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SPECTRUM Winter / 2020

It's beginning to look a lot like Christmas! Get into the Holiday spirit with this bumper edition.

www.cfireland.ie

CONTENTS Latest News | 1 - 3 * Hospital Updates * Transplant Rates in Ireland * Update on the roll-out of Kaftrio * Update from CF House * CF Registry of Ireland Re-Consent Programme

Chairperson's Chapter |4 - 6 Spotlight | 7 - 13 * Kaftrio Life B4 & After * Mental Well-being * Information on Mental Health Supports

Community Central | 14 -17 Hospital Hub | 18 -22 * Spotlight: Digital Health in CF Outpatient Care * Updates from the CF Centres

Activity Pages | 23 - 26 Member Services|27 - 30 * Information on Tax and Social Welfare * CF Related Diabetes * Exercise Grant

Research| 31 - 37 * ECFS Conference Report * COVID-19 and People with CF * Research Update: Interview with Nicola Hurley

Fundraising | 38 - 49 * My Legacy Month * Challenges and Events * Thank You DISCLAIMER: The views of contributors, when expressed in this publication, do not necessarily reflect the position or policy of Cystic Fibrosis Ireland. COVER: PWCF Grace Shesgreen and her dog Cleo supporting Christmas Jumper Day 4 CF 2020

CEO’s Message Welcome to the Winter edition of Spectrum. COVID-19 has been with us for nine months now and I know that the CF community in Ireland remains anxious about the pandemic

Philip Watt Chief Executive

However, there is considerable hope on the horizon with the recent announcement of possible vaccines. The general decline in new cases since the commencement of the second wave of COVID-19 also offers growing hope. CFI continues to urge the Government to ‘keep the foot on the pedal’ and to see us all through to a much brighter 2021. CFI welcomes the very positive feedback from our members on the PPE grant and the increased funding for the exercise grants provided by CFI in 2020. I know our services unit led by Samantha Byrne will continue to provide support when needed and we hope to develop further well-being initiatives in the new year. The roll out of the ground-breaking drug therapy Kaftrio formally commenced on October 15th 2020. You can read updates on Kaftrio in the Latest News and Spotlight features of this issue. Fundraising will remain a challenge in 2021 and we ask all who support the cause of CF to once again help us out next year. It will be great when our community events are fully up and running again and we can renew friendships with old friends and welcome new friends and supporters, including at future annual conferences. Finally, a very warm welcome to Keith McCabe our new chairperson who is featured in this Spectrum and indeed to all our fine officers, branch members, supporters and CF clinical teams working hard for your care. Take care and stay safe over the Christmas period, love from all of us in CFI.

Philip Watt, CEO, CFI Nuala McAuley & Samantha Byrne, Editors

Spectrum / Winter 2020

LATEST NEWS: HOSPITAL UPDATES: Work on Beaumont in-patient unit Continues CFI with our colleagues in CF Hopesource helped to coordinate a consultative programme on the design of the proposed CF in-patient unit in Beaumont Hospital. The architects are the prestigious firm of Scott, Tallon and Walker. We hope that the final go ahead to commence building will be given in 2021. New CF Consultant in Cork University hospital A new CF consultant for CF adult care has been appointed to Cork University Hospital (CUH). CFI has been a strong advocate for this post in recent years, not least because of the increasing numbers of adults in CF care in CUH. CF Consultant and Dietitian for the Mater Hospital CFI has provided initial funding for a CF Consultant and Dietitian for post-transplant CF care in the Mater Hospital. Adequate resources for post-transplant CF care has been a key priority for CFI in recent years and this development marks a very significant advance in realising this ambition. We will let you know when these posts have been filled. Leben Building in Limerick to return to CF care Since March 2020 the two CF floors in the Leben Building in University Hospital Limerick have been used by the Hospital for Covid-19 care. We are pleased to report that at time of publication of Spectrum the Leben Building was being deep cleaned in anticipation of its return to CF care. This will facilitate the assessment and prescribing of Kaftrio for eligible patients in the Mid-West Region. 2019 a good year for lung transplants in Ireland but fewer predicted for 2020 because of COVID-19 Unsurprisingly lung transplantation across many countries globally and in Europe has been impacted by COVID 19. Ireland had a very good transplant year in 2019 when 38 lung transplants where undertaken (across all lung disease areas, including CF). However according to a media report in September 2020 there were only 11 lung transplants that had been undertaken in Ireland by September 2020. Thanks to much hard work, the lung transplant rate in Ireland has been very positive in recent years and Ireland had the 6th highest rate of lung transplants in the world. The rate of lung transplantation in the Republic of Ireland in 2019 is on a par with the United States and ahead of Australia, France and Switzerland. Hossein Javadpour is the new Director of the national lung transplant centre in the Mater Hospital. Professor Jim Egan is the head of ODTI, Organ Transplant and Donation Ireland. As well as providing funding, CFI works with other patient groups in the Irish Donor Network to support the introduction of soft opt-out organ donation as part of the forthcoming Human Tissue Bill. www.cfireland.ie

Kaftrio In October 2020 we received the great news that Kaftrio was given the green light in Ireland. CFI understands that the roll-out of Kaftrio is going smoothly and we have received a lot of positive feedback from members (see also 'Leben Building' above). We ask for your continued patience if you may be eligible for Kaftrio, but you have yet to be assessed. There may be those who are more ill that need prioritisation. Ireland is among the first four countries in Europe to receive Kaftrio. As you know The European Commission has licensed Kaftrio for use by people with CF in Ireland who: • Are aged 12 and over • Have two copies of the F508del mutation or one copy of F508del and one copy of a 'minimal function mutation' The details of the precise genotypes that the latter group covers are only available from your consultant. The licence granted by the European Commission is different to the one made by the Food and Drug Administration (FDA) in the US, which allows the drug to be prescribed to people over 12 who have at least one copy of the F508del mutation. Drug regulatory bodies across the world take different approaches to how they interpret evidence on the safety and clinical effectiveness of new drugs and ultimately what licence indication should be granted. However, there are good indications that the license for Kaftrio will be expanded further in the coming months. If you have been informed you are not eligible at present, you may be eligible for Kaftrio in the future. It would be worth checking with your CF clinical team at your annual assessment if your eligibility for Kaftrio has changed. Recent research shows that between 3% to 5% of the CF population in Ireland will not benefit from at least one of the 4 approved CFTR drugs- Kalydeco, Orkambi, Symkevi and Kaftrio. We would very much hope that forthcoming innovative medical research will result in ‘no one left behind’. Many Thanks to Rachel and Christina Rachel Byrne joined CFI in 2017 as Community Events and Digital Marketing Coordinator. During her time with CFI, Rachel worked on a variety of campaigns including the International Walk and One in 1,000 Campaign. Always good humoured, Rachel has moved to a new marketing role in London and we wish her well in the next stage of her career. Thanks to Christina Trieu who took up the role of Community and Individual Giving Fundraising Coordinator in 2018. Her key campaigns included the Head 2 Head Walk and Malin 2 Mizen Cycle - her work with CFI is much appreciated and we also wish Christina well in her new role. Cubby O'Connor - An appreciation It was with great sadness that CFI learned of the death of Cubby O’Connor on the 25th September 2020 in Spain. The early development of the regional branches of the CFAI (the former name of CFI) is in large part due to the pioneering work of Bridie Maguire, former CEO and the then Vice Chairperson and later Chairperson of the Association, Cubby O’Connor. Cubby responded to many requests for supports to help set up CFAI branches which he did unselfishly and this legacy remains a key part of CFI Cubby and his wife Mary had one child with CF, their only son Martin, who died when he was just 14 years old. Mary O’Connor sadly passed away in 2012. Cubby is fondly remembered for all his fantastic work with CFAI, his good humour and the many friends he made both through the jewellery business and with CFAI. With much respect and affection, especially to Denise and Elizabeth (Cubby's daughters), and to all the extended O'Connor family from all of us in CFI.

Spectrum / Winter 2020

CFRI Re-Consent Programme The Cystic Fibrosis Registry of Ireland (CFRI) are currently undertaking a programme of re-consenting all participants in the national registry. By collecting and analysing information on all people with CF in Ireland, the CFRI aim to better understand their health and wellbeing, and the treatments they receive. The introduction of the General Data Protection Regulation (GDPR) in 2018 gave us all more control over how our personal data is stored and used. As a result, CFRI need to ask you to re-confirm your consent for them to collect this information. The new consent forms are fully GDPR compliant and have passed a review process with the ethics committee of each CF Centre. CFRI are inviting all individuals attending CF centres in Ireland to join the CF Registry of Ireland, regardless of whether or not you have previously given your consent. Their hope is to include every individual with CF in Ireland in the CFRI. A patient registry is a secure, centralised database, containing health data on people with a specific diagnosis or condition. The CFRI have collected and recorded information on the health status of people with CF who agree to participate in the registry since 2002. Approved researchers use the registry to study cystic fibrosis treatments and outcomes. How is information collected? Your consent authorises the CFRI to access your (or your childâ€™s) medical records, collect and record your medical information. The CF team(s) or approved CFRI staff take the relevant medical information from paper-based and electronic hospital(s) records, and information on healthcare services used from the Health Service Executive (HSE). What is collected? Information on your diagnosis, CF genetics, weights, heights, lung function measurements, test results, health complications, medicines and treatments, hospitalisations and use of healthcare services are collected by our team, as well as information about how the condition and treatments have impacted you. How is the information protected? CFRI fully comply with the General Data Protection Regulation (GDPR) (2018) and the Data Protection Act 2018 in processing participant data. These regulations safeguard individualsâ€™ fundamental right to data privacy. Password protection and encryption of computer files and data, training of staff in data protection and regular review of data protection procedures are just some of the ways CFRI protect your (your childâ€™s) information. Is the information confidential? Yes. Ensuring personal information is private and confidential is extremely important to the CFRI. Participants are allocated a unique record number upon registration with the CFRI. Information that could directly identify an individual, such as name and date of birth, is hidden in the registry record. Only certain people can identify participants personally: approved CFRI staff and authorised contractors, and your consultant doctor and CF team. Participants will never be identified by name in published research and annual data reports. What is involved in joining? You will receive a new consent form (and assent form if under 18) and a copy of the CFRI patient information booklet. Ideally, participants will sign the consent form in clinic, and the form is co-signed by their consultant or other designated member of the CF team. Under the current COVID-19 restrictions, and with many CF centres using online or virtual clinics, this may not always be possible. CFRI have received ethical approval to utilise postal re-consent in some centres. In these cases, the consent forms will be co-signed once they have been received by the registry in the self-addressed Freepost envelopes. For individuals under the age of 18, parental consent is required for participation. Parents will receive a parent/ guardian information booklet. Young people aged 13-17 are asked to sign an Assent form by CFRI. Assent is a term used to express willingness to participate in research by persons who are too young to give informed consent, but who are old enough to understand the proposed research in general. Thank You to the Irish CF community for your continued support of the CF Registry of Ireland. Further information is available from www.cfri.ie, by contacting us at info@cfri.ie, or from your CF team. www.cfireland.ie

Chairperson's Chapter I

t really is an honour and a privilege to be putting words on a page as the new Chairperson of Cystic Fibrosis Ireland. I remember when my son Senan was born in 2014 and his CF consultant spoke in our first meeting with him to me and my wife Sheena about us facing our “New Normal”, little did I know that 6 years later I would be fortunate to be the new Chairperson, working with a passionate community and an incredible association to continue the support and work that Cystic Fibrosis Ireland stands for. Before I introduce myself, it would be remiss of me not to acknowledge the fantastic leadership, work, passion and goodwill shown by the outgoing chair, Patricia Duffy-Barber. Patricia had taken on the tenureship of Chairperson when I first became involved at the board as the incoming Treasurer three years ago. As the first PWCF to hold the office of Chairperson, I truly believe that she has led the association through a period of distinct transformation, she has been and continues to be a trailblazer for PWCF and it has been an honour to serve alongside her on the board and indeed the Staff and Finance committee. Thankfully, Patricia will remain involved on the S&F committee and indeed she will continue to support the board in her new capacity as Vice-Chairperson, both of which I know I am very appreciative of. So then it brings us to my first communication with you all and I am writing this from my spare bedroom in my family home in Greystones, which has of course turned into my home office, my “Cystic Fibrosis Ireland board room / Staff and Finance meeting room”, the list goes on. Like everybody, we have all managed to pivot and adapt to “Life with Covid” and it has been very interesting to see how it has impacted us all in many ways. Personally, we have managed to cope well as a team, we being myself, my wife Sheena and our three children, Rian, Senan and Fiadh. We of course have needed to adapt, focus on the more simpler and important things in life and enjoy spending time with each other. I was born in Greystones, Co. Wicklow and I now live there with my family, blessed to be beside the sea and have the Wicklow mountains on our doorstep. Being the father of somebody living with Cystic Fibrosis, I have learnt that there is more to being a Dad than just the title, you need to be a role model in a number of ways. We are very lucky to have Senan under the care of the top class team in Crumlin who have consistently given us the peace-of-mind relating to the management of Senan’s CF. Striving to lead as active a lifestyle as possible and encourage movement is the key to the future for living with Cystic Fibrosis and I have been very fortunate to get to know some of these role models that are in our Irish community. We need to continue to give them that platform to share their ideas and enable them to change the future for Cystic Fibrosis. From a fundraising standpoint, I have been lucky to take part in (not race!) a couple of marathons for Cystic Fibrosis Ireland here in Dublin and support some fundraising efforts in my own workplace. I like to stay active and keep myself moving and this is even more important during the testing times that Covid has brought but I am definitely much more appreciative of the new day-to-day.

