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SPECTRUM Spring 2022

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CONTENTS Latest News | 1 - 2 * The Crisis In Ukraine * Death of Tony O'Toole

Member Services|3-5 * Travel and CF

Spotlight | 6-14 Finding Your Feet

CEO’s Message Welcome to the Spring and 65 Roses edition of Spectrum which includes a focus on the crisis in Ukraine and the impact on people with CF. CFI is working with our colleagues across Europe on this issue and are providing as much support Philip Watt as we can, including an immediate Chief Executive donation from CFI. We will also donate € 1 for every € 10 raised during our 65 Roses campaign. We will update you on how you can help through our social media channels and website.

* Eleanor McAree * Hannah, John and Florence Campbell

Kid Heroes| 15-16 * Harry Cahill * Roisin Mehigan

Hospital Hub | 17-22 * A Win for CF Team at CHI at Tallaght

Our CFI virtual conference takes place on the evenings of the 30th and 31st March. We are delighted to have speakers such as Barry Plant, Patrick Harrison and Paul McNally with us, as well as a number of speakers from the CF community. 65 Roses Day, our annual fundraiser, is back in-person this year again and we are looking forward to getting out into the community and seeing many of you as we fundraise. We are looking for people with CF to undertake possible media interviews – if you are interested please contact Nicola - ndelaneyfoxe@ cfireland.ie.

* Mater Hospital Transplant Clinic * A New Website for Cork Centre for CF * Exploring Diet Quality in CF

Research| 23-25 * RECOVER Update * Invitation to PPI Panel

Fundraising| 26-33 * 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.

Most COVID-19 restrictions have been lifted however we would urge people with CF especially those who are pre- or post-transplant to continue to take additional precautions, for example, consider upgrading your face-mask protection if you have not already done so. We remain uneasy about the lifting of most restrictions when numbers reporting COVID-19 are still so high. We have conveyed this recently on RTE’s Morning Ireland. CFI is undertaking a survey of our members to seek to ensure that our services remain relevant and as efficient as possible. We would be grateful if our members and their families would complete this survey online when it is published. As always a jam-packed Spectrum and many thanks to Nicola, our new Public Awareness and Social Media Officer and new editor of Spectrum.

COVER: Rosanna Davison, Fiadh Ní Luing & Caoimhe Ní Luing at the 65 Roses Day Launch

Philip Watt, CEO CFI

Spectrum / Spring 2022

LATEST NEWS The Crisis in Ukraine and people with CF The situation in the Ukraine for people with Cystic Fibrosis and other chronic medical conditions is already dire for many and deteriorating rapidly for others. Most people in eastern, southern and northern Ukraine, where the Russian army has invaded, are living in bomb-shelters, often without adequate supplies of food and water and with no basic medical supplies including for those with CF. On Tuesday 2nd of March the CEO of CFI Philip Watt took part in a zoom call with the Ukraine CF Association and representatives from CF associations in bordering countries such as Poland, Slovakia, Hungary and Romania. The call was coordinated by Cystic Fibrosis Europe. There are about 900 registered people with CF in Ukraine, but this is likely to be a significant under-estimation of the true picture. The Ukraine CF Association reported in the zoom call that their most urgent medical needs are access to basic CF medications such as Creon, anti-biotics and hypertonic saline. This should not be interpreted as request for individual patients to donate their precious medications, but rather a request for coordinated and strategic response involving patient groups across Europe. There are 5 categories of people in Ukraine with CF who need help: •

Those who are living in the warzones in north, east and southern Ukraine who are under direct attack and who are living in bomb-shelters often without electricity and basic supplies

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Those who are living in central and western Ukraine where health and other basic services are deteriorating rapidly and who are living in fear of further Russian army incursions

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Those who are fleeing the conflict as displaced persons and are seeking to cross borders (a process that often takes 3-4 days) in a period of very cold weather

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Those that have already crossed borders and are seeking help in neighbouring countries such as Poland, Slovakia, Hungary and Romania. These border countries have granted free access to their respective health systems for those displaced from Ukraine, but will likely to have mixed existing standards of support for people with CF and may also need support. Image credit: Сергей Матвейчук

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Those that will be seeking refuge in other EU countries, including Ireland.

We propose the following ways in which we can help: 1. To coordinate with other CF associations across Europe and in particularly in Ukraine and on the Ukrainian borders to help our fellow people with CF 2. To make an immediate and direct donation of € 10,000 from our reserves for emergency relief 3. Pledge € 1 from every € 10 raised during the 65 Roses appeal 4. To urge the Pharma companies such as Viatris (Creon and anti-biotics) to contribute to support those in Ukraine with CF 5. To approach the Department of Foreign Affairs, Irish aid and other bodies in Ireland for immediate support 6. To establish a fund to support those in Ukraine with CF in conjunction with other CF associations 7. To help support those with CF from Ukraine who come to Ireland as best we can We will keep you updated as to how our members and supporters may be able to help in this strategic response to support those with CF in Ukraine. Philip Watt CEO CFI

Death of Tony O'Toole, former Chairperson of CFAI In October 2021, Cystic Fibrosis Ireland were sorry to inform members of the death of Tony O'Toole, a former chairperson of the Cystic Fibrosis Association of Ireland (CFAI) in the 1970s. Tony became involved in CFAI, now known as Cystic Fibrosis Ireland, following the death of his son in 1966 and was a great advocate for improved CF services in both Mayo and at a National level. Among many achievements Tony played a key role in securing the national office in Rathmines and in the development of the original 2 paediatric CF units in Mayo General Hospital. CFI wish to extend our deepest condolences to Tony's family, including his son Billy, who is an active member of the Board of CFI and daughter Martina Jennings, who was a key person in the development of the new CF Unit in Mayo developed in 2015. Many thanks to Tony and his family for their contribution to CF care over many years.

Spectrum / Spring 2022

MEMBER SERVICES

Travel and CF

we can all get back out again after all our COVID lockdowns and restrictions. You want to get back to seeing the world again or maybe even you are planning your first ever trip abroad or even your first trip abroad in many years. Thanks to the new CFTR treatments so many with CF may be feeling a bit more confident and able to plan activities previously they might have found very stressful. We have some travel tips here to help you on your merry way to your next adventure.

COVID-19 First let’s talk COVID though. Covid is by no means gone so please check travel advice regarding COVID requirements to travel and COVID incidence in the regions you wish to visit. You may have to prove you have had you COVID vaccinations for the region you wish to visit. Your COVID vaccine certificate can be used as proof of vaccination to facilitate travel across the EU during the COVID pandemic. You can check COVID travel information and advice at the following resources: •

visit the government website at www.gov.ie/travel

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get travel advice to help you make an informed decision at www.dfa.ie/travel

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EU travel advice and travel regulations at https://reopen.europa.eu/en

The emergency helpline number for the Digital COVID Certificate is: 1800 807 008 (or 353 1 903 6437 when calling from abroad). And lets not forget the old reliable - your mask! FF92 or N95 offer the most protection so make sure to bring a stock with you to have in any circumstance where you find it may be needed.

Medication Ok back to the real business, organising your trip. With CF you have additional considerations. Are you taking CFTR medication- Kalydeco, Orkambi, Symkevi or Kaftrio? These medications are prescribed on the high-tech hub

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system and these prescriptions must be renewed every 3 months. Most of your other medication prescriptions must be renewed every 6 months. Another consideration is that this system is very restrictive for the CFTR medications - you can arrange to order 2 consecutive months of medication- but this will be honoured only as a special once off request – once every 5 years or similar.

