Spectrum Autumn 2019

SPECTRUM Autumn / 2019

A Walk to Remember Crowds turn out for annual Head 2 Head Walk

www.cfireland.ie

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CONTENTS Latest News | 1 - 3

* CF Model of Care

* Post Transplant CF Care * Hospital Updates * Revised HSE Policy on ONS * The Hyde Family * CF Medications Abroad * Triple CFTR Therapies Update * Orkambi now available in Scotland * Staff changes

Spotlight | 4 - 7 * Self-Management * Hearing Loss

Member Services| 8 - 9 * Noticeboard * Flu Jab Information

Research | 10 - 13 * Superbugs Webinar * DCU - Exercise and CF Research: An Update * Augmenting Memory Recall During Medical Appointmens

Kids Corner | 14 Youth Reach | 15 CFTR Modulator Therapy Overview | 16 - 17 Legacy Information | 18 - 19 Fundraising |20 - 30 * Challenges and Events * Thank You * Christmas Cards

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CEO’s Message Welcome to the Autumn edition of Spectrum.

It is great to see the progress being made towards the availability of the forthcoming CFTR triple combination drug therapy in Ireland possibly sometime in mid/late 2020 if everything goes well.

Philip Watt Chief Executive

Vertex announced in October 2019 that it has received approval from the Food and Drug Administration in the USA for its its triple-combination therapy elexacaftor (VX-445), tezacaftor, and ivacaftor. The clinical trials have been focussed on people aged 12 and older with cystic fibrosis with one F508del alteration and one minimal function mutation and also people with two F508del alterations.

CFI continues to seek to ensure that all our post transplant patients have access to an adequate level of CF care following their transplant. This includes ENT, GI care and cancer screening. We welcome the recent establishment of a Transplant sub-committee under the aegis of the National Clinical Programme. However, in parallel to this, all adult CF centres must ensure they provide an adequate level of post transplant CF care in a shared care approach with the National Lung Transplant Centre in the Mater Hospital. Watch out for further developments on this topic in future issues of Spectrum.

CFI welcomes the publication of the CF Model of Care by the National Clinical Programme and we have called for the necessary resources to ensure that this is fully implemented.

Philip Watt, CEO, CFI Samantha Byrne & Nuala McAuley, Editors DISCLAIMER: The views of contributors, when expressed in this publication, do not necessarily reflect the position or policy of Cystic Fibrosis Ireland.

Spectrum / Autumn 2019

LATEST NEWS: CF Model of Care Launched The CF Model of care that was developed by the National Clinical Programme (NCP) for CF including CFI was launched in the Royal College of Physicians on Monday 30th September by Minister Harris. The launch was also attended by Minister Finian McGrath TD. The Model of Care for Cystic Fibrosis in Ireland, developed by the National Clinical Programme for Cystic Fibrosis, outlines how the care of people with cystic fibrosis should be organised and resourced now and in the future.

The Model of Care was written by the National Clinical Programme for Cystic Fibrosis, which includes nominees from different groups involved in the health of people with cystic fibrosis. It includes nominees from the Cystic Fibrosis Centres and Shared Care Centres throughout Ireland, cystic fibrosis team members, Cystic Fibrosis Ireland, Cystic Fibrosis Registry of Ireland, HSE Acute Hospitals Division and others.

The frequency, severity and complexity of cystic fibrosis are greater in Ireland than in most countries. For this reason this Model of Care for Cystic Fibrosis has been specifically developed for the Irish population.

One of the key recommendations of the Model is that people with cystic fibrosis must be cared for in a small number of designated cystic fibrosis centres that are properly staffed and resourced.

CFI has welcomed the launch but has called on the government to ensure that sufficient resources are made available to implement it.

Copies of the Model of Care are available at the following website https://www.rcpi.ie/news/releases/model-ofcare-for-cystic-fibrosis-in-ireland-launched-at-rcpi/

Post-Transplant CF Care CFI continues to advocate on behalf of patients that have an inadequate standard of post-transplant CF care. CFI contends that some patients have standard of care that is less than that set the recently launched CF Model of Care (see above).

CFI welcomes the establishment of a Transplant sub-group as part of the National Clinical Programme for CF which includes a patient representative from CFI, Maria Delaney.

CFI is also seeking urgent action to ensure all our post-transplant CF patients receive a level of care consistent with national and international standards. www.cfireland.ie

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Hospital Updates: St Vincent’s CFI has sought a meeting with the CEO regarding issues related to air ventilation/opening of windows during building work and other issues raised by people with CF. TVs are being fixed following CFI representations.

Beaumont Tenders have been received for the proposed new adult CF 20 bed inpatient unit in Beaumont Hospital.

Cork University Hospital CFI continues to advocate to secure a second consultant in the adult unit in Cork University Hospital (there should be three going on the numbers of patients). The delay on this is very disconcerting and unacceptable.

Temple St CFI including patient ambassador Bernie Martin met with the CEO of Temple Street over the summer regarding ongoing challenges such as access to designated in patient rooms. CFI also supported a number of nurses to undertake the CF course in the Brompton Hospital UK. Revised HSE Policy on Oral Nutritional Supplement CFI have recently become aware that a new HSE policy on Oral Nutritional Supplements (ONS) became effective on 1st July 2019. We are presently seeking clarification about the full implications of this change in practice (and we would welcome feedback on your experience too).

CFI Summary of the changes Oral Nutritional Supplements (ONS) previously prescribed to patients with CF (and other patients) have now been divided into a Panel A and a Panel B If the ONS is on Panel A it is automatically reimbursed and is covered by the Long-Term Illness Scheme (LTI) If the ONS is now on Panel B, CFI understands the ONS can still be available to people with CF on their LTI card, as long as an HSE Dietitian prescribes the product every 6 months and this is then approved by the HSE. The list of products covered by List A and List B are available at the following links List A Products https://www.hse.ie/eng/about/who/cspd/ncps/medicines-management/resources/standard-ons-list-a.pdf List B Products https://www.hse.ie/eng/about/who/cspd/ncps/medicines-management/resources/standard-ons-list-b.pdf In short, if your preferred/prescribed Oral Nutritional Supplement is now on Panel B you will need to contact your dietitian to ensure that it continues to be prescribed and renewed in order to ensure that it is covered by your longterm illness card.

In respect of approval by the HSE for ONS prescribed under Panel B, the HSE have stated in their advice below: ‘If an ONS on List B is not approved, and it is unlikely that would be the case if the applicant outlines a CF diagnosis, the doctor or dietitian can recommend an ONS from List A or they may appeal the reimbursement decision’.

Please note the above summary advice is our understanding of the changes.

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The Hyde family in Australia- success!

Many congratulations to Christine and Anthony Hyde and their three-year-old Darragh, who have been granted residency in Australia after the Immigration Minister David Coleman intervened in their case.

The last-minute intervention came after public outcry over the Hyde family’s plight with over 120,000 people signing a petition calling for the family to be allowed to stay.

The Hyde family’s application for permanent residency had been refused because their son had cystic fibrosis and the Australian government deemed Darragh’s illness to be a burden on taxpayers.

Ms Hyde works as assistant principal at a local primary school in Seymour, southern Australian and Mr Hyde works as a bus driver. CFI wrote to the Australian Ambassador on this issue and the letter received considerable attention in the Australian media.

