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‘26 n The magazine for people living with Cystic Fibrosis in Ireland tu um A
SPECTRUM
In this issue...
ECFS 2026 The Athletes with CF representing Ireland Introducing Stepping Stones: The newest CFI grant Honouring Cathy Shortt: A Life of Dedication and Service Helping to keep CFI updated and much more....
Contents Hello! Welcome to the latest edition of Spectrum 10-14 Over 18? Make sure you are a
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registered member of CFI
16-17The Financial Impact of Living
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with CF
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the ‘Cost of Breathing’ 18-20How exhibition ignited a national conversation
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Introducing ‘Stepping Stones’ CFI’s newest grant
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Team Ireland 2026 Feature: David Howard Edelle Collins Victor Conroy Val Weblin
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22-26 Fundraising 2026 Fundraising Calendar 2026 Thank you! Building Impact 27-30 Honouring Cathy Shortt: A Life of Dedication and Service 31-33 ReWriting Tomorrow: Connecting Communities Brendan’s Doodles 32 34-40 ECFS 2026 Feature: Physio in Action Highlights from the Conference Floor 41-42 News from the CFRI 43
Top Travel Tips
Irish National Association for Cystic Fibrosis is a registered charity and company limited by guarantee trading as Cystic Fibrosis Ireland Charity Number: CHY 6350 | Registered Charity Number: 20011376
This months editorial by Nicola Delaney Foxe, Strategic Communications Senior Coordinator
Hello and welcome to the bumper Summer and Autumn edition of Spectrum. This edition is packed with news including ECFS 2026 in June, corporate and awareness events in July and August, stories from athletes with CF who represented Ireland across summer and the Head2Head Walk in early September. I am honoured to bring you the editorial for this publication and delighted to share that this section will be written by a different member of the team in each edition, giving you the chance to get to know us all a little better. My role takes me to all manner of places. This summer, it was a privilege to attend a number of the events featured in this edition. I love getting out and meeting our members, volunteers, the wider public and our elected representatives, so when I had the opportunity to volunteer alongside the CFI team at the Head2Head Walk, I jumped at it. It was a blustery but dry day and, as with every community event, what stood out was the enthusiasm and energy of those taking part. I was stationed in Sandymount and took the opportunity to chat with walkers arriving from Howth, others setting off for Bray, and members of the H2H committee who worked alongside the CFI fundraising team to make the event such a success. A massive thank you to everyone involved. We simply could not do the work we do without your support. In this edition, you can also read about the athletes with CF who represented Ireland over the summer. They share their inspirational stories, highlighting their determination, talent and commitment, and I think you will agree, their achievements are a source of pride for the entire community. I hope you enjoy reading about the achievements, advocacy work, events and community spirit that have shaped a busy and memorable few months for Cystic Fibrosis Ireland. Whether you attended an event, volunteered your time, shared your story or supported our work in another way, thank you for being part of our community. Looking ahead, we have an exciting programme of activities planned and look forward to continuing to work together to support people with CF and their families throughout Ireland. Happy reading! Nicola, CFI Communications Team Editor: Nicola Delaney Foxe | Intern Support: Alexandra Andrade Disclaimer: The views of contributors when expressed in this publication, do no necessarily reflect the position or policy of Cystic Fibrosis Ireland
OVER 18? MAKE SURE YOU ARE A REGISTERED CFI MEMBER We are now inviting everyone to update or edit your details by scanning the QR code below. Being a registered member means you can stay informed, access updates, grants and services, and make the most of everything CFI can offer.
Are you over 18 and have transitioned to adult care? Have you changed your number or email? Have you moved house? Would you like to change your communication preferences? If these or any other changes apply to you, please scan the QR code or visit www.cfireland.ie to make sure your details are up to date. You can also read our privacy policy and learn about your rights under GDPR by visiting www.cfireland.ie
Spectrum / Autumn 2026
CFI Advocacy Update
The Financial Impact of Living with CF CFI is acutely aware of the increased financial burden felt by many with CF and their families. The findings of our members survey undertaken in March 2025, highlighted what we have been made aware of through our supports, services and engagements with the CF community: having CF increases financial burden for many and living well with CF can be time consuming, expensive and can lead to serious personal and financial consequences. The survey findings noted concerning rates of people with CF living in enforced deprivation. Members reported many hidden costs of living with CF. Eating well, staying well, taking time off for hospital appointments and having to navigate employment with an illness that can be unpredictable and expensive. Being an inpatient in hospital, or caring for someone who is an inpatient, can create a significant financial burden. Loss of income, parking charges, supplementary food costs, childcare, fuel, and other associated expenses can quickly add up. These additional costs often make periods of illness even more stressful and can present challenges for the entire family and wider support network.
The Summit On the 13th May 2026, our Research and Policy Co-Ordinator, Jen Balfe, attended the Cost of Disability Strategic Focus Network Summit, held in the Aviva Stadium (hitherto be referred to as ‘The Summit’). This event was organised by the Department of Social Protection with support and input from other departments. In September 2024, the government published the ‘Green Paper on Disability Reform: A Public Consultation to Reform Disability Payments in Ireland’, inviting the public to respond to proposed reform on several disability payment supports including, Disability Allowance, Invalidity Pension, Blind Pension, Partial Capacity Benefit and Domiciliary Care Allowance. Following significant public backlash to the proposals including input from CFI, the government announced the decision to scrap the Green Paper in April 2024. In September 2025, the Government published the National Human Rights Strategy for Disabled People 2025-2030, in which it committed to holding a Summit. In preparation for the Summit, the government conducted a public consultation on the cost of disability. That public consultation process received over 1100 submissions from individuals and organisations representing disabled people, with the majority of submissions coming from individuals. CFI made a submission in response to this public consultation process in April and were subsequently invited to attend ‘The Summit’.
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Hosted by the Minister for Social Protection, Dara Calleary TD, 150 invited attendees, online attendees, government ministers and representatives of various government departments were in attendance. An Taoiseach Micheal Martin opened the event and attendees heard from An Tanáiste Simon Harris, as well as Minister for Children, Disability and Equality, Norma Foley, Minister of State at the Department of Transport, Seán Canney and employees of the Department of Social Protection. Discussions took place throughout the day including a panel discussion with a variety of people on their lived experience of disability, a roundtable event on the Cost of Disability and breakout sessions with discussions across the five pillars of the National Human Rights Strategy. These are Inclusive Learning and Education; Employment; Independent Living and Active Participation in Society; Wellbeing and Health; and Transport and Mobility. You can find more detail and read the CFI Submissions by scanning the QR code below.
What Next? Following the Summit, a briefing paper will be drafted outlining the key lessons and messages which arose from discussions. This will inform Government decisions on the design of a Cost of Disability payment. Given the tireless campaigning and advocating on behalf of people with CF to be recognised and reimbursed financially for the cost of living with CF, the term summit is apt. Sometimes incurring the costs of living with CF and navigating systems, which can be burdensome and expensive, can indeed feel like an uphill battle. We recognise that the current situation is not without its challenges and if anything the Summit was a reminder of how many people are affected by living with the cost of disability. Things are by no means perfect, but the strength and unity demonstrated by people with lived experience coming together to highlight the cost of disability was palpable. Continued engagement with, and inclusion of, those lived-experience voices will help ensure that the mantra “Nothing About Us Without Us” becomes a driver of meaningful change and impact. [The terms Disabled Person /Person with Disabilities are used interchangeably to reflect that some will identify as either or.] Scan here to view the CFI submissions:
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The Final Frame:
How ‘The Cost of Breathing’ Exhibition Ignited a National Conversation
What is the true price of a breath? From the electricity required to power life-saving medical equipment to the continuous cost of specialised nutrition, hospital travel, and damp-free homes, the financial toll of managing CF is a heavy, often invisible burden. However, for many with Cystic Fibrosis (CF) in Ireland, it is a question not only of economic pressure, but one of emotional and societal challenges. To bring these hidden challenges into the public eye, CFI collaborated with Trevor O’Donoghue, owner of Radharc Perspective and Life Coaching, from Killarney Co. Kerry and launched The Cost of Breathing campaign. Blending research, advocacy, and a moving photography exhibition, the initiative set out to challenge how the public and policymakers view the realities of chronic illness. The exhibition officially made its debut on October 17, 2025, intentionally aligning with the UN International Day for the Eradication of Poverty. It was originally launched as a virtual exhibition, allowing all our members, regardless of location, current health status or time constraints to experience it. Funded by the UN and the Department of Social Protection, the launch sent a clear message: poverty is not just a lack of general resources, but a systemic hurdle deeply tied to healthcare survival. Following the launch, the exhibition embarked on a national tour from February until August 2026. By hosting the exhibition in public locations nationwide, including highfootfall spaces like the Dublin City University (DCU) Library, Cork City Hall and public libraries, the campaign reached new audiences and generated opportunities for public engagement. It also served as a platform for political engagement, drawing local representatives to each location and gave an opportunity for CFI to emphasise the need for policy interventions that recognise these barriers and provide support to those impacted. CFI would like to extend our heartfelt gratitude to Trevor for being so generous in sharing his story and art; to the each team at every location who hosted the exhibition and to each and every person who engaged with, visited or left feedback for the exhibition. Cost of Breathing Gallery: Sarah Tecklenborg CEO CFI; Bernie Priestley Chair CFI; Honor O'Leary, Treasurer, CFI Southern Region; Liam McCarthy, Chairman CFI Southern Region; Trevor O’Donoghue, artist, his partner Ciara McCarthy, their friends and family, Lord Mayor of Dublin Daryl Barron, Former Mayor of Kerry Cllr Michael Foley, former Mayor of Killarney Cllr Martin O’Grady, Cllr Grainne Maguire and Librarian Una Smyth. Photo credit to Carrigdhoun Newspaper Seamus McGrath, T.D.; Cllr. Patrick Donovan Deputising for the Cork County Mayor and David Howard, Golfer and pwCF, included in the gallery.