Pack enough medication If you are planning a short trip, make sure you pack enough medication, including for a few spare days to cover unforeseen travel delays. Also make sure to pre-order your next supply of your CFTR meds from your pharmacy in case you are near the end of your month’s supply on the day you land home. You don’t want to miss a few days doses when you get back from your trip as you have to then place your order with your pharmacy, wait a few days for your pharmacy to fill your order and then get over to your pharmacy to collect your meds! If you don’t organise all this in advance, you will find yourself being short a few days of CFTR meds when you get back. Plan wisely! Avoid this by making sure your CFTR meds are already ordered before you arrive home - even have a friend or family member collect it for you so that it’s there at home for you before you even get back. Keep a close watch on your prescription validity too. If your 3-month prescription expires while you are away, your pharmacy can not re-fill your order. They will need a renewed prescription first. You can lose another few days of important meds supply in requesting a renewed prescription. Discuss your travel trip with your CF team so that they can renew for you as needed.

Planning for longer trips If your trip is for a period longer than 2 months duration it needs a bit more careful planning. You will need to discuss with your CF team practical ways and get agreement from them to renew your CFTR medication prescription while you are travelling. They may insist you check in with a CF clinic abroad and will only agree to renew your prescription after having renewed clinical notes on our progress from the clinic abroad. Once you have agreed a system to facilitate prescription renewal, you then need to arrange to have your medications ordered for you, then collected and shipped to you at your location abroad. Speak to your pharmacist about this- some may be willing to complete this step for you but if not, a family member may be able to arrange a courier on your behalf. If you don’t know your forwarding address maybe consider contacting the relevant nearest Irish Embassy in abroad. Irish citizens traveling abroad should register their details with the Department of Foreign Affairs - see more on this at https://www.dfa.ie/travel/citizens-registration/ This will help officials contact you in any unforeseen circumstances abroad. This is recommended for all travel, but is especially relevant if traveling for extended periods and travelling to more remote regions.

Spectrum / Spring 2022

Travelling with medication Ok, so now you have your meds for your trip and contingency for continued supply but what do you do with your meds while travelling? Bring all your travel medications with you in your carry-on luggage. Do put your medication in any luggage you plan to check in as cargo for your flights. Cargo baggage gets lost, gets rough handled and your medication may even freeze in cargo! Bring a copy of your prescriptions, a letter from your CF clinic explaining you have CF and what medications you take. You may need this documentation to get through security checks if a grumpy security official decides to query your med supply in your carry-on baggage.

Medical Identification Card You can order a very helpful medical ID card from CF Ireland - just contact info@cfireland.ie and we will send you an application form. This card is really useful if you need medical assistance abroad. Its credit card sized, will have your photo, states you have CF, lists your emergency contact details and your CF doctor’s details.

Hydrate! Bring electrolyte rehydration tablets or sachets. Your pharmacist or your CF team can advise you on these. PWCF can dehydrate very quickly during travel. It’s not pleasant- in fact it's really very miserable. Drink plenty of water at airports and on flights to avoid this- the air-conditioning alone in these places can dehydrate you. If you do get dehydrated, the rehydration drinks will help you out.

Other really important things to arrange for your trip •

European Health Insurance Card – see https://www2.hse.ie/services/ehic/ehic.html

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Travel insurance

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More CF Ireland helpful travel tips- see https://www.cfireland.ie/support-resources/resources/publications

Please contact our Member Services team at CF Ireland if you have any travel questions. •

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SPOTLIGHT As Winter becomes Spring and we emerge from an era of restrictions, we may find ourselves in situations which we haven't found ourselves in quite a while. Maybe that is getting back to an exercise regime, being out and about in public, or facing a new challenge entirely. At different times, we all face challenges which may unbalance us and require us to 'find our feet' in a new situation. In this Spotlight, we speak to two people, one with Cystic Fibrosis and one whose child has Cystic Fibrosis about challenges they have faced and how they 'found their feet' to move forward.

i, my name is Eleanor McAree, I’m 32 years old and I have Cystic Fibrosis. I’ve always loved the outdoors. I have always been happiest when exploring a forest or hiking a mountain. The feeling during a hard climb up a mountain is tough but if you have the correct mind set and keep putting one foot in front of the other, you will get there eventually ….. and the feeling when you reach the summit is priceless. Your hard work is paid off. When Covid-19 hit, I was a bit lost as to what to do with myself. Having CF immediately made me become part of the ‘vulnerable’ group and all of a sudden I was told to ‘cocoon’. I felt scared, anxious and my head would go in to complete overdrive of the ‘what if’s’. At around the same time, my partner, Si, had started running properly and he would come in after a run elated and feeling like he could take on the world. I wanted (and needed) what he was doing! When I ran before, I used to go all out each time. I would go out as fast as I could until I couldn’t go anymore and my lungs and legs were screaming at me to stop. That was what I thought running was. I didn’t know any different. When I finally began running properly I couldn’t believe that running slowly was part of the process. Ultimately running slowly would make me a faster runner in the long run (no pun intended), creating what is called an ‘aerobic base’ in the running world. So that’s what I stayed doing. That and a mix of tempo and interval runs. And I couldn’t get over how much my running started to improve.

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Eleanor McAree The mix of runs kept it exciting and most of all my head was becoming clearer, my thoughts less anxious and the feeling I felt after a run… there is nothing like it. Running has now become part of my routine. If you had asked me 2 years ago how many times I ran a week I would say one maybe to max. Now, I find if I don’t run for two days I’m itching to get out, to move my body, feel the air on my skin and feel my lungs working. I’m not sure that will ever go away. I’m currently training for my next ultra-marathon – a 50km trail run in Oslo in May then after that I am starting my prep for an 80km ultra trail run in Wicklow in July. This will be the longest I’ve ever ran in one go. I am very excited for the process that lies ahead. I know I have to be diligent with my training. There is no way I can show up on the day and just give it a go. I need to put in the work as I want to enjoy the day and not wake up the following day and not be able to walk for a week! But the idea of big challenges excite me. How you have to prepare both mentally and physically. How you know you will have your up’s and downs but coming out the other end will make you grow and that is what I thrive off. It’s not meant to be easy. If it was, everyone would do it. You have to push yourself out of your comfort zone. For me the hardest part of training is consistency. Sometimes you just don’t want to go for a run or the idea of watching a show or meeting up with friends is more appealing. But consistency is where the magic happens. When you sign up for an event you have to be prepared to know that there will be training involved and some of this might clash with other things. If you want it, you have to put the training in and go after it. I want to push myself in what I can do and prove to myself I’m capable of running these distances. Two years ago, I would have never dreamed of it but my determination has grown and I know I can do it if I put my mind to it. I have found my feet and my feet are happiest when they are plodding the ground on a run up the mountains. Never underestimate what you are capable of and definitely don’t underestimate until you have tried.