CF Medications Abroad CFI is currently working with our sister organisations in Canada and Australia to ensure that CFTR drug therapies are available for those on extended vacation or temporary working visas.

A Triple CFTR Therapy continues to make progress A new three-in-one CFTR medication that is showing excellent results in trials has gained FDA approval in the USA. An application to the EMA in Europe is expected to follow shortly.

The combination therapy VX-445 (elexacaftor), tezacaftor and ivacaftor is for CF patients aged 12 and older with one F508del mutation and one minimal function mutation and in people with two F508del alterations Orkambi now available in Scotland Congratulations to the campaigning of the CF Trust in the UK. Orkambi is now available in Scotland. This is a further nail in the cynical view that Orkambi is ineffective. It may be expensive but the experience in Ireland is showing it is certainly doing ‘what is says on the tin’ - reducing exacerbations and reliance on other expensive CF drugs and improving quality of life.

Staff Changes in CF Ireland On behalf of the board, I would like to thank Shaunagh Coyle and Daniel Costigan for the hard work and dedication during their time with Cystic Fibrosis Ireland.

Shaunagh joined the organisation in 2017 as Office Administrator and became the first point of contact for members.

Daniel also started with CFI in 2017, taking up the role of Senior Research and Policy Coordinator and played an important supporting role in the teamwork approach to the research leading to the CFI Independent Living Report.

We wish Shaunagh and Daniel all the very best in their new careers.

www.cfireland.ie

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SPOTLIGHT: Self Management Maireadh Kiely is a 24 year old person with cystic fibrosis from Tipperary.

An avid runner, Maireadh has completed numerous events from the Great Limerick Run to the Women's Mini Marathon. In April 2020, she will take on her biggest challenge to date by running the London Marathon in aid of Cystic Fibrosis.

This year, Maireadh was part of a group of twelve people with CF who set up "Salty Soldiers", an Instagram account sharing their experiences of life with cystic fibrosis.

Make sure to give them a follow @SaltySoldiers In this Spotlight, Maireadh shares her experiences of self-management and self care.

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elf-management is a critical skillset when it comes to life with CF. In order to understand how we can improve on self-management, we must first come to a conclusion on what it means.

Self-management is described as taking responsibility for one’s own behavior and well-being. When put into the context of life with Cystic Fibrosis it is so much more than establishing a routine with medications, it is the self awareness required to make positive and informed decisions that will have a positive impact on our health.

How can a person with CF become more self aware? Being twenty-four, my experience with taking on any monumental task is to understand and educate myself on what exactly I am facing. Similar can be said with CF. Yes, we live our lives with the illness so we apparently know what is best for us, right? However, do we really know how the body works as opposed to just knowing how it makes us feel? In a world where you have access to all of the information you could possibly imagine, these days it is easier to gain insight into our own physiology.

Communication is also key here, and who better to communicate with than our very own CF team. Your CF team is made up of individuals who have dedicated their time and sometimes their lives into understanding how our bodies work with CF and how we can tackle any obstacles put before us. By adopting a curious mind and asking questions at your clinic appointments, you have already began your journey to perfecting self-management. Questions that directly refer to your body and its behaviors helps us to bring us to our next step in developing our self-management skills. Knowledge is power, after all.

Our emotions play a large role in self-management and how we make decisions that affect our overall health and well-being. Tuning into your body through practices such as mindfulness and meditation not only works out our brains, but aids us in really understanding what our bodies are trying to tell us and what we may really need in that particular moment in time in relation to current physical or emotional state. Mindfulness is a psychological process of purposely bringing one’s attention to experiences occurring in the present moment without judgement. Practicing

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mindful breathing for five to ten minutes daily acts as an effective tool to help regulate our emotions and thus helps us to make more rational decisions despite how hectic our external environment may be. CF is a very difficult illness to live with, mentally it is difficult to process as you face new and sometimes frightening challenges every day.

Naturally, this effects our emotions and our outlook towards life itself. When we slow down by practicing mindfulness or meditation, we can break down veil of emotions that clouds our judgement and act with rationale and intent.

When we feel better about a situation or experience, naturally we tend to behave better in relation to it. In terms of CF, if we can view doing nebulizers, taking medicines and hospital admissions as ways to help our bodies, it is then more likely that we will take more responsibility in keeping a good health regimen. By organizing our thoughts, we can organize our lives and therefore have an advantage over CF. How Cystic Fibrosis is treated has changed immensely over the last decade. Patients are becoming more proactive in the upkeep of their care thus empowering them greatly in seeing their illness as a part of them but not defining who they are as a person. Exercise and a healthy diet has a massive role to play in the treatment of CF in recent times.

Your physiotherapist and dietician can equip you with the knowledge and skills needed to eat healthy and exercise efficiently and effectively. The old mindset of “eat whatever you want� is beginning to change as society itself is moving toward a more healthy and sustainable consumption of food, and of course people with CF are not immune to these changes also. What we put in our bodies matters and how we expend our energy matters. Asking your dietician for information on nutritionally dense foods so you have the knowledge and power to eat well.

We hear every day of the positive effects exercise has on us in general, whether it be in the context of mental health or physical health. Speaking from my own personal experience with exercise, it was never something I wanted to do because I viewed it as being difficult, I was frightened of the concept of pushing my body into a threshold of feeling uncomfortable. Working with my physiotherapists helped me in breaking down that fear barrier. Just as the concept of breaking down our thoughts and difficult emotions through mindfulness, exercising little and often has a positive impact on the body and helps us in becoming more physically adaptive and resilient. By exercising, our bodies become more efficient on delivering oxygen to our muscles, therefore making our respiratory system stronger.

For the sake of thirty minutes of feeling uncomfortable every day, the benefits are far too great to ignore. Building that lung strength through exercise means we can do more, we become efficient in our everyday lives because our lungs aren’t working so hard to take in air and deliver oxygen into our bloodstreams, that is the beauty of it. Being physically fit has a massive impact on our self-confidence. When we feel as though we can Self-management is a cycle of creating hypotheses and acting accordingly to achieve a desired set of results. It is climbing a mountain using focus, will power, determination and effort to reach the top of our potential and gain success. Self-management requires individual and communal effort, and knowing when we cannot help ourselves, having a strong support system present to help us is essential. By empowering ourselves with knowledge, emotional resilience and physical resilience, we become unstoppable. Empowering ourselves helps us gain control over Cystic Fibrosis and increases our capacity to act on issues that we define as important. Whether it be through educating ourselves, mindfulness, diet and exercise we have the means to live a high quality life. Building on our self awareness skills equips us with the tools needed to face whatever struggles may present themselves to us. Self-management is so much more than taking medicine, it is viewing yourself as a human being, it is understanding that you have emotions and an unending responsibility to how you manage them that will in turn effect the outcome of your behaviour.

www.cfireland.ie

Maireadh Kiely 5

SPOTLIGHT: Hear me out!

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earing loss comes in many forms. It can range from a mild loss, in which a person misses certain high-pitched sounds, to a total loss of hearing. It can have a huge impact affecting people's confidence, ability to interact and socialise.

With advancements in CF therapies and treatments, the age population of the CF community is rising and we are witnessing a new demographic. This shift in age profile can bring new issues which have not previously been associated with cystic fibrosis, one of which is hearing loss or impairment.