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From the Guestbook “Fantastic exhibition. Well done, it gives us a visual insight to the realities of CF. Thought provoking. ” Joan, Killarney Library Feburary 2026
“Thank you for the real insight into vulnerability. Pure courage and wisdom.” Visitor to Tramore Library April 2026
“Well done Trevor on a great exhibition. Very enlightening and passionate.” County Mayor Cllr Mary L Foley, April 2026
“A powerful look into a world I never knew - brilliant visual display.” Martina, Blanchardstown Library May 2026
“Thank you for highlighting and informing the struggles of CF patients.... The rest of us have no idea what you go through. ” Marie, Bundoran Library, May 2026
“This exhibition has the ability to stop you in your tracks.” Ramor Theatre, at Virginia Library June 2026
“Amazing exhibition from Trevor in DCU” Lord Mayor of Dublin Cllr Daryl Barron, July 2026
The virtual gallery remains open. Visit www.cfireland.ie or can the QR code to view the exhibition.
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Spectrum / Autumn 2026
Member Services Update:
Introducing ‘Stepping Stones’ CFI’s newest grant to help people with CF futureproof their lives. The Stepping Stone Grant supports people with Cystic Fibrosis in taking meaningful steps towards greater independence, self-improvement, and fulfilment. The grant is designed around three key areas of support: 1.Education & Career Progression 2.Financial Planning 3.New Home Supports
1. Education & Career Progression This grant helps members pursue further education, vocational training, and career development opportunities by reducing financial barriers to learning and employment progression. This grant is for members who: Are pursuing education or training beyond secondary school. Cannot access alternative funding supports. Wish to explore new career pathways or develop new skills.
EDUCATION AND CAREER PROGRESSION
Grant Structure: Applications can be made once every 12 months. What is needed: Completed application form outlining the course and career goals. Course invoice and proof of payment funded New (part Home Supports by reimbursement). Any additional information requested during the review process.
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To apply for the grant, members are encouraged to contact a member of the CFI team, who will guide you through each step of the process and answer any questions you may have.
2. Financial Planning CFI has partnered with One Life Insurance to provide members with access to professional, one-to-one financial planning guidance tailored to their individual circumstances and goals. Email memberservices@cfireland.ie to express your interest and be included in the next available financial planning clinic.
This grant is for members who: Want to improve their financial knowledge and planning. Are facing important financial decisions or challenges. Would benefit from personalised financial advice
FINANCIAL PLANNING
What is provided: A 30 minute one-to-one consultation with a financial advisor A follow-up session where required.
Grant Structure New Home Supports Mortgage protection and life insurance challenges. Understanding underwriting decisions. Alternative mortgage options. Guidance on bank waivers. Income protection and serious illness cover. Pension and savings planning. Personal financial discussions and Q&A.
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3. New Home Supports This once-off grant helps members moving into a new home or social housing to purchase essential household items that support their Cystic Fibrosis health and daily living needs.
This grant is for members who: Are moving into social housing or a new home. Need support purchasing essential household items. May not have sufficient resources to fully equip their home.
NEW HOME SUPPORTS
Grant Structure: A once-off grant available to eligible pwCF.
What is needed: Completed application form. New Home Supports Receipts for purchases made (funding is provided by reimbursement).
Contact a member of the CFI team for support with your application. Applications will be reviewed against the grant criteria and applicants will be notified of the outcome.
Need More Information? For support or to discuss your eligibility, please email memberservices@cfireland.ie. The team will guide you through the application process and answer any questions you may have. You can also find out more by visiting www.cfireland.ie or scanning the QR code.
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Spectrum / Autumn 2026
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Beyond CF: Representing Ireland
David Howard, Cork The 154th Open 2026
Edelle Collins, Dublin European Transplant Games 2026
Victor Conroy, Laois European Transplant Games 2026
Val Weblin, Cork British Transplant Games 2026
David Howard is a person with Cystic Fibrosis who has achieved success in golf at a national and international level. Through dedication to his sport, he has represented Ireland in tournaments around Europe, showcasing both his talent on the course and his commitment to the game. His achievements in golf demonstrate that people with CF can participate and succeed at a high level in sport.
Edelle Collins is a competitive darts player, person with Cystic Fibrosis and recipient of a double lung transplant. She represented Ireland at the European Transplant & Dialysis Sports Championships, demonstrating the positive impact that sport can have on wellbeing and community. Her sporting journey reflects the role that sport can play in supporting active participation after transplantation.
Victor Conroy is an athlete, double lung transplant recipient and person with Cystic Fibrosis. He has represented Ireland at the European and World Transplant Games, competing in multiple sports, including darts, pétanque, shot put and ten-pin bowling. Through competing across multiple sports, he highlights the broad range of sporting opportunities available after transplantation.
Val Weblin, is a person with Cystic Fibrosis, double lung and kidney transplant recipient. 2026 was his second year competing in the British Transplant Games, where he brought home medals in ten-pin bowling, darts, snooker and football. Through competing in this event, Val highlights the importance of connection, remembrance and opportunity for people who are post transplant.