Keith & Senan with CFI Ambassador Michael Carruth promoting Christmas Jumper Day for CF

The year 2020 will definitely be remembered as a turnaround point in human history. Many people have lost their lives to the pandemic around the world and so many others have been impacted in such a way that they cannot revert back to the “Way it was before Covid”. People have lost their livelihoods, their routines, their sense of purpose.

Spectrum / Winter 2020

When I think about 2020, I personally will look back on the year with a sense of gratitude for replacing the “Everyday life” that I had with positive things that I am surrounded by now. Positive things including time with my young children that I would never have had prior to this. It is going to be impossible to go back to the way it was because we have all been through so much internal change in our own lives. I think that this pandemic will have changed people and society for the better in the long-run and whilst we are still in the midst of such uncertainty, the hope that the promise of the vaccine will bring will give people that resolve required to get through the dark times that still linger ahead. 2020 has been a year where nature has affected everybody, not just a select group or portion of humanity or society or the select few. The crisis has had a global impact. As a society, it has helped to normalise “people” but there remains systemic flaws in how we treat each other. As the restrictions will begin to lift in the coming weeks / months ahead, I firmly believe that our psychology has changed.

Sheena & Keith with their children Senan, Rian & Fiadh

People will hopefully be less eager to spend all of their money on the latest trend or the new fad, hopefully we will begin to value each other more, our friends, our families, our wellbeing, over material gain. Hopefully, when the pandemic passes and life begins to return to “normal” we will all value something more than anything else, human connection. With a quick search to identify the 10 most used words of the year so far, a number of them stand out for differing reasons. Firstly, it is the ones that perhaps many of us would guess and assume are in the top 10 for 2020. Covid, Covid-19, Coronavirus, Pandemic, Facemask, Corona and Social Distancing. These can arguably be lumped together under the “Pandemic Banner” and are words that everybody has grown to be so tired of hearing about. The daily briefings with the chief medical officer, stories on news feed, wondering about how many new cases there have been in our country / county / town, how many people have sadly lost their lives to the virus, the new habits, the worry, the unknowns, the shared challenges and indeed the additional burden of living with CF or having a family member with CF during a global pandemic. However, when I was reading the list it was the other 3 words that struck more of a chord with me and my new role as Chairperson of CFI. Progress 2020 has absolutely been a year of progress for our association and we have been very lucky to see a number of new treatments, medicines and initiatives come to the fore during 2020. Being the parent of a young child with Cystic Fibrosis, I always have my eyes open to progress and how not only Senan’s life, but the life of every person around the world living with CF can be improved in some way. The vision that I know most parents of a child with CF have for their children is to live a “Normal Life”, whatever that materialises to be. My vision for the rest of 2020 and into the coming years ahead is that we continue to make progress in everything that we do. If we can focus on small wins, the incremental gains, progress the research projects, the treatment protocols, the tips and tricks, the exercise ideas, the social initiatives, the fundraising campaigns, the collective impact that we can make to the future for people with CF and their families are limitless. I know that the wider CF community in Ireland, the branches, the Staff and Finance committee, the Board and indeed the full team that work in the association will continue with the progress we have made and will continue to make into the future to better the lives of people living with CF.

www.cfireland.ie

Truth The value of trust in our association and the trust that we place every day into the hands of the teams, the researchers, the physiotherapists, the dieticians, each other as people living with CF or indeed family members / friends of PWCF, is invaluable. Our association and our community needs to continue to move forwards with a focus firmly on the truth and indeed on the trust that we place in each other. The honest approach and the drive for fairness for all is what will continue to make this association stand apart from so many others. We need to maintain honesty, we need to be open in our feedback, we need to challenge the status quo and we need to continue to seek for the best in class for everybody living with Cystic Fibrosis. Whilst some of the latest medicines have been significant for many people, there are still many that do not have access to these medicines for varying reasons. Our honesty and our direct approach will be a strong component of our direction in the coming years.

We need to work on Progress, Truth and Sustainability, all whilst maintaining Human Connection. Sustainability Typically, this word is used with a view on the environment and the sustainability of any initiative but for me, it is about the sustainability of PWCF living fully with their condition. It is also about the sustainability of the association and the work that we need to continue. As we look beyond 2020, the focus will pivot to research projects and the development of further treatments for people with CF. We will continue to work to secure placements for staff members in hospitals and clinics, we will continue to work on innovative therapies and we need to look into ways in which we can encourage more people living with CF to plan for their futures, of which the Independent Living framework painted a fantastic viewpoint forwards for. Being sustainable as an association is also a key component of our focus in the coming years, evolving our fundraising concepts, developing the supports and grants that our members need and sustaining ourselves to provide help and guidance where it is needed. So in conclusion, looking forward to my new role, it is one that I am extremely excited about. I want to thank Patricia again for her support over the past three years. The prospect of working with so many fantastic people within the branches, board and the association itself is one that fills me with such optimism. We need to speak out, we need to be brave and innovative and we need to continue to strive for great opportunities for all people living with Cystic Fibrosis in Ireland. We need to work on Progress, Truth and Sustainability, all whilst maintaining our own version of Human Connection. Thanks,

Keith Spectrum / Winter 2020

SPOTLIGHT: Kaftrio Life Before & After!

omas Thompson is a PWCF and former patient advocate for Cystic Fibrosis Ireland. A much respected member of the CF Community, Tomas is now working to research and develop medical devices to improve CF care. In this article Tomas talks about the timeline and development of Kaftrio and gives his own personal perspective about the impact of this new and innovative drug therapy. This article outlines one person's experience. As with all drug therapies, each person will have a different impact from Kaftrio. Further information on the roll out of Kaftrio can be found on page 2 or online at www.cfireland.ie

am a child of the late 70s and was born when the outlook for PWCF was very different than today. Back then CF was mostly seen as a childhood condition as many PWCF didnâ€™t make it to adulthood, those that did had a very different quality of life to PWCFs today. The treatments available when I was growing up in the 70s & 80s were limited and the research into the CF was only at its infancy. Members of CF Ireland at the time just like today, did all they could to push to speed up the development of new facilities and treatment. In years gone by and prior to understanding of the risks of cross infection, all CF Associations worldwide brought children with CF together for summer camps and similar joint activities. CFI was no different and one initiative was that every year CFI would rent a plane, fill it with as many CF families as they could, flying them to Lourdes to take ice baths and pray to St. Bernadette as this was seen as the best option of a cure at the time! To many this might seem strange today for many reasons, but these families formed the backbone for many years of organisations such as CFI, CF Trust & CF Foundation (CFF) in the US, who raised the funds by any means necessary which without we would not now have the treatments we have today. In the 90s the research sped up around the world, but for PWCF and their families it was slow, with many highs and lows over that decade as promising research into gene therapy failed to bring the desired results and the dreams of the late 80s when they discovery the CF gene was fading, as one approach after another was failing to translate in to an effective treatment. A vast effort was spent on research in the 90s to little effect, but in the early 2000s the US Foundation took a new approach headed up by Robert Beall, he went searching for a drug company that would try to take on CF head-on. That search led him to Aurora Biosciences, a San Diego company. In 2000, the CFF agreed to fund drug discovery work in cystic fibrosis at Aurora with $47 million investment over five years, this is the single most important investment made in CF since the discovery of the CF gene, as one year later, Vertex bought Aurora. www.cfireland.ie

Aurora had been developing modulator drugs that treats the inactive CFTR protein in the CF cell which is the underlying cause of CF. This discovery eventually led to Vertex's development of Kalydeco (Ivacaftor) which proved life changing for 10% of the PWCF population who had the gene G511D, but also give hope to PWCF that a medication for all could now be on the horizon. Viewing from the side-lines were the vast majority of PWCF (80%) in Ireland and worldwide, who had the CF mutation double D508 or one copy of D508 in some shape or form. The race was then on to develop a modulator for people with double D508 or one copy of D508. This led to the launch of Orkambi (lumacaftor/ivacaftor) in 2017, which was the first modulator that would work for me as I am double D508. Around that time I was having lots of infections and was in and out of hospital more than ever, so much so that in the 12 months before starting Orkambi I had spent more than 100 days in and out of hospital. That time in my life was not only hard on me, but for my partner Paula, and our families. As my lung functions was decreasing at a rate of between 1% - 2 % per year, keeping on top of everything was hard work for us all - lots of IVs, constantly in and out of hospital. Other PWCF families like us know what itâ€™s like, the inability to plan around school, college, work, holidays, birthdays and family events, in and out of hospital, living week by week; the rest of the world has now also experienced a little of whatâ€™s it like, as we all have to learned to live with Covid -19.

Looking back Orkambi was very positive for me, but unlike Kalydeco it did not deliver much of an increase in lung function as it did for PWCF on Kalydeco. For many Orkambi was hard to tolerate. Some of the side effects meant people had to come off it or could not take it from the start, for me the only issue was some chest tightness, but at the time it led to better quality of life for me and Paula. Orkambi was quickly followed by Symkevi (ivacaftor with tezacaftor) two years later and thanks to the pipeline agreement former Health Minister Simon Harris made, it allowed us to start on to it. Symkevi was better tolerated for many and for me I found it much better. I no longer had the chest tightness and I held my weight better without the use of daily feed supplements. Again, Symkevi slowed my lung function decrease allowing me to hold my base line lung function over the years, but still no increase. The holy grail was still to develop a modulator that could match the results seen with Kalydeco for people with D508. So along comes the 4th modulator drug from Vertex in just 8 years called Kaftrio (ivacaftor / tezacaftor / elexacaftor). The key difference this time around is that Kaftrio is a triple combination that works in conjunction with Kalydeco taken once a day to normalise the CFTR activity in CF cells for almost 90% of PWCF with double D508 or one copy of D508. The good news was the research results of Kaftrio mirror that seen in Kalydeco 8 years earlier.

Spectrum / Winter 2020

I only started Kaftrio 5 weeks ago but the medication took affect within hours. First I experienced what is being called the “purge”-within 48 hours I removed large amounts of mucus from my lungs with ease, I slept for 14 hours straight that night as I felt the effects of Kaftrio all over my body, it was unlike any of the other modulators I had taken before. As the days went on I felt so much better, no mucus, no cough, better appetite, I thought this is super for the first few days, expecting the mucus and cough to return in some shape or form, but as the weeks went on the cough reduced to a fraction of what it was, the mucus was still 95% less and clear. Four weeks later I had put on 3.7kg and most importantly my lung function increased by 11% in just 4 weeks! Not only is this game changing, its life changing, for me and for many others it has not only stopped the decline in lung function but reversed it. The study data is showing the average increase is around 14% in PWCF and yes there have been some side effects in PWCF but not yet for me. If they come, we will deal with them. But like much of life with CF it’s not always about the numbers, I feel much better, have more energy and we can now see that there is a modulator that works for us that is equal to or better than what we have seen with Kalydeco. When Vertex’s first drug came out, we knew they had cracked the code and that a drug would eventually come for us but time was always the issue, how long do we need to wait. For many PWCF they didn’t have that time and we need to remember them and the good fight they fought. Vertex has committed to find that medication for the outstanding mutations and to ensure all PWCF in every region can get access to it and no doubt the rest of the CF community will not rest until that time comes. Kaftrio and Kalydeco will not only add years to my life but just as important, it will add life to those years, and for many others with CF also. Kaftrio and Kalydeco will become the gold standard for the treatment of CF in the years ahead, it will reduce the numbers needing transplants, hospitalisations, reduce the hours of daily treatment, medications, physiotherapy we all need currently. No longer will a PWCF born today need to think that their future is any different to their brother or sister, classmate, or colleagues. So as you can see we have come along way and many people have helped lay the foundations for change over the years, it’s like a relay race where one generation passes the baton to the next to get us across the line. Kaftrio is getting us near that line, it’s like finding the Covid-19 vaccine for the rest of the world for us. There is an old Egyptian Proverb that says "Health is a golden crown, placed on the brow of the healthy that only the sick can see". Once available to all, Kaftrio could be that golden crown for the CF community, and will go a long way to answering all those prayers to St. Bernadette from the families in the past who did so much for CF. Kaftrio will free PWCF to live a normal life, we will no longer need to keep safe by staying apart (which we have done for many years) and someday in the near future the CF community will all meet up again safely. Now I believe that we have a truly game changing medication in Kaftrio, the challenge for PWCF will change again - to simply living a normal life.