Hearing loss is a common occurrence in the ageing population. However, patients with cystic fibrosis are at a higher risk of hearing loss due to side-effects of CF therapies and medications. This type of hearing loss, is classed as sensorineural hearing loss (SNHL) and can occur at any age. Sensorineural hearing loss occurs when there is damage to the inner ear or the auditory nerve. This type of hearing loss is usually permanent.

In this Spotlight, we speak to a person with cystic fibrosis who is also living with hearing loss.

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y name is Faela and I am 31 years old. I was diagnosed with CF when I was four and a half.

Hearing loss has been both a blessing and a curse. I never really knew that I was quite deaf, as bizarre as that sounds!

I was born with sub normal hearing but developed normally as an infant as I learned to lip read so well. As a baby, I had recurrent ear infections and had grommets placed to keep the ear canals open.

When I was eighteen months old, a week prior to my scheduled MMR vaccine, I caught measles. This was just unfortunate luck. Doctors reckon that may have scarred my ear drums.

My sinuses are my primary source of infection. Any chest infections I get, tend to start in the sinuses and migrate south. Our sinuses are all interconnected and close to the ears. I am lucky that I have not suffered with ear infections since childhood, as I still to this day remember the pain of a bad one I had when I was seven years old. It was awful!

As my symptoms increase and I get an acute sinus infection, my hearing will often almost completely disappear. This instilled fear and panic in years gone by. I have learned that with appropriate treatment it returns.

One particularly bad sinus infection two years ago led to massive pressure, pain and mucus pouring out of every orifice in my face. I even leaked some from my tear ducts. Utterly gross but I guess that comes with the territory with CF. I was waking to my pillow soaked with true green mucus that resembled what I would cough up during an infection. I succumbed to another two week stay in St. Vincent’s hospital, which was my final course of IVs prior to starting Orkambi. The team were made aware of the discharge from my left ear but as I recovered uneventfully no further action was taken.

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It was not for another 18 months that the ongoing leaking left ear was swabbed for a culture in the hospital, the day I left for home. I got a panicked call from a Dr a few days later to say the bacteria living in my left ear was the same resistant Pseudomonas living in my lungs. To date, I have not managed to rid my left ear of that very mild but chronic infection.

I really struggled to come to terms with the fact this infection will likely speed up the decline in my hearing. I have learned to let go of what will be, for this is out of my control. I am just happy to be doing so well after starting Orkambi. I am so incredibly lucky!

I grew up with an absolute hatred of the idea of wearing hearing aids. I would stand out, look different, it was something that could be physically seen. I wouldn’t do it, I shouldn’t have to and couldn’t bring myself to admit I needed them. They were medical related and my hate for all things CF and medical were down to what I have recently heard described as medical trauma. What a perfect description for those whom endure so many procedures and such life invasion of a chronic illness.

Oh how I wish I had not been so blatantly stubborn and realised how much easier life could be. I missed so much conversation, music and the noise of nature. Regret is foolish as you can’t change the past. I am just delighted I chose to get a pair when I was 24 as the struggle was really getting to me as I failed to function in work.

The very first time I wore the hearing aids it so overwhelming to hear the big sounds of the mundane white noise and daily life occurring around me. I was exhausted from wearing them! Your brain literally needs to retrain to block out some of this newly very loud noises such as kettle, your neighbours dropping cutlery and that dog barking a mile away! It can be quite challenging to persevere with them but I promise you it is SO worthwhile! I am now so lost without them that they are more important than my mobile phone, and we all know how dependent we are these days.

I have a love-hate relationship with hearing loss I hate that it is yet another thing “wrong” with me. I hate that it can be difficult in many situations from interactions to mundane life details such as hearing an alarm clock in the morning. I learned the hard way that the best investment I made for myself was purchasing a deaf alarm clock. It vibrates, has a flashing strobe light and is so loud is guaranteed to wake everyone in the house.

My silent deaf world is extremely peaceful and is most definitely celebrated at the end of the day. I long to go home and take out those tiny battery operated devices.

Just imagine how handy it is when I am staying in hospital for example. I can sleep on demand and the hustle and bustle of the ward will never interrupt my beauty sleep.

I am currently dealing with moderate-severe deafness and am really hoping not to lose more anytime soon. Here is to hoping! However, no matter what is thrown at us, we humans have the incredible ability to just cope. So whatever the future holds, I will worry and deal with it then.

Common Signs of Hearing Loss • Have trouble hearing over the telephone • Find it hard to follow conversations when two or more people are talking • Often ask people to repeat what they are saying • Need to turn up the TV volume so loud that others complain • Have a problem hearing because of background noise • Think that others seem to mumble If you are concerned about hearing loss, speak to a member of your CF team. www.cfireland.ie

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Member Services Noticeboard BUDGET 2020 Budget 2020 was announced on October 8th 2019. Dubbed the 'Brexit Budget', there were a few changes that affected PWCF or carers. The following are some items which may impact members • The Home Carer Tax Credit will increase from €1,500 to €1,600.

• The number of hours that a Carer can work or study every week outside the home and still apply for Carer’s Benefit or Carer’s Allowance will increase from 15 hours to 18.5 hours.

• Qualifying criteria for the Household Benefits Package will be broadened for people aged under 70 to allow another adult to live in the home.

• The monthly threshold of €124 for the Drug Payment Scheme will be reduced by €10 to €114.

• €59 million is provided to deliver up to 12,000 grants to adapt the homes of older people and people with a disability.

• A further 1,000 Special Needs Assistants (SNAs) will be recruited, bringing the total number

Welcome Sue! Sue Mc Grath has joined the CFI team as Office Administrator having worked as Science Outreach Executive with Anyone 4 Science. Prior to this, she worked as an office manager with Geometrics.

She has been volunteering with Spinal Injuries Ireland since 2013 bringing people with life changing spinal cord injuries out in a boat. She was awarded volunteer of the year from Dun Laoghaire Rathdown Co. Council 2018. She is a graduate of UCD. She is passionate about sailing & has participated in many offshore races.

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Facts about flu.

Flu causes death and hospitalisation every year.

Flu vaccine is the best protection against flu for at risk groups and health care workers.

You need to get flu vaccine every season as the viruses change every year.

Flu vaccine contains killed viruses - it cannot give you flu.

Healthcare workers are up to 10 times more likely to get flu.

Healthy people can have flu without any obvious symptoms and pass it on.

FLU VACCINE IS A LIFESAVER. GET YOUR FLU VACCINE NOW.

www.hse.ie/flu Order code HNI01089

www.cfireland.ie

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RESEARCH H

ealth research covers a broad spectrum of activities from basic biomedical research in the laboratory to clinical and patient-oriented research, population health sciences and health services research. Every diagnosis, intervention and new treatment carried out in our health service is based on research.

The ultimate aim of research is to find a cure for CF, but in the meantime it is imperative we support research that aims to improve current methods of treatment and management of the disease as well as enhance the quality of life of those living with the condition.

In order to increase our knowledge of CF and translate these discoveries and insights into vital new treatments and clinical care practices for those living with CF, funded research by dedicated scientists and clinicians from a wide range of disciplines is required.

CF Ireland is committed to funding research to advance our knowledge and understanding of CF. In this edition of Spectrum, we are delighted to give you updates on some of the research projects which CFI are currently supporting.

