CFI Spectrum refreshed 2025 website

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SPECTRUM The magazine for people living with Cystic Fibrosis in Ireland

In this edition...

The 2024 CFRI Annual Report Updates on the CF Liver Disease study 'Seeing the Invisible' - Testing for Bacteria in CF Sean Kavanagh - Unlocking the Kickboxer Within Reflect and Project - 2025 in review and much, much more... www.cfireland.ie

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SATURDAY, 7TH FE B RUA RY 202 6 LIME RI CK STRAN D H OTE L

CFI Community Conference 2026

E AR LY B IRD AC COMMODATION R ATE A VAIL AB LE UN TIL 3 1 S T D E CE MBE R Visit www.cfireland.ie ii

Spectrum / Winter 2025

CONTENTS Hello and welcome to the Christmas edition of Spectrum!

2 Unlocking the Kickboxer Within How three key moments shaped Sean Kavanagh's dream to compete 6 The Cost of Breathing Event Review - Jen Balfe

8 Walking with You: CF Physios and their Role in CF Care - Louise Collins 10 CFRI Update Key insights from the CFRI Annual Report Rory Reports: What the annual report means 14

Research Update: CF Liver Disease We wanted to try and figure out why some people with CF get liver disease and some people don’t - Emma O'Brien

16 Research Summary: Seeing the Invisible How Molecular Testing Is Changing the Way We Detect Infection in Children with CF - Zina Alfahl 18 Have FUN with Fundraising Fundraising Events 2026 20 22

Strength in our Community Thank you for the wonderful fundraising Member Services Update Fully Funded Solar Panels for Medically Vulnerable People How we supported our members in 2025

24 CFI Campaigns 2025 Reflect and Project - 2025 in review Edcuate, Advocate, Empower in 2026 28 CFEurope Update 'Choices' CFTR modulator trial - The Results 30 Members Only Keep in touch in 2026 Your questions answered!

Brendan's Doodles Team Talk - Stewart Lee, Office Manager 32

Debbie's Diary: A Snapshot of Slovenia

www.cfireland.ie

Dear Members, Welcome to the final Spectrum of 2025.

In this edition we look back on a year of progress, including the long awaited and hard-advocated for arrival of access to modulators for those with rare variants of CF, a year of support provided by our member services team and ongoing progress in the campaign for access to mortgage protection products.

We look forward to 2026, with new initiatives on the horizon, including supports for young people with CF as they approach transition to adult services, a time of important change highlighted

by Sean Kavanagh in his article. We anticipate the opening of the new inpatient unit in Beaumont Hospital and we will have a year of awareness, highlighting the emerging challenges of life with CF as our community ages.

This year’s achievements have been made possible by CFI’s incredible supporters, volunteers, fundraisers and ambassadors.

Thank you for your energy, time and dedication.

We hope to welcome you all to the next community conference on the 7th of February in The Strand Hotel Limerick.

Until then, from all the team in Cystic Fibrosis Ireland, we wish you a very Happy Christmas.

FRONT COVER: Happy Christmas from CFI EDITOR: Nicola Delaney Foxe

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DISCLAIMER: The views of contributors when expressed in this publication, do not necessarily reflect the position or policy of CFI CONTACT PREFERENCES: We are so grateful for your support for and interest in Cystic Fibrosis Ireland. If you would rather not hear from us, or would like to change how we contact you, please get in touch. Call 01 496 2433 or email info@cfireland.ie - we are open Monday to Friday, 9am to 5pm. Alternatively, you can visit www.cfireland.ie and get in touch via webform.

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Unlocking the kickboxer within: how three key moments shaped a kickboxer's dream to compete

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by Nicola D Foxe, CFI

e sat down with Sean Kavanagh, a competitive kickboxer with Cystic Fibrosis, to uncover the three defining moments that propelled him to reach his full athletic and physical potential.