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David Howard Amateur Golfer and the open championship qualifier 2026 “Qualifying for and competing in The Open Championship at Royal Birkdale was something I never even dreamed would be possible. Growing up with CF, I never really looked too far into the future because my health was always uncertain, so something like The Open felt completely out of reach.” 12
To stand on the first tee as an amateur, competing against many of the world’s best golfers, was incredibly special. It wasn’t just about golf—it represented years of hard work, setbacks and perseverance while living with Cystic Fibrosis. Walking those fairways made me realise just how far I’d come, and I felt incredibly proud to represent not only Cork and Ireland, but also the CF community on one of the biggest stages in sport. I started playing pitch and putt as a young child and absolutely loved spending time down at Pfizer Pitch and Putt Club with my two brothers and everyone there. As I got older, I became more competitive and loved improving and making teams. Around the age of 12 or 13, I started playing golf casually. I was always trying to keep up with my dad and my two older brothers, who were all really good golfers, and that pushed me to get better. I joined Fota Island Golf Club when I was around 15 or 16 and from that point, I was hooked. Living with CF meant the journey was never straightforward. There were hospital admissions, infections and times when golf had to take a back seat while I focused on my health. For a long time, golf was something I fit around everything else. It wasn’t until 2023 that I 13
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really started giving competitive golf a proper go. I played my first Irish Championship, the West of Ireland, while still working full-time as a mechanic with Audi Cork. At the end of that season, I made one of the biggest decisions of my life. I didn’t want to look back with any regrets and wonder what might have been, so I left the security of a full-time job to give golf everything I had. It was a risk, but with the incredible support of Fota Island Golf Club, my family and those around me, I knew I had to give myself the opportunity to find out how good I could become. 2024 was a solid year and gave me enough belief to keep going. Then everything changed in 2025. I won my first Irish Championship at the East of Ireland, earned my first Irish cap in the
Home Internationals and was selected to represent Ireland at the European Mid-Am Team Championship in Spain. In 2026, I was selected for the Golf Ireland High Performance Panel and continued to build on those experiences. I narrowly missed out on winning the Irish Amateur Open, competed in the St Andrews Links Trophy, and then came the biggest moment of my career. I qualified through Regional Qualifying at The Island before coming through Final Qualifying at Dundonald Links in Scotland to earn my place in The Open Championship. Qualifying for The Open felt like the moment everything came together. It proved to me that living with Cystic Fibrosis doesn’t stop you from chasing ambitious dreams, it simply means your journey to get
there might look a little different. Living with CF means every day starts a little differently to most people. Before I even think about golf, there’s medication, physiotherapy, making sure I eat properly and staying on top of my health. Those routines aren’t optional—they’re just part of everyday life. When people think about training, they usually picture hours on the golf course or in the gym, but for me there’s a lot more to it. Recovery, nutrition, sleep and listening to my body are just as important. There are days when fatigue or an infection means I have to change my plans, and I’ve learned that sometimes the smartest thing I can do is rest. I’ve never really looked at CF as something that stops me doing what I love. It just means I have to do things a little differently to everyone else. Managing my health has become part of my training, and the discipline I’ve learned through living with CF has helped me both on and off the golf course. One of the moments I’ll never forget was walking onto the first tee at Royal Birkdale. Looking around and seeing so many familiar faces who had travelled over from home to support me, alongside all the spectators lining the fairway, 14
was incredibly emotional. Hearing the applause and then realising that I had earned my place in The Open Championship is something I’ll remember for the rest of my life. That moment wasn’t just mine. It belonged to my family, friends, girlfriend, coaches, sponsors, Fota Island Golf Club and everyone who believed in me throughout the journey. I also felt incredibly proud to represent the CF community and to show that having CF doesn’t mean you can’t chase big dreams. Hopefully, my journey gives other people living with CF the belief that anything is possible with hard work, determination and the right support. Cystic Fibrosis Ireland (CFI) has been a great support to me over the years. I’ve personally benefited from the exercise grant, and I’m sure I’ll make use of other supports as I continue my golfing journey. More than anything, though, it’s the community that makes it special. I’ve met so many lovely people through CFI, and it’s great to be part of a community that understands the challenges of living with CF. If there’s one thing I’d like to do, it’s help inspire younger children growing up with CF. When I was younger, I never imagined something like playing in The Open
would be possible. If my journey can show even one young person with CF that they can dream big and achieve things they never thought possible, then that’s something I’m incredibly proud of. Don’t let Cystic Fibrosis put limits on your dreams. Focus on what you can control, look after your health and keep showing up every day. The road might be different to everyone else’s, but that doesn’t mean you can’t achieve amazing things. We as people with CF are fighters. Keep believing, keep pushing and keep the fight going. My goal is to keep improving and see how far I can take my golf. I’m aiming to continue representing Ireland, competing in the biggest amateur events and hopefully earning opportunities in the professional game. The plan is to enter DP World Tour Qualifying School at the end of the year, and we’ll see where the journey takes me. Just as importantly, I want to keep raising awareness of Cystic Fibrosis and showing what’s possible. If sharing my journey gives even one young person with CF the confidence to dream bigger or believe in themselves a little more, then that’s something I’ll always be proud of. Hopefully this is only the beginning, both in my golfing career and in representing the amazing CF community.
Spectrum / Autumn 2026
Edelle Collins
Transplant Athlete european transplant games 2026 “Over five years ago, while recovering from my double lung transplant, I was lying in the ICU wishing I could just stand by the window, look out, and enjoy a cup of tea. This June, I stood on a podium in Arnhem, the Netherlands, as part of the Transplant Sport Ireland team at the European Transplant & Dialysis Games and came home with a bronze medal.“
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As a lung transplant recipient and a dialysis patient, the European Transplant Games were created for people like me. My health since transplant has not reached the level I’d hoped for, and dialysis makes daily life significantly more difficult. Fatigue is a constant battle and building strength now takes much longer. Before travelling to Arnhem, I’d assumed I’d already reached the best level of health and fitness I was likely to achieve after transplant. In Arnhem, however, I met people from across Europe facing many challenges like my own and competing at an incredibly high level. Participating in the Games has opened up a new world for me and has renewed my optimism about what’s possible in the future. The sports I competed in were pétanque (boules) and darts. It was thanks to the Ireland team manager, Harry Ward, who is also a pétanque player, that my game improved quickly. He coached me at Transplant Sport Ireland (TSI) training sessions, and I felt ready to compete once the Games came round. My other sport was darts. Each evening, I practiced at home to refine my technique--hoping to hold my own against Europe’s best players. As my game improved, I realised I could do more than just
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make up the numbers. I realised I should aim higher than simply taking part and I started to believe I could come home with a medal. To my absolute delight, I won a bronze medal. Standing on the podium, I couldn’t help thinking how far I’d come from the days when simply sitting myself up in bed felt like an achievement. Living with CF means that discipline has been part of my life from a young age. I’ve learned about the rewards and consequences of compliance and non-compliance and that much of how I live is within my control. So, I know that sticking to a training schedule reaps rewards and that there are no shortcuts. To achieve my goals, I must do the work. I’ve learned so much from my CF physios over the years and their advice and encouragement has shaped how I approach training, goal setting and routine. Looking back, many of the habits CF forced me to develop as a child became the same habits that helped me to train and compete as an adult.
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I also know when to listen to my body and rest or when to push on when things are going well. I apply this to exercise and training. Posttransplant, I can become very ill very quickly so I accept that sometimes I’ve to pause and focus
on getting well. It can be frustrating especially when I’ve built up momentum in my strength training and energy levels, but I know I’ll rebuild again once my health improves. My first darts match at the Games was against the three-time world champion and current gold medal holder. I didn’t expect to win any of the three legs in the match but at the end of the second leg, we were even and we both needed to land just one winning dart. The Irish team members were standing behind cheering me on as I aimed at number 5 on the dartboard to win the leg. I focused on the throw, said a quick prayer and BOOM! The dart landed right on the 5. A huge cheer went up, and I felt like I’d scored the winning goal for Ireland at the World Cup! It’s a moment I’ll never forget.
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Despite still living with significant health issues, having CF has given me the mental strength and confidence to overcome whatever comes my way. I often recall the extremely difficult months in the ICU with respiratory failure in 2019, COVID in 2020, and after transplant surgery in 2021. I was in a lot of pain and was trying to do what the physio was asking of me. Sometimes that was just trying to lift my head; other times walking a few extra steps. The sense of
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achievement I felt when I’d worked to my limit and succeeded has never left me. Those experiences taught me that progress isn’t always measured in giant leaps. Sometimes it’s measured in two extra steps, and, over time, those small gains can take you further than you’d imagined. I draw on that feeling whenever I face a challenge but need to keep going. Since transplant I’ve faced new health challenges including diabetes, end stage kidney disease requiring dialysis, and breast cancer. Despite it all, living with CF has given me the resilience to face whatever may come next. Nothing prepares you more for difficult challenges than having to relearn how to use each muscle in your body, being ventilated and tube fed for months on end, and being cut off from your family. My life was at risk at times and as I recovered, I recall thinking that what mattered most in my life was my health, my family and my friends. It was refreshing to get such clarity, and I try to spend my time and energy on what I enjoy most. Being a member of CFI has meant I could utilise the exercise grant to support my participation in the Games. It’s reassuring to know that there is support and a network of people there if I need them. Knowing that support is there makes goals feel more achievable.