Superbugs The first in a series of webinars on “Superbugs” was held online on Tuesday 17 September, 2019. The webinar was presented by Professor John Moore and Professor Cherie Millar, Clinical Microbiologists from Belfast City Hospital.

Members had already posed several questions on the issues that they would like addressed during the webinar and this initial webinar focussed on several bacteria which are of concern and significance to PWCF namely Pseudomonas aeruginosa, Burkholderia cenocepacia, other species of Burkholderia and their significance, Staphylococcus aureus and MRSA. Many interesting areas were discussed such as the changing prevalence of these respiratory organisms in relation to PWCF both locally and globally, the difference between colonisation, growth, infection and chronic infection, acquisition of such organisms and where these organisms are found in the environment.

Following the webinar, Cherie and John commented; "We were delighted to join with members of Cystic Fibrosis Ireland during the first webinar on “Superbugs” which was held online. Thank you for inviting us and also for the important and excellent questions which you sent to us.

We had a very interesting time together with you exploring, in an evidence-based approach, topics which are of great importance to the CF Ireland community, such as Pseudomonas aeruginosa, Burkholderia cenocepacia, other species of Burkholderia and their significance, Staphylococcus aureus and MRSA. Together we explored many other interesting areas such as the changing prevalence of these respiratory organisms in relation to PWCF both locally and globally, the difference between colonisation, growth, infection and chronic infection, acquisition of such organisms and where these organisms are found in the environment.

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We look forward to the next webinar sessions with you, when together we will discuss many more of your interesting questions relating to topical issues including: bugs which are emerging such as Non-tuberculous mycobacteria, viruses and fungi, as well as therapies and infection prevention.”

Seventeen people tuned in on the night, and the audience included people with CF, parents and family members.

One of the participants shared their experience; "It was most interesting to hear a panel of Microbiology experts present answers to the questions put forward by the CF community whilst sitting on the sofa with a cuppa! All I needed was my son to set me up on his ipad and suddenly I was into this virtual Seminar..... In fact there were so many questions on the topic, that they had to be categorised and spread into different webinars.

It started with an introductory discussion on the key superbugs that affect CF. So many of us are familiar with these, MRSA, Staph Aureus, Pseudomonas, Cerpacia, Stenatrophomaltifilia, Aspergillus and Non Tuberculosis Mycrobacterium or NTM for short.

A very interesting fact from recent studies is that MRSA and Staph Aureus are slightly on the rise whilst Pseudomonas is decreasing slightly. It is thought that it is due to improvement of antibiotic treatment for Pseudomonas. Unfortunately it isn’t the same good news for other bugs as drug development just isn't at the same pace. For example NTM abscesses remains a challenge. In the next webinar there is due to be a further discussion of the treatment of this bug.

Apparently the CF genotype is a factor in determining the potential of susceptibility to particular bacteria. An example discussed was the homozygous delta F508 genotypes are thought to have cell membranes that allow for easier attachment of Pseudomonas bacteria.

CFTR2.org is a website where you can enter genotype and see what % chance you have of getting this bug or others.

On a practical note, good Bathroom Hygiene is a must, especially when it comes to toothbrushes and the cup they stand in.

It really is logical that brush heads should be away from each other and mucky cups kept clean ....l thought those tips were OCD! It just shows how we can get a bit careless at times and forget those little invisible fellas are lurking about.

I will be tuning in again as our hosts will be presenting more up to date facts. It is great to be able to interact with the Webinar format by answering quick poll questions and submitting comments or further questions. All from the comfort of home....."

Future webinars are planned exploring the Superbug topics such as; • Non-tuberculous mycobacteria (NTM) • Fungi and Viruses • Antibiotic Therapies and Novel Treatments for Infection such as Phage Therapy • Bacteria in the Home Environment, Outside the Home and at Play • Infection Prevention • Everyday Life Activities and Travel • Infection and Transplantation Details on future webinars will be available on www.cfireland.ie, on social media and in future editions of Spectrum.

www.cfireland.ie

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DCU – Exercise and Cystic Fibrosis Research: An Update The health benefits of physical activity are well established, with the Academy of Medical Royal Colleges describing it as a “miracle cure”, with the potential to reduce all-cause mortality more effectively than medication in the general popultation. For people with cystic fibrosis, physical fitness is incredibly important for a myriad of reasons; those with a higher aerobic capacity have a higher life expectancy, which correlates significantly with having a better quality of life score. Physical activity also has the potential to improve muscle strength, bone density and prevent or delay annual declines in pulmonary function.

But, what do we mean by physical activity?

Physical activity and exercise are terms often used interchangeably, yet they have separate and distinct meanings.

‘Exercise’ is often the term most familiar to people, however it can also be rather off-putting to some: you do not need to be doing exercise to be active. Simple everyday activities such as brisk walking, cycling, gardening, stair climbing, cleaning, jogging, running, rowing, manual work, contribute to your daily dose of physical activity.

Any level of increased physical activity is beneficial. By simply doing 15 minutes of moderate physical activity a day, you will have an incredible three years greater life expectancy than those who are inactive or sedentary.

In relation to the risk of harm from moderate intensity physical activity, it is very small, compared to the well-established detrimental risk associated with inactivity and sedentary behaviour.

Ask yourself, are you currently meeting your recommended dose of physical activity?

Adults (>19 yrs.)

1. Habitual Physical Activity: 150 minutes per week or more in activities of your choice (preferably 300 minutes) 2. Aerobic Exercise: 30-60 minutes daily of moderate-to-vigorous exercise (at least 70% of your maximal heart rate) 3. Resistance/Strength Training: 2-3 times per week per muscle group (1-3 sets of 8-12 repetitions at 70-85% of your 1 repetition maximum) Nicola Hurley, a PhD Researcher from the School of Health and Human Performance at DCU, funded by the Mater Foundation and Cystic Fibrosis Ireland, is conducting research within the area of exercise and cystic fibrosis. Since presenting her PhD outline at the Cystic Fibrosis Ireland annual conference earlier this year, Nicola has successfully conducted her first PhD study to completion. The study investigated the knowledge and practice of Irish healthcare professionals working in cystic fibrosis care.

Nicola and the research team at DCU are in the process of submitting this study as a paper for peer review, to be published in the near future for your review.

Currently, Nicola is in the midst of conducting her second study, which aims to evaluate PWCF perspectives in relation to physical activity and exercise. Nicola is particularly interested in addressing PWCF motivators and barriers to physical activity and exercise participation, which will aid in the design of her upcoming physical activity and exercise intervention.

Nicola and the research team at DCU endeavor to place PWCF at the heart of their research, which is why gathering patient perspectives is a hugely important component of their intervention design. Nicola will be conducting a novel and innovative physical activity and exercise intervention, commencing early 2020, and invites you to contact her at nicola.hurley.cf@gmail.com if you are interested in participating!

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Augmenting Memory Recall During Medical Appointments Michael Twomey is a Cystic Fibrosis (CF) patient, who has set out to improve the lives of those impacted by the CF by exploring ways of augmenting memory recall during a medical appointment.

From a psychological perspective, medical appointments are hugely complex with numerous variables. For patients with a chronic illness (and their carers), appointments can be particularly stressful, and hence effect cognitive function.