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SPOTLIGHT

t was October 2019, shortly after our second wedding anniversary when I discovered I was pregnant. John and I had been together for 9 years, so this baby had been talked about and longed for and we were so excited!! We told our parents a few weeks early and on Christmas week we shared the news with the rest of our family and friends. We really enjoyed telling everyone, raising a glass and the excitement building for us. As we entered 2020 the news of Covid grew and the world changed very quickly. The Rotunda brought in partner restrictions in March, the week I was due to have my anatomy scan at 21 weeks pregnant. I went into my scan alone; the sonographer was so kind and understanding of how hard it was for John not to be present and talked me through the scan. I recorded baby’s heartbeat and she printed plenty of photographs for John. The scan was incomplete as baby was turned the wrong way; she was very comfortable turned with her back to my belly so the sonographer couldn’t see the umbilical cord. It was nothing unusual, so I was scheduled for a repeat scan at 24 weeks. Again, I attended alone as the country started to completely shut down. Baby was lying the right way for the scan this time and the sonographer went through the final bits that needed to be done. After a few minutes she said: “Hannah, this is your baby’s bowel” and she pointed to an elongated balloon shape on the screen. Me, being fascinated with what this technology could do said “oh wow, that’s amazing”. The sonographer looked at me and said, “the bowel doesn’t normally show up on the scans. Fluid moves through the bowel, but we can’t see it. We’ll need to have a consultant look at this in case there is a blockage”. I had no idea what was going on, how could this be happening to my baby?! I was given an appointment for the following week with a visitor card for John to come with me. John was waiting for me in the car outside, I showed him the picture and repeated what the sonographer said, “that’s the baby’s bowel, but you shouldn’t be able to see it”. John’s reaction was similar to mine, “are they sure? What does it mean? What else did she say?” I told him the limited information she had said and racked my brain to try to remember if I had zoned out while she was talking. We went home and let the week pass us by, lost as to what this all meant. At 25 weeks the consultant diagnosed baby with a blocked bowel. She explained that it could just be one of those things that happen during pregnancy and may resolve itself or baby may need surgery after birth but regardless I would have a lot more scans to monitor the growth of the bowel. She mentioned that

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Hannah, John and Florence Campbell it could be a flag for a genetic condition called Cystic Fibrosis and we would be tested to see if we were carriers of the gene. My blood was taken after the scan. Ten days later I received a phone call to say that I was a CF carrier, DF508. The midwife explained John would now need to have his genetics tested too. She told me not to go to Google but if I wanted to know more look at hospital sites or Cystic Fibrosis Ireland. John and I couldn’t believe what was happening, we still didn’t really know what it all meant, it was such a scary, worrying time. The following week, 30 weeks pregnant, we had another scan. Baby’s bowel was growing in line with her own growth so there was no immediate concern, but she had to be born by planned C-section. If labour started at any point, I was to get to the nearest hospital as contractions could cause her bowel to rupture. Thankfully, as a preschool teacher I was working from home due to Covid restrictions, so I didn’t have to worry about any bumps or bangs to my growing belly. John, who works in aviation, was also off work which meant we had time together to take in what was happening to our baby. Ten days passed and we hadn’t heard about John’s genetic results. We thought that maybe that was good news?? A few days later I went for another scan on my own, thinking it was just routine at this stage. The consultant told me that Johns genetic results were back and that he was a CF carrier too, 621+1G>T. I felt like the world stopped, I don’t remember breathing but tears streamed down my face. All I thought was that I needed John, now. As I rang him the consultant rang down to security and explained to let John in when he arrived. The moment I saw him I crumbled and through sobs managed to tell him what had happened. We sat in silence wondering what this meant as a paediatric consultant came in to talk to us. He explained what Cystic Fibrosis was and asked if we had any experience with it. It was honestly the first time we had even heard the two words, never mind experienced it. No one in our families knew

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if they were a carrier, we didn’t know anyone with CF, this was all so new. The consultant explained what CF could mean for our baby but that the condition couldn’t be predicted in how it would affect a person. I think this was the hardest, not knowing how the genes would affect our baby, how could we prepare when we didn’t really know what to prepare for. Her bowel blockage was diagnosed as Meconium Ileus. We were told that she would go to NICU after birth and then transferred to Crumlin or Temple Street hospital for surgery on her bowel. The recovery was unknown as it depended on how her bowel was affected so we didn’t know how long our new born would be in hospital. After birth her genetics would be officially tested but for now it was the assumption that she had Cystic Fibrosis. We went home and tried to understand what had been said, dreams smashed of bringing our new baby girl home to meet our families and learning to be new parents together. We rang our parents to tell them, trying to explain what we knew, needless to say, they were shocked and devastated for us. John and I got through the rest of the evening still shook from the news. We both woke up early the next morning, the sun beaming into the room. We had one last little cry and decided to go for a walk along the seafront. We walked in silence and sat looking at the sea. We held hands and, in that moment, it was like we silently agreed that we could do this. From then on, we only looked forward, our baby was coming in a few weeks, and so was the new world of Cystic Fibrosis, there was no choice in that. So, we chose to embrace it, mind set on making our baby as healthy as she could be and learning all we could. Cystic Fibrosis would not take the joy and excitement away from us, this was our long awaited first baby and CF was not going to shadow that. There are two stand out moments for me on our journey where I feel like we conquered all, this moment was one of them. Our beautiful Florence was born on the 6th of July 2020 at 38 weeks where it was decided her bowel was getting slightly too big and it was safer for her to be born. She was perfect, a little cat cry when she was born and then back to sleep. Looking at her you would never know that our chunky new born needed major surgery in a few hours. We had an hour together and then she had to go to NICU and because of Covid restrictions John had to leave the hospital to come back later at visiting hours. I was brought back to the ward alone, no baby and no husband. The alone moments of this journey were by far the hardest. That evening John had just arrived to visit me when we were told that Florence was going to be transferred to Crumlin hospital. John followed her over, met with the surgical consultant and he brought our new born down to theatre. She was 13 hours old when she had surgery on her bowel. Thankfully, they were able to surgically flush the blockage out and didn’t need to remove any of her bowel. This made us hopeful about her recovery and that it wouldn’t be too long before she was home. John spent his mornings with Florence and the evenings with me, going back to her to say good night. Two days after her birth I was allowed to go and visit my wonderful girl. Although John was sending me countless photos and videos, seeing her in flesh just made it so real. We got our first family picture taken and enjoyed being together before I had to go back

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to the hospital again. I was discharged the following day and went straight to see her again. She was doing well, although her bowel kept blocking. They were giving her 1ml of milk every 3 hours through a nasal tube, she could manage it for about a day and then the nurses would have to flush her bowel again. It was so difficult not getting our hopes up as she tolerated each millilitre every other hour. After 7 days she started to need less flushes and was pooping by herself. One evening the nurse rang myself and John when we were at home for dinner to tell us she had just done a big poop all by herself, and we cried over poop!! At 10 days old we had a meeting with a CF nurse and the consultant, and he said the words, “Florence has cystic fibrosis”. Our last little shred of hope that this had all been some crazy mix up was dashed, this was happening to us and our baby. She has Cystic Fibrosis. The nurse talked to us about different things, but we didn’t really hear any of it as that sentence rang through our heads. We left the meeting and found a quiet space and cried and hugged each other. After a few minutes we wiped our tears away and went to hug our CF baby. We were so happy she was here, CF or not. We knew our CF journey started long before this moment, but now it was real. She started Creon that day with the next feed, and it was like from that moment she had decided to show us what she was really made of. By the evening she was breast feeding for the first time, the next morning she pulled out her nasal feeding tube and by the time someone had come into our room she had fed so well from my breast they didn’t see the point in putting the tube back in. She started pooping with no issues, and flushes stopped completely. The next day, day 11, it was a Friday and it was decided to see how she managed over the weekend, slowly reducing the IV nutrition and going to breastfeeding only. I moved into her room so that she could feed as much as possible, 10 days post c-section and my new mission was to have our baby home in two days!! Florence even showed an understanding of what was happening as by the Sunday night she wasn’t connected to any machines. The nurse did her nightly vital checks but otherwise we were left alone. On the Monday morning I started packing and excitedly asked the doctors if we could go home. They were apprehensive as they wanted to see more weight gain but agreed it was something that could be monitored from home. It was so nice to ring John and tell him such wonderful news, “come get us, don’t forget the car seat because she’s coming home!!” I’m not sure if we decided not to tell anyone, or everything just happened so quickly we were home before we had the chance but as the news started to spread that Florence was home the joy and excitement grew. Our parents came to meet her the next day which was a very emotional for everyone, such a long-awaited moment was here and it was spectacular to see them cuddle our little fighter.