Competitiveness is a good-natured Kavanagh family trait. Whether that sees Sean competing against his dad, Joe, in a game of pool, or with this sister, Sarah, to see who can get higher scores in the Leaving Cert or the Driver theory test (one each there!), it is a part of everyday life.

But as a child Sean found it difficult to fulfil this competitive nature. Today, with plenty of turns in the path along the way — modulators being just one, Sean is now 27 and an up-and-coming kickboxer, who fans are paying to watch since he took up the discipline two years ago. When we spoke to Sean in October 2025, he had just returned from an international kickboxing competition, the Bristol Open.

Part of the WAKO (World Association of Kickboxing Organisations), the event features

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various kickboxing divisions and attracts competitors from across Europe and the USA. Sean brought home a gold and two bronze medals, and his team came 18th out of 105 clubs on the first day.

“Growing up, I was competitive, but I wasn’t able to do a lot of things. I wanted to play rugby, but I was too small. I wanted to play football, but I wasn’t fast enough. I tried karate but it never really worked out,” Sean remembers.

“Now, I’m doing something I never really would have believed I could have ever done. If you told me three or four years ago that I’d be doing this, I’d have said not a chance!

But here I am, getting matched up against lads third and fourth in the world at their weight, putting on a show for people, and that competitive streak in me is finally being satiated,” Sean continues.

Spectrum / Winter 2025

Sean’s training schedule is well balanced with his personal life, passion for travelling and work. He trains twice a week but, in the lead-up to a fight, that routine intensifies with extra sessions and an enhanced focus on nutrition and weight management.

For Sean, the Bristol Open is just one milestone on his journey to hopefully going pro and opening his own gym. Along the way, a few defining moments have shaped the fighter he is today, unlocking the potential he’s pursued since childhood.

“My Mam (Sandra) and Dad looked after me so well until I was 11 or 12. Not that they stopped when I was 11 or 12 or said ‘Off you go, Sean, live your life’, it was just once I started growing and hit puberty I started having health problems. I was going into first year when I had my first proper CF admission. But my mam and dad were amazing - Mam making sure I was fed, that I took my meds and Dad getting me to my appointments and spending nights in the hospital with me,” Sean shares.

“Growing up, I was competitive, but I wasn’t able to do a lot of things.... That competitive streak in me is finally being satiated."

Photo credit: Bloody Shamrock www.cfireland.ie

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This is my future now ?

As a teenager in second year, Sean describes himself as the smallest in his year standing at about 5' and weighing around 39 kilos. Sean recalls how around then he started to become more curious about CF, searching the internet for information and discovering the stark reality of CF and the life expectancy associated with the condition. With the information available at the time, he felt he couldn’t really plan too far into the future and remembers thinking, “this is my future now”. It shaped him as a teenager, but never stopped him from staying true to himself — determined to remain positive for both himself and his parents.

in life. He went to college, had fun and managed his own care. He remembers being in his first year, burning the candle at both ends, going to festivals and absorbing college life.

“I had the best craic ever, but I was getting sick. I was in hospital maybe 4 or 5 times a year. It's not as much as some other people with CF would have been I know, but at the same time, when you're trying to live life, enjoy yourself and stay on top of your college work and stuff, it does take a toll."

the weight when I was 15 and that, honestly, saved me. It didn’t stop exacerbations, but it did help me get taller, which was the focus because the hospital wanted me to have more volume in my lungs.” Sean remembers.

Overnight, he was getting an extra 2000 calories a day and in no time, Sean had shot up to 5’4. This was defining for Sean. Not only was he reaching his physical potential and better able to hold his own in sport, he also felt ready to take responsibility for his own care.

Moment 1: The Button The first transformative moment came when Sean was 15. His health had deteriorated significantly, and Sean had a peg inserted which was changed to a MIC-KEY Button after a year. This device is made from silicone that allows fluid / feeds, and / or medications, to be given directly into the stomach. It is held in place by an internal water filled balloon.

“I left Crumlin when I was 16 and transferred to St Vincents adult services.