This can lead to the sharing of inaccurate information having many pernicious effects. Michael set out to develop a two-fold solution that would reduce stress for patients/carers, increase their empowerment and improve data quality for clinicians, thereby facilitating improved decision making within the medical appointment.

His ongoing Action Design Research (ADR) study is funded by the Irish Research Council’s Enterprise Partnership Scheme (Project ID: EPSPG/2017/354) and Cystic Fibrosis Ireland (Enterprise partner) and takes a People, Process, Technology, Data view of two critical information phases within a medical appointment to understand the complexities that exist, and the need for memory recall/information retrieval by patients/carers. The practice inspired investigation is driven by the following motivation: How might we augment Cystic Fibrosis (CF) patient/carer memory recall/ information retrieval within the elicitation and elucidation phases of the medical appointment?

Building on extant literature on check list creation and memory recall the result of his research has been the publication of a colour coded medical appointment check list (now in a booklet form) that invites patients/carers to complete critical sections before and during a medical appointment, which act as a point of reference at a later date, lending itself to an autobiographical memory account of medical events. The check list is having a real-world impact, where recently the check list booklet was distributed to all 1,245 CF patients/carers within the Republic of Ireland by CF Ireland. Moreover, communications regarding the check list booklet have begun with CF stakeholders in the Czech Republic, Austria and the UK. The check list artefact has a number of design elements of value to practice and research, of which the most novel is the unpacking of declarative memory into its subcomponents, where the check list design maps to “aid” the memory type drawn upon by the patient/carer within the medical appointment. The outcome is a check list that enriches patient/carer memory recall/information retrieval, reduces stress, improves data quality and the doctor’s ability to make an effective diagnosis.

These findings are both transportable and adaptable to the medical appointments of other disease states. The check list is a particular contribution to memory recall/information retrieval as a class of problem.

The Checklist booklet aspect of the project is now complete. Michael is currently writing up his PhD thesis and finishing a number of research papers (on his PhD findings) to be submitted to internationally recognised Journal publications. In tandem with this Michael is in the early stages of looking at how a digital intervention may aid CF patients/careers with “Memory Recall” outside of the medical appointment environment.

Michael Twomey 3 Year PhD student, BIS UCC Email: mbtwomey7@gmail.com rd

www.cfireland.ie

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KIDS CORNER H

alloween is a time for trick or treating, when it is fun to be scared! From dressing up to watching scary movies, carving pumpkins and going to scare attractions! But it is

not only at Halloween that people get scared.

Everybody has something they are afraid of, but not everyone is scared of the same things - some people are afraid of spiders, others are afraid of heights, some people are afraid of the dark and others are frightened of thunder! A lot of people are afraid of needles, this is caused needlephobia (knee-dil-fo-bee-ah). Often the more someone has to have an injection, the bigger the chance they have a fear of needles.

People with cystic fibrosis may need to get a lot of needles during their life and this can be very tough if you are afraid of needles. It is ok to be afraid, but here are some tips to help you feel more relaxed when you need to get an injections; Talk! - Tell your parents, your siblings, your nurse or doctor that you are scared. You might find others who are afraid of needles too! When you are at your next CF clinic ask the nurse or doctor if you can see the needle used for your injections and have them talk you through everything. Sometimes the more you know, the less scary it will become!

Listen - Bring some earphones with you and listen to your favourite song or story when getting your injection, this will help you relax and when we are more relaxed the needle won’t hurt as much.

Squeeze - Have someone with you and squeeze their hand tight, or bring your favourite teddy with you and hold it tight while for comfort.

Take your time - Needles can be scary so if you are afraid don’t rush yourself to be brave and face your fears. Remember everyone is afraid of something and this is what you are afraid of. You are not in a race so take your time to find out what works for you.

Can you fit the Halloween words into the puzzle?

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BAT

GHOST

VAMPIRE

WITCH

PUMPKIN

SKELETON

WORDSEARCH SOLUTION Summer 2019

Spectrum / Autumn 2019

YOUTH REACH H

i my name is Sarah. I am eleven years old and I have just started sixth class.

When I was eight my mam and dad got me a dog for my birthday his name is Max and he is a schnauzer, I love him so much, I think he is the cutest dog ever! Since I was small I have always loved soccer. When I was eight, I started to play for a team called Homefarm FC. Since then, I have won the players player of the year for the under twelves team. Also when we were playing under ten, we won the Toro cup that was the first trophy I had ever won. Recently I did mascot for the Women’s International Ireland team it was such a great experience. I walked out with Marie Hourihan, she is the goalkeeper for Ireland and I also got the opportunity to meet the president, Michael D. Higgins. While walking out of the tunnel onto the pitch it really gave me the feeling of what it is like to be a footballer. I would absolutely love to play for my country one day.

I support Liverpool FC. I am a huge fan ever since I can remember. I have been to Anfield twice, the second time I was there I got the chance to sit in The Kop with my dad it was such a great feeling, they won 4-0 that day. When they won the champions league, I was so happy I cannot even describe the feeling.

I was diagnosed with cystic fibrosis just before I turned two years old it was a surprise to my family because nobody else in our families has or had CF. My mam and dad had to learn about the condition and our new daily routines.

Now it is just part of our normal daily routine, in the morning I do a saline nebulizer and acapella, then after school, I do pulmozyme nebulizer and usually have a bounce on the trampoline with Max and my cousins. At night I do ventolin and saline nebulizers and acapella. I also take my orkambi and creon during the day this is all just part of my daily routine. I don’t really think too much about it anymore. I think all of this plus all the soccer I do really helps me stay fit and healthy. I don’t really think CF stops me from doing anything any other eleven year old does.

My dream is to be a pro soccer player. I would love so much to play for Ireland and maybe even Liverpool when I am older. I have been on TV when I did mascot for the Ireland women’s team, it was on RTÉ. I was in the newspaper when I was playing under ten for homefarm when we got in to the semi final of the cup, there was a picture of the team and I even got a mention. I hope to keep playing soccer for many years to come and with the great support from the team in Temple Street and from my family I believe this is possible. I hope my story will help other girls and boys to follow their dreams!

Sarah

www.cfireland.ie

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CF Treatments CFTR Modulator Therapy Overview

CFTR

modulator therapies are precision medicines. In the context of CFTR modulators, precision means that the CTFTR medicine prescribed to you for your CF is precise to your CF mutations. So a CFTR modulator therapy may work for one person with CF with suitable CF mutations for that drug but will not work for another person with CF with different CF mutations which are unresponsive to the mode of action of that CFTR drug.

Currently there are 3 CFTR modulator therapies approved for use in Ireland: Kalydeco, Orkambi and Symkevi Kalydeco Kalydeco is a monotherapy of active agent Ivacaftor and was approved initially for use in Ireland in January 2013.

In June 2017 it’s use was expanded so that it is now available for persons with CF aged 2 or older with any of the following CFTR gating mutations: G551D, G178R, S549N, S549R, G551S, G1244E, S1251N, S1255P and G1349D Additionally Kalydeco is available to persons with CF, aged 18 years or older with an R117H gene mutation.

Note the mutation G551D is prevalent in approximately 15% of the Irish CF population while R117H is prevalent in about 6% of the Irish CF population.

