White Collar Boxing Night Would you like to see the National Ambulance The challenge also include scaling 7 foot walks, Service battling it out with the Dublin Fire Brigade? crawling under barbed wired and running through It is happening! The date is set on November 29th Shock of Horrors. at the Living Room, Cathal Bruagha St, Dublin 1. Door will open at 6pm and show starts at 7pm. Are you up for this different yet exciting challenge? Let us know when you register at Tickets for the event are only Û20, with all proceeds www.hellandback.ie going to CFI. Contact Claire at clairewhelan2008@ gmail.com or emswhitecollarboxing@gmail.com to get yours! Sept/Oct 2013

Remembrance Run Ñ Sunday 10th November 2013 Remember loved ones passed, honour those currently struggling with illness or other life challenges and celebrate the gift of life and health by joining the 5k Phoenix Park Remembrance Run.

Register at the following link: https://events.athleticsireland.ie/ps/ event/RemembranceRun5k Run in the Dark for CF Ñ Wednesday 13th November 2013 Life Style Sports Run in the Dark is being organised by the Mark Pollock Trust who believe that the cure for spinal cord injuries simply requires enough of the right people having the will to make it happen. Lifestyle Sports understand that we all have charities that we want to support in a bigger way. So, why not use Life Style Sports Run in the Dark as a focus for fundraising for your preferred charity. Simply enter online at www.runinthedark.org and start fundraising for Cystic Fibrosis!

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.

Gerry at Ben Lugmore Ridge Ñ Mayo.

50th Anniversary Initiatives Gerry Walker: 50 Years 50 Peaks Challenge The 50 Years, 50 Peaks challenge being undertaken by Gerry Walker (PWCF, who received a transplant in 2008) and his wife Margaret is progressing well. The challenge involves climbing the 50 highest mountains in Ireland within the 50th Anniversary year of CFI. The challenge began on Sunday 28th April on Tonelagee Mountain, Co Wicklow. Gerry and Margaret have now climbed 34 of the 50 peaks and have clocked up 13 days in the hills, walking over 155km, climbing 10,600 metres and spending over 80 hours out on the mountains. All the peaks in Wicklow, the Comeraghs, the Knockmealdowns, the Blackstairs, the Galtees, Nephin Mor, the Magillicuddy's Reeks, Mangerton and Slieve Donard have been climbed. Conditions have varied from wind 24

Gerry, half way to Fauscoum.

Gerry at Nephin Moore.

Spectrum / Issue 35

driven horizontal grape-sized hail stones on Mullaghcleevaun on 8th May, zero visibility and 8 hours of solid rain and cold in the Galtees on 16th June, to over 30¡C and sun on the Cnoc na Peiste ridge in the reeks on the 18th June. Gerry is celebrating 5 years of wonderful life since his transplant and embarked on the 50 Peaks Challenge as a tribute to Anne O'Dwyer the founder of CFI, to Martin his donor, to the many friends who have lost their battle with CF, to raise awareness of CF and also to raise funds for the work of CF Ireland. Sponsorship cards are available from Gerry Walker, 5 Heather Drive, Marlay Wood, Dublin 16. Phone: 01 4947603 / 087 7686518, email hillwalker@eircom.net or sponsor online at www.mycharity.ie/ event/50years50peaks. Gerry is hoping to raise Û10,000 for CFI. All funds raised will be used by CF Ireland to fund research and for patient support services. If anyone has any media contacts please let Gerry know as he is doing the 50 peaks to raise awareness of CF and the second chance from transplants. 50th Anniversary Appeal: Emergency Call for Cystic Fibrosis Ireland If you work or a colleague works for an emergency service, including An Garda S ochana and the Fire & Ambulance Service, we are asking you to organise at least one fundraising event before 1st Dec 2013. Last year Cystic Fibrosis Ireland invested over Û2 million to improve CF services in three CF centres around the country; this year the charity hopes to support five such centres. To do this we urgently need your support. Cystic Fibrosis is a very challenging inherited disease that primarily affects the lungs and the digestive system. The median age of death in Ireland is just 25 years of age. Ireland has the highest rate of CF in the world. Our services need to be improved to full European standards and we urgently need your support. Donate before 1st Dec 2013 and your station will be in with a chance of winning one of the following awards: • The station that fundraises the most amount for CF Ireland • The station that has the most fun or imaginative fundraiser • The station that received the best media coverage for their event