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My family’s connection to CFI goes beyond the support I’ve received through membership. As a family, we raised a significant amount for CFI which funded CF beds in Our Lady’s Hospital in Crumlin. My uncle, Fr. Kevin Moylan, was the chaplain for CF Ireland for many years and frequently visited CF families throughout the country. Having seen the impact of our fundraising and the impact CFI has on people with CF and their families, I’ve a great appreciation for the organisation’s work and advocacy. Before I got involved with Transplant Sport Ireland, I would have thought competing at a national level was a fantasy. I believed I’d achieved my best level of health despite it being far below my hopes and expectations after transplant. I often think back to those months lying in a bed in the ICU just wanting to lift my hand and not being able to. Now I’m a medal winner for Ireland. I’ve also discovered that I can improve my wellbeing just through participation and meeting others like me. I’d recommend Transplant Sport to anyone who’s not already involved. There’s no greater way to honour your donor than making the most of the opportunities their gift of life has given you. So, if you think you’d like to do something,
big or small, but feel it’s beyond you, I say ‘think again!’ Don’t assume that today’s limitations will be tomorrow’s reality. Treatments improve, circumstances change, opportunities appear and progress comes more quickly than you’d expect. I’ve been well and truly bitten by the transplant sport bug and hope to represent Ireland at the World Transplant Games in Belgium next year. My aim is to win a medal in pétanque and bring home another medal in darts. If my health allows, I’d like to compete in table tennis too. As I look ahead, I also look back and think of how grateful I am to my family and friends who’ve been my strength and my voice through respiratory failure, COVID, transplant, dialysis and everything that’s followed. They’ve walked this journey with me and always believed good days like these would come. I wouldn’t be here without them. I’m eternally grateful to my donor and their family for making a very difficult decision at the worst time in their lives. My success is my donor’s success and they’ll never be forgotten. Being a member of Transplant Sport Ireland and representing my country honours my donor’s gift of a second chance of life. I’d urge everyone to have the conversation today with their family and let them know your wishes around organ donation.
Spectrum / Autumn 2026
“Hope and belief in your dreams and goals is vitally important. They give me purpose and reason to go on. There’s no secret ingredient to mental strength or resilience, it’s there inside of us all, all along. We just have to open all the doors and let the light in.”
Victor Conroy Transplant Athlete european transplant games 2026 18
Being selected to represent Ireland at the European Transplant Games is a tremendous feeling of pride, nervousness and excitement. There’s the anticipation of competing in the highest level of sport and meeting friends from all over the world who have been through a similar experience. If you have had a transplant, are on dialysis or a living donor, everyone is welcome to join the Transplant Ireland Team. At this year’s European Transplant Games in Arnhem, Holland, the Irish team consisted of 25 athletes including 22 transplanted, 2 on dialysis and one living donor. These events are extremely important in raising awareness of organ donation. They create awareness and opportunity to share information about being a donor and receiving an organ transplant. They preserve a future of hope and compassion for people on waiting lists in a World that really needs it, now more than ever. It’s an incredible event comprising of a wide variety of sports competitions. All are welcome, family, friends and supporters. Every time I put on the Irish jersey, I have to remind myself it’s not a dream, it’s real. It’s a powerful emotion to walk into a stadium full of Irish flags flying, with overwhelming vibrations in the air of support and positivity. Your heart swells with the pride of 19
a nation and there in that moment in time, you realise that this is why you spend all those hours in the gym, repeating drills and continually trying to master your chosen sport. All the effort, time and dedication on the journey led to here. My main sport is Olympic Recurve Archery; however, it was not available in these European Games. For these games, I competed in darts singles and trebles, pétanque and ten pin bowling. One of the many positive aspects of the Transplant Games is that there’s something for everyone. I’ve been fortunate enough to have success in previous games, winning two gold and a silver in the European Games in Lisbon. Winning the silver medal in Olympic Recurve Archery in the World Transplant Games, Dresden, 2025 will always be one of the best days for me. It was the first time in history Ireland had a medal in archery from the World Games. My first introduction to archery was in 2005, when I was in college in Galway studying zoology. During this time, I was in hospital regularly with chest infections. I couldn’t participate in a lot of the more active sports due to reduced lung capacity and most of my time outside of study was taken up with medications and physiotherapy. I decided by pure chance to try one
of the beginners’ courses and from the first arrow fired from my bow, I was hooked. Archery is a beautiful art and sport of patience, mastering your breath, focus and discipline. It was a great benefit to improving my respiratory muscles, posture and overall strength. As the years progressed, I managed to win three National titles and compete for Ireland in the European Archery Championships in England. Later, I was employed as the University Coach for the archery team. Personally, I don’t believe there’s a defined blueprint or delineated path to success with cystic fibrosis. I’m of the belief that you do what you can, with what you have at the time you’re in. If I achieved anything in my life, it was only because I was lucky enough and very grateful to get a double lung transplant from an amazing donor and be surrounded by incredible, positive people a lot more knowledgeable on life, medicine and sport than myself. Thanks to their unending kindness, world class medical care and dedication to guiding, inspiring and motivating me to never give up fighting, I’ve enough courage to wake up each day and take on any challenge I meet head on. My best advice would be simple enough, strictly adhere to taking your medication and doing your physio on time. For strength Spectrum / Autumn 2026
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training and navigation on how to start, forget YouTube and social media, talk to your medical team and physiotherapist for help on a specific individual training plan. In an era of information overload, it can seem overwhelming on what to do next. Find something you feel you’ll enjoy and it’ll motivate you to get fitter. Don’t focus on the end, such as competitions and medals. Enjoy the journey getting there, meeting new friends, feeling the benefits of being healthier, wanting to eat a better-quality diet to have more energy for your sport and all the good stuff for your brain. My own mental health was greatly improved by having something I’m passionate about, learning new skills and developing confidence and coordination.
m a e
You don’t have to be the best, just have the best fun doing it. Getting a double lung transplant was life changing for me and a complete game changer in terms of the activities and sports I could choose to do, such as kettlebell lifting, sea and river kayaking. I will always be grateful to my donor. I live my life in honour of the person who gave me the gift of life. I also live my life to honour all the staff in hospitals I’ve attended throughout Ireland, my pharmacists, my GP, family, friends, coaches, teachers who have always been there for me and never let me quit on myself or let Cystic Fibrosis define me. As a person with CF, I’m proud to be a member of CF Ireland and very grateful for their support, without which I couldn’t have competed in
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the games. Each year, it is on the athlete to finance their own travel and entry fee.
CF Ireland have helped me with exercise grants and assistance in funding my dream of competing in the games. Nine years ago, I was sitting on my hospital bed, on oxygen, eating pizza, with no idea of the adventures ahead. Hope and belief in your dreams and goals is vitally important. They give me purpose and reason to go on. There’s no secret ingredient to mental strength or resilience, it’s there inside of us all, all along. We just have to open all the doors and let the light in.
Val weblin
Transplant Athlete British transplant games 2026 Pictured: Orla (niece), Julie (Val’s wife), Val, Thomas (Val’s son), Rosaline (Val's living donor) and Annette ( Val’s sister-in-law) at the British Transplant Games 2026
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Spectrum / Autumn 2026
This was my second time taking part in the British Transplant Games. It took place in Sheffield and it is such a family orientated event that my wife and son travelled with me, as well as my wife’s aunt and my living donor, Rosaline. Last year I competed in darts, table tennis and snooker. This year I competed in ten pin bowling, darts and snooker as well as six a side football. I had a fantastic competition and brought home a gold in ten pin bowling and a silver in snooker. I also retained my bronze medal in darts – which I was so happy with, and as a member of the Transplant Sport Ireland football team we finished fourth in the competition. What is special about the event is that no matter what your ability is, if you are into sport in any way, there is something for you. I play Darts with my son and train with Transplant Sport Ireland six a side football team. This year I wanted to try different things, stuff I wouldn’t usually be able to do and the Transplant Games gave me the opportunity to do that.
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Pictured: Rosaline (Val’s living donor), Julie (wife), Thomas (son) and Val.
My living donor, Rosaline and my son Thomas, took part and because everyone competing has essentially been given a second chance, there is a great, happy feeling around you. Even with the positivity of the event, I have to say there were two highlights of this year's event for me. The first was finishing the bowling tournament with three strikes – unreal! I thought I might have won something, but when they announced ‘gold’ in my age category, I couldn’t believe it. The second moment for me was during our football match. This year I played with the Transplant Sport Ireland team. We have been training hard lately as we are going to the Transplant World Cup in Germany in September. Our team played a stormer and I scored my first goal for
m a e
There is also a donor walk/run where people who have received organ donations walk side by side with families of donors and living donors too – which is incredibly emotional, but rewarding for everyone.
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“Because everyone competing has essentially been given a second chance, there is a great, happy feeling around you.” Ireland which helped us win the match. At the Games themselves, the craic is mighty and you never know who you are going to meet. I bumped into another person with CF posttransplant in the bowling tournament from the UK, and it is great to be out and about meeting others. It is such a great thing to be a part of.
l e Ir
If I could give anyone any advice, it would be to go for it. If you think it sounds like something for you, get in touch with Transplant Sport Ireland on all social media platforms and I guarantee there will be something for you. It is a wonderful thing to be a part of, and I am already looking forward to next year." For information on how to get involved, visit www.transplantsportireland.ie
Spectrum / Autumn 2026
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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 so please keep up the great work. Here is a short summary of some of the remarkable efforts of our Volunteers.