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Two days later we attended Temple Street Cystic Fibrosis clinic for the first time to meet the team. It was a whirlwind, so many new people and so much information all at once. We were exhausted when we came home. We attended weekly, writing down questions throughout the week. As we got used to the medications, we settled into a routine and were able to understand the information. We learned how to be parents and enjoyed the wonderful summer weather spending most days outside showing our baby girl the world. John was still off work because of covid restrictions, although it was something he really missed, having the family time together was incredible. It also meant we could attend CF clinic together. At last we were together on this journey, it wasn’t me remembering what to tell him. We would leave clinic and together remember everything we were told; we were able to be a proper team. In September 2020 it was decided to start nebuliser treatment and physiotherapy. This was another learning curve for us, another step on our CF journey. They showed us the treatments in clinic, Florence fell asleep doing them and thankfully wasn’t bothered at all. The next day we started doing them at home ourselves. I found it difficult with the reality that this was her life now, seeing my little baby doing something that felt so invasive and looked so intrusive on her little face was upsetting. But John helped me realise that it was to help her be the healthiest she can be, it’s a powerful tool, not one to be upset or scared by. We started to feel like we could start putting focus on raising awareness of CF as we tried to help our family and friends understand our new life. John and his dad, Pat, completed the Cystic Fibrosis Ireland virtual Head2Head for the first time. We wanted to show Florence that we were her team and ready to support her and her community that we were now suddenly part of for life. In October my mam, Alice, and I completed the virtual VHI Mini Marathon raising money for Crumlin children’s hospital. We felt such a sense of achievement as we completed these and Florence’s clinic appointments stretched from weekly to every two weeks. Once we got to November, we went four weeks without any clinic visits and managed it again to get to her 6-month clinic check in the December. This was the second stand out moment for me in our journey. I remember walking out of the clinic almost skipping, we had no questions to ask, her weight gain and height were charting perfectly, and they didn’t want to see us for three months!! We felt on top of the world, our heads had been spinning for the past 6 months but now, we had firmly found our feet and we were beyond happy, Florence was thriving and so were we.

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We celebrated 65 Roses Day in 2021 by walking 6,500 steps and wearing purple. It also coincided with Florence’s bowel blockage diagnosis day, and it felt so good to focus on the positive journey we had had since then. In a year we went from not even knowing what Cystic Fibrosis was to understanding it and caring for a new born with the condition. In July we partied her first birthday away, celebrating with family how wonderful our little lady is. I found myself struggling a little with what we had gone through and started to make comparison photos of her as a now cheeky 1 year old and the previous year as a recovering new born in hospital. The difference reassured me so much, she looked so healthy and happy now. Focusing on the positives got us through so much. Her second Christmas brought Santa fever and she became obsessed with him. It was so much fun and exciting watching her learn about the magic of it all and her reaction to Christmas lights and decorations. We went to see Santa at Causey farm because she loves animals too. We had a wonderful day and we showered her with the magic of it all. When we got back to the car, I looked at my phone to discover I had 3 missed calls from the CF Clinic. She had been out of sorts the previous week and I had brought her in to get checked out and they had taken a swab, her swabs had never showed up anything before. When I rang back the nurse told me she had a growth of Pseudomonas and needed to start treatment immediately. Our magical Santa filled day was slowly deflating, we felt back at start wondering what this all meant. We attended clinic the next day to be shown how to do the treatments, it seemed so complicated at first and to add to matters Florence started to find attending clinic very stressful. As always, the nurses were so kind and helpful and settled Florence into what was happening as they danced around the room to Rockin’ Robin with her. With their advice and many words of reassurance we began the two-week oral antibiotic and three month nebulising treatment twice a day. Florence being the little wonder she is settled into taking her antibiotic with little fuss and some encouragement. She began to enjoy her nebulisers as she relaxed watching her shows and music and we settled into our new routine of 3 nebulisers a day. Now in March 2022 and as I write this Florence has just finished her 3-month nebulisers this week! We celebrated with a trip to McDonalds where she had chips, ice cream and got a book with her Happy Meal, which are all her favourite things! This year we’re looking forward to welcoming our second baby in June, who is a CF carrier, and ensuring Florence is happy and healthy. Looking back on the past two years, we feel so lucky, and focus on that. Lucky that we found out during pregnancy what was ahead of us as we were ready to start on a journey of unknown with Cystic www.cfireland.ie

Fibrosis from the moment she came into this world. We know how incredibly lucky we are that Florence has been so well compared to some newborns and children with Cystic Fibrosis. Florence has thankfully gained weight and thrived as she should. With a Cystic Fibrosis diagnosis, I found the hardest part not knowing what it would bring, and the complications can vary so much too. Somehow our little wonder surpassed any major complications. And we are incredibly lucky to have such wonderful, supportive parents, family and friends who surrounded and supported us in the hardest times. We have had to find our footing many times throughout the last 2 years, and at times I forget that it’s only temporary until something changes in her treatments, and we need to balance ourselves again. We have decided to always celebrate her Cystic Fibrosis, celebrating how well she is or even if we’ve had a tough few months then we will dust ourselves off and celebrate when we get through it.

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Kid Heroes

ho do you think are heroes? The Gardaí? The fire brigade? Your doctors? Someone with a mask, cape and superpowers? Heroes come in all different forms and here in CF House, we hear lots of stories about children, with and without CF, who are making a difference by achieving and doing extraordinary things in our community. We know that children everywhere have had a tough time over the last few years, and we think you are all heroes, but we’d love to share some of the stories we've heard with you.

Harry Cahill

First, let’s meet Harry Cahill. Harry is 13 years old and has Cystic Fibrosis. He takes medication every day and has physiotherapy exercises to help him clear his lungs to breathe. When he was 9 years old, Harry joined St Coca’s Athletics Club in Kilcock, Kildare with his Dad. Because Harry’s birthday is in April, he often has to train and race with older age groups so now he runs under 15s. Since joining, he has discovered how much he loves running, especially longer distances and cross country which is running through muddy fields! He noticed how good it makes him feel to run and how it helps his lungs to work better.

Harry says: “I joined St Coca’s with my Dad. Mum said being part of a club would be great fun and I’d make loads of friends and get exercise too, and she was right! I love it and the challenges of running, but it isn’t easy. I have to work extra hard to get faster and cross the finish line first. But I can do it. CF will not hold me back!” Harry trained so hard that he became the fastest boy in Kildare. He kept competing and became the 14th fastest runner in Leinster. He then qualified for the biggest races of the year, The All-Ireland Finals in Dublin and Cork. Harry and his team joined the fastest runners in the whole country and do you know what? He did it! Harry succeeded and his team won gold and he is one of the fastest runners in the country! Isn’t that amazing?