Orkambi Orkambi is a combination therapy of two active agents- Ivacaftor and Lumacaftor. This was approved for use in Ireland in April 2017 under a pipeline deal with the HSE and Vertex Pharmaceuticals to persons with two copies of F508del mutation aged 12 or over.

Orkambi was then extended in April 2018 to persons with CF with 2 copies of F508del aged 6-11 years and was further extended again in early 2019 to persons with CF aged 2-5 years with two copies of F508del. Approximately 57% of the Irish CF population have 2 copies of F508 del mutations and so are potentially suitable to Orkambi use.

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Spectrum / Autumn 2019

Symkevi Symkevi is also a combination therapy of two active ingredients; Ivacaftor and Tezecaftor. This was approved for use in Ireland in January 2019 for persons with CF age 12 and older with two copies of F508 del mutations and also to persons with CF aged 12 and over with one copy of F508 del mutation and also have one of the following CFTR mutations: P67L, R117C, L206W, R352Q, A455E, D579G, 711+3A→G, S945L, S977F, R1070W, D1152H, 2789+5G→A, 3272 26A→G, or 3849+10kbC→T. Symdeco is the approved drug name for Symkevi in the US and in July 2019 Symdeco was extended to cover persons with CF aged 6 and older with CF with two copies of F508del mutation or persons with CF aged 6 or older with at least one responsive CF mutation from the following list: 711+3A→G

A455E

D579G

E193K

K1060T

R117C

S945L

2789+5G→A

A1067T

D1152H

E831X

L206W

R347H

S977F

3272-26A→G

D110E

D1270N

F1052V

P67L

R352Q

3849+10kbC→T

D110H

E56K

F1074L

R74W

R1070W Vertex Pharmaceuticals received FDA approval on October 21st 2019 for a triple combination therapy Trikafta for persons with CF aged 12 and over, with at least one copy of F508del mutation. This therapy consists of 3 active agents- elexecaftor, tezecaftor and ivacaftor and follows the successful outcomes of the VX445 clinical trials and was fast tracked by the FDA for review and now approval several months ahead of anticipated decision in March 2020.

This new therapy regimen now covers mutations that represent 90% of the CF population- see further information: https://www.fda.gov/news-events/press-announcements/fda-approves-new-breakthrough-therapy-cysticfibrosis?fbclid=IwAR2iCjDmGi8_af2fVX5tMjPDG7s5QJNvb0Oe1NsRfAO55ecF45r5BtPL1eo Vertex Pharmaceuticals have also completed a marketing authorisation application to the European Medicines Agency for approval of this triple therapy in Europe.

If you have any queries in relation to CFTR Modulators, speak to your CF Team.

The Member Services Team are also available to discuss any issues relating to CF Care:

Caroline Heffernan CF Advocate Email: cheffernan@cfireland.ie Phone: 087 932 3933 www.cfireland.ie

Rory Tallon CF Advocate Email: rtallon@cfireland.ie Phone: 087 932 3930

Samantha Byrne Member Services Senior Corodinator Email: sbyrne@cfireland.ie Phone: 01 496 2433

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My Legacy Month November 1 st - 30 th Having a Will is very important for so many good reasons and particularly during My Legacy Month, when you are encouraged to take that first step in writing your Will by making an appointment with a solicitor.

Cystic Fibrosis Ireland are a member of My Legacy.ie who have the support of hundreds of solicitor firms all around the country and can offer expert guidance and advice about making a Will at any time of the year.

It is usually a much more straightforward and cost effective process than you might think and your solicitor will discuss fees for drawing up this important personal document when you make your appointment.

Once family and friends have been looked after and all other important personal decisions have been made, deciding to leave a legacy gift to a charity is a wonderful way to support a favourite cause such as Cystic Fibrosis Ireland. Large or small, every legacy is a generous gift of hope and trust for the future.

We understand that leaving a legacy is a very private decision. Some people choose to let us know that Cystic Fibrosis Ireland has been remembered in their Will. Others prefer to keep their desires private, leaving it to their executor or solicitor to let us know when the time comes.

1. Make an Appointment Avail of expert advice and support. Take the first step to discuss your wishes and decisions for the future.

2. Look after Loved Ones First Why a Will is important.

A Will provides for loved ones, assigns guardians, protects your assets and helps reduce inheritance tax.

3. Consider a Legacy to Charity Your gift may be big or small and is tax free.

If you have a cause close to your heart such as Cystic Fibrosis Ireland, please consider leaving a gift to that charity in your Will.

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Spectrum / Autumn 2019

Many people can afford to give far more in their Will than they ever could when they are alive.

It won't cost anything in your lifetime, but will ensure your generosity, your legacy will live on to support future generations, and help us to make long-term plans in support of CF care throughout Ireland.

By leaving a gift to Cystic Fibrosis Ireland you help us to; • Fund pioneering research, so that one day CF can stand for ‘Cure Found’ • Provide advice, information and advocacy services to help people with Cystic Fibrosis • Fund specialist Cystic Fibrosis multidisciplinary posts in hospitals throughout Ireland • Provide funding for Cystic Fibrosis units around the country, including dedicated in-patient, day care and outpatient facilities • Help people with Cystic Fibrosis directly with Exercise, Transplant, Fertility Counselling and Bereavement Grants

For more information on leaving a gift in your Will, please see the enclosed leaflet “Your Legacy Could Be Life Changing”, visit our website at www.cfireland.ie or the My Legacy website www.mylegacy.ie.

Alternatively you can contact Rachel on 01 496 2433/ rbyrne@cfireland.ie for more information.

My Legacy Month is as good a time as any to make your Will and consider leaving a legacy gift to a cause you care about such as Cystic Fibrosis Ireland www.cfireland.ie

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FUNDRAISING: Challenges and Events For further details on any of our fundraising events, visit our website www.cfireland.ie, contact the CFI Fundraising Team on (01) 496 2433 or email fundraising@cfireland.ie Dec 13th: Christmas Jumper Day 4 CF On Friday 13th December, we are encouraging as many workplaces as possible nationwide to support Christmas Jumper Day 4 CF. Interested in getting involved? All you need to do is…

1. Ask your staff or colleagues to support Christmas Jumper Day 4 CF on Friday 13th December.

Encourage everyone to wear their most seasonal looking Christmas Jumper to work in return for a €5 donation to support people with Cystic Fibrosis in Ireland!

2. Contact us!

To confirm you are taking part contact us on (01) 496 2433 or email at fundraising@cfireland.ie and we will organise to send you on your Christmas Jumper Day 4 CF pack - balloons, bah humbug badges, posters, sponsorship cards and collection buckets as required.

3. Bah Humbug donation!

If colleague does not wear a Christmas Jumper, ask them to make a donation of €10 in return for a ‘Bah Humbug’ badge! It’s all for a great cause!

4. Ask you company if they are willing to match fund the monies raised!

5. On the day, make sure to take loads of photos!

Post them to our Facebook page (facebook.com/CysticFibrosisIreland), Share them on Twitter and Instragram using the hashtag #ChristmasJumperDay4CF and tag us (@cf_ireland) Or simply email them to us at fundraising@cfireland.ie so that we can share your fun with everyone else.