65 Roses Day 2026 - April This year's 65 Roses Day was another wonderful example of what can be achieved when our community comes together. Whether you volunteered at Dunnes Stores, in your local shopping centre, hosted an event in your workplace, or took on a 65 Roses Day Challenge, thank you. Your enthusiasm, generosity and willingness to get involved helped make the day such a success. We were inspired by the creativity and determination shown by so many supporters participating in 65 Roses Challenges this year. From 65km ultra marathons and 65-hour fasts to cupcake sales, 6.5km walks and countless other "65" themed events, every effort, helped raise awareness and vital funds for people living with Cystic Fibrosis. It is because of supporters like yourselves that we are able to continue hosting 65 Roses Day each year. Your support strengthens our community and helps ensure that people living with cystic fibrosis can access the services, advocacy and support they need. To everyone who gave their time, donated, organised an event or simply helped spread the word, thank you. We are so grateful for your continued support and look forward to seeing you again next 65 Roses Day, Friday 9th April 2027.
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Duleek 10K A massive thank you to Ann Noone and the organising committee for the Duleek Cystic Fibrosis 10K Remembrance Run on Sunday, April 26th. Your hard work kept this meaningful tradition alive, honoring cherished memories while bringing the community together. Most importantly, thank you to everyone who showed up and took part. Because of your incredible support and generosity, the event raised a phenomenal €41,024. This will help to fund vital support, services and research for the CF Community in Ireland. We are already looking forward to next year and cannot wait to see this fantastic community spirit continue to grow.
One in 1000 / Vhi Women’s Mini Marathon A huge congratulations to everyone who joined our One in 1000 Team for the Vhi Women’s Mini Marathon on Sunday, May 31st! It was fantastic to gather at The Black Door on Harcourt Street for our pre-race warmup before tackling the 10k. Thanks to your incredible efforts, we have raised an incredible €54,060 on iDonate so far! It was wonderful to celebrate with you all afterward with great music, food, and company. A special thank you goes to our sponsor, Fyffes, for keeping our participants fueled with bananas, and to Team Three Six Five for leading such an energetic and enjoyable warmup session. If you need any help lodging your fundraising totals, please contact us at 01 4962433 or email fundraising@cfireland.ie. Don’t forget to share your event pictures using #1in1000 and tag us @cfireland!
Head 2 Head Walk There were great celebrations in Sandymount and Bray for the 2026 Head2Head Walk, after a memorable day of walking together. Huge congratulations to all our walkers on this fantastic achievement, and a sincere thank you for your incredible fundraising efforts in support of the cystic fibrosis community. We would also like to extend our heartfelt thanks to the volunteers who generously gave their time and to the dedicated Head2Head Walk Committee, whose hard work and organisation ensured another successful event. The day was a wonderful celebration of community, commitment and support, and we look forward to sharing more of the photos and memories from this year's walk in the weeks ahead. 25
Spectrum / Autumn 2026
Building Impact through Workplace Partnerships Corporate partnerships and workplace engagement initiatives play a vital role in helping Cystic Fibrosis Ireland raise awareness, strengthen community connections, and generate essential support for people living with Cystic Fibrosis and their families. Recently, CFI had the opportunity to take part in a number of workplace and community events that highlighted the positive impact organisations and their employees can have when they come together in support of a shared cause. CFI are honoured to be selected as Staff Charity Partner to Irish Life, kindly nominated by our members, Eimear Neary and Cathal O’Toole, who both have a close connection to the CF community. We were delighted to attend the Irish Life annual Workplace Wellbeing Day Fair where employees and charity partners met in a welcoming space to learn more about health, wellbeing, and community initiatives. This gave us an opportunity to raise awareness of cystic fibrosis and share information about the supports, services, and advocacy work provided by CFI. Meaningful staff engagement continued beyond the event itself, with employees volunteering on 65 Roses Day helping to raise vital awareness and funds for people living with CF. CFI was also delighted to attend the launch of the Cook Medical Mini Marathon 2026, hosted by Cook Medical and Eventmaster. The event brought together charity partners, company representatives, and members of the media to mark the beginning of another exciting year for this much-loved community event. A highlight of the launch was hearing from our member and CF Ambassador from the CFI Limerick Branch, Carol McGrath, who shared her family's personal experience of living with Cystic Fibrosis. Alongside her daughter, Abigail, Carol’s story underscored the importance of awareness, connection, and the ongoing support available through CFI. Events such as these provide valuable opportunities not only to fundraise and build awareness of Cystic Fibrosis but also to engage with supporters, volunteers, and organisations that are committed to making a positive difference in their communities. These partnerships demonstrate the power of collaboration and the meaningful difference that can be achieved when businesses, employees, supporters, and charities work together to support people and families living with Cystic Fibrosis. We are always delighted to welcome new workplace partners. If your organisation would like to support Cystic Fibrosis Ireland through fundraising, volunteering or employee engagement, we'd love to hear from you and explore how we can work together. Please contact fundraising@cfireland.ie and a member of the team would be happy to support you. 26
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HONOURING CATHY SHORTT: A LIFE OF DEDICATION AND SERVICE
“It's hard to explain the impact Cathy Shortt had on my life, and in trying to write it down, I realise what an impossible task that is.....”
Gwen Healy, pwCF
It may seem dramatic to say, but in my world of CF, Cathy Shortt was a lighthouse to me, and I have no doubt to many other patients as well. She was a source of light during difficult times, providing compassion, guidance, love and humour whenever they were needed most (and she gave great hugs!). She provided direction and safety amid uncertainty, and there was always a sense of relief when you heard her shoes "clip-clopping" onto the ward. Cathy was a beacon of reassurance, Cathy would know what to do. On first appearances her sometimes brisk, no-nonsense approach may have appeared unsympathetic, even curt. However, getting to know Cathy, 28
catching that mischievous grin, the glint in her eye, and experiencing her wicked sense of humour was seeing the real Cathy. Cathy saw beyond the chronic illness of Cystic Fibrosis and looked for the individual. Her faith in us as people is what made her such a remarkable caregiver. She didn't mollycoddle us or treat us with kid gloves. She respected our decisions and choices and encouraged us to be active participants in our own medical care. She could just as easily give out to you, tell you the stark reality of a situation, and then, moments later, give you a hug. She was the CF mammy. Cathy was a tireless advocate for the CF community, not only in Cork but also nationally and
internationally. As a result, she was deeply respected not only by her patients but also by her colleagues and peers. She was with me through some of the highest and lowest points of my life and was there to share in both my sorrows and my joys on many occasions. When she announced her retirement, it brought a mixture of emotions. I was happy that she would finally have the opportunity to focus on herself, but sad that I would no longer see her as regularly. Sadly, this was not the retirement she deserved. It seems a particularly unfair twist of fate that she should have had to spend so much time as a patient in the very hospital where she had spent so many years caring for others and giving so generously of herself. Cathy leaves behind an extraordinary legacy within the CF community in Cork. She will forever be remembered for the steadfast work she carried out, initially on her own and later as part of a growing team that developed into the fantastic unit we are fortunate to have today. The decision to rename the Adult CF Unit in Cathy's honour is a fitting tribute to a wonderful, kind, generous, compassionate and loving woman. It is my hope that every new patient who walks through those doors, even those who never had the privilege of meeting her, will come to know who Cathy was and understand the care, dedication and love she gave to the CF community in Cork. In that way, her legacy will continue to shine for generations to come. Gwen Healy, PwCF
“She was a constant source of strength, reassurance, and hope.” Liam McCarthy, parent
There are some people who come into your life at the darkest of times and leave an imprint that can never be erased. For me, that person was Cathy Shortt. Even after 27 years I can still recall my very first conversation with her. As a parent of a child living with Cystic Fibrosis, you fear that the journey ahead would only be filled with challenges, fears, hospital admissions, difficult decisions, however she reminded me that there would be moments of great joy and celebration as well. Through all those moments, good and bad, Cathy was there. It is difficult to put into words the impact she had on the life of my family. She was a constant source of strength, reassurance, and hope. 29
Cathy had little time for fuss and never sugar-coated the truth. But behind that no-nonsense exterior was a woman with enormous compassion, a mischievous sense of humour, and a heart that seemed big enough to hold every patient and family she cared for. Her smile, her laugh, and her quick wit could brighten even the darkest day. She met us where we were, grieving with one family and celebrating with another, often on the same day. What made Cathy truly exceptional was that she never saw Ben as a diagnosis. She saw the person first. She saw hopes, dreams, personality, strengths, and potential. She believed in him and encouraged him to dream.