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Not so long ago, children with CF didn’t have super medicines like they have now and being a cross country running champion was just a dream, but now with new medicines like Kaftrio, that is changing and Harry, along with so many other CF children, can not only keep up with their friends but pass them out too! Go Harry!! You’re our hero!

Roisin Mehigan

Another hero of ours is Róisín Mehigan. Róisín is eight years old and is from Offaly. Although Róisín doesn’t have CF, Róisín’s mum, Audrey, explained to her just how sick people can get when they can’t breathe very well. Róisín knows that it is important to do something kind for other people and when she was seven years old, she decided to do a Rapunzel challenge – where someone grows their hair super long and cuts it off to raise money for charity. It was extra special because Róisín was able to donate her hair too! “It was a bit tricky,” says Róisín. “I wasn’t sure about growing my hair so long and then cutting it off. I had to grow it to my bum! But Mum says it is a really good thing to do and I want to help people so I did it. And sure, my hair is long again now anyway.” Roisin and Audrey decided to donate all the money Roisin raised to CF Ireland. Well, Roisin must have had a lot of hair to cut off, because she raised a whopping €1500!!! But can you believe it, Covid-19 stopped Roisin coming up to Dublin to bring her donation to CF house but finally, we got to meet this kid hero in February 2022. This donation will help CF Ireland help more people with CF in so many ways, so, thank you Roisin. It was such a kind gesture that we're sure everyone will agree, Roisin is a hero too!

Spectrum / Spring 2022

HOSPITAL HUB A Win for the Cystic Fibrosis (CF) Team in CHI at Tallaght at the recent Irish Healthcare Awards

by Helen Gibbons, Senior Counselling Psychologist with the CF Team in CHI at Tallaght

he CF Team in CHI at Tallaght were delighted to be shortlisted in the “Innovation in Healthcare and Medicine” category at the Irish Healthcare awards held recently.

Their entry entitled “Mixing Modalities to Provide Optimum CF Care” was chosen as the category winner. Professor Basil Elnazir (Respiratory Consultant), Gerardine Leen (CNS), Jacinta Greene (Dietitian) and Helen Gibbons (Psychologist) were very proud to attend and to accept the award on behalf of the rest of the team and the patients and families we care for. This award is a wonderful public acknowledgement for our dedicated, patient-centric CF Team. Our CF Team members have worked in CF for varying lengths of time, from 4 months to 30 years. Staff members don’t often leave our CF Team; this is a testament to how rewarding the work is, the strength of the relationships we enjoy with our patients and their families, and, the camaraderie and wonderful working relationships we have with each other. Our patients and families, together with the wider CF family nationally, will be very excited when they hear this news. It provides a great opportunity to showcase the dedicated work conducted by the CF Team in CHI at Tallaght and by CF Teams around the country. This has been an incredible 20 months in healthcare. The COVID-19 pandemic significantly impacted how we all deliver our services, with hospitals suspending or severely curtailing patient attendances in the initial

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stage of the pandemic. Routine face-to-face review which is a cornerstone of our modus operandi in CF and central to maintaining good patient health and care was only available in limited circumstances. The CF Team here pivoted very quickly, focussing on finding a way/ways to retain regular connection with our patients to ensure we provided holistic care and support, and reassurance in an uncertain and worrying time for all. We began exploring how we could make use of new and old technologies to assist us in our objectives.

Our weekly review clinics were suspended; our patients, like many other vulnerable groups, were frightened about the potential impact on them of contracting the virus and were still at risk of acquiring the normal infections and exacerbations; they needed monitoring and support. So, we “mixed modalities to provide optimum CF care”. What exactly was involved? In summary:

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We introduced a twice weekly Telephone Review Clinic where some of the core MDT members telephoned a cohort of patients at a pre-arranged time. MDT members involved usually included the Clinical Nurse Specialist, Dietician, Physiotherapist and Psychologist. We conducted a ‘team review’ of the scheduled patients. We provided review, relevant advice and reassurance and follow-up, as required.

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When the video platform Attend Anywhere was mooted (a number of weeks into lockdown), the CF Team volunteered to pilot it with our patients. The patients and families responded really well to its introduction. Patients saw many of the MDT, including the Respiratory Consultants and it offered enhanced benefits for all. Patients were able to attend from their homes, their holiday homes or chosen lock-down locationsone from the family campervan! Unexpected positives resulted in the team getting a more ‘personal’ window into their world by seeing our patients and families their own environment; we met many muchloved family pets, other family members, special cuddly toys etc.

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The CF Team had been using email for many years to enhance patient engagement and support. However, it is fair to say that this increased significantly in 2020. It allowed us to maintain regular contact, to support our patients and to send them up-to-date information instantaneously. This enhanced their sense of connectedness, normalcy and helped to guard against isolation, worry and fear.

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Our model of care now involved a broader mix of modalities than ever before- telephone, video, email and face-to-face review. This mix was working very well with the telephone consultations and the video platform proving very useful. However, they were not homologous to face-to-face assessment. So, to enhance the service we provided to patients and to augment our recording of the ‘medical markers' of sickness/wellness, we introduced Remote Monitoring (RM) to our eligible patients (almost half of our patient cohort). RM involves providing them with a small spirometer and pulse oximeter, both managed by an app on their smart phone.

This enables us to monitor their lung function and oxygen saturation levels remotely without them having to come to the hospital (unless the data returned indicated deterioration). Once a patient performs the required measurements, results come straight through to us via an online portal. This provides us with objective, real-time data indicating how patients are doing; trends can then be observed by the entire team, with deterioration highlighting the requirement for a timely face-to face review. The Attend Anywhere video platform has been also been used to enhance RM. The Respiratory Physiologist and the Physiotherapist can deliver video support to ensure correct technique. This provides motivational support, as well as ensuring the results recorded are accurate. We plan to further develop RM by monitoring patients’ physical activity levels using both the app and their smart watch. As highlighted above, the delivery of CF care has morphed in CHI at Tallaght in the last eighteen months or so to embrace a variety of modalities and approaches. I understand that this is also true of many of the other CF Centres across the country. One thing that hasn’t changed though is the mutual respect and the centrality of the relationships CF Team members enjoy with their patients and families. The focus for patients and families of maintaining optimum health, and, for CF Teams of delivering optimum care remains a central tenet. We would like to thank our patients and families who make what we do so rewarding. This award is as much for them as it is for us. Thank you also to the team in CFI for their continuing support.

Be Part of The Mater Transplant Clinic Photowall

he Mater Transplant team are striving to make some improvements to the transplant clinic experience and as part of it we are creating photo wall/poster and screen slideshow in our outpatient department waiting room. We are asking photographs of heart and lung transplant recipients living their lives, doing something they love whether spending time with family, playing sport, attending college, graduating, working, hobbies, getting married – whatever picture they feel expresses them living post-transplant. If you could email the photographs to susantowell@mater.ie, Susan will collate them all be to be part of the project. Ideally, the photos should be submitted by the end of March. Thank you.