Corporate Welcome Investec We would like to welcome on board Investec as another charity partner for CFI! Would you work for a large organisation or business and would like to follow in the steps of Investec, whether you are planning a long-term partnership or a once-off event, our team are here to support you. Email the fundraising team at fundraising@cfireland.ie to get involved, raise staff morale and make a difference to the lives of people with CF. Sept/Oct 2013

Thank You Huge thanks are due to all those who contributed by organising and/or supporting our fundraising activities throughout the country. Your support is fundamental to help us support the CF community in Ireland. Camino Walk 2013 Welcome back to the CFI Team that took on the challenging Camino de Santiago Walk. The group departed on September 12th and returned on September 19th. We received great feedback of a challenging yet very rewarding experience.

Catherine Moore, Eileen Woulfe, Sinead Minchin and Peter Minchin, who completed the Camino de Santiago Walk.

Thank you for your support! Hell & Back Apollo Thank you to Keith O'Neill and friends from Fitness Forte in Swords who participated in Hell and Back and raised Û3,000 for CF. Mark Keane Skydive Another big thanks to Mark Keane and friends who jumped for Cystic Fibrosis in the Summer and raised over Û3,000 for CF! River Shannon Sponsored Swim Thank you to Se n Farrell and the Lanesboro Triathlon Club for organising the River Shannon sponsored swim, which took place during the August Bank Holiday week end (see photos below).

Keith O'Neill and friends from Fitness Forte in Swords raised over Û3,000 at Hell and Back.

A total of 50 swimmers successfully completed the 3km course from Kilnacarrow Bridge to Lanesboro, raising an amazing Û7,301.59. Thanks need to be extended to the local Kayak and Sub-Aqua clubs as well as the other volunteers who provided safety boat cover on the day. Well done all!

Mark O'Neill and friends raised over Û3,000 for CF.

Spectrum / Issue 35

Benefit Night Many thanks to Sin ad Kennedy and all those who supported the Benefit Night in the Thunder Road Cafe on August 13th, which raised Û850 for Cystic Fibrosis Ireland. The event was organised to benefit both CFI and St. Andrew's Ward, Crumlin. Tattoo Event A big thank you to Lindsay McGeer, the Tattoo Shop in Ardee and all involved in making sure this exceptional event was a huge success. The Tattoo Shop, located in Jervis Street, Ardee, Co. Louth, opened its doors on August 24th for Cystic Fibrosis. The Event took place from 11am to 6pm raising Û3,537.34.

The Benefit Night at Thunder Road Cafe raised Û850 for CFI and St. Andrew's Ward, Crumlin.

Trash the Dress for CF Thank you to the 420 plus ladies who came out on August 25th to Clonkeeran House, Carbury in Kildare to trash their wedding dress for CF raising the grand total Û6,000. A special thanks to Wendy Hoey of Belleza Bridal Wear who organised a wonderful event for Cystic Fibrosis Ireland. What an amazing day with thanks to Ruth Foran Photography for capturing the memories (see below!). We can't wait for Trash the Dress 2014! Houghton Mifflin Harcourt Cake Sale Thanks to Jill Clarke and Houghton Mifflin Harcourt, Dublin 2, for organising a very successful cake sale on September 5th in their offices. The event raised Û1,000 towards the provision of services and supports to children or families with children with Cystic Fibrosis.

Sept/Oct 2013

The Tattoo event in Ardee raised Û3,537.34 for CF; thanks to all for making this a huge success!

Sale of Work Mark Duggan, parent of Jamie (PWCF) sent in this photo of local children in Ongar, Dublin 15, who held a sale of work on the green. The children split the proceeds (over Û230!) between CFI and Temple Street Children's hospital. The kids arranged the sale of work entirely by themselves. Thanks so much to each and every one of you. By the way, Jamie is the second from the end on the left hand side!