I was the youngest CF patient there for a year, I'm pretty sure. I loved the care in Crumlin, but I think just being around so many sick kids and stuff, it was kind of bringing me down a little bit, and I wanted to move on to the big boy hospital,” Sean explains.

Moment 2: The Modulators Then, in 2020, Sean faced his second turning point — becoming eligible for modulator therapy, a breakthrough that pushed his limits even further.

“I was in for an admission and got out on 18th December. On the 20th I started the modulators. I took the pill at 9am and by 12 o'clock, I was having that purge. I was coughing up all this mucus that had been there for years, it was sitting there. I'd only just gotten out of hospital as well – I thought I was better! But once I started the modulator therapy, it was, like, my health problems just disappeared.”

Sean continued to build momentum,

“I relied on my parents so much to drive me to appointments, so my parents were there and would do a bit of the talking for me. Whereas once I went to Vincent’s, I was delighted that I was treated like I could speak for myself.”

“I had a tube put into my stomach to pile on This gave Sean the confidence to get on 4

Spectrum / Winter 2025

"...do what you need to do to be the person you know you are..." achieving new milestones. However, two years on he felt his improvements were stagnating and while he was getting bigger, he didn’t feel he was getting fitter. The button was becoming a hinderance in sport and he was constantly worried it would get damaged or he would get injured. He spoke to his team about removing the device and with assurances of monitoring and a check in after a year, they agreed to Sean’s plan.

10 years after having this life saving tube inserted, it was taken out.

goodbye to me. But they're not saying goodbye, they're wishing me luck.

“And even though I was scared and thinking, God, imagine I went down or imagine I got concussed, I didn't care in the moment, because it just felt right.”

From that child who wanted so much to compete, to becoming a fighter proving he can exceed every limit, Sean is motivated by a relentless drive to learn and improve.

From dedicated and routine training sessions in his own gym to spending time in

Moment 3: The Epiphany A month later, Sean took a trip to Barcelona with his girlfriend. It was there while he was healing, that he had what he calls an epiphany. He realised it was time to channel his energy into something meaningful — something focused. Taking the third and most decisive step in his journey, Sean returned to martial arts which he had tried as a child, and he hasn’t looked back since.

“A month after joining my dojo Swift Kick, I had my first grading with my coach Ferdia.

After that, I was able to spar and ever since then, it's been like religion to me. I'm down there twice a week, sometimes three, doing the fitness classes, always improving, always trying to get better,” Sean explains.

Standing now at 6 foot 1, Sean has been competing since July 2024. In July 2025, he had his first ring fight.

“I've never felt so alive in my life. Being in the ring, the walkout, my music playing, and walking past all my family and my friends. It was like I was at my own funeral or something. They're all coming to say

www.cfireland.ie

“But I'm not doing this to make a career out of it. I'm not trying to get into the UFC; I'm not trying to become famous from kickboxing or anything like that. It's the competitive edge. It feels like I'm doing something with my body that I was never really able to do before. “

This is my future now.

When considering his future, Sean says “in a couple of years, I'd love to open my own gym and bring the experience, my experience, to others. I'd like to be known as someone who has fought and has an idea of what they're talking about. I can impart my knowledge to other people and train them, and that'll be the long-term goal”

“And not just to fighters either. I don't know if my story could be comforting for people with a newborn with CF, but if it is, that'd be great. I want them to know that it's not the end of the world, you know? Because it's not - it never is.

Muay Thai training centres in Thailand, Sean is always training, always learning, always progressing.

“I've always wanted something like this to light a fire in my belly. In Bristol, I fought a lad who was 12th in the world, an Irish fighter, and he absolutely schooled me, but the experience that I got from fighting him is invaluable. Because if you're just beating lads all the time, then you're not learning.

And that's part of the self-improvement journey that I've been on the last two years.”

“And for those with CF, I say just enjoy life and go for it. Have those few beers, meet new people, and do what you need to do to be the person you know you are.”