Tomas www.cfireland.ie

SPOTLIGHT: Mental Well-being

any of us with struggle with mental health at some stage in our lives. This can vary from stress, anxiety, depression, fatigue and anger. The mind, like the body, needs to be taken care of. Finding the right support is key to dealing with mental health and well-being. Mental health supports come in a variety of forms from mindfulness to journalling, exercising to hobbies, medication to counselling. Each of these supports have a variety of options also so it is important to find something that suits you and that helps. In this Spotlight, Amy Whelan, PWCF shares her experience of mental health, in life and during the pandemic. We would like to thank Amy for being so honest in sharing her story with us. We hope that this article will start a discussion on mental health and encourage anyone who may be struggling to seek help and support. Some readers may find this article triggering. Details of supports available can be found on pages 12 & 13.

My ‘journey’ with my mental health has been as unique as my history with CF, which I believe is no coincidence. Days that bring difficulty and discomfort become a part of our lives living with an invisible chronic illness. We are all aware of the physical impacts of CF, the symptoms, the flare-ups, the exacerbations and the dreaded progression. The impact doesn’t always stop there, my mental health has always been intertwined with my physical health, but it took the best part of a decade to figure that out. The more I began to understand about my own experience the more I came to realise the discussion around our mental health and emotional well-being was somewhat of an afterthought, something used to name and blame or more often than not, absent altogether. I like to believe we cannot help what we do not acknowledge. For me, recognizing where I found myself with my mental health and reaching out for the support I needed, changed everything. I promised myself in writing this I would be as honest as I could be. I hope through sharing our experiences it will benefit the way we talk and care for all aspects of our health. Looking back, my mental health was always giving me a sign that it was struggling. I have memories as early as five dealing with panic and anxiety with medical interventions. The depression came later in my teens, but it was always hidden under a blanket of anxiety. At 15 I went through a CF-related trauma that left lasting marks, I spent the year that followed in a haze. The remaining of my teen years were compounded by stress, of which nearly crushed me. I spent half of my time in education absent as I dealt with my complications of CF, the apprehension made sense. My acceptance to University brought a huge relief, I was told and believed that my ability to study independently would finally benefit me as I moved into third level education. As my journey would have it, instead this marked the beginning of the most difficult chapter I have had to face with my mental health.

Spectrum / Winter 2020

I spent five years trying to complete my undergraduate degree. It was everything that I dreamed of yet inside I was crumbling as each semester passed. My memories of that time are foggy and I wasn’t truly myself, which if you have ever experienced is incredibly uncomfortable. I was struggling to cope. My social anxiety became the red flag that signaled something needed to stop. I started to have panic attacks, any type of social situation caused me physical anguish. I knew deep down that it might be time to step away from my studies. That day broke my heart to pieces, it felt like I was asking myself to give up on a dream. At that time I wasn’t sure if I’d ever return. I had hope that this was not the only way to live and that better days lay ahead. Knowing where I am now, I was right. In the months that followed that day, the pain and sadness lingered but the healing had begun. I remember begging my parents to not tell a soul that I would not be returning as I tried to process my decision. I felt too ashamed. I think you can tell from me including this moment here that I do not feel the same for that decision now. It will take every ounce of strength you have in those moments, but with time and support those moments will become your turning points just like mine have. The years that have followed since that day are a story in itself, but I can say with certainty that it was all up from here. I enrolled in Social Anxiety Ireland’s group program led by Dr. Odhran McCarthy. I credit this program for enabling me to create the tools I needed to lower my anxiety over time. I still use these tools when I need to and my social anxiety no longer interferes with my life. I have had the support of psychologists through my CF Clinic. I have seen quite a few over the years, my first as early as eight years old. Finding a therapist that you trust and feel comfortable with is so important and can take time. It’s something I can’t quite explain, but you will know when it feels right for you. It makes a world of difference and I would urge you not to give up. It’s not personal and a good therapist will understand this. I have immense gratitude for my current therapist for the support they have given me. I have an analogy that I like to use for how therapy feels for me. I imagine the inky black, dark spaces of my mind that I have found myself in (depression) not knowing what way is up, is akin to being underwater. Therapy allows me to visit those spaces gently, in my own time, with someone I trust to help guide me. Slowly resurfacing, otherwise it all gets a bit messy and hard to understand. I know when I find myself in that space again, underwater, I will have built the tools to find my way out. I like to think of it like scuba diving but I’ve never been so it’s very abstract, which I think is very fitting. Talking about my mental health I cannot exclude my experience with the CF Modulators, one of which I have found stability in my physical health for the first time. This is a part of a much larger topic but I’ve found just as any significant transition can have an emotional impact, this too has been no different. It’s no doubt been a dream, I feel very lucky to have had the opportunity to experience this but it has still been tough. I have never been this present in my own life, it’s both wonderful and jarring when it’s not something I am used to. My advice as we go forward with these modulators in our lives is be to be kind to yourself. Whatever you feel regarding these new advancements is valid and okay. It’s new and there is no right way to process these life-altering moments, no matter where your story leads you. I also need to include the elephant in the room that is covid-19. It has changed all of our lives in many ways this year. Dealing with the risk of this infection whilst being categorized as very high / high risk is no easy feat. There is so much to be said that I can’t possibly cover it all here. Mentally, this second lockdown has been a lot tougher for me. Every day seems to blend into one and time is nonsensical. The stress I have felt this year was like nothing I’ve felt before. For me it’s not the infection risk that caused this spike in stress and I know this will not be a common feeling, instead being suspended in the same pattern with little change and far too much indoor time has caused a few wobbles for me. I didn’t realise how much I relied on my routines to help balance my emotional well-being. www.cfireland.ie

I find myself very fatigued and right now it’s a daily battle reminding myself that it’s okay to go slow. I remain hopeful overall that an end is in sight and that change will come. I believe just like supporting your mental health there is no right or wrong way to cope with the magnitude of disruption this infection has caused. Therapy has and continues to be a huge support for the revolving door of emotions and stressors that I have felt. Whatever these last few months have been like for you, know you’re not alone. I’ll be right there with you taking baby steps as we weather this winter season. Earlier this year, during our first lockdown, CFI ran a mindfulness course led by Niamh Connolly, CBT Therapist. I found this course to be a great source of support and knowledge. I’ve very thankful to both CFI and Niamh for creating this space. I hope as we continue to share our stories and change the language we use around our mental health, more spaces and supports are made available for our community. I hope in some way sharing a snapshot of my story has encouraged you to seek the supports you need. If you don’t know what it is that you need, that’s okay too, ask for help anyway.

Amy

Mental Health Supports

t is estimated that over 18% of people in Ireland are living with a mental health illness. This number is now likely to be much higher as a result of COVID-19.

The COVID-19 pandemic has impacted everyone's life. The restrictions have meant that we are staying at home more, having less social interactions and not exercising as much as usual. The reduction in routine and balance can have a negative impact on both your physical and mental health. For many, the worry and upset caused by COVID-19 will be temporary. However, for some, the impact will be more severe. The recent COVID-19 survey carried out by Cystic Fibrosis Ireland in conjunction with UCD showcased that the CF Community are experiencing high levels of anxiety, stress and depression. It is important to recognise if you are struggling to cope. Help is available. Signs and symptoms can vary in individuals. If you have concerns about yourself or someone close to you it is important to seek help. Unsure of where to go? Face-to-face mental health services are limited at the moment because of the COVID-19 pandemic, however a number of HSE and charity organisations are providing online, text message and telephone services. The HSE has put together a handy list of available resources where you will find links to • Online counselling supports • Phone, email and text services • Apps to support your mental wellbeing • Specific supports for young people, parents / guardians and older people A selection of these supports are available on page 13. Alternatively you can access the full list of information on www.hse.ie/services/mental-health-supports-and-services-during-coronavirus

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Cystic Fibrosis Ireland Cystic Fibrosis Ireland offer a counselling referral service for people with CF who wish to speak with a professional. Funding is available for up to 8 sessions which are completed online or via telephone. You can find out more through the www.cfireland.ie website or by contacting Samantha Byrne, Senior Member Services Coordinator at sbyrne@cfireland.ie

Online counselling and support Minding your Wellbeing - Free series of online video resources to learn and practice key elements of mental wellbeing such as mindfulness, gratitude, self-care and resilience from HSE Health and Wellbeing. Visit www.yourmentalhealth.ie Mental Health Ireland - Information and support for people who experience mental health difficulties Information line 01 284 1166 from 9am to 5pm Monday to Friday Visit mentalhealthireland.ie Email: info@mentalhealthireland.ie

Text Services Text 50808 - A free 24/7 text service, providing everything from a calming chat to immediate support for people going through a mental health or emotional crisis. Text HELLO to 50808, anytime day or night. Visit www.text50808.ie for more information.

Mobile apps These mobile apps can help you manage anxiety. They have been approved for listing here by the HSE Mental Health Group. The app developers are solely responsible for their compliance and fitness for purpose. These apps are not supplied by the HSE or CFI and neither are liable for their use. MindShift (by Anxiety Canada)

MindShift CBT teaches about anxiety, helping users to engage in healthy thinking and to take action. Users check in each day to track their anxiety and work with tools in the app. Headspace

Headspace is a well-known mobile app that teaches meditation and easy to use mindfulness skills. Map your journey and track your progress and â€˜buddy upâ€™ with friends and motivate each other. Clear Fear For teenage mental health charity Stem4. The app uses CBT to focus on learning to reduce the physical responses to threat by learning to breathe, relax and be mindful as well as changing thoughts and behaviours and releasing emotions. You can personalise the app and track your progress.

www.cfireland.ie

Community Central Cocooning Celebrations

t is fair to say 2020 has not been the year anybody predicted. However, for some people 2020 was a milestone year nonetheless. While cocooning, restrictions and social distancing have been integral in keeping us all safe, it has meant that celebrations this year have been hampered. The celebrations may have been different, but that doesn't mean the occasion is any less special. Which is why we are highlighting just some of the celebrations that took place this year for members of the CF Community. Congratulations to all those featured!

CF Advocate Caroline Heffernan turned 50 in August! 50! OMG where have the years gone? I vividly remember my mum turning 40 and thinking, "wow that’s ancient" and then immediately promising myself to set a target age well beyond all belief. For some unknown reason 80 came to mind, however now 80 doesn’t seem that far away so I might have to rethink that target. My birthday plans didn’t go according to plan, but living with CF means you learn to make the most of all situations. I had decided to do something special every month for the year. So, we know this didn’t happen but I have to say in the whole scheme of things I don’t feel hard done by, how can I? I’m 50, unbelievable considering what was predicted for me. I had 3 cakes - my best friends and I had a social distancing garden tea party at the end of August to celebrate our birthdays, my wonderful clubmate at Tri Lakes TC presented me with a cake at the end of our summer run series and Anna made me a delicious cake on the day of my birthday. But this year isn’t just about me. Many of you will know my better half, Fran, he also turned 50 in September. Finally, the light of my life our grandson Milo Jay turned 1 on grandad’s birthday - a date never to be forgotten. He lights up our world on the darkest of days. For me, 2020 has been a special year full of memories I won’t forget. 14

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Happy 21st Robbie! PWCF Robbie Downes was due to fly to Las Vegas to celebrate turning 21. While Vegas was off the cards, Hawaii was not - his family brought Hawaii to him with a summer garden party. Happy birthday Robbie!

A New Arrival

A Golfing Great

Congratulations to PWCF Lar Brennan and his fiancĂŠ Inese on the birth of their baby son Lar.

PWCF Alex O'Herlihy came third in the Irish Kids Golf Tour held in Fota Island Golf Course on August 17th.

Now six months old, baby Lar is thriving and the family are looking forward to Christmas. Welcome to the CF Community Lar! www.cfireland.ie

What a tee-rific result! Watch out Rory McIlroy! 15

Four-midable

The Six News

Magnificent Seven

PWCF Caoimhe Hally celebrated her 4th birthday in July with a LOL Party - that looks like it was a LOT of fun!