As a parent, we entrust healthcare professionals with the people we love most in the world. That trust is earned, and Cathy earned it every single day. I knew that when Ben was in her care, he was being looked after by someone who was not only highly skilled but genuinely invested in his wellbeing and never lost sight of the child behind the illness. But it wasn’t just my child, it was every child in the clinic, and by extension the entire CF community, because she knew that a breakthrough for one was a breakthrough for all. Cathy was a tireless advocate for the CF community in Cork and far beyond. She fought for better care, better services, and better outcomes for those living with CF. Spectrum / Autumn 2026
I will always be grateful for the care, compassion, honesty, and love that Cathy showed to Ben. I will remember her not only for what she did, but for who she was, a remarkable woman who made people feel seen, valued, and cared for. The generations of patients who walk through those doors in the years ahead may never have the privilege of meeting Cathy, but they will benefit from the legacy she left behind. Her light continues to shine in every corner of the unit she helped create, and in the hearts of all who were fortunate enough to know her. Thank you, Cathy. Your care changed lives, and your kindness will never be forgotten. Liam McCarthy, parent and Chairperson of the CFI Cork Branch
Pictured : David Morrissy, Claire Meade, Claire Fleming, Cathy Shortt, Mairead McCarthy, Karen Cronin, Ciara Howlett, Pat Shanahan
Pictured: Barry Plant, Jennifer Kearney, Pauline Gill (Cathy’s Sister), Cathy Carlton, Claire Fleming, Mairead McCarthy, Sarah Tecklenborg
25th January 2026 marked the first anniversary of our cherished friend and former colleague, Cathy Shortt. The memories each and every one of us holds of Cathy will keep her spirit alive, as she so rightly deserves. Cathy’s contribution to CF care is widely recognised, and we consider ourselves privileged to have worked with her and to have learned from the very best. It is an honour to carry forward the legacy of her remarkable work. Cathy’s extraordinary dedication to CF patients, and her invaluable support to their families over her 26 years in CUH, will never be forgotten. She left a lasting impact on everyone she met. I think everyone would agree that Cathy was truly one of a kind. Thankfully, we have inherited some of her ways, so the essence of Cathy will forever remain in our unit. Sadly, Cathy’s retirement was cut short due to illness, which she faced with immense bravery and courage. It was a comfort to us to be part of that journey with her and her family. Her personality shone throughout her illness—never complaining, her wit and her approach to all she faced epitomised the person she was. She was fortunate to have a truly loving and supportive family, which she appreciated so deeply. Cathy had two dogs who were her loyal companions, Sonny and Lady. They brought her great comfort and happiness, and she always spoke of them with deep affection. So devoted were they to her that, after her passing, they did not remain long without her—a testament to the deep bond they shared. Cathy will always hold a special place in our hearts. Her influence remains in our work, in our team, and in the care we provide every day. The CF team, Cork University Hospital 30
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ReWriting Tomorrow: Connecting Communities
Pictured: Nicola Delaney Foxe CFI; Tiernan McCann Owner LoverBoy Cafe; Rory Tallon CFI; Maeve Redmond Owner LoverBoy Cafe; Bernie Priestley Chairperson CFI; Tony Fagan Dublin City Council.
The Rewriting Tomorrow exhibition was proudly launched as part of 65 Roses Day 2026, bringing energy, hope, and powerful storytelling to the heart of the campaign. Not only did it help raise vital funds through our flagship campaign, but it also gave the public a deeply moving insight into the realities of living with Cystic Fibrosis. We were especially thrilled to see the exhibition reach an even wider audience when it was featured on Nationwide, on RTE 1. Filmed in April, it aired on the 24th June. In May, the CFI team were thrilled to once 31
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again spotlight these powerful letters and drawings, sharing them with new audiences as part of A Thriving City For All — Dublin City Council’s vibrant festival celebrating inclusivity and community. From the 21st to the 31st May, Dublin came alive with a vibrant programme of events celebrating people, projects, and partnerships. The festival focused on shaping a more inclusive and connected city. ReWriting Tomorrow formed part of this inspiring festival and was proudly funded by Dublin City Council. We are also grateful to Síos an Bóthar, home to LoverBoy cafe and Jacks, for hosting the exhibition in their welcoming new shared
space in Clontarf on the northside of the city. Once again, this powerful exhibition offered new audiences a meaningful insight into the lived experiences of the Cystic Fibrosis community in Ireland and the challenges that exist. Alongside providing the exhibition space, LoverBoy hosted both a launch and a closing event, creating valuable opportunities for the CFI team to connect with people from across the CF and wider communities. Throughout the 10-day exhibition, several special guests also visited to show their support for the initiative and its important message. We were delighted to welcome
‘The Future of our Community is in Safe Hands’ by regular Spectrum contributor, Brendan Lonergan, as part of ReWriting Tomorrow 2026
members of the rare disease community, collaboration and understanding in policy local councillors, Dublin City Council making.” staff, members of the Oireachtas, and the wider local community. Deputy Barry Heneghan and Cllr Kevin Barry also attended the exhibtion where Councillor Clodagh Ní Mhuirí attended on they learned more about the condition behalf of then Lord Mayor of Dublin, and the cause it represents, engaging Councillor Ray McAdam, and directly with those affected. acknowledged the significance of Conversations were started, awareness collaboration between local government, raised and connections made. communities, and creative organisations. Deputy Heneghan commented, “I have been a strong campaigner for people Cllr Ní Mhuirí commented, living with Cystic Fibrosis for many years, “It was a pleasure to join CFI at the and it will remain one of my key priorities awareness exhibition. It is crucial for over the next three years in the Dáil. local Government representatives to hear the stories of people living with CF and We need to continue pushing for better their families and to work with services, supports and outcomes for organisations like CFI towards greater those living with CF and their families. 32
I want to commend all the families and Cystic Fibrosis Ireland for the incredible work they do day in, day out. Events like this are so important in raising awareness and supporting that work.” As a direct result of the exhibition, we were invited to meet Tanaiste Simon Harris at a local constituency meeting. This gave us a very welcome opportunity to reconnect with Minister Harris, who as many may be aware was instrumental in securing the modulators following campaigning by the CF Community. Visitors warmly received the exhibition, taking time to reflect on the powerful stories and perspectives shared. Spectrum / Autumn 2026
It not only raised awareness but also fostered understanding and meaningful connections across communities, helping to bring to life the vision of Dublin as a truly Thriving City For All.
“The stories were so moving, such a great cause and a lovely exhibition.”
Rory Tallon CF Advocate with Sara Nolan, Rare Disease Advocate
A strong spirit of collaboration underpinned the success of the exhibition, from its community partnerships to the welcoming space that hosted it. Jack Ruttledge, owner of Jack’s, highlighted how this shared vision made their involvement especially meaningful: “We were delighted to be part of this collaboration. The project’s focus strongly aligns with our own — creating an inclusive, shared space where people can come together. The exhibition was incredibly moving, and the conversations, connections and creativity sparked here will continue long after the festival ends.”
David Howard, letter writer and his partner Gabbi
For those who haven’t yet had the chance to experience the exhibition, plans are already underway to bring ReWriting Tomorrow on a national roadshow later this year. As ever, collaboration remains at the heart of this project, and we would love to hear from members of the community who would like to get involved. Until then you can watch and listen to some of the letters by visiting https://www.cfireland.ie/supportresources/members-events/rewriting-tomorrow
Cllr Kevin Barry; Sarah Tecklenborg CFI; Brendan Lonergan, Artist, Deputy Barry Heneghan; Cllr Clodagh Ni Mhuiri
Nicola Delaney Foxe CFI with Tanaiste Simon Harris
The Loverboy and CFI teams pictured with Cllr Clodagh Ní Mhuirí Deputising for the Lord Mayor of Dublin, Jack Ruttledge owner of Jacks, and Barry Heneghan T.D..
Spectrum / Spring Letter writer Kelli Maples with her brother Carl2026
The 2026 European Cystic Fibrosis Society Conference brought together leading clinicians, consultants, researchers and healthcare professionals to examine the latest developments shaping CF care and research.