For Sean, every fight is more than competition— it is another step to prove that that limits can be shattered, hope can be shared, and that strength and possibility don’t disappear with a diagnosis..

CFI Fact!

Did you know that every year, gyms around Ireland host events and challenges for 65 Roses Day?

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The 'Cost of Breathing' Photo "surprising as it was powerful"

by Jen Balfe, CFI

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n Friday 17th October, the online launch of the much anticipated ‘Cost of Breathing’ photo exhibition by Trevor O'Donohue in collaboration with ‘Focus on Happiness’ took place.

Exhibition Review This exhibition, which was launched by CFI for the International Day for the Eradication of World Poverty 2025 and was part funded by the Department of Social Protection, was as surprising as it was powerful.

With all respect to Trevor and his wonderful talent as a photographer, one could be forgiven for thinking that an online exhibition on poverty and CF may be a difficult way to spend a lunchtime! The surprise lay in the fact that despite dealing with a challenging and difficult topic, the tone was still hopeful and the level of warmth and support in this online ‘Zoom room’ was palpable.

In order to provide a safe online space, CF Ireland used an online gallery platform 6

to take people on a virtual tour of the exhibition. There was no wine or cheese (as far as we know!) but there was a warm sense of community and support for Trevor and his work which is often missing in online spaces.

After being treated to a virtual tour of the self-portrait series, the online attendees got to hear from Trevor and learn about his creative process. His enthusiasm for the project shone through and his willingness to delve into the staging of the photos was honest, uplifting and revelatory.

Trevor’s idea to link the exhibition to the chakra system was unique and effective and encouraged the audience to consider how multi-faceted poverty can be for people with CF and their families. The attendees followed the path of poverty

through fear, shame, hopelessness, loneliness, frustration, grief and hope.

While the in-person exhibition in 2026 is sure to be incredibly special, the sneak peek that the online attendees were given on the 17th October is one that won’t be forgotten soon.

The CF community, CFI team members and elected representatives were wowed by Trevor’s art and his honest and moving interview-there is no doubt that the upcoming nationwide tour of the exhibition is sure to be a resounding success. Full details of the tour are on page 27.

In the words of Trevor "This is not a comfortable story. But it is real. And it is

told with hope."

CFI CEO Sarah Tecklenborg commented; Spectrum / Winter 2025

ography Exhibition Review

‘Trevor’s work asks difficult questions and exposes uneasy truths. It is not a comfortable place to stand with Trevor today, confronting the pervasiveness of poverty and acknowledging how often people with CF must wade through layers of societal and economic challenges.

But that is why it is so important.

Trevor has captured how multi-faceted poverty is for many people with CF and their families".

CFI will continue to advocate for increased flexibility in access to welfare supports and the introduction of a cost of disability payment that reflects the reality of life with Cystic Fibrosis. www.cfireland.ie

To view the virtul gallery and for details, dates and locations of The Cost of Breathing 2026 exhibition, visit www.cfireland.ie/supportresources/members-events/the-cost-ofbreathing or scan the QR code.

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Special Feature:

Walking with you: CF Physios and their role in CF care

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he physiotherapist’s role in CF is central to helping people live healthy, active, and fulfilling lives. Working as part of a multidisciplinary team, physiotherapists collaborate with doctors, nurses, dietitians, and psychologists to provide coordinated, personalised care for people with CF. With 15 years of experience in the field, Louise Collins shares her experience of why CF physios are a crucial, supportive part of the CF team.

My Journey beside you When I began working in Cystic Fibrosis care fifteen years ago, the landscape looked entirely different, regular admissions were part of CF life. There were always three or four children admitted, and we would spend hours doing nebulisers, airway clearance, and exercise games.

I never could have imagined the improvements I have seen since the arrival of modulator therapies, especially Kaftrio. What stands out to me is the reduction in sputum production and the increase in energy to exercise for most people.