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A New Website for Cork Centre for Cystics Fibrosis (3CF)

he Cork Centre for Cystic Fibrosis (3CF), decided to develop a website with information regarding the care provided by the unit and the research it conducts. Over the past four years the group have researched other CF centre’s websites nationally and internationally as well as keeping track of all queries received in the clinic by PWCF and their families. With this information the group developed a website and shared it with several PWCF attending the Cork adult services for feedback before making it available online. Some of the feedback received includes: • “I feel every aspect has been covered. I think the Team Overview is an excellent addition along with the virtual tour.” •

“For new patients or people considering coming to the centre for their care, it provides a comprehensive and thorough overview of the team and what to expect etc. I think for people who don't know anything about CF it also provides a lot of clear information without being an overwhelming amount or difficult to follow."

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“For me as a patient who knows the centre and the team well already, my favourite aspect was being able to see all the publications, presentations, funding etc. I'm really interested in all of that side of things and being able to view that on the website would prompt me to ask questions in clinic or when I see the team, and have the opportunity to learn more. It would allow conversations to arise that otherwise might not. I liked the information about the research team too as they're a part of the team a lot of us probably have never met, the little bit about the lab and research team again would prompt people to ask questions they otherwise might not ask in clinic, and gives the opportunity as a patient to learn more about how research is carried out.”

Other information available on the website includes an introduction to each of the team members, virtual tours of the unit, virtual transition tours for new patients, and educational videos/animations. The website is now live and available at the below link. If you get a chance to visit the website and would like to share some feedback with us, please feel free to contact us (details found in the contact section of website). We anticipate to have an official launch of the website with our website champion later this year. URL: https:// www.3cf.ie

Spectrum / Spring 2022

Exploring Diet Quality in Cystic Fibrosis Enabler and barriers to eating a healthy diet Who is conducting the study?

r Audrey Tierney, a Senior Lecturer in Nutrition and Dietetics at the University of Limerick was awarded a grant by the Health Research Board (HRB) and Cystic Fibrosis Ireland for a project called ‘Exploring diet quality in Cystic Fibrosis – enablers and barriers to eating a healthy diet’.

Why are they conducting the study? It is well known that a diet high in energy and fat has been advised for people with cystic fibrosis (CF) for many decades now, to reach necessary weight or body mass index (BMI) goals due to the relationship between a better BMI and improvements in lung function. In the general population these diets are linked with dietrelated chronic diseases (e.g., Obesity, diabetes, hypertension, cardiovascular disease). Various studies have documented nutrient intakes (e.g., energy, fat, carbohydrates, protein) in people with CF but have lacked data on overall diet quality, particular in adults with CF (i.e., meeting all food groups, vitamin intake sufficiency). Furthermore, no documented study has assessed what drives and restricts the consumption of a healthy diet in people with CF. With the advancement of gene therapies like CFTR modulator therapy, there has been a resultant increase in rates of overweight and obesity amongst people with CF, highlighting the importance and need to relook at the dietary recommendations for this population.

What are the goals of the study? Audrey and her research team at the University of Limerick aim to explore what are adults with CF in Ireland consuming currently and to investigate the overall quality of these diets and illustrate what impact the diet may have on CF and quality of life.

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Who can get involved? Any person aged 18+ years old with CF.

What does the study involve? Completion some questionnaires (can be provided online or paper-based). Optional participation in an online focus group/semistructured interview to allow adults with CF to share their views and experiences on what influences their eating habits, diets, and food practices.

What could be the implications of this research? With compliance to the current dietary recommendations being generally poor, this research will help to clarify nutrition priorities and simplify the dietary approaches of CF treatment. The baseline information collected will then inform future interventions to assess the effects of an alternative type of diet in CF (e.g., Mediterranean / Dietary Approaches to Stop Hypertension (DASH) diets). There is also a potential for this research to change dietary practice worldwide, influencing models of care for dietetic services and future interventions to improve the quality of life of people with CF.

How do you get involved? If you wish to get involved, or would like more information, please contact Audrey Tierney or Cian Greaney (research assistant): Email: Audrey.tierney@ul.ie / Cian.greaney@ul.ie Phone/Text: 086 865 2977

Spectrum / Spring 2022

RESEARCH UPDATE Research content by Dr. Sarah Tecklenborg, Senior Research & Policy Coordinator, CFI

RECOVER, Real World Clinical Outcomes with Novel Modulator Therapy Combinations in People with CF

ECOVER, led by Professor Paul McNally, is a large, multi-center study which is taking place in eight paediatric and adult sites across Ireland and the UK over a three-year period. Funded by CF Ireland, the CF Foundation (US) and the CF Trust (UK), the study is examining in detail the impact of the new triple combination CFTR modulator compound, Kaftrio, on the lives and health of people with CF.

RECOVER is not a clinical trial as it is examining the effects of Kaftrio only after it has been prescribed for patients by their medical team. The project will gather both routine health data and less commonly used clinical endpoints such as lung clearance index, Chest CT, gastrointestinal symptoms, inflammation and medication adherence providing unique insights into the effects of the triple combination drug. The project is run in conjunction with the CF registry of Ireland and the UK CF registry. The first 12 months of RECOVER has seen 116 adults and adolescents recruited across UK and Irish sites. Navigating COVID restrictions, the RECOVER team successfully conducted visits across all sites utilising a mix of virtual and in-person study visits. In January 2021, the study was recognised as a clinical trial in the UK sites. Through hard work and determination all sites are now activated and recruitment for Phase II of RECOVER is in full swing seeing children aged 6-11 recruited since November 2021. In line with what was seen in clinical trials, the team have seen significant improvements in sweat chloride, lung function and nutrition in people with CF taking Kaftrio. The study has shown that, for participants with two copies of the F508del mutation, only 3% had a sweat chloride still in the abnormal range on Kaftrio, and more than 40% had a sweat chloride well within the normal range. They have also seen significant improvements in outcomes not used in trials, including LCI (a sensitive lung function test) and exhaled nitric oxide (a marker for airway inflammation). The data was presented at the North American CF Conference in 2021 and submitted to the European CF conference in 2022. www.cfireland.ie

Three new sub-studies have been established as part of RECOVER – A psychology sub-study in collaboration with Trinity College Dublin examining experiences of young people (12-17) who have started taking Kaftrio®, a study examining the impact of Kaftrio on nasal and sinus disease in children with CF aged 6-11 in collaboration with RCSI and St James’s Hospital and finally a study with the University of Amsterdam using breath analysis to detect changes in airway metabolism and inflammation with Kaftrio treatment. The achievements to date, outlined in the study milestones, could not have been met without the fantastic RECOVER participants, the PPI team, the collaborators and the research teams. For this, the RECOVER team would like to extend their sincere gratitude to everyone who has been involved up to this point and they look forward to continued success as we navigate through Year 2 for RECOVER and beyond.

Exploring the experiences of fertility and maternity care for people with Cystic Fibrosis and the healthcare professionals involved in their care Invitation to Public and Patient Involvement (PPI) Panel Hi, My name is Jen Balfe, I am a researcher in the RCSI, a mam of two and a person with CF. I am seeking people with CF to be on a PPI panel to help advise and inform my PhD project. I am looking for approximately 6 women with CF from Ireland, who have accessed or utilised fertility or maternity services. The stages of care might include pre-conception care, antenatal care, abortion care, intra-partum care and post-partum care. Panellists will be over 18 years of age and will be willing to provide feedback and guidance on the research project, using their experience to enhance the research study.