Many thanks to the kids at Ongar Close who worked together to raise Û230 for CFI and Temple Street Children's hospital.

Handbag Sale Nets Û3,300 in 1 hour for CF! Wexford Ladies ran a handbag sale in September which proved to be a runaway success and great fun for all concerned. The idea was dreamed up by Brid St Ledger, friend of CF, who with pals Joanne Kenny and Fiona Bodels, sent out word that pre-loved handbags were being collected in aid of CF. "We were overwhelmed by the number of handbags that poured in," said Fiona Bodels (Chairperson of Wexford Branch, CFI). Evidently every woman has handbags at home that she doesn't use anymore. About four hundred and fifty bags were donated, all clean and in good condition. The group even received donations of new bags from shops. A raffle for four beautiful handbags was also held on the night. The local golf club was the venue for the sale. All bags were priced at Û10 or Û5 ensuring that everybody got a bargain. One hour after opening nearly all the bags were gone! A total of Û3,308.50 was raised.

A selection of bags on display at the recent sale in Wexford well done to the organisers on such a successful event!.

Good planning was the key to such a successful night according to Fiona who said they all had really great fun. Also, everyone loved the novel idea and felt happy with their purchases. There were no costs involved at all as all the bags were so kindly donated and there was no advertising as the organisers let everyone know through facebook and texts. The organisers are very grateful to the golf club for providing the beautiful venue and it was good that it too benefited, as many ladies enjoyed a bit of socialising in the bar after the sale! The organising committee of Brid, Joanne and Fiona would like to thank the ladies who helped out with the display, with manning the tills and selling raffle tickets on the night. Also a huge thank you to everybody who donated bags and all those who came along and bought a bag or two!

Labcon Ireland Charity Collection Thank you to members of the MLSA and AMLS who attended a joint venture conference in LABCON Ireland on the 26th and 27th April and raised Û1,545 for CFI. Brave Heart Run 2013 Thank you to Don Mahon and Ciaran Tobin for organising the Brave Heart Run 2013 and fundraise to help develop patient and family facilities for the Meath/Louth region at the Cystic Fibrosis Unit, Our Lady of Lourdes Hospital in Drogheda.

Spectrum / Issue 35

Patrick Mulhare, President AMLS, Rosie Begley, CF Ireland, and Terry Casey, MLSA.

Don Mahon, Trim AC (left), and Ciaran Tobin (right), Chairman Trim AC presenting a cheque from the club to Stephen Kennedy (centre) CFI Meath Branch.

Hospital Projects Waterford Hospital Project A big THANK YOU to all who are involved in Fundraising for Waterford Regional Hospital. Û147K raised so far with more to come in. For fundraising materials, assistance and advice, call Rosie at 01-4962433 or email: rbegley@cfireland.ie Beaumont Hospital Project A big THANK YOU to all who are involved in Fundraising for Beaumont Hospital. Û13,000 raised so far with more to come in. You can help us in a number of ways by: • Organising a fundraiser see list of Fundraising ideas on our website • Buying a brick at www.cfireland.ie/index.php/ donate for the CF unit for only Û10 The Head to Head Walk for the CF Beds for Beaumont fundraising walk took place on Sunday 29th September Ñ we would like to take this opportunity to thank you for your support for this vital project. An event summary and photos will appear in the next issue of Spectrum!

An event summary of Head to Head will appear in the next issue of Spectrum; above is a taster until then.

CF Ireland Christmas Cards 2013

It's (nearly) that time of year again! In the run-up to the festive season, CF Ireland will be selling our annual Christmas Cards with all proceeds going direct to vital CF services and support. This year CFI will be offering 6 different packs of Christmas cards. Each pack will have one design per-pack, containing 8 cards. Each pack costs Û6.99 (not inc. postage). They will be available to buy on our website www.cfireland.ie. For more information call 01 4962433 or email info@cfireland.ie. Sept/Oct 2013

A selection of 6 different packs of Christmas cards are on offer this year.

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 35 Charity: CHY6350 30