So we asked those from the Irish delegation to outline their key reflections from the conference, the ideas that stood out, the debates that surfaced, and the themes likely to influence the year ahead. Ciara O’Connor, SVUH, also gives an overview of her ECFS presentation Representatives from Ireland attended, both to ‘Physio in Action’. To read about all the talks in learn from the many talks and presentations, more detail, you can find the abstracts from ECFS and to present their findings and most up-to- 2026 in June edition of the Journal of Cystic date information to the CF Community. After Fibrosis. Visit such a conference, it is often hard to distil a https://www.cysticfibrosisjournal.com/issue/S15 single take home message. 69-1993(26)X2002-1
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Spectrum / Autumn 2026
Physio in action: Targeted strategies to ease the breathless Cystic Fibrosis patient
by Ciara O’Connor, Senior Physiotherapist St Vincent’s University Hospital Dublin
I am a senior physiotherapist working at St. Vincent’s University Hospital where I have worked for the past 19 years. I am the newly appointed chair of the European physiotherapy specialist interest international group (ECFS PhySIIG). I was delighted to be asked to speak at the European Cystic Fibrosis Conference in Lisbon in June. The title of my presentation was “Physio in action: Targeted strategies to ease the breathless cystic fibrosis patient”. During my talk, I discussed what breathlessness is, why it happens, and, most importantly, what we can do to help manage it. One of the main messages of my talk was that there is no single solution to managing breathlessness but instead we can build a personalised toolkit. The contents will be different for everybody, and the tools you need today may very well be different to the ones you need when you feel unwell. The CF landscape is changing for all but even for those who have access to CFTR modulators, symptoms may vary. This highlights why physiotherapy remains highly individualised. Before adding anything new to your toolkit we need to understand what it already contains, which is why your physiotherapist will ask you about your daily routine. This is to understand what is working well and what small changes may help. These questions include:
There is no single solution to managing breathlessness but instead we can build a personalised toolkit.
Which inhalers and nebulisers do you use? How often do you take them? What airway clearance techniques (ACTs) do you use? Do you use devices such as a PEP mask, Aerobika or non-invasive ventilation (NIV)? How long does your treatment routine take? What order do you carry out your routine? What type of exercise do you enjoy, and how often do you do it? How long do you spend exercising?
Inhalers, nebulisers and ACT are some of the more important tools in the box. Bronchodilators open the airways by relaxing smooth muscle while hypertonic saline and pulmozyme work using different mechanisms to reduce the viscosity or consistency of sputum. 35
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Airway clearance techniques rely on moving sputum from smaller airways to larger airways where it can be cleared. Keeping the airways clear can improve airflow in the lungs, reducing the risk of an infection. Combining these tools together can make treatment more efficient. For example many may stack their treatments by nebulising hypertonic saline through an Aerobika or PEP device and carrying out ACT between sets.
A good toolkit is flexible. When you are feeling well, your routine may be shorter and focused on staying healthy. If symptoms increase, you may need to use more of your tools... Working with your CF team will allow your toolkit to adapt depending on your needs and allow you to continue doing the things that matter to you.
For those on CFTR modulators, many have seen a reduction in exacerbations, sputum burden, and improved pulmonary function. There are studies emerging in the post modulator era, such as STORM and SIMPLIFY looking at reducing treatment burden particularly in those with mild disease. However, your toolkit shouldn't change without speaking to your CF team. Airway clearance still has a role especially in those who started modulators later in life, even in those who no longer feel productive, “checking in” with your airways is a good practice and keeps these skills fresh if symptoms change.
Ciara OConnor, Senior Physio SVUH at ECFS 2026
Regular exercise is one of the most effective ways of supporting our health, improving our fitness, and reducing feelings of breathlessness. When we become less active, breathlessness becomes more noticeable which can lead to further inactivity and a worsening of symptoms. This is a cycle that can be hard to break. One way to try to overcome this is by movement snacks or short bursts of activity throughout the day. These can be built up as fitness improves. A good toolkit is flexible. When you are feeling well, your routine may be shorter and focused on staying healthy. If symptoms increase, you may need to use more of your tools, perhaps by increasing your inhalers, nebulisers or airway clearance. No two people with cystic fibrosis are the same and therefore no two toolkits are the same. Your toolkit may include inhalers, nebulisers, ACT devices, exercise, and a plan when you are symptomatic. For a toolkit to work well you should know which tool works well and when to use them. Working with your CF team will allow your toolkit to adapt depending on your needs and allow you to continue doing the things that matter to you.
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Spectrum / Autumn 2026
ECFS 2026: Highlights from the Conference Floor Clare Reilly – Clinical Specialist Physiotherapist in Cystic Fibrosis at the National Referral Centre St Vincent’s University Hospital, Dublin I was privileged to attend the European Cystic Fibrosis Society annual conference in Lisbon from 3rd-6th June, and for me it was one of the highest quality European conferences I have attended. It kicked off for me on Tuesday 2nd June at the Physiotherapy and Exercise Working Group short course which covered exercise testing and prescription across a lifespan. As one of the organisers of this course I was delighted by the calibre of speaker and the engagement of the attendees where we learned about exercise testing and the prescription of exercise from Paediatrics to Adults Clare Reilly, Clinical Specialist Physiotherapist SVUH and through a range of comorbidities. at ECFS 2026 On Wednesday I assisted with the Lone worker workshop- a course designed to deliver some Allied Health messages to consultants who work in low and middle income areas of the world, where there is no access to a multidisciplinary team. I met 33 consultants from a range of countries where they had just appointed their first paediatric physician. This interaction was an eye-opening experience to hear first hand the range of outcomes for pwCF throughout the world. In 25 years in CF care, I hadn’t experienced such stories. The major theme for me throughout the conference was the newly released STORM trial data. CF STORM is a clinical trial looking at new ways to reduce treatment burden for people with CF. Full data was released in Lisbon pending publication, including primary and secondary outcomes. We look forward to going into more detail about this in a future edition of Spectrum.
“The themes of frailty in an aging CF population and Airway Sampling in the modulator era were hot topics and I sat in on the floor of packed conference theatres hearing about new screening tools and strategies for prevention of frailty and new ideas on how to sample airway pathogens when sputum volume is low.”
Finally, the themes of frailty in an aging CF population and Airway Sampling in the modulator era were hot topics and I sat in on the floor of packed conference theatres hearing about new screening tools and strategies for prevention of frailty and new ideas on how to sample airway pathogens when sputum volume is low (thank goodness). I look forward to meeting some of you in a clinic soon and I can discuss in more detail anything that catches your eye.
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Dr Lucy Perrem, Paediatric Respiratory Medicine Consultant at Children’s Health Ireland, Dublin One of the strongest themes at this year’s European Cystic Fibrosis Conference was the recognition that CF care is entering a new era. With many people now benefiting from highly effective modulator therapies, centres across Europe are carefully rethinking how care should be delivered in the future. Rather than a “one size fits all” approach, there was growing support for tailoring the frequency of clinic visits to individual needs, with a blend of face-to-face and virtual appointments. Importantly, speakers emphasised that this should not mean reduced access to specialist care. Virtual reviews should continue to involve the wider multidisciplinary team, rapid access to advice and urgent assessment when needed. At the same time, researchers highlighted that important challenges remain. Studies presented at the conference showed that pulmonary exacerbations can still have a lasting impact on lung health, even in the modulator era. There was also considerable discussion around treatment adherence, with emerging data suggesting that taking modulators consistently remains one of the most important factors influencing outcomes. My overall impression was one of cautious optimism: people with CF are healthier than ever before, but the next challenge is developing care models that preserve these excellent outcomes while adapting to the changing needs of patients and families.
Dr. Lucy Perrem is a paediatric respiratory medicine consultant at Children’s Health Ireland, Dublin, having joined in 2023. Previously, she was a respiratory consultant at The Hospital for Sick Children, Toronto. She is a Clinical Assistant Professor at University College Dublin and a clinical researcher with a Master of Science in Evidence-Based Health Care from the University of Oxford and a PhD from the Royal College of Surgeons in Ireland. She has authored more than 30 peer-reviewed publications. Her clinical and research interests include cystic fibrosis and severe asthma.
Spectrum / Autumn 2026
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Dr. Dermot McMahon Senior Clinical Psychologist in Cystic Fibrosis St. Vincent’s University Hospital Dublin
“This was my first time attending ECFS. It was a fantastic opportunity to learn more about the great work happening internationally in CF care. As for my top takeaway; ECFS reinforced that the best care is flexible, needs-led, and tailored to what matters most to the person attending our service at any given point in time.”