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It is envisioned that there would be quarterly meetings each year until the end of the project in September 2025. The first of these meetings will take place in April. This initial meeting will introduce the project in more detail to you and more importantly give the panel a chance to introduce themselves and come up with a mutually agreed upon timetable and terms of reference. Some reading/preparation work may be required, prior to meeting and the estimated time including preparatory work and the Zoom session would be 4 hours approximately. All panel members will receive remuneration for their time. The aim of the study is to get a true sense of the experience of fertility and pregnancy in CF in Ireland, in order to inform current policy and practice and to bring about tangible changes for pwCF in the future when planning or experiencing a pregnancy. The voices of people with CF and the healthcare professionals involved in their care are vital to planning for future services and making recommendations in terms of services and supports that would benefit pwCF in accessing and utilising fertility and maternity services. Patient centred research gives people with lived experience, the opportunity to use their voice to shape the future for others. The experiential expertise of participants will be respected and listened to in a way that will hopefully be rewarding and empowering for all involved. Having the support of a PPI panel is crucial to ensure that the voice of the CF community is embedded in this research. The study will be guided by the experiences and journeys of those who have walked the path of fertility and maternity care as someone with CF. While I am just starting my journey as a researcher, I have a lot more experience as a person with CF. Despite this personal experience, however, I am acutely aware that it is an experience which is unique to me, and given the diversity of experience in Cystic Fibrosis, I want to learn from as many different people with CF to ensure that a collective and representative voice is present in the study. As a community that is seldom together in a room to discuss common issues, the virtual space offers a chance to chat and share and learn from each other’s experiences. I would be very privileged if you would consider coming together to share your experience of fertility and pregnancy so that our study can be informed and guided by a community voice.

For more information, or if you would like to sign up, please contact Jen Balfe on jenbalfe21@rcsi.ie or Sarah Tecklenborg, research and policy coordinator in CFI on stecklenborg@cfireland.ie

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FUNDRAISING: Challenges and Events For further details on any of our fundraising events, visit our website www.cfireland.ie, contact the CFI Fundraising Team on (01) 496 2433 or email fundraising@cfireland.ie

April 8th: 65 Roses Day Please support Cystic Fibrosis Ireland on 65 Roses Day, Friday 8th April by taking part in a 65 Roses Challenge, donating online at 65roses.ie or purchasing a purple rose in participating Dunnes Stores, Shopping Centres and other outlets nationwide. €1 out of every €10 raised for 65 Roses Day will be provided to CF Poland to help people with CF in Ukraine who ou hearts go out to and all the people of Ukraine at this time.

65 Roses Challenge Why not set up a 65 Roses Challenge to help people with Cystic Fibrosis for 65 Roses Day? A 65 Roses Challenge can be any challenge with a 65 theme. It could be a 6.5k walk or run, 65,000 steps or a 65km cycle etc. All you have to do is click onto our 65 Roses Day website at 65roses.ie and this will give you some examples of the wonderful 65 Roses Challenges from 2021 and guide you through how to set up your Just Giving Page to start your challenge. Enjoy your challenge and don’t forget to share it on your Social Media to get maximum support #65Roses! For your fundraising pack so that you can complete your challenge in your purple Cystic Fibrosis Ireland shirt, don’t forget to email Brendán at brendan@cfireland.ie.

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Donate Online

If you are not in a position to set up a 65 Roses Challenge for 65 Roses Day, you can also support our largest fundraising campaign of the year by donating online at 65roses.ie. As this time when fundraising has been severely impacted by the pandemic and people with Cystic Fibrosis are impacted more than ever, any support you can give is greatly appreciated.

Buy A Purple Rose Our volunteers will be out in force on 65 Roses Day, Friday, 8th April and you can buy a purple rose in any participating Dunnes Stores, Shopping Centre or other outlets in your area. If you would like to volunteer to help on the day, please call us at (01) 4962433 or email fundraising@cfireland.ie.

April 24th: 10th Annual Duleek 10k Cystic Fibrosis Ireland and all of the team at the Duleek 10k are delighted to announce the 10th Annual Duleek 10k will take place on Sunday 24th April. Register now at www. cfireland.ie. This Duleek 10k is aimed at people of all fitness levels and you can walk or run your 10k. 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. Over the past 9 years the Duleek 10k has raised more than €200,000 to help support people with Cystic Fibrosis in Ireland. For further details please visit our website or email Brendán at brendan@cfireland.ie or Ann Noone at duleekcf10@gmail.com.

May 5th to 8th: Malin2Mizen Cycle4CF

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Registration is now closed for our annual Malin2Mizen Cycle4CF which takes place from Thursday 5th to Sunday 8th of May 2022. However we are taking expressions of interest for our Malin2Mizen Cyclce 4CF in 2023 so please contact us at fundraising@cfireland.ie if you are interested in cycling with us next year. Don’t forget to get out and support the cyclists if you can along the route; •

Malin Head to Bundoran – Thursday 5th May

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Bundoran to Oranmore – Friday 6th May

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Oranmore to Mallow – Saturday 7th May

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Mallow to Mizen Head – Sunday 8th May

If you cannot make it out to cheer them along, you can text Cycle4CF to 50300 to donate €4 towards this epic fundraising event. Texts cost €4. CF Ireland will receive a minimum of €3.60. S.P. Like Charity. Helpline 01 4819311. For further details please contact Cystic Fibrosis Ireland on 01 496 2433 or email fundraising@cfireland.ie.

June 5th: One in 1000 / Vhi Women’s Mini Marathon The Vhi Women’s Mini Marathon returns on Sunday, 5th June after a long 3 year wait since the last outdoor event in 2019. Why not become One in 1000 taking part in this very special event for Cystic Fibrosis Ireland? This is the largest outdoor women’s event in Europe and every year over the past 10 years, 1,000 women have participated in their purple Cystic Fibrosis Ireland shirts representing Cystic Fibrosis Ireland. Join us on the June bank holiday weekend in our base at the D2 Harcourt hotel where you can relax before the start of the 10k and drop off your belongings, get your photo taken and collect some goodies to get you through the 10k. When you return afterwards, we will have the music ready and food / refreshments so you can relax with your friends.

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SIGN UP NOW at www.cfireland.ie for this amazing event for the CF Community in Ireland and we will send you out your One in 1000 Shirt, bandana and details for the day. Don’t forget to also register with the Vhi to get your number for the 10K. For further details, please contact us on 01 4962433 or email fundraising@ cfireland.ie.

September 4th: 10th Annual Head2Head Walk

We so excited about our 10th Annual Head2Head Walk which takes place on Sunday, 4th September. This fabulous walk along the sea front from Howth Head to Bray Head goes from strength to strength, thanks to the wonderful organisation of the event by the Head2Head Walk Committee let by Mary McCarroll, Jem & Lorraine Downes and Glen McDonnell. The 10th Annual Head2Head Walk will be very special and you can avail of our Early Bird discount by REGISTERING NOW at www.cfireland.ie. For further details, call us on 01 4962433 or email fundraising@ cfireland.ie.

September 9th to 15th: Paris2Nice Cycle Registration is now closed for the Paris2Nice Cycle 2022. Good luck to all our participants in the event and we look forward to getting some really nice photos from the cycle. You can now register your interest in participating in the Paris2Nice Cycle in 2023 on our website – www. cfireland.ie. For further details call us on 01 4962433 or email fundraising@cfireland.ie.