Sarah turned 6 on April 14th. Her cousins came to the green beside her house to sing her happy birthday while socially distancing!

PWCF Ruth Mullally celebrated her 7th birthday during the second lockdown with a family party at home.

A wONEderful Day Despite the lockdown, Izzy was Belle of the Ball as she celebrated her 1st birthday in May at home with her family! Triple Combo Halloween was the icing on the cake for PWCF Jason, aged 12 and his brother Liam (8). The brothers celebrated their birthdays within two weeks of each other, with Liam celebrating his birthday on Halloween itself. They couldn't have a party, but they could have cake and what a cake it was! 16

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First Holy Communions After two cancellations, it was third time lucky for PWCF AJ O'Reilly who received his first holy communion on October 2nd. AJ celebrated this milestone with his family at his grandparentâ€™s house. AJ is pictured above with his sister Molly and brother Billy. On May 25th Grace Duffy, pictured right, was due to make her communion. Due to Covid-19 the ceremony could not go ahead and is set to be rescheduled. To mark the important date and milestone, Grace donned her dress and the family celebrated anyway. We think you'll agree she looks beautiful!

Winner Winner It was double celebrations for PWCF Harry Cahill who received his red belt in Taekwondo and won team gold with St. Cocas in the Kildare Under 14s Cross Country Championship. Harry, aged 12, ran with the under 14s and not only managed to keep pace but finished with a medal! www.cfireland.ie

The First Lady It was all smiles from birthday girl Lianna Flanagan who turned 1 in June. Lianna celebrated at home with her mam, dad and big sister Ruby. 17

Hospital Hub: Spotlight Digital Health in CF Outpatient Care - virtually ideal! C Power, G Leen, G Connell, E Kilbride, O Ahmareen, P Greally & B Elnazir Respiratory Division, CHI @ Tallaght University Hospital, Dublin 24.

NA TIONAL C LINIC A L P R OG R AM M E FOR CY ST IC FIB R OS IS

CYSTIC FIBROSIS

A MODEL OF CARE FOR IRELAND

reland has the greatest prevalence of Cystic Fibrosis per capita in the world. 42% of the Irish CF population are under 18 years.

According to the national model of care (2019) for CF, 1,377 people with CF (PWCF) were seen in Irish hospitals in 2017 and 16.3% of these attended more than one hospital for their CF care. Regular interaction between patients and their specialist team is an essential part of care in a serious chronic health condition such as CF, however, the burden of this care for the patient is significant; the need for time off education and work, often travelling long distances to attend appointments as well as bearing the costs associated with such visits. Accessing health care has been particularly challenging to those living remotely. The national model of care for CF has acknowledged this burden and states:

“In areas with challenging geographical access, where outreach and virtual clinics could be of benefit, rollout of high-speed broadband to remote areas may facilitate more regular and useful staff / PWCF interactions. This would complement, not replace, the need for regular face to face meetings with the CF team. The development of home testing solutions might further add to this.” There is no better time to implement such solutions. We now live in a digital era. Almost 80% of Irish premises have access to high speed broadband and over 90% of Irish people have a smartphone. The widespread availability of personal technology offers patients and clinicians the opportunity to use real-time virtual communication platforms to enhance access to health care services. In recent months, the process of implementing telemedicine has been fast tracked at an enormous pace. The COVID-19 pandemic has led to a sudden explosion in the uptake of digital health tools across the world and has accelerated the adoption of telemedicine. When faced with the risk of contracting or spreading a highly contagious novel virus, it is apparent that in-person outpatient clinic appointments are impractical, and for many patients, concerning and potentially dangerous. Health services have reacted quickly, embracing digital health, to protect patients and to ease the pressure on services by reducing face to face consultations to only when necessary. In Ireland, virtual clinics are now commonplace, with patient consultations carried out via telephone or digital platforms with built in video and audio.

Spectrum / Winter 2020

In recent months, Tallaght University Hospital has introduced numerous new digital solutions to assist patient care. The Paediatric Cystic Fibrosis team are using a combination of telephone appointments, audiovisual platforms ‘Attend Anywhere’ and spirometry devices such as ‘Nuvoair’, M power and a limited number of face-to face appointments for patients requiring urgent review. We started with NUVOAIR, which is basically a portable spirometry lab which takes all the critical measurements needed for the CF team to understand your lung health. It is Battery-powered and talks by Bluetooth to any kind of phone or tablet that’s had a special app downloaded. In real-time, the CF team, can see how you are doing and adjust their medication or organise urgent face to face review if necessary. Supervised Physiotherapy sessions via video platforms have proved very helpful to many young PWCF. The National model of care for CF recommends 4 out-patient visits per year when medically stable and more often when a patient is unstable. Platforms such as ‘Nuvoair’, Mpower and ‘Attend anywhere’ allow us to carry out, in stable patients, some of these consultations virtually. Reducing the time, cost and travel burden associated with these appointments is advantageous for patients, while the specialist team can maintain continuity of care with regular appointments and keep close eye on our more unwell patients frequently with no increased risk of exposure to coronavirus.

Our experience with using these platforms has been extremely positive thus far. Patients feedback have indicated that they would rather have their FEV1 measured from the comfort of their home as some live a long way from the hospital. This is obviously coupled with the understandable worry about cross infection risk. Others have indicated that the portable spirometry gives them the confidence that they are doing well from a lung health point of view. The technology will undoubtedly become smarter and with the advent of machine learning and artificial intelligence, the hope is that we will be able to identify predictive signals for early detection of acute pulmonary exacerbations. We shall also be able to assess treatment response in PWCF and we hope that this technology will be offered to all our eligible patients in the near future.

www.cfireland.ie

Hospital Hub Updates from CF Centres Nationwide Coordinated by Liz Jacques, Regional Development Officer, CFI & TLC4CF

St Vincent’s University Hospital – Jo Doyle, Adult CF CNS We hope this message finds you well. We appreciate this continues to be a worrying time for all of our patients and their families. We have reopened our routine CF clinics in the outpatient department (Suite 3) with reduced face to face appointments. We also continue to have virtual clinics on Monday 12-2.30pm and Tuesday 3 -5pm. For patients that need to be reviewed in person, appointments will be arranged through the CF nurses for you to be seen in the CF dayward or at a CF clinic in Suite 3. If you are unwell or off your baseline and need to be reviewed please contact the CF nurses in advance of attending the hospital in order to arrange a designated time for review. At this stage you will be swabbed for Covid 19. People positive for Covid 19 will not be nursed on St. Christopher’s ward. If you think you need admission, please bring your belongings that you need for your stay in SVUH. We have started prescribing Kaftrio in SVUH. The CF nurse will contact patients who are eligible for Kaftrio, to inform them of their start date. Catherine O’ Grady has recently joined the CF team as Clinical Nurse Specialist (Part time) & Michelle Callaghan has joined our physiotherapy team. Thank you to the people who generously donated to the St Vincent’s Foundation, because of this we have been able to purchase large screen TV’s for St Christopher's Ward. The Mater - Susan Talbot Towell, CNS We received fantastic news for our lung transplant service with the announcement of funding for a dedicated Cystic Fibrosis consultant and dietician for our outpatient clinic. This support is welcomed, not to mention needed and we are very grateful to CFI and all involved who made this possible. It will add so much value to our service. We have managed to keep our lung transplant outpatient service going for the duration of the Covid period with a lot of input from our MDT. We have used CIT (Community Intervention Team) teams to facilitate treatments at home, port flushes and bloods tests to reduce visits to hospital. As the number of PWCF who can physically attend the clinic has been reduced we are encouraging self-monitoring at home. This helps us with our telephone/virtual clinics. This includes temperatures, weight, oxygen levels and blood pressure. We are ordering home spirometry equipment for our post-transplant group. Please contact the clinic if you have yet to receive one as they are ordered for each person’s individual HSE departments! Take care and stay safe and call us if any concerns.

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University Hospital Limerick – Caitiriona McGrath, Adult CF CNS The Cystic Fibrosis Team in UHL would like to take this opportunity to thank you for your co-operation during these difficult times of the COVID 19 pandemic. We would like to highlight some positives and a glimmer of hope to you in these times. The new drug Kaftrio will be rolled out in the coming weeks to months in a safe manner, to our patients who are eligible for this drug. We kindly ask for your patience during this rollout period. Please do not hesitate in contacting the CF Adult Clinical Nurse Specialist if you have any queries in relation to same. In addition, the telehealth strategy will also be phased to our patients in the coming months. This will allow us to complete our assessments with the equipment that you will be provided with, for the virtual online reviews. You will be informed and educated in relation to this process. We understand the significant restrictions on our regular service that has resulted in direct consequence from this pandemic. We would like to highlight as your Adult CF team, we are here for you Monday to Friday if you have any concerns or queries. Our reviews will continue as required, in addition to online reviews. Thank you to the whole of the adult Cystic Fibrosis population in our care along with their loved ones, who have been extremely understanding and demonstrated a huge amount of self-sacrifice in these challenging times. We your Cystic Fibrosis team would like to say thank you. Stay safe, from your Adult CF team UHL. University Hospital Limerick - Noelle Power, CNS The Paediatric CF team would like to wish all our families well at this time. Just to make you aware we are currently running our face to face clinics at present. We will call you normally the day before you come to the hospital to complete a COVID screening questionnaire. The CF CNS is available to answer calls in relation to your child, alternatively you could leave a brief message on the voicemail and we will return your call. Our recently renovated Children’s Ark Playground officially opened on the 6/11/2020. We know that many of you will make use of this fantastic resource during your say with us.

At a socially distanced opening ceremony, Lauren McGrath (15) from Askeaton, County Limerick, with her mum June (right) cut the ribbon on the refurbished Ark Park inclusive play area at the Children’s Ark paediatric unit in University Hospital Limerick. Photo credit: Brian Arthur Photography

Children’s University Hospital, Temple Street – Sharon Deignan, CNS I am happy to report all is good with the CF team here in Temple street. Almost all our patients returned to school in September and are enjoying being back with their friends and of course back learning! At our clinic we are running face-to-face clinics each week and measuring lung function at clinic (using all necessary precautions of course). Thankfully, due to a generous donation from Cystic Fibrosis Ireland we have been able to offer remote Pulmonary function testing to some children who are unable to attend clinic. This has been very reassuring for both patients and clinician. October has been a very busy and exciting time, particularly for our children who were not eligible for ORKAMBI. We are so happy to report all our children have been initiated on the new modulator therapy KAFTRIO (over 12years) and are tolerating it well. We look forward to this exciting journey together. www.cfireland.ie

Children's Hospital Ireland at Tallaght University Hospital – Geraldine Leen In the midst of these challenging times with the global COVID pandemic, the reimbursement by the HSE of Kaftrio / Kalydeco combination treatment for patients with CF over 12 years old (DF508/DF508 or, DF508 /minimal function mutations) has never come at a better time! Here in CHI @ TUH we have 23 patients eligible to initiate this CFTR modulator (16 patients transitioning from another modulator and 7 commencing a modulator for the first time). Patients are initiated in CHI @ TUH by the Clinical Nurse Specialist either as a day case or, using the digital platform Attend Anywhere. All patients are commenced on either Nuvoair, or patient Mpower remote monitoring systems – enabling home monitoring of spirometry, Oxygen saturations and weight. To date, 20% of our eligible patients have been commenced on this exciting therapy and feedback has been very positive. We look forward to the roll-out of this treatment in the younger age group, hopefully in the not too distant future.

Cartoon Visors - Helen Gibbons, CF Psychologist, Tallaght University Hospital Staff in healthcare settings are required to wear an increased amount of PPE in order to protect the patients and themselves. This is quite a change for regular patients to the hospital and might be a bit intimidating for them and also for new patients. This is particularly true in Paediatrics. Similar to other healthcare settings, many of the paediatric services in CHI at Tallaght saw a reduction in face to face appointments during the height of the COVID-19 pandemic. It has been heartening over recent months to see the increase in patient numbers. Children with Cystic Fibrosis are a cohort who visit the hospital regularly. In order that they might be less intimidated by the PPE now being worn, the CF Psychologist, Helen Gibbons, sourced a set of cartoon visors from a company in the UK. Jon Stynes Designs (based in Cumbria) are making these cartoon visors for the NHS, nursery and infant schools, as well as other childcare settings. Helen spoke with Jon (the owner of the company) who told her that this was his first enquiry from Ireland and kindly offered to donate a set of visors to the CF Team. We are very grateful for the donation as the cartoon visors have been a huge hit with the children and their families. The visors are a great icebreaker and have certainly detracted from the anxiety the children might have experienced. They are fun and make the children smile. They enjoy guessing what animal is being represented in the visor worn by each of the team. The visors have got many admiring glances and comments and you can see why! Pictured wearing the cartoon visors at a CF MDT Meeting are (LtoR); Prof Basil Elnazir, CF/Respiratory Consultant, Prof Peter Greally, CHI’s Chief Clinical Director, Ger Connell, CF CNS, Helen Gibbons, CF Psychologist Emma Kilbride, CF Respiratory Physiologist, Ger Leen, CF CNS, Dr. Catherine Breen, CF Registrar, Ruth Jennings, CF Medical Social Worker, Jessica O’Driscoll, CF Dietitian, Ciara Duffy, CF Physiotherapist. Photo credit: Tommy Walsh, Medical Photography.