I have also walked with many people through their transplant journey, doing regular gym sessions with them to build strength and endurance, before, and after surgery. The waiting, the preparation, the recovery, demands extraordinary resilience, being even a small part of that is a privilege. Also, it has been wonderful to witness many healthy pregnancies among people with CF, something that once felt rare. Some people I knew as children now have their own children, which is awesome to see.

As I sit down to write this article about the physios role in CF care, I also think of those who cannot take modulators. I empathise with the frustration and sadness this can bring, and their experiences remind me that the journey of CF care is still far from complete. Over the years there have been moments of deep sadness, losing people with CF whom I’d come to know well. Their courage, humour, and honesty have stayed with me, and I am forever grateful to them and their families for allowing me to be part of their lives.

I look forward to continuing to work with people with CF for years to come.

The key focus A key focus of the physiotherapist’s role is exercise and physical activity. Exercise helps to maintain lung function, build muscle strength, support bone health, and improve energy and mood. The physiotherapist can design individualised exercise programmes tailored to each person’s needs, goals, and preferences. These may include aerobic activities such as walking, swimming, or cycling, along with resistance and flexibility training to support overall fitness. To assess fitness and guide care, physiotherapists carry out exercise testing such as cardiopulmonary exercise testing (CPET), sit-to-stand tests, and strength measurements. The results allow the physiotherapist to adjust exercise plans and track exercise performance over time.

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Spectrum / Winter 2025

Physiotherapists also play a key role in airway clearance, which is essential for keeping the airways clear, and reducing the risk of infections.

They teach and support people to use a range of airway clearance techniques, including autogenic drainage, and the use of devices such as PEP masks, and Aerobikas.

Inhalation Therapy In addition to airway clearance, physiotherapists provide education and advice about inhalation therapy. They ensure people use inhalers and nebulisers correctly so that medications reach deep into the lungs where they are most effective. Physiotherapists also help plan the timing of inhaled medications in relation to airway clearance to get the best possible results. Along with sputum sampling, they use spirometry to assess lung function and monitor any changes, helping the multidisciplinary team make informed treatment decisions.

Musculoskeletal & Pelvic Health Another important aspect of physiotherapy in CF care is musculoskeletal and pelvic health. Repeated coughing and altered breathing patterns can cause postural changes. Physiotherapists prescribe exercises to strengthen muscles, improve flexibility, and maintain good posture. They also provide pelvic floor exercises for individuals experiencing urinary incontinence due to frequent coughing, helping to improve muscle control and confidence. They can refer on to specialist physiotherapy services for musculoskeletal and pelvic health when necessary.

Physiotherapists are also involved in promoting bone health, recognising that people with CF are at increased risk of reduced bone density.

They work alongside dietitians and other team members to encourage bone-strengthening strategies, such as weight-bearing exercises, resistance training, and good nutrition.

Education and Self Management Physiotherapists also play a vital role in education and self-management. They teach people the reasons behind their therapies, ensure correct technique, and help them develop routines that fit naturally into their daily lives. They provide motivation, encouragement, and practical support, empowering people to take an active role in their own care

Research Research is another important aspect of physiotherapy in CF. Physiotherapists often contribute to studies exploring new treatments, exercise interventions, and technology-based approaches such as wearables to promote activity. Research helps advance understanding of CF care and ensures that physiotherapy remains evidence-based and effective.

I am a Clinical Specialist Physiotherapist working with adults with Cystic Fibrosis (CF) at University Hospital Limerick. I have over 20 years of experience as a physiotherapist. I began my CF career around 15 years ago, initially working with children and their families. I feel privileged to support people and their families as they navigate the challenges of managing their health living with CF.

by Louise Collins, Clinical Specialist Physiotherapist University Hospital Limerick

CFI Fact!

Start the new year with strength — exercise is vital for good health with Cystic Fibrosis, and the CFI Exercise Grant is here to support every member’s physical journey.

Get in touch to find out more or to apply for the next round in January!

www.cfireland.ie

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Key Insights from the 2024 Annual Report 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 (CF) 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.