Dermot is a Senior Clinical Psychologist at the National Referral Centre for Cystic Fibrosis, St. Vincent’s University Hospital, in Dublin. He has extensive experience providing psychological assessment and therapeutic support for individuals with complex physical and mental health needs across all age groups. Dermot has particular interest and expertise in engaging those affected by trauma, including medical trauma. He is passionate about understanding each person’s story and sees therapy as a space to explore what matters most to them in the context of their life, relationships, and health. Dermot’s approach to therapy is flexible and collaborative. He draws on a range of evidence-based models. His work is most often grounded in relational, compassion-focused, and psychodynamic principles, with a particular interest in transpersonal and Internal Family Systems (IFS) models of therapy. Dermot works together with Daniel Goldstone (Senior Clinical Psychologist) to provide a modern psychology service to patients attending the National Referral Centre for Adult CF at St Vincent’s Hospital. At SVHG, we recognise that health challenges do not happen in isolation, but in the context of people’s wider lives, relationships, and day-to-day experiences. Each person’s experience is unique and many people find it helpful to take time to consider how different aspects of life interact with their health and wellbeing. We encourage people attending our CF service to speak with any member of the team if they would like to learn more about meeting with Psychology. We are happy to meet with people to explore how they might benefit from our service or from other talking therapies that may be more accessible closer to where they live.
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Godfrey Fletcher, Chief Executive Officer, Cystic Fibrosis Registry of Ireland I have missed very few European CF Conference meetings since my involvement in CF. This is a very important meeting for CFRI and not just for the quality of the scientific content that is presented each year. From a registry perspective, members of the European Cystic Fibrosis Registry have dedicated registry sessions where we meet and discuss existing and new registry initiatives. Ireland has played its role in the development and success of the European CF Registry. At this year's meeting in Lisbon, we had the honour of having my colleague Prof Laura Kirwan appointed as Director of the European Registry (ECFSPR) for the next three years. This is a huge achievement for CFRI as this is the first time a non-medic has been appointed as head of the ECFSPR. Laura is our Head of Research and is a statistician. This is the second time someone from Ireland has led ECFSPR, the first was Prof. Ed McKone approximately 9 years ago. Prof McKone drove the programme to have the European Medicines Board recommend the use of registry real world data in evaluating drug safety. I am sure Laura will achieve equally successful outcomes.
Caroline Heffernan, CF Advocate, Cystic Fibrosis Ireland Perhaps as a person with CF and one who has lived her life always believing in the powerful and enabling process of shared decision making it struck a particularly resonant chord. The first session I attended set the tone it seemed for the whole conference. The emphasis was on the value of shared decision making. A person with CF and his consultant spoke of how good decisions happened when they made them together. They used physio as an example and both emphasised that when making the decisions which impact on the life of the pwCF both were equal and respected partners in the conversation. I was impressed. I know that shared decision making can sometimes feel uncomfortable and requires a commitment to meeting in the middle and communicating with respect in the pursuit of the best possible outcome. However, hearing so many esteemed speakers echo the message of my first session gave me confidence that, as a person with CF, my input into conversations about my health is valid and respected. Ultimately, the best healthcare decisions I make in the future will be made in partnership with my various healthcare teams.
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News from the CFRI What is the Cystic Fibrosis Registry? The Cystic Fibrosis Registry of Ireland (CFRI) is the patient registry for those living with Cystic Fibrosis in Ireland. A patient registry is a secure, centralised database, containing specific health data on people with a particular diagnosis or condition. The role of CFRI is to collect and record information on the health status of people with Cystic Fibrosis in Ireland who agree to participate. By collecting and analysing information on people with CF in Ireland, the registry can help better understand their health and wellbeing, and the treatments they receive. We analyse this data for different purposes, all with the wider aims of strengthening Cystic Fibrosis research, improving CF care, and ultimately of improving the health outcomes for those living with CF.
The CFRI team is expanding In March 2026 CFRI were delighted to add Catherine Fallon to the team. Catherine is a Postdoctoral Researcher at the Cystic Fibrosis Registry of Ireland. She has completed her PhD thesis in Nutrition and Exercise from University College Dublin and wrote her thesis on protein supplementation and online resistance training in older adults with sarcopenia. She has worked across a range of academic roles, including lecturing, examination invigilation and contributing to programme accreditation and delivery. Prior to starting the PhD, she worked as a Research Assistant in Ulster University. Her research focuses on nutrition and exercise for muscle health, with expertise in malnutrition, sarcopenia and physical functional outcomes in clinical populations.
Other news, work and collaborations
Welcome to Catherine Fallon
CFRI warmly congratulates Prof. Laura Kirwan on her appointment as Director of the ECFS Patient Registry. Laura officially began her three-year term in June 2026, becoming the first Director to lead the Registry from a non-clinical background. We wish Laura every success in this important role and look forward to the continued development of the ECFS Patient Registry under her leadership. CFRI recently completed its annual census of CF centres in Ireland. A total of 1,531 PwCF attended a CF clinic in Ireland in 2025, 92.9% of these individuals were consented to provide data to CFRI. ECFS Patient Registry recently published their 2024 annual report with data from 46 countries and over 57,000 individuals providing data, this includes 1,378 individuals from Ireland. The annualized dataset is used for many research projects as well as post authorisation safety studies of CF therapies.
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ECFS 2026 - Lisbon, Portugal
Some of the team attended the ECFS annual conference in Lisbon. CFRI was well represented with two posters,” Newborn screening and early outcomes in cystic fibrosis: ECFS Patient Registry Data”, “Mapping current practice & preferences in the use of PROMs in the clinical setting in Ireland and an international review of the inclusion of PROMs in Cystic Fibrosis patient registries”. Prof. Laura Kirwan presented at two sessions on “Working together with authorities – consequences for the future” at the moving forward with registries symposium, and “Connecting the dots: gathering data on TeleHealth from Cystic Fibrosis stakeholders via surveys” at the telehealth in CF care symposium. It was another brilliant conference which gave CFRI the opportunity to connect with colleagues in the international registries as well as keeping up to date with the latest research, opportunities and challenges facing the CF community.
Would you like to participate in the registry? If you have any questions or would like information about participating in the registry, please contact your CF Centre or the CF Registry at info@cfri.ie. Participation is entirely voluntary. You are free to revoke your consent and withdraw from the registry at any time.
Want to learn more about what CFRI do? We would love if you could follow us on social media or via our website. We post updates on our work and on the exciting projects we are working on. Scan the QR code below to learn more & access the latest data & reports
To get in touch, scan the QR Code or visit www.cfri.ie
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Spectrum / Autumn 2026
Prepare
Plan with Your CF Team
Pack Your Medication
Protect Hydration Don’t forget to stay hydrated! It can be helpful to research the water quality in the region(s) you will be visiting. Electrolyte drinks may help support hydration.
Sunblock Remember to pack your SPF! Be sure to wear high protection factor sunblock to make the most of your vacation.
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Prepare Your Medical Devices & Medication
Health-related travel documents are essential to keep on hand to avoid complications when crossing borders so be sure to request these documents from your team in a timely manner before your planned departure date. Check out our website for a quick guide of recommended documents!
When preparing for your trip, it is important that you pack all the medication and devices necessary for your treatment, along with the associated prescriptions. Remember to: Carry extra medication. Discuss proper storage. methods with your CF team. Remember to research electricity specifications!
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Address Your Oxygen Needs If needed, discuss your oxygen needs with your CF team prior to travel. Remember to let your airline’s customer assistance team know in advance.
ips
When packing medication to travel abroad, check your airline’s specific policies on liquids, medical devices, and luggage regulations.
Obtain Required Health & Travel Documents
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Before you travel, speak with your CF team to create a personalised travel plan! They can help adjust your treatment schedule, provide important medical documents, advise on destination-specific considerations, and support communication with airlines or accommodation providers.
Food Safety
Scan the QR Code or visit www.cfireland.ie for more!
Hygiene and Infection Prevention Good hand hygiene can help reduce the risk of infection! Keep these tips in mind: Carrying an alcoholbased hand sanitiser. Clean, sterilise and thoroughly dry nebuliser equipment. Inspect your accommodation for cleanliness and disinfect frequently touched surfaces where appropriate.
It is important to practise safe food choices by avoiding food from unreliable sources and unpasteurised products. Your CF dietitian can advise on meal planning and enzyme management.
First Aid Bag Consider packing a small travel first aid kit. It’s contents will vary depending on your destination. Check out our website for a general guide for a First Aid Kit.
Spectrum / Autumn 2026
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