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Activity Pages The gifts from the Twelve days of Christmas are hidden in the wordsearch can you find them and match them to their day? 1. Partridge in a pear tree

2. ________________

3. _________________

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6. _________________

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ROLL CALL This Riddle Me , but What falls s itself? never hurt

Can you name all of Santa's reindeer?

TURN THE PAGE FOR THE CFI CHRISTMAS CRACKER CROSSWORD! www.cfireland.ie

9 11 14

17 18 20 23

32 34 37 38

ACROSS

1) 9) 11) 13) 15) 16) 18) 20) 21) 24) 25) 27) 28) 29) 31) 32) 34) 35) 37) 38) 40)

The Handmade Soap Company supported the CF Community this year through the provision of (4,9) A Day for CF, but what do you need to wear on December 11th to join in (8,6) With 22 & 26 Down - we can all use some TLC, but what counties are they? (5) The most famous snowman of them all (6) Thank you Tony! Who? (7) How many roses to say cystic fibrosis? (5-4) What are you reading? (8) Listen to Joe - When it's raining, take an umbrella? (6) A Secret Santa by another name (4,6) Santa's little helpers (5) What's on the box on November 27th? (3,3,4) A ray of light that helped people with CF to exercise during lockdown (4) They light up the sky at night, but can also be found on top of the tree (4) This Whoville villain is not full of Christmas cheer (6) A colourful circle for your door at Christmas (6) Be on your best behaviour if you want to be on this list (4) Usually a pair, but at Christmas they are found by the fireplace! (9) Hat's off to them, at Christmas it always causes a bang (7) This European City of Culture for 2020 was always due to be the venue for the CFI Conference (6) The CFI staff continue to work remotely, but how many of them are there? (8) With no physical events this year, many of our fundraisers took place online, in other words they wentâ€Ś. (7)

41)

Oh Deer Iâ€™ve lost count! With Rudolph leading the way, how many are there? (4)

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7 8

10 12

19 21

27 30 31 33 35

DOWN 2) 3) 4) 5) 6) 7) 8) 10) 12) 14) 17) 19) 20) 22) 23) 26) 28) 30) 33) 36) 39)

Not the list you want to be on (7) 2020 was a leap year! A day for highlighting lesser known conditions, February 29th, is also known as (4,7,3) The star of Christmas Dinner, in Istanbul particularly (6) Warm up on a cold day with this beverage (3, 9) The original gifts were gold, frankincense and (5) Santa's workshop is based here (5,4) She likes to sing at Christmas, what is her name? (5) A tasty treat enjoyed at Christmas (5,3) The CF Community waited for news on Trikafta throughout the year, but has this changed? Not in America! (7) Stand under this and you are guaranteed a Christmas kiss (9) Christmas dessert (7) Today is a gift that's why it's called the (7) What does CFI have in common with Christmas Trees? CFI have 17, but trees has many more (7) With 11 Across & 26 Down â€“ The Middle county in TLC (8) Zig & Zag made a comeback this year, but aren't the most famous Z of 2020, that would take some meeting (4) With 11 Across & 22 Down â€“ The premier county in TLC (9) Santa's preferred mode of transport (6) The original Christmas story (8) CFI provide this support in several areas - Exercise, Fertility, Counselling & Transplant and this year there was one for PPE (5) A guardian, she often sits at the top of the tree (5) Twas the night before Christmas (3)

www.cfireland.ie

Buddy the Elf has lost his way. Can you help him through the maze to deliver the last present?

Which of Santa's reindeers has bad manners? RUDE-olph!

do What n eat snowme ? akfast e r b r o f ISPIES ICE KR

What do reindeer hang on their christmas tree? HORN-aments!

PUZZLE SOLUTIONS Summer 2020 Dingbat Corner 1) Forgive and Forget 2) One in a Million 3) Crossroads 4) Jack in a Box

Wordsearch A P S F I A G S A N D C A S T L E D H F P X C R T

N R O V E L U N K E A T H I D P L M S U N O A U S

K U B O T Y E D P J O I N G R A I A S T Y I T E I

S A L O L R B A R B E C U E Y N S C L O S L A P K

U D I N C I W S Q L S E B V E S U M Y D A N O S U

N S A S A Z G I N I M C X F U P I T Q J R O Z H M

G L E H R U K E N E A R I M I Y T A H A E C B O L

Spot the Difference L I P I C N I C H U B E D U S T C E O K H N A R E

A R O T M G E D P N H A G K W R A H L B N M U T Y

S U P K L C V N O S R M N T I N S U I W E N O S C

S A N B E A C H A C E Z I U M B E L D U A B N C N

E C R W F M J I X O Y S N A S I O N A C S F U E X

S P D O U P O R K F S U B D U N V Z Y Z Y E B O L

L A T C N I G A P I N H C L I M E N S I B H A P M

N M N R A N K L U D T A S I T A B U K E A I T I O

S U B P Q G E S R F L E D H U W O C R S P Z U N R

Word Ladder WASH CASH CASE CAVE HAVE HATE LATE LANE LAND SAND HAND

Spectrum / Winter 2020

Member Services The Member Services Team are available to speak to on any issues you may have. You can contact the Member Services Team on the details below or phone the office on 01 496 2433.

Samantha Byrne Member Services Senior Coordinator sbyrne@cfireland.ie 087 135 5228

Caroline Heffernan CF Advocate cheffernan@cfireland.ie 087 932 3933

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

It has come to the attention of the Member Services team that a number of members are unaware of the tax and social welfare benefits which may be available to them as the Carer or a person with a disability.

TAX Incapacitated child tax credit It may be possible to qualify for this tax credit at the rate of €3,300 per year. Please see details here www.revenue.ie/en/personal-tax-credits-reliefs-and-exemptions/children/incapacitated-child-credit/index.aspx Please note: If you are already availing of this tax credit, you will need to stop claiming as soon as your child reaches the age of 21 years. The credit can continue until the age of 22 if the young person is in full-time education. Failure to stop claiming this credit may result in tax needing to be repaid. Travel You may claim relief for the cost of transporting your child to and from hospital. You may also claim for transport to visit your child, if this is essential to the child’s treatment. You must have proof that these visits are necessary. Travel by private car relief Year 2019

Rate per mile €0.29

Rate per kilometre €0.18

You cannot claim relief for car parking fees. Telephone You can claim flat rate relief on telephone rental and call expenses if the child is being treated at home. Telephone expenses must be directly related to the child’s treatment to qualify for relief. Telephone expenses flat rate relief Year 2019 www.cfireland.ie

Rate €315

SOCIAL WELFARE SUPPORTS Domiciliary Care Allowance Domiciliary Care Allowance (DCA) is a monthly payment for a child aged under 16 with a severe disability, who requires ongoing care and attention, substantially over and above the care and attention usually required by a child of the same age. The current rate is €309.50 per month. Domiciliary Care Allowance is not means tested. Further information is available on www.citizensinformation.ie/en/social_welfare/social_welfare_payments/ disability_and_illness/domiciliary_care_allowance.html Carer’s Allowance Carer’s Allowance is a payment to people on low incomes who are looking after a person who needs support because of age, disability or illness (including mental illness). If you qualify for Carer’s Allowance you may also qualify for free household benefits (if you are living with the person you are caring for) and a Free Travel Pass. https://www.citizensinformation.ie/en/social_welfare/social_welfare_payments/carers/carers_allowance.html The current rate for Carer's Allowance is €219.00 The Department of Social Protection are currently undertaking a review of Carer’s Allowance Claims. If your financial circumstances have changed since you first claimed this allowance, you should review your eligibility and sign-off if you are no longer entitled to receive it. Disability Allowance (DA) Disability Allowance is a weekly allowance paid to people with a disability. You can get Disability Allowance from 16 years of age. If you are in education when you turn 16, you can continue to attend school. If you qualify for Disability Allowance you may also get extra social welfare benefits with your payment and other supplementary welfare payments. If you are in receipt of Disability Allowance you need to ask permission from the Department beforehand if you wish to take up part-time work (that is rehabilitative in nature). The onus is on the applicant to inform the Department if their income from work has increased since claiming DA. The Department of Social Protection are currently undertaking a review of Disability Allowance claims. If your financial circumstances have changed since you first claimed this allowance, you should review your eligibility and sign-off if you are no longer entitled to receive it. Carer’s Grant In June of each year (usually on the first Thursday of the month), the DSP pays the grant automatically to carers getting Carer’s Allowance, Carer’s Benefit, or Domiciliary Care Allowance from the Department. Only one Carer’s Support Grant can be paid for each person getting care. The rate from June 2021 was increased to €1,850 in Budget 2021. For any queries on the above, please contact the Member Services Team on the details listed on page 27 or call the office on 01 496 2433.

Spectrum / Winter 2020

CF Related Diabetes - Did you know?

ccording to CF Registry of Ireland, 30% of the Irish adult CF population (over 200 people with CF) also have CF related diabetes. Additionally, many people with CF may be pre-diabetic with varying levels of glucose intolerance.

One of the risks of diabetes is having a low blood sugar level. This is also known as hypoglycaemia, or commonly referred to as “having a low” or as "having a hypo”. If your blood sugar level falls below 4.0 mmol/L this is deemed to be a low blood sugar level. Part of the management of diabetes is learning to successfully manage hypoglycaemia whenever it happens, or to try to prevent future occurrences. However, for those on insulin treatment, a side effect of insulin therapy is a low blood sugar level if the dose of insulin is mis-matched with to the quantity of carbohydrate you have eaten. So, if you take too much insulin in other words, you will experience a low-blood sugar somewhere between 1-3 hours post insulin dose. Another reason you might experience a low is if you take your insulin too early or too late with your meal, if you skip a meal or if you have performed an intense exercise session without eating sufficiently afterwards. It is a very fine balancing act between insulin dose, activity level and food intake of carbohydrate and of course any sugar content in foods. Those with CF related diabetes know this only too well. An additional complicating factor is that your insulin dosage might need to change if you become unwell, for example with a chest infection. Your insulin sensitivity may also change over time. Anyone experiencing challenges maintaining their blood sugar control should discuss this with their specialist diabetes team. One critically important impact of diabetes is how it can affect your driving. It is dangerous to drive if your blood sugar is low. In fact, driving with a low blood sugar is viewed in legal terms on similar terms as driving under the influence of alcohol. If you were involved in a motoring accident caused by you having a low blood sugar event while you were driving, you could lose your driving licence. Low blood sugar can cause confusion, dizziness and lack of concentration. In a most severe hypoglycaemic event you could lose consciousness. If you feel low while driving pull over and stop as soon as it is safe to do so. Treat your low with a rapid-acting sugary snack or Glucagon pen if you have one. Do not drive for 45 minutes post treating your low. Useful Links The National Driving Licence Service (NDLS) have published a booklet on Driving with Diabetes: https://www.ndls.ie/images/Documents/Forms/Diabetes-and-Driving.pdf The more specific detail around the impact of driving with diabetes is summarised in a document online at https://www.diabetes.ascensia.ie/about-diabetes/driving-diabetes-and-the-law/ Additional information about diabetes can be found at Diabetes Ireland https://www.diabetes.ie/ www.cfireland.ie

Key points advised by NDLS for those driving with diabetes: You must notify NDLS that you have diabetes- it will be stated on your licence • You must notify your motor insurance company that you have diabetes • Keep personal ID with you at all times documenting your diabetes in case of accident • You should monitor your blood sugar routinely and before you set out to drive • If driving on a long journey, you should stop to check your blood sugar level at set breaks in the journeyrecommend every 2 hours • Always keep fast acting sugary snacks in your vehicle to treat a low should it happen • If your blood sugar is 4.0 mmol/L or less- Do Not Drive. Take a snack and do not drive until your blood sugar has returned to above 5.0 mmol/L. Wait at least 45 minutes post treating a low before you drive again. • “Do not drive below 5”: If your blood sugar is below 5.0 mmol/L – take a snack and wait 10 – 15 minutes until your blood sugar is above 5.0 mmol/L

Exercise Grant A total of €110,000 was spent by CFI on the exercise grant scheme in 2020. We all recognise the benefits of exercise to mental and physical health, particularly in these challenging times. Round One 2021 will open on Monday 25th January and applications will be accepted online through our website. The round will stay open until the funds are exhausted which we anticipate will be only a few days. Members will be able to upload receipts or quotes online and enter their bank details for payment. Each member can apply once per calendar year. We would urge members to apply as soon as possible, as once the round is closed, it will not be possible to accept further applications. Round 2 will open later in 2021. If you have any questions about the scheme closer to the time, please contact the member services team on 01 496 2433.