Cystic Fibrosis in Ireland: Key Insights from the 2024 Report The Cystic Fibrosis Registry of Ireland are delighted to announce the publication of the 2024 annual report and infographic. Without the continued engagement of all people with CF and their families, the publication of this annual report would not be possible, so thank you! Without you, it would not be possible to have such a high-quality registry.

Below, we’ve shared some key highlights from the report and you’ll also be able to take a look at our 2024 infographic on the next page, which summarises some of these data highlights. The full report will be available via scanning the QR code and following the link to CFRI annual reports.

years. This compares with an estimate of 47.2 in the period 2012-2016.

• 20 women with CF were pregnant during 2024 • Age-related complications o 15 people with CF required medication for hypertension in 2024. o 12 people with CF were diagnosed with cancer during 2023–2024. This equals about 1 case per 233 individuals.

For comparison, the rate in the general Irish population (ages 20–64) is 1 in 288.4 for all invasive cancers of the body excluding non-melanoma skin cancers in individuals aged 20-64 years.

CFTR Modulator Treatments • 95.9% of individuals on registered with CFRI were eligible to receive a CFTR modulator therapy in 2024. Of those eligible, 89.3% were prescribed a modulator therapy at their last CF centre visit in 2024.

Chronic infections and acute care for pulmonary exacerbations • Chronic Pseudomonas aeruginosa infection was recorded in 5.5% of registered individuals and 13.3% had a chronic Staphylococcus aureus infection.

• 12.6% of individuals on the registry required treatment with IV antibiotics for pulmonary exacerbation and 11.4% of individuals were hospitalised for pulmonary exacerbations.

Who attended CF Centres in Ireland in 2024?

• 1,454 people with CF attended an Irish CF centre in 2024.

• 94.6% of them were registered with the Cystic Fibrosis Registry of Ireland (CFRI).

Living and ageing with CF • 17% of people registered with CFRI are now 40 years or older.

• 528 (38%) of people registered with CFRI were <18 years of age.

• Half of babies born with CF today are expected to live past 62.6

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Transplants in people with CF • 91 individuals alive at the end of 2024 have received a transplant • Fewer than 5 individuals received an organ transplant in

Spectrum / Winter 2025

2024, with no individuals receiving a establishing healthy habits, in particular the Team CFRI are supporting the organisation lung transplant in 2024. of this conference, alongside CF Ireland. role of exercise.

This conference is an opportunity for the CF What else have the CFRI team One highlight for Dr Kirwan was an clinical teams from all around the country to been up to? invitation to join the CF Foundation patient come together to learn about the latest in CF registry luncheon, where the U.S. 2024 research and practice.

NACFC 2025 - Our Head of Research Assoc Prof Laura Kirwan flew to Seattle for the North American Cystic Fibrosis Conference 2025. The programme was packed with lots of different types of sessions.

Key topics this year included the

Patient Registry Annual Data Report was presented along with plans for the future Future of Registries Taskforce (FoRT) – of the registry. Dr Kirwan sits on the core Godfrey & Robyn from the registry have been working group of the CF Global Data and Research Collaboration which met in person at the conference to discuss progress on

leading a multistakeholder initiative aiming to make sure the future of registries is secure in Ireland. The Cystic Fibrosis Registry in Ireland is commonly used as an example of best practice of the positive impact that can be achieved with a patient registry.

transformative impact of highly effective modulator therapies, including expansion of use, anticipated benefits and unanticipated outcomes.

There was a plenary session exploring redefining growing older with CF, including holistic strategies for managing CF through the decades, and the importance of

The FoRT group published an important report. We have submitted a proposal to the Department of Health to scope out what the future for registries should look like and we have been working with lots of different global collaboration projects. This group groups looking to establish registries for is collaborating to pool registry data to their own patient populations. enhance research on topics including rare mutations and transplant, conducting Robyn will also act as a mentor on a analysis that wouldn’t be feasible by any one forthcoming EURORDIS ERDERA Mentorship registry alone.