After the event you can; • Lodge the monies raised: IBAN: IE59 AIBK 9310 7108 5785 93 BIC: AIBKIE2D • Post a cheque to Cystic Fibrosis Ireland, 24 Lower Rathmines Road, Rathmines, Dublin • Donate online at www.cfireland.ie (Please remember to include your companiy's name as a reference so we know who it’s from) Don’t forget to email or call the CFI Fundraising Team to register your workplace and we will help you organise everything for your Christmas Jumper Day 4 CF!

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Spectrum / Autumn 2019

Oct 27th: KBC Dublin Marathon

Nov 3rd: TCS New York City Marathon

Cystic Fibrosis Ireland would like to wish all of our runners taking part in the KBC Dublin City Marathon on October 27th the very best of luck!

The TCS New York City Marathon takes place on November 3rd, starting from Staten Island and runs through all 5 city boroughs. With almost a million spectators and a carnival atmosphere the New York City Marathon is one of the most popular marathons worldwide.

Places for the marathon are now all sold out, but if you have registered and you have not yet picked a charity to fundraise for, please do consider fundraising for CFI! Contact Rachel at rbyrne@cfireland.ie / 01 496 2433 for more details

The 2020 Tour Package will open in January.

If you are considering taking part in the TCS New York City Marathon next year, please contact the CFI fundraising department who can provide you with a much sought after ‘Guaranteed Entry Place’ for the event.

Apr 10th: 65 Roses Day CFI are delighted to announce that 65 Roses Day 2020 will take place on Friday 10th April 2020.

Full details to follow in the next edition of Spectrum, but please mark the date in your Calendar.

We are currently asking schools and companies to get involved on 65 Roses Day by helping to sell our purple roses and organising fundraising events as part of the 65 Roses Challenge.

If you would like to volunteer to sell purple roses or would like to discuss any fundraising ideas with our fundraising team then please contact us on 01 496 2433 or email fundraising@cfireland.ie.

www.cfireland.ie

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Apr 11th: 6.5k Remembrance Walks Following the huge success of our walks last year, Cystic Fibrosis Ireland are delighted to announce that with the support of our branches and volunteers across the country, we are holding our 6.5k Remembrance Walks again next year on Saturday, April 11th.

The day will see people nationwide walking 6.5k in our purple t-shirts at 2pm to remember and celebrate the lives of those we have sadly lost to Cystic Fibrosis. If you would be interested in setting up a walk in your area contact Brendán on brendan@cfireland.ie.

The event will help to increase public awareness of Cystic Fibrosis in Ireland and raise much needed funds for CFI, so we can continue to provide support and services for people living with Cystic Fibrosis in Ireland.

Apr 26th: Virgin Media London Marathon CFI are delighted to announce details of the 2020 Virgin Money London Marathon package where we can guarantee you an entry to this highly sought after event.

The marathon takes place on Sunday, 26th April and will start from Blackheath and runs through many of the famous London districts and past many iconic landmarks such as the Tower of London, the Houses of Parliament, Big Ben and Buckingham Palace.

The standard tour includes: • 3 nights twin or double sharing with full buffet breakfast • GUARANTEED race entry • Private coach transfers to race start from the hotel (runners only) • Services of Sports Travel Guides Places are limited, so if you are interested, please contact Brendán at brendan@cfireland.ie as soon as possible for further details.

Apr 26th: Duleek 10k The Duleek 10k continues to go from strength to strength, so don’t forget to mark April 26th in your diary if you plan to take part next year. This event caters for people of all fitness levels and is suitable for runners and walkers alike.

Further details to follow in our next edition of Spectrum or you can contact duleekcf10@gmail.com or fundraising@cfireland.ie for more information.

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Spectrum / Autumn 2019

May 7th to 10th: Malin2Mizen Cycle4CF The Malin2Mizen Cycle4CF will take place from Thursday 7th to Sunday 10th May, 2020.

Malin2Mizen Cycle4CF 2020 will begin at Malin Head in Co. Donegal on Thursday 7th May and will finish in Mizen Head in Co. Cork on Sunday 10th May, having covered the following route; Thursday 7th May: Malin Head – Bundoran 155km Friday 8th May: Bundoran – Oranmore 173km Saturday 9th May: Oranmore – Mallow 163km Sunday 10th May: Mallow – Mizen Head 155km Registration for the cycle is now open at www.cfireland.ie.

All participants are asked to raise €2,000 to take part. This will also cover your food and accommodation for the 4 days of the cycle. All funds raised will go to CFI to help us continue to support people living with Cystic Fibrosis.

Places are limited, so please register as soon as possible to secure your place in this life changing event!

May 31st: VHI Women’s Mini Marathon / One in 1000 CFI had an absolutely fantastic turnout at the Vhi Women’s Mini Marathon in 2019 and we plan to build on those numbers for the 10th anniversary of our One in 1000 campaign next year. One person can make a difference! You can be that one person for Cystic Fibrosis Ireland by registering to take part in the Mini Marathon as part of our One in 1,000 Campaign.

Why not get your girls together and get exercising for CFI? A great day out, with a base provided at the D2 Harcourt Hotel - food and entertainment provided, while raising vital funds for people living with cystic fibrosis in Ireland?

The 2020 Vhi Women’s Mini Marathon will take place on Sunday 31st May next year. Keep an eye on our website and our social media channels for announcement of sign up details for One in 1,000 – 2020.

Contact Rachel at rbyrne@cfireland.ie / 01 496 2433 for more details. www.cfireland.ie

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All Year: Back To School CFI have written to all Secondary schools as part of our School Outreach Program, which aims to educate pupils on Cystic Fibrosis and introduce pupils, especially in Transition Year, to charity work.

We are asking all schools to support our 65 Roses Challenge campaign for 65 Roses Day on Friday 10th April 2020 by; • Organising a 65 themed fundraising event. This could be any event such as 6.5km walk/run, a 65 minute football match, a 65 minute sponsored silence in class etc.

• And/or holding a Non Uniform Day on 65 Roses Day with CFI wristbands available in exchange for a €2 donation from each pupil on the day.

• And/or selling our Purple Roses for €2 in your school for 65 Roses Day • And/or organising for your school to volunteer to support a fundraising collection organised by CFI in your local area.

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Spectrum / Autumn 2019

FUNDRAISING: Thank You It is not possible to list all of the Fundraising Events that have been organised since our last edition of Spectrum, but we would like to take this opportunity to thank everyone that has volunteered and raised money on behalf of people with Cystic Fibrosis. Every cent raised helps provide a better quality of life for people with Cystic Fibrosis and please keep up the great work.

Here is a short summary of some of the remarkable efforts of our volunteers:

Head2Head Walk CFI would like to say a huge thank you to everyone who took part in the Head2Head Walk on Sunday 15th September.

It was a fantastic day with 650 people taking part.

The walk began at 9.00am from Howth with the walkers making their way towards Sandymount for the half way break. The walkers really enjoyed the views around Dublin Bay as they went on their way Lunch was provided at Sandymount courtesy of Scribbles and Fyffes. The walkers then continued on their way towards the finish in Bray where a lovely reception and meal was laid out in The Royal Hotel in Bray, organised by the Eastern Branch of CFI. All participants received a medal on completion of the walk.

A huge thank you to James Downes, Lorri Downes and Mary McCarroll and their team of volunteers who put an enormous amount of work into organising this event with CFI and ensuring it ran smoothly on the day. We would also like to say thank you to Scribbles and Fyffes who provided refreshments for the walkers. Special thanks also to the Gardai and St. John Ambulance who help out each year.