Spectrum / Winter 2020

RESEARCH 43rd European Cystic Fibrosis Conference Despite COVID-19 taking away our chances of enjoying some French wine and cheese at the 43rd European Cystic Fibrosis Conference which was due to take place in Lyon, the replacement digital conference, held on the 24th & 25th of September, was filled with messages of hope and optimism for the prospect of bright futures for PWCF. Over 3,700 participants from 72 countries took part in the digital conference. In many sessions, over 1000 participants joined simultaneously to watch the lively discussions and thought-provoking presentations. Please note that this report is based on our understanding of the research sessions attended, but is not of course a substitute for reading the original research. Prof. Ed McKone, Consultant Respiratory Physician, St Vincent’s University Hospital Dublin, outlined the evolving natural history of cystic fibrosis (CF), the clinical characteristics of CF at the different life phases and the treatment challenges that arise therein. There have been large improvements over the last 60 years in CF survival. Many of these improvements were being seen even before the advent of CFTR modulators. The improvements in survival and life expectancy have been attributed to antipseudomonal antibiotics, improved nutrition, the expertise of the multidisciplinary care teams and our ability to detect CF early and begin treatment. Prof. McKone noted that challenges still remain, including the decline in physical markers of health experienced by people with CF in adolescence and early adulthood. The transition from paediatric to adult care and greater selfmanagement of their condition is a critical time for people with CF. This period is characterised by a decline in lung function and nutritional status, increases in the detection of pseudomonas and MRSA bacteria, and is associated with increasing rates of depression and anxiety. As life-expectancy in CF increases, more adulthood complications of CF can be seen such as hearing loss, osteopenia, renal disease, haemoptysis/pneumothorax. Professor Barry Plant, UCC, gave a talk rethinking care for an ageing community. The typical health concerns associated with ageing also apply to people with CF: mental health, cardiovascular disease, gastrointestinal health and BMI. The Multidisciplinary care team must now also consider the multi-morbidities associated with ageing. Treatment Burden Dr Isabelle Durieu, Lyon, noted how historical improvements in CF care and in life expectancy for PWCF have come at the expense of an increasing treatment burden. Daily care for CF comprises airway clearance techniques, one or more nebulised therapies, nutritional treatments, sometimes daily insulin injections and when necessary antibiotic treatments for exacerbations. All of this is leading to a long time spent in care. The reduction of the treatment burden in CF is a patient priority area for trials, “there must be research on how to take things away”. Dr Gwyneth Davies, London, outlined the ongoing CF STORM trial which aims to see whether patients with CF, established on elexacaftor-tezacaftor-ivacaftor can stop nebulised muco-active drugs without a significant fall in respiratory function at 12 months. The PPI panel for the study, coordinated by the CF Trust, noted that patients would be willing to consider a small reduction in FEV1 % predicted in exchange for a reduced treatment burden. CFI will update you on the outcomes of this clinical trial as they are available. www.cfireland.ie

CFTR Modulator effects on the gastrointestinal system Dr Keith Chee Y Ooi, Randwick Australia, outlined a number of studies his team have undertaken examining the effects of modulator therapies on the gastrointestinal system. Ivacaftor has been shown to resolve some of the histopathological changes (changes in the tissue that can be seen using a microscope) in the gut caused by CF. CFTR modulation with Ivacaftor led to a reduction in Enterobacteriaceae (bad bugs) in the microbiome and an increase in the relative abundance of Akkermansia and Anaerostipes (good bugs which have anti-inflammatory and anti tumor effects). Enterobacteriaceae are associated with an inflamed gut, increasing the abundancy of good bugs changes the microbiome profile from an unhealthy inflamed profile to a more healthy profile. Dr Stephanie Van Biervliet, Belgium, looked at this further in her talk which examined whether probiotic (good bacteria) supplements can “reinforce the cavalry” in this regard. While a Cochrane review found probiotic supplementation had no effect on the number of exacerbations or the number of days of antibiotic use experienced by patients, a number of studies found it did result in a significant reduction in intestinal inflammation, as measured by a reduction in fecal calprotectin. What remains to be seen is what the clinical relevance of this decrease in fecal calprotectin may be. The exocrine pancreas in CF has traditionally been regarded as irreversibly damaged by the time patients develop Pancreatic Insufficiency. Research now suggests however, that there is plausibility of a window of opportunity to rescue and preserve the exocrine pancreas if CFTR modulation is commenced early enough. Dr Chee Ooi, Australia, discussed how the effect size for this may be age-related, with a greater average change in function (as measured by fecal elastase-1) noted among the under 2 year olds compared to the 2-5 year age group. This highlights further the benefits of starting modulator therapies as early as possible. Dr Chee Ooi and his team also asked the question whether CFTR modulators increased or decreased the risk of developing pancreatitis, their results suggest it’s possibly both. If a person is pancreatic insufficient they have no risk of pancreatitis. If you treat them with modulators and increase pancreatic function to become more pancreas sufficient you may actually increase the risk of pancreatitis. Conversely, if you have a patient who is pancreas sufficient with issues of pancreatitis or chronic pancreatitis, CFTR modulators can reduce the risk of any more episodes of pancreatitis. Dr Jay Freeman’s, US, research added further clarity to the talks of Dr Chee and Dr Remi Rhabasa Lhoret. Approximately 85% of people with CF will develop exocrine pancreatic insufficiency. Dr Freemans team questioned whether this could be reversible with the use of modulator therapies. The answer was a loud “Maybe”. The question remains, what is the effect of CFTR modulators on the endocrine pancreas, ie. CF-related diabetes. Real-world clinical studies “Real World” studies examine how drugs impact on a broad range of patients, many of whom would have been excluded from the initial clinical trials due to poor underlying health or the existence of comorbidities. The data can confirm trial findings and shed light on the overall impact of the drug on the day-to-day lives of people with CF and not just on a limited range of biomarkers or a specific cohort. Professor Paul McNally provided an overview of real-world Kaftrio/Trikafta studies including his own RECOVER project, co-led by Dr Jane Davies, which aims to investigate the real-world clinical outcomes with novel modulator therapy combinations in people with CF. The study will recruit 137 participants aged 12 and over and 100 children aged 5-11 years for a two-year open label study. The project is funded by the Cystic Fibrosis Foundation in the United States of America (€2.85m), the CF Trust (UK) (€112,000) and Cystic Fibrosis Ireland (€100,000). RECOVER is a multicentre cohort study which will take place in eight sites across Ireland and the UK over a three-year period. It will collect information on a range of health data and clinical end-points such as lung clearance index, Chest CT, gastrointestinal symptoms and inflammation, and medication adherence.

Spectrum / Winter 2020

COVID-19 and People with CF CFI encourage members to follow the public health advice, while exercising personal judgement. At the ECFS Conference, Dr Lutz Nährlich, Gießen Germany, provided an overview of COVID-19 in patients with Cystic Fibrosis in Europe. Using registry data from the Covid-CF project, Dr Nährlich outlined the epidemiology of infections during the pandemic up to the 18th of September. There were 138 PCR-confirmed cases among PWCF notified to the registry, sadly this included four deaths. This gave an incidence (number of new cases per unit of population) of 0.2 and a case fatality rate of 2.9%. The lower incidence may be reflective of efforts to protect PWCF from COVID-19 through “cocooning” and “shielding” strategies. Although the case fatality rate among PWCF is lower than initially feared, COVID-19 is not a benign disease in CFpatients. While 20% of PWCF were asymptomatic (had no symptoms of COVID-19), 80% had symptoms. The most commonly experienced symptoms include: Fever; Increased cough; Increased dyspnoea; Headaches/joint pain; Fatigue; Increased sputum production; Headache; Pulmonary exacerbation and acute rhinitis. 60% of PWCF who had symptoms of COVID required hospitalisation, and 16% of these needed care in ICU. A quarter of people who were in ICU died. There are some risk factors associated with more serious COVID-19 infection among PWCF. These include having had a transplant, being of older age, having diabetes or a very low FEV1. The pandemic has greatly accelerated teleconsultation and the options for patients who are self-monitoring. There remain however challenges, including funding for the necessary medical devices, quality of self-measurements (particularly for respiratory), secure transfer of data to a patients file and the psychological impact which can be felt for some patients (decreased interaction with healthcare staff and increased responsibility for the patient). Global Impact of COVID-19 in People with CF The Cystic Fibrosis Registry Global Harmonization Group published an additional report in the Journal of Cystic Fibrosis in November 2020. This paper detailed the global impact of SARS-CoV-2 in people with CF. Using data collected up to the 13th of June 2020 the report outlines details of 181 people with CF (32 posttransplant) from 19 countries who had been infected with SARS-CoV-2. A similar spectrum of outcomes to those found in the general population can be seen, 11 people were admitted to intensive care (7 post-transplant) and sadly 7 deaths (3 post-transplant). The study found that more severe clinical outcomes may be associated with having CFrelated diabetes, a lower lung function in the year before infection, older age or having received an organ transplant. Many people with CF have avoided infection with SARS-CoV-2. While outcomes in this paper are better than initially feared, the authors suggest this may be due to the relatively younger age of the CF population compared to other chronic conditions. SARS-CoV-2 is not a benign disease for all people with CF. COVID-CF project update CF patient registries throughout Europe have collected data about people with CF who become infected with SARSCoV-2, causing the illness COVID-19. The COVID-CF project provided an update on the 13th November 2020, please note the data is preliminary and subject to change. 38 countries were invited to contribute data. 20 countries reported 278 known cases, 18 countries reported 0 known COVID-19 cases among PWCF. Of the 278 reported cases, 197 were confirmed by PCR. Some summary information (where available) on the people who caught COVID-19 and the disease outcomes are provided on the next page. Further information and data available from www.ecfs.eu www.cfireland.ie

Age range (years) of PWCF who had Covid-19

Gender of PWCF who had Covid-19

FEMALE

COVID-19 Severity

Mild: Patients without pneumonia or cases of mild pneumonia

100 90

Severe: Patients who suffered from shortness of breath, respiratory frequency ≥30/ minute, blood oxygen saturation ≤93%, PaO2/FiO2 ratio <300, and or lung infiltrates >50% within 24-48 hours.