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September 18th to 25th: International Walk We are delighted to confirm that the International Walk returns in 2022 with an amazing walk in Madeira. The beautiful island Madeira, which is an autonomous region of Portugal never fails to disappoint its visitor with the friendliness and outstanding hospitality of the locals, unique traditions and custome, stunning landscapes, great cuisine or the richness of its history and vegittation due to the being a major layover point during the era of discoveries. If you are interested in joining our International Walk in Madeira in 2022, please contact Brendan at brendan@cfireland.ie or phone 01 496 2433 as soon as possible. There are a limited number of spaces still available.

October 2nd: TCS London Marathon Registration is now closed for the TCS London Marathon 2022. Good luck to all our participants in the event and we look forward to getting some really nice photos from the day. You can now register your interest in participating in the TCS London Marathon in 2023 on our website – www.cfireland. ie. For further details call us on 01 4962433 or email fundraising@cfireland.ie.

October 30th: KBC Dublin Marathon We are delighted to confirm that the KBC Dublin Marathon returns on Sunday, 30th October. If you have secured a place in the Marathon and would like to be part of the Cystic Fibrosis Ireland Team taking part, register your interest NOW on our website at www.cfireland.ie. We will contact you and provide you with your Cystic Fibrosis Ireland shirt for the day and fundraising pack! For further information please email fundraising@cfireland or call (01) 496 2433.

Spectrum / Spring 2022

November 7th: TCS New York City Marathon Registration is now closed for the TCS New York City Marathon 2022. Good luck to all our participants in the event and we look forward to getting some really nice photos from the event. You can now register your interest in participating in the TCS New York City Marathon in 2023 on our website – www.cfireland.ie For further details call us on 01 4962433 or email fundraising@cfireland.ie.

All Year Round: International Treks For the really adventurous looking for the challenge of a lifetime in 2022, International Treks are available across the year to climb Kilimanjaro, Machu Picchu and Everest Base Camp. Register your interest to take part on our website www.cfireland.ie or email fundraising@cfireland.ie for more information.

Skydives If a skydive are on your bucket list, then 2022 is your chance to tick it off, while supporting a great cause. This challenge is one you will never forget and all you have to do is register your interest to take on our website at www.cfireland.ie and we will contact you to confirm next steps. Now is the time, take on the challenge and you will remember 2022 for all the right reasons. You can contact our office on 01 496 2433 or email fundraising@cfireland.ie for more information.

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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:

Christmas Jumper Day 4 CF Thank you to all the companies, schools and everyone who took part in Christmas Jumper Day 4 CF 2021. Over €35,000 has raised so far with monies still coming in. This will be a great help towards funding supports and services for people for with Cystic Fibrosis in 2022! We have added all the fab photos from the day to our website which you can view at www. cfireland.ie.

Head2Head Walk We would like to take this opportunity to thank everyone who made our Head2Head Walk such a fantastic event again in 2021 and in particular the organising committee including Mary McCarroll, Jem & Lorraine Downes and Glen McDonnell and everyone else involed. A huge thank you to all the volunteers who help to ensure the event runs smoothly and keep everyone safe on the day. Last and not least, thank you to all the participants in the walk who raised an amazing €48,583.85 from the Head2Head Walk in September last year. Pictured below are members of the Walk Committee presentating the cheque to Fergal Smyth on behalf of Cystic Fibrosis Ireland and they cannot wait for the 10th Annual Head2Head Walk on Sunday, 4th September this year!

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Tramore 4 x 4 x 48 Run

A huge thank you to Devin Enright and his colleagues who completed their 4 x 4 x 48 challenge completing their runs at the start of March and raising over €5,000 for Cystic Fibrosis Ireland and the Solace Centre. The challenge was to run 4 miles every 4 hours for 48 hours, which Devin and his friends completed, thankfully with no injuries. They are extremely thankful to everyone for their support over the last few weeks with their fundraising and thankful to the local businesses who came out and showed them support also!

Valentines Ball

A huge congratulations and thank you to Jillian McNulty who organised another amazing Valentines Ball in February. The ball took place in Lough Rynn Castle on Saturday 19th February and was a fabulous night! Now in its fourth year, the ball was a massive success with €6,000 raised for Cystic Fibrosis Ireland from the event! A massive thank you again to Jillian for continuing to organise such an amazing event and the very best of luck with the Valentines Ball 2023 for which we hear tickets are already selling out fast!

Pink Piano Raffle Clodagh O’Hagan arranged an online raffle of her gorgeous pink piano to raise money for CFI. The raffle which attracted a lot of attention online, not only raised an amazing €10,213 for CFI, but also raised awareness of Cystic Fibrosis as Clodagh was interviewed by Ray D’Arcy on RTE Radio One. We would like say a massive thank you to Clodagh for all your hard work organising the raffle and raising such a great amount of money as well as awareness of CF!.

Pigeon Auction & Online Raffle We would like to extend a huge thank you to Kelli Maples and family who raised a massive €7170 for CFI. Kelli’s dad Charles, auctioned his race winning pigeons to raise the money in conjunction with the Northside Pigeon Club. Kelli also ran an online raffle with prizes from Sandyhill Stud, Barts Pets Cabra and Avian World Coolock which added to the total. Kelli is pictured here with her dad Charles, who sadly passed away in March, on the day on the pigeon auction was held. Thank you to Kelli and all those who helped with the event! www.cfireland.ie

CONFERENCE 2022 AGENDA

Wednesday

Thursday

30 31

Session 1: 5.30pm – 6.30pm

Opening Keith McCabe , Chairperson, CFI Welcome and overview Philip Watt, CEO, CFI

Keynote address Inhaled Therapies in an era of CFTR Modulators Professor Barry Plant, Consultant Respiratory Physician and Director, Adult Cystic Fibrosis Centre, Cork University Hospital

Break session: 6.30pm -7.00pm Cystic Fibrosis Ireland Annual Fundraising Awards and Annual Raffle 2022 Fergal Smyth, Fundraising Manager, CFI

Session 2: 7.00pm - 8.30pm An update on the Real World Clinical Outcomes with Novel Modulator Therapy Combinations in People with CF (RECOVER) project Professor Paul McNally, Consultant in Paediatric Respiratory Medicine and Director of Research and Innovation at Children's Health Ireland PWCF panel discussion on Kaftrio

Session 3: 5.30pm - 6.30pm

Exercise and Endurance Training Clare Reilly, Senior Physiotherapist St. Vincent's University Hospital Chris Coburn, Strength and Conditioning Coach, St Patricks Athletic Football Club Caroline Heffernan, Endurance Athlete, CF Advocate, CFI

Break Session: 6.30pm - 7.00pm Supports available to CFI members and an overview of fertility and genetic testing Samantha Byrne, Member Services Senior Co-ordinator, CFI

Session 4: 7.00pm - 8.30pm Gene Editing and Genetic Therapies Dr Patrick Harrison, Senior Lecturer University College Cork and Head of the Harrison Lab HIT-CF Project Professor Kors van der Ent, Paediatrician, Professor of Paediatric Pulmonology, Chair of the Child Health Programme, HIT-CF coordinator, UMC Utrecht We fully anticipate that we will have a CFI conference ‘in person’ in 2023 with enhanced participation for those who cannot attend in person.

Spectrum / Spring 2022