Most especially we would like to thank all our walkers for turning out in huge numbers in challenging conditions at times for the walk this year. If you have sponsorship money to lodge from the event that they can do so using the bank account details below. Please remember to include your name and ‘H2H’ as a reference so we can receipt accordingly.

IBAN: IE59 AIBK 931071 08578593 BIC: AIBKIE2D We look forward to seeing you all again at the Head2Head Walk 2020 which will take place on Sunday 20th September. www.cfireland.ie

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Paddy Kierans’ Memorial Walk in ‘Glorious Greece’ CFI would like to congratulate all the walkers who participated in the annual Paddy Kierans’ Memorial Walk in Greece!

The Walk, which took place from September 20th - 27th, started in Glyfada and finished in Athens. Over the week, participants walked an average of 10km each day and took in sights such as the green hills of Sounio National Park, the islands of Aegina, Poros, and Hydra, the National Park of Mt. Parnitha, the Ancient Footpath Into Delphi, the Temple of Poseidon, and the UNESCO World Heritage site of the Acropolis.

Keep an eye on our website and social media channels for updates and the announcement of the venue for the 2020 walk.

Harrington Golf Academy

Paul D’Arcy, Dublin Plein Air Painting Festival

Cystic Fibrosis Ireland would like to say a huge thank you to Rebecca Codd Golf and the Harrington Golf Academy who held their annual Charity Scramble for CFI and raised an incredible €3,500! Fundraising Manager Fergal Smyth went to visit them to accept the cheque and thank them for their excellent fundraising!

Cystic Fibrosis Ireland would like to say a massive thank you to Paul and Theresa D’Arcy as they have been exceptional supporters of CFI over many years.

Pictured at the cheque presentation – Fergal Smyth, Fundraising Manager, CFI; Rebecca Codd, Rebecca Codd Golf; Tadhg Harrington, Harrington Golf Academy

26

Paul previously designed the CFI 65 Roses Pin and he painted the beautiful Kite painting in the Board room of CFI. Renowned Dublin artist Paul D’Arcy raised an amazing €1,275, from the Dublin Plein Air Painting Festival in July 2019.

Spectrum / Autumn 2019

Paris2Nice Cycle

David Crosby – London Marathon

CFI would like thank Enda Greehy from Cork for taking part in the 2019 Paris2Nice cycle and for raising funds on behalf of CFI. The cycle took place from 14th to 19th September and saw a large number of cyclists taking part to raise funds for a number of different charities.

CFI would like to say a huge thank you to David Crosby and his team of 30 people who ran the London Marathon 2019 in aid of Cystic Fibrosis Ireland and raised €4000.

We will confirm details of Paris2Nice 2020 in our next issue of Spectrum and on our website as soon as they are announced.

David is running the Big 6 Marathons for CFI and has now completed 3 out of 6.

Best of luck in the next 3 and we look forward to working with you to the finish line.

Benat Broderick – Pramerica Spirit of Community Awards A huge thank you to Benat Broderick who nominated Cystic Fibrosis Ireland as his charity choice after winning the junior section of the Pramerica Spirit of Community Awards leading to €500 being awarded to CFI. Benat is a fantastic advocate for Cystic Fibrosis Ireland.

Darts Exhibition, Direen’s Pub

Colin Curran - Skydive

Andrew Farrell - Skydive

Cystic Fibrosis Ireland would like to say a huge thank you to Brendan Kavanagh, Liz Hayes, Kieran Direen, and everyone who attended the Darts Exhibition on July 7th in Direen's Pub in Clonygowan, Offaly.

CFI would like to say a huge congrats and well done to Colin Curran from Cork who completed a skydive and raised €2,000 for Cystic Fibrosis Ireland!

CFI would like to say a huge thank you Andrew Farrell for taking on a Skydive Challenge at the Irish Parachute Club during the summer and raising over €1,000.

Thanks to Colin and all of his family and friends for their support!

Well done on all the hard work fundraising and doing the challenge for his brother Ross who has Cystic Fibrosis.

A fantastic €1,042.40 was raised!

A huge well done to all involved.

www.cfireland.ie

27

Global Payments Inc.

Malone Group

CFI would like to say a huge thank you to Global Payments Inc. who raised an incredible €3,500 to help us provide services and support for people with cystic fibrosis in Ireland.

A huge thank you to Malone Group who raised €3,100 from their annual Malone Group 65 Roses Cycle for 65 Roses Day this year and once again sponsored our 65 Roses Day Radio Advert to the value of €10,000.

We would like to say a special thanks to Enda Mulhern for nominating CFI to receive the donation. Rachel went over to their offices to accept the cheque.

Thanks to all who so enthusiastically got involved on the staff fundraising day!

Pictured at the cheque presentation are David Gannon, Managing Director, Malone Group and Fergal Smyth, Fundraising Manager, Cystic Fibrosis Ireland.

Malin2Mizen Cycle4CF 2019 A huge thank you to all the cyclists, support team and the Malin2Mizen Cycle4CF committee for all of their fundraising as part of the Malin2Mizen Cycle4CF 2019 with an amazing total of €137,492.51 which is €215 for every km cycled.

Registration is now open for Malin2Mizen Cycle4CF 2020 at www.cfireland.ie

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Spectrum / Autumn 2019

Ellen Moss, Noeleen Doherty & Emer Kelly - 6.5k Remembrance Walk Cystic Fibrosis Ireland would like to say a HUGE thank you to Ellen Moss (Donegal), Noeleen Doherty (Donegal) and Emer Kelly (Carlow) for organising 6.5k Remembrance Walks in their areas over the summer. Between the three walks they raised an amazing total of over €10,000.

Kieran and Claire Traynor, Kilimanjaro Challenge Cystic Fibrosis Ireland would like to congratulate Kieran and Claire Traynor who, in July 2019, climbed Kilimanjaro in aid of Cystic Fibrosis Ireland.

They raised a huge total of €8,400 and thoroughly enjoyed the challenge.

Thank you to Kieran & Claire for supporting CF Ireland through their climb.

We would also like to thank everyone who helped out in their fundraising efforts.

Michael Carruth – Help Us Fight CF CFI would like to say a huge thank you to former Irish Olympic boxing champion Michael Carruth for organising the 65 Round Challenge which took place on Friday 28th June in the National Boxing Stadium.

The event involved 65 different people stepping into the ring to spar against Michael Carruth, Kenneth Egan, Paddy Barnes, Andy Lee and John Joe Nevin for one minute. It was a fantastic night with a great atmosphere in the stadium and each participant was thrilled to have had the opportunity to box with an Olympic medallist.

CFI would also like to thank all those who volunteered on the night to help make this event such a success.

A massive total of €25,015.55 was raised from the event. www.cfireland.ie

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CFI Christmas Cards

8 cards per pack

12 different designs available plus three variety packs

Branches - please order via order form sent to each branch Public - please order via our website at www.cfireland.ie

Cystic Fibrosis Ireland 24 Lower Rathmines Road, Rathmines, Dublin 6, Ireland

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t: +353 1 496 2433

f: +353 1 496 2201

e: info@cfireland.ie

w: www.cfireland.ie

Company Reg: 449954

Charity No: CHY6350

CRA Number: 20011376

Spectrum / Autumn 2019