Number of PWCF

70 60 50 40 30 20 10 0

Mild

Unknown

Asymptomatic

Percent Predicted FEV1

Severe

Critical

Critical: Patients who suffered respiratory failure, septic shock, and/or multiple organ dysfunction or failure

COVID-19 Outcomes

160

140

120

Number of patients

Number of PWCF

MALE

100

40 10

>70%

41-70%

≤40%

Unknown

Recovered

Illness ongoing

Unknown

Died

Spectrum / Winter 2020

RESEARCH UPDATE Cystic Fibrosis Ireland caught up with Ms Nicola Hurley, final year PhD student in DCU to hear an update about her most recent research publication. What is the Title of your Research? Recommendations to Improve Physical Activity Prescription for the Cystic Fibrosis Population: An Irish Perspective Who are your co-authors? Nicola Hurley, Bróna Kehoe (my Supervisor), Noel McCaffrey (Director of ExWell Chronic Illness Rehabilitation), Karen Redmond (Cardiothoracic Surgeon and supervisor), Lydia Cullen (Senior CF Physio), Niall Moyna (DCU Professor and Supervisor). What were your research questions for this paper? We hoped to answer the following: • What level of education do CF healthcare professionals receive at undergraduate and postgraduate levels, with respect to physical activity prescription for CF populations? • What level of knowledge do CF healthcare professionals have, with respect to the current consensus guidelines (ECFS) and physical activity prescription for CF populations? • Are CF healthcare professionals actively prescribing physical activity to their CF patients? How frequently? Are they employing the current consensus guidelines? Is advice written, verbal or a combination of both? • What barriers challenge or prevent CF healthcare professionals from prescribing physical activity to their CF patients? How is this question important to PWCF? It is important as we know physical activity is deemed as central to the management of CF, as a result of the incredible associated benefits (improvements in exercise tolerance, aerobic capacity, muscle strength, bone density, sputum expectoration, decreased hospital admissions, pulmonary exacerbations and a slower rate of decline in pulmonary function). Patient outcomes can improve dramatically with appropriate and evidence-based physical activity prescription and promotion. What did you do? I conducted a 30-item online survey (SurveyMonkey) among 48 CF healthcare professionals from 6 CF centres across Ireland, to identify i) the level of education received at both undergraduate and post-graduate levels, with respect to physical activity prescription and promotion, ii) the level of knowledge among CF healthcare professionals with respect to the current consensus guidelines (as published by the ECFS), iii) to evaluate to what extent physical activity was being actively prescribed and promoted by CF healthcare professionals, and iv) what barriers prevented or challenged the healthcare professionals from prescribing physical activity to their patients – from this we were able to develop a list of recommendations to be employed to improve physical activity prescription by the healthcare professional, to improve outcomes in PWCF. www.cfireland.ie

What did you find? We found that education regarding physical activity prescription and promotion was barely visible at undergraduate level, with only ~12% of respondents receiving this education at undergraduate level. Subsequently, ~75% of the healthcare professionals sought to improve their knowledge within this domain post-graduation, yet the sources for achieving this education were widely varied, inconsistent and typically informal in nature (conference attendance, workshops, informal discussion, in-service study days, etc.). There was unanimous consensus among all healthcare professionals that the physiotherapist should be the lead when it comes to physical activity prescription, however ~86% of healthcare professionals agreed or strongly agreed that recommending (or promoting) physical activity was part of their professional role. With respect to physical activity prescription, almost all physiotherapists reported discussing physical activity at every patient interaction, with more than Âž using a combination of written and verbal advice, predominantly based on the current consensus guidelines. However, other healthcare professionals (remaining members of the multi-disciplinary team; clinical nurse specialists, psychologists, consultants, registrars, dieticians, etc.) used verbal communication only, and rarely employed the guidelines (lacking relevant education and confidence). The three major barriers preventing or challenging CF healthcare professionals from prescribing physical activity to their patients were: i) lack of compliance among patients to adhere to physical activity advice, ii) lack of motivation for physical activity among patients, iii) lack of physical activity programmes to refer their patients to. What do your results mean? There is scope to develop strands of education for undergraduate, post-graduate and continuing professional development streams, to enhance the knowledge of the CF healthcare professionals of today and tomorrow with respect to physical activity prescription and promotion (ultimately improving patient outcomes, as we know regular participation in physical activity has the potential to improve exercise tolerance [hallmark of CF disease], aerobic capacity, muscle strength and quality of life, while slowing the annual rate of decline in pulmonary function). Our findings highlight the need for the development of physical activity programmes for healthcare professionals to refer their patients to, and the development of referral pathways between healthcare professionals and exercise scientists to facilitate the delivery of such programmes. Should we be cautious with your research findings? Firstly, it is important to acknowledge the possible presence of sampling bias. Opportunistic sampling may have resulted in a sample of healthcare professionals who recognise the therapeutic impact of physical activity, overlooking the opinions of those who are not interested in using physical activity as a therapeutic modality for CF populations. There was also an over-representation of physiotherapists within the current study as a result of the survey invitation being sent to the National Physiotherapy CF Clinical Interest Group and not to other professional clinical interest groups. Also, as the nature of the data is self-reported, there is a risk that social desirability bias (where people report what they believe is right as opposed to what they actually practise day to day) may have occurred making the results more desirable and portraying a less realistic representation of current knowledge and practice. Has your research brought any improvements for PWCF? Too early to say yet!

Spectrum / Winter 2020

What are the next steps? A subsequent study has been conducted, analysed and written for publication – to assess the factors that influence participation in physical activity among individuals with CF in Ireland. This study is a follow-on study, whereby we investigated motives and barriers, along with exercise preferences from the patients perspective. This informed served as PPI in the design of our exercise intervention, combined with the results from the healthcare professional study. We are passionate about placing the patient at the heart of our research. How did you find working in the field of CF research in Ireland? Fantastic. The healthcare professionals working in CF care are wonderful, responded very timely and offered their assistance very readily. I am very grateful for their participation and would like to thank all of the healthcare professionals for their time in participating in this very novel and necessary piece of research! What were the main challenges? The main challenges were predominantly around GDPR regulations (not being able to contact certain healthcare professionals directly – however, we were able to overcome this barrier by contacting one “champion” from each CF centre who was then responsible for the dissemination of our plain language statement, and online survey link (which contained an in-built confirmation of informed consent) How has this project changed your perspective? This project has proven the need to improve education for CF healthcare professionals at both undergraduate and postgraduate level, and so too at the professional level – this is becoming increasingly important, primarily as the CF population now begins to age more than ever before as a direct result of the incredible improvements in CFTR modulator therapies. We know physical activity and exercise have the potential to decrease all-cause mortality by 30%, and rates of certain cancers by ~40%, depression by ~30% and dementia by ~30%. It is imperative that our healthcare professionals are educated, upskilled and possess the confidence to appropriately describe evidence-based physical activity to their CF patients. Also, the development of physical activity programmes tailored to the CF patient is of paramount importance to bring the education and prescription alive, for the patients to realise the benefits of this evidence-based literature, and ultimately improve patient outcomes and longevity. What does the future hold for you? Taking the future one step at a time. I’m currently focusing on finishing my PhD and hope to submit in the New Year. I look forward to updating you on my subsequent research studies once they are published.

CFI would like to thank Nicola Hurley for taking the time to share this update with us and we wish her the very best of luck with her PhD write up.

www.cfireland.ie

My Legacy Month November 1 st - 30 th 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. 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 across 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 your favourite cause such as Cystic Fibrosis Ireland. Large or small, every legacy is an extremely 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.

Spectrum / Winter 2020

It won't cost anything in your lifetime, but through your generosity, your legacy will live on to support future generations. Many people can afford to give far more in their Will than they ever could when they are alive. Your support will help us to make long-term plans in support of Cystic Fibrosis care throughout Ireland. By leaving a legacy gift to Cystic Fibrosis Ireland you help us to; • Fund pioneering research, so that one day CF can stand for ‘Cure Found’ • 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 • Provide advice, information and advocacy services to help people with Cystic Fibrosis For more information on leaving a legacy 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 Aisling on 01 496 2433/ atierney@cfireland.ie for more information.

www.cfireland.ie

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 December 11th: Christmas Jumper Day 4 CF On Friday 11th December, we are encouraging as many workplaces as possible nationwide to support Christmas Jumper Day 4 CF virtually this year! 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 11th 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. Register your interest to participate at cfireland.ie and we will contact you and 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 your company if they are willing to match fund the monies raised! 5. On the day, make sure to get everyone on zoom and take loads of photos!

Post them to our Facebook page (facebook.com/CysticFibrosisIreland), share them using the hashtag on Twitter or Instagram #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.

Spectrum / Winter 2020

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 companies name as a reference so we know who it’s from) Don’t forget register your interest to take part in Christmas Jumper Day 4 CF at cfireland.ie and we will help you organise everything for your Christmas Jumper Day 4 CF! December: Christmas Cards Stay in touch this Christmas season with a Cystic Fibrosis Ireland Christmas Card! Our Guaranteed Irish Christmas Cards are available online at cfireland.ie for just €6.99 per pack of 8 cards! FREE POST is available to and from Nursing & Care Homes so there’s no stamp required if your loved one is in a Nursing Home. Best of all, the proceeds raised allow us to continue to provide much needed support and services to people with Cystic Fibrosis all across Ireland. April 9th, 2021: 65 Roses Day – ‘Do it your way’! 65 Roses Day will take place on Friday 9th April, 2021. We are looking for your support to help raise funds and increase awareness of Cystic Fibrosis across the country. There are 2 key ways you can support us on 65 Roses Day 1) Online Donations Unfortunately Cystic Fibrosis Ireland cannot proceed with our 65 Roses Day collections on Friday 9th April due to COVID-19. This is our National Fundraising Day which is targeted to raise €300,000 to help fund essential supports and services needed now more than ever by people with Cystic Fibrosis to help them through the pandemic. Cystic Fibrosis Ireland have put a range of new services in place during 2020 to help people with Cystic Fibrosis at this time including additional online supports for Exercise and Counselling, additional grant support including a PPE Grant and ongoing support and advice via our Services Team. To help us to continue with these supports and our existing supports and services in 2021, we would ask that you please support Cystic Fibrosis Ireland on 65 Roses Day, Friday 9th April by donating online at 65rosesday.ie or taking part in a 65 Roses Challenge Pictured right is our 65 Roses Day Ambassador ‘Chef Adrian’ delivering the Roses for 65 Roses Day this year with our PWCF 65 Roses Day Ambassador – Aoife Rafter www.cfireland.ie

2) 65 Roses Challenge You can also undertake a 65 Roses Challenge to support people with Cystic Fibrosis on 65 Roses Day. This gives you the opportunity to ‘Do it your way’ by undertaking any challenge that has a 65 theme. This can be anything from a 6.5k Walk / Run, to a 65k cycle or 65 exercises in the Gym. The challenge can be as simple or as challenging as you wish, so get your thinking caps on and do it your way. For more ideas, check out our 65 Roses Challenge section on our website cfireland.ie. It can be any kind of challenge you wish. This includes our 65 Roses Team Challenge as per details on our website where we are encouraging Teams to complete a challenge in their Colours and of course wearing our Purple Rose. Our Team Challenges will be in memory of Kevin Driscoll (PWCF) who organised a 65 Roses Challenge with the Bishopstown GAA Club in April which raised €24,000. Kevin, pictured right, was the recipient of a double lung transplant and sadly passed away in October 2020, may he rest in peace. We would like to remember Kevin as everyone completes their Team Challenges for 65 Roses Day next year. You can also undertake a 65,000 step challenge. This is just 9,285 steps per day if you complete the challenge over a week. Alternatively for anyone training for a Marathon, 65,000 steps is the equivalent of 26 miles so while you may not be able to take part in your favoured event for 2021, why not complete your Marathon for people with Cystic Fibrosis as a 65 Roses Challenge. Create your fundraising page, track your steps and let everyone know when you have completed your 65,000 steps for people with Cystic Fibrosis. Finally in memory of everyone lost to Cystic Fibrosis we are inviting anyone that wishes to set up a 6.5k Remembrance Walk as a 65 Roses Challenge, again with details on our website. This will include the option to add a photo of your loved one who has passed away to the 6.5k Remembrance Wall. Whatever 65 Roses Challenge you take, do it your way for people with Cystic Fibrosis. For further details please visit our website cfireland.ie or contact Brendán at brendan@cfireland.ie

April 25th, 2021: Duleek Virtual 10k Due to COVID-19 we will be running this event as a virtual event again next year in collaboration with Ann Noone and all the team at the Duleek 10k with the event taking place for its 9th year in succession. Cystic Fibrosis Ireland will send out the packs to your address including your race t- shirt once you register for the Duleek Virtual 10k. This Duleek 10k is aimed at people of all fitness levels so you can walk or run your 10k in your venue of choice and in your own time. The event was set up to remember and celebrate the lives of cousins Cathy O’Brien and Kelley Noone and all friends and families touched by Cystic Fibrosis. The event also aims to continue to increase public awareness about Cystic Fibrosis and to raise funds for Cystic Fibrosis Ireland. Over the past 8 years the Duleek 10k has raised more than €163,965 to help support people with CF in Ireland. For further details please visit our website cfireland.ie or contact Brendán at brendan@cfireland.ie

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May 6th to 9th, 2021: Malin2Mizen Cycle4CF Our annual Malin2Mizen Cycle4CF will be taking place on Thursday 6th to Sunday 9th of May 2021. We would like to thank everyone who has signed up and fundraised to date! Malin2Mizen Cycle4CF 2021 will begin at Malin Head in Co. Donegal and will finish in Mizen Head in Co. Cork. The event requires plenty of training as we will be covering an incredible 640km in 4 days! If you are interested in our upcoming cycle or if you would like to register your interest for 2022, please contact us on 01 496 2433 or email fundraising@cfireland.ie All participants must provide a deposit of €250 to secure their place and are asked to raise €2,000 in total. This will cover your food, accommodation and insurance for the 4 days of the cycle. All funds raised will go to Cystic Fibrosis Ireland to help us continue to support people living with Cystic Fibrosis. Places are limited with registration closing on January 31st so please register NOW at cfireland.ie to ensure you secure your place in this life changing event!

June 6th, 2021: One in 1000 / VHI Women’s Mini Marathon We are calling on all our past participants and new supporters to take part in the VHI Women’s Mini Marathon for Cystic Fibrosis Ireland on Sunday 6th June 2021. Join us on the June bank holiday weekend for One in 1,000! This year we have had to postpone and cancel a lot of our events but we are delighted to say the VHI Women’s Mini Marathon will be running as a physical and/or virtual event again in June 2021. Cystic Fibrosis Ireland have been working closely with the VHIWMM who are working hard to ensure the event will go ahead as a physical event in 2021. Any changes and updates around this event will be available on our social media and website at cfireland.ie. Why not get your friends, family or colleagues together for this amazing 10k challenge? You can walk or run the mini marathon while supporting people with Cystic Fibrosis. If the restrictions at the time allow us to, we will have a base provided at the D2 Harcourt Hotel - food and entertainment provided, as well as a venue to relax in before and after the event, leave your stuff and meet your friends. Keep an eye on our website cfireland.ie and our social media channels for announcement of sign up details for One in 1,000 – 2021. For any queries, please contact fundraising@cfireland.ie www.cfireland.ie

September 5th, 2021: Head2Head Walk We had a very successful Head2Head Virtual Walk this year with amazing support from walkers across Ireland and Overseas (including our soldiers from the 116 Irish Polish Battalion in Lebanon). We look forward to returning to our annual Head2Head Walk on Sunday 5th September next year. The walk as always will start in Howth on Sunday morning making its way to Sandymount for lunch and on to Bray by late afternoon. Full details of the walk will be available on our Website, Social Media and in the next edition of Spectrum. September 10th to 16th, 2021: Paris2Nice Cycle Paris2Nice is a non-competitive 6-day cycle starting off in the beautiful city of Paris and finishing on the iconic Promenade des Anglais in Nice. The 700km charity cycle takes place in September every year. Thank you to everyone taking part in Paris2Nice 2021 in aid of Cystic Fibrosis Ireland. As of now there are no additional places available for the event. If you are interested in taking part, please let us know and we will pass on your interest to the organisers who can add you to the waiting list should a place become available! If you are interested in this event, please check our website for more details at cfireland.ie, contact us on 01 496 2433 or email fundraising@cfireland.ie. Or if you already have a place secured for Paris2Nice 2021 and would like to choose Cystic Fibrosis Ireland as the charity you wish to support, please contact us on the number above. Thank you! September 25th to October 2nd, 2021: Paddy Kierans’ Memorial Walk The CFI Walk Committee are delighted to announce that the 2021 Cystic Fibrosis Ireland International Walk will be visiting ‘Beautiful Bulgaria’ 2021 marks the 27th year of Cystic Fibrosis Ireland’s International Walk and promises to be another unforgettable experience for all walkers. The Walk, which starts in Burgas and finishes in Sofia, will see participants walking an average of 10km each day, taking in sights such as the old town of Nessebar Beach with ruins of Byzantine era fortifications and baths, the fairy-tale style Ravadinovo Castle and its stunning landscaped gardens, the medieval Asen’s Fortress and Bachkovo Monastery, and the impressive structure of the Roman Amphitheatre in Plovdiv. Does this sound good to you? Why not dust off those walking shoes and join the fun! See the world and make friends for life, all the while raising much needed funds for people living with CF in Ireland. Contact Brendan at brendan@cfireland.ie / 01 496 2433 to receive more information as we would love you to join us in Bulgaria in September!

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October 3rd, 2021: Virgin Money London Marathon The London Marathon is hugely popular and is one of the worldâ€™s greatest participatory events. For anyone who takes part it is always an unforgettable experience. The marathon will take place on Sunday 3rd October 2021. Places for this event are currently full. If you are interested in taking part in 2021 or 2022, please get in touch and we will contact the organisers and let you know if places become available. Thank you to everyone who has signed up for this event to date. Full details are available on our website cfireland.ie or contact fundraising@cfireland.ie

November 7th, 2021: TCS New York City Marathon

All Year: Kilimanjaro

The TCS New York City Marathon takes place on Sunday 7th November and runs through all 5 city boroughs (Staten Island, Brooklyn, Queens, The Bronx and Manhattan).

For the really adventurous looking for the challenge of a lifetime, trips are available across the year to climb Kilimanjaro.

If you are considering taking part in the TCS New York City Marathon, please contact fundraising@cfireland.ie and we can provide you with more information and try to secure you a place.

For anyone interested please visit our website www. cfireland.ie or contact fundraising@cfireland.ie for more information.

A NEW FACE IN FUNDRAISING We are delighted to welcome Aisling Tierney to the fundraising team. Ash joined Cystic Fibrosis Ireland in Autumn 2020 as our Digital Marketing Co-ordinator. After finishing a Masters of Advertising in DIT, Ash moved to Toronto in the Summer of 2018. In Toronto, they worked with multiple charities including the Canadian Cancer Society, and Cystic Fibrosis Canada! Ash also loves camping & the outdoors, and has been a member of Scouting Ireland for almost 20 years.â€?

www.cfireland.ie

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: Woodie’s Heroes Campaign Cystic Fibrosis Ireland would like to say a HUGE thank you to all the Staff and Customers in Woodie’s who presented us with a cheque virtually for €103,892 from their Woodie’s Heroes Campaign. Despite all the restrictions, this amazing campaign exceeded all fundraising targets to raise a phenomenal €415,567 which was split evenly between the four charities involved – Cystic Fibrosis Ireland, Down Syndrome Ireland, Autism Assistance Dogs Ireland and ISPCC Childline. These are challenging times for charities as demands for our supports and services have increased and fundraising is curtailed due to COVID-19 restrictions. The news from Woodie’s was a huge lift for everyone at Cystic Fibrosis Ireland as this money will help us continue to support people with Cystic Fibrosis in Ireland through these tough times. We would like to also say a big thank you to our CF Ambassador for this campaign Kiera Lynam and her Mum – Louise. They put forward their story as a family living with CF during these challenging times and Kiera provided lovely photos to help promote the campaign. As per so many Cystic Fibrosis Ireland fundraising campaigns, these wonderful stories from the CF community and pictures helped Woodie’s succeed in exceeding all their fundraising targets, matched of course by the fantastic work of their staff fundraising and generosity of their customers donating. Thank you again to everyone at Woodie’s from everyone at Cystic Fibrosis Ireland!

Be a Hero 2020

Pay

From

It feels good.

Cystic Fibrosis Ireland

Woodie’s

Proudly fundraising for

Date: October 2020

€

€103,892 Spectrum / Winter 2020

Travelling Swimburys Cystic Fibrosis Ireland would like to say a HUGE thank you to the Travelling Swimburys, who are took part in a 446km Malin2Mizen virtual swim all through the month of July in aid of CFI, Pieta House, The Gavin Glynn Foundation, and Wicklow Cancer Support. Thirteen participants swam 1.19km per day over the 30 days in July to bring hit the 446km target, swimming out of Wicklow Harbour. They raised an amazing total of €8,375 to help people with Cystic Fibrosis.

Virtual Head2Head Walk Thank you to everyone who took part in the Virtual Head to Head walk and fundraised for Cystic Fibrosis Ireland. A special mention to all our soldiers from the 116 Irish Polish Battalion in Lebanon who got up at the crack of dawn for their 42km walk! To date over €35,000 has been raised from the Virtual Head2Head Walk 2020! Skydive – Danny Burns A massive thank you to Danny Burns who completed a Skydive in aid of Cystic Fibrosis Ireland and raised €1400. If you are interested in organising a Skydive to raise funds and help support people with Cystic Fibrosis, contact brendan@cfireland.ie for more information

Regular Supporters Thank you to all our supporters who are signed up for a monthly donation! Whether it’s €5 a month or €100 a month, every donation goes a long way towards helping people with Cystic Fibrosis in Ireland as regular monthly income helps us to plan for our support and services over the coming months. If you are interested in giving a monthly donation or a once off donation, all you have to do is open our website at cfireland.ie and click donate! You can also call us on 01 496 2433. All donations are very much appreciated and help to make a difference for people with Cystic Fibrosis Ireland.

€12.00 Monthly could help fund a transplant assessment grant for a PWCF. www.cfireland.ie

€25.00 Monthly could help fund an Exercise Grant.

€50.00 Monthly could help towards the funding of a Fertility Grant.

Virtual One in 1000 / Vhi Women’s Mini Marathon Cystic Fibrosis Ireland would like to say a HUGE thank you to each and every one of our participants who took part in the Virtual One in 1,000! A massive congratulations to everyone who ran or walked their 10km and fundraised for CFI. Over €50,000 has been raised to date. A special thank you to Zoe Woodward and her family who helped promote this 10th year of our One in 1000 campaign having originally set up the campaign in 2010.

Virtual KBC Dublin Marathon

Max’s Half Marathon

Thank you to everyone who supported Cystic Fibrosis Ireland over the October Bank Holiday Weekend by taking part in the Virtual Dublin City Marathon!

CFI would like to say a huge thank you to Max Rauniomaki O Bairead who completed a half marathon in aid of Cystic Fibrosis Ireland on 14th June. A neighbour of Max has Cystic Fibrosis and it was a good feeling for Max to know that he might be able make a little difference for people with Cystic Fibrosis. It also gave him a great sense of achievement and gave another reason for his parents to be proud of him.

While we realise it was not the same as participating in the actual event, we really appreciate everyone who made the effort and completed the Marathon at their own venue and fundraised for Cystic Fibrosis Ireland

In total Max raised €2190.

Charity Benefit Livestream Clontarf Cycling Club Annual Raffle Thank you to everyone who purchased tickets in this year’s Cystic Fibrosis Ireland Annual Raffle and congratulations to all our winners! A total of €7,382 was raised from the raffle thanks to all our wonderful supporters and our generous sponsors of all the amazing prizes.

A massive thank you to Clontarf Cycling Club who held a charity cycle “Where in the World Charity Spin - The County Boundary 200”. They had a choice of three challenging cycles covering the boundaries of County Dublin over a weekend. They raised €12,243 for Cystic Fibrosis Ireland and the St. Francis Hospice.

Cystic Fibrosis Ireland would like to say a huge thank you to Luke Glenn from Quiz Gaming, North Carolina and Evan O’Gorman (PWCF) who held a gaming livestream in aid of CFI. They raised €1045. Luke met Evan while gaming and once Evan shared his story about his battle with CF and how Cystic Fibrosis Ireland helped him, Luke was determined to help.

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Dublin Plein Air Festival Cystic Fibrosis Ireland would like to say a huge thank you to Paul Darcy and everyone at the Dublin Plein Air Festival who raised €1550 during their painting festival day. Pictured above are CEO Philip Watt (CFI) and Paul Darcy (Dublin Plein Air Festival)

Cillies Athletic Club A huge thank you to the Cillies Athletic Club who recently raised an amazing €3,270 from their Bettystown B5 virtual run which they split between Cystic Fibrosis Ireland and the Irish Hospice Foundation. Thank you in particular to Tony O’Brien (Club Secretary) and Orla Turner (Club Chairperson) for their work organising the event. Pictured above is Orla Turner presenting the cheque for €1,635 to Fergal Smyth, Fundraising Manager, CFI.

Priority Construction A massive thank you to all at Priority Construction for taking part in their own September Step Challenge in aid of Cystic Fibrosis Ireland! Everyone was asked to walk a minimum of 10,000 steps per day throughout September - which added up to a whopping 240KM each! Their Step Challenge raised an amazing €2,830!

Arlene Brennan & Friends Thank you to Arlene Brennan and Friends for raising an amazing €7,100 for Cystic Fibrosis Ireland! “Myself and my group of friends decided to take part in 1 in 1000 as we understand how much fundraising can benefit such a great cause. We all have someone close to us that has Cystic Fibrosis so we decided we would dust off the running boots and raise some money for Cystic Fibrosis Ireland. An hour and sometime later, red faced and panting, we did it including a person who battles CF daily. We did this for her” - Arlene Brennan. Woodbrook Golf Club Cystic Fibrosis Ireland would like to say thank you to Woodbrook Golf Club who have raised over €14,000 to support the One in 1000 campaign through their Captain Ruth’s Charity Day. Pictured left are Captain Ruth Farrell and Vice Captain Gillian Redmond on the day of the fundraiser.

www.cfireland.ie

Stay in touch this Christmas with a Cystic Fibrosis Ireland Christmas Card! Choose from 15 designs and 3 variety packs for just â‚Ź6.99 per pack. FREEPOST available to and from Nursing Homes and Care Homes!

Buy online now @ www.cfireland.ie

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

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

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Spectrum Winter 2020