Programme on Rare Disease Patient INCFC 2026 – the Irish National Cystic Registries aiming to support leadership and capacity-building Fibrosis Clinical Conference is back for 2026. development opportunities for rare disease patient advocates across Europe.

Want to learn more about what CFRI do?

If you would have any questions or would like information about participating in the registry, please contact your CF Centre, scan the QR code or email the CFRI at info@cfri.ie.

1 Assoc Prof Laura Kirwan representing CFRI at the CF Global Data and Research Collaboration Meeting

www.cfireland.ie

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Rory Reflects: What the Annual Report Means

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ach year I keenly await the newest issue of the of the CFRI Annual report.

I read through each report not just from a personal perspective but to see the trends and changes in our Irish CF population. This helps us to anticipate the ever-changing needs of you, our CFI members. I’d like to highlight some positive changes and other curiosities in our CF population which I found interesting as a person with CF, and you might too.

Did you know most people with CF in Republic of Ireland, (708 or 50.6%) are living in Leinster while only 4.7 % (66) lived in Ulster? Dublin (371) and Cork (198) had the highest concentrations of PWCF per county, whereas less than 10 PWCF lived in each of counties Roscommon, Leitrim and Longford. This is very much in line with general population distribution.

The most prevalent medical complications in adults beyond lung related illness and pancreatic insufficiency were gastrooesophageal reflux disease, sinus disease and CF related diabetes.

The majority of PWCF (880 or 62.2%) are adults and the number of adults ageing is increasing. 10 years ago in 2014 only 7.7% of PWCF were age 40 or older.

• In 2024, 17.4% were age 40 or older.

• The 2024 report now includes an age band for PWCF age 60 and over!!!

Well, we must plan for a community living longer than ever — into middle age, retirement, and beyond. As the CF population ages, medical complications increase and the economic realities of retirement and aging become more prevalent. People with CF are increasingly becoming parents and even grandparents.

The middle 50% of our CF population are aged between 13 and 36 years. For babies born with CF between 2020 and 2024, the median predicted survival is now over 62 years. Lung function results also show steady improvement each year, with more adults and children maintaining good lung health. Did you know that in 2024:

Some outlive their own parents and rely on siblings, partners, children, or friends for support, while others care for aging parents themselves.

Most of our CF community are still teenagers or young adults and so the needs of the CF population as a whole, are very broad. They range from education, travel and employment to relationships, family and financial planning and homeownership.

• 80% of children with CF had lung functions of 90% or higher %predicted FEV1?

• 35% of adults with CF had lung functions of 90% or higher %predicted FEV1?

In addition, of course, there are the various medical and wellbeing challenges and social challenges of living with CF with changing health needs and dependency on state social protection and disability rights and entitlements.

While hospitalisation for chest infection is common in CF, 86% of adults with CF and 91% of children with CF actually had no hospitalisations in 2024! There were only 5 transplants performed in 2024 for PWCF but none of these were lung transplants!

Here at CFI we try to understand all your needs no matter your age, CF health level or personal circumstance to help you in whatever way we can.

Pregnancies in females with CF are now recorded in the registry data and in 2024, 20 women with CF were pregnant!

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But what do all these data summaries mean for us here at Cystic Fibrosis Ireland?

Our team is always here for you. If you have any questions or need any support or advice, please call on 01 496 2433 and ask for our Member Services team or email memberservices@cfireland.ie.

Spectrum / Winter 2025

61.9%

<18 years 37.8%

18-40 years 44.8%

40+ years 17.4%

36.2%

1.9%

20%

40% 60% Percentage of age-group

Dual Therapy

80%

74.1%

51.9%

74.4%

Triple Therapy

82.7%

40+ years 15.4%

100%

2020-2024

62.6

Underweight *The median predicted survival age predicts how long we can expect half of people with CF born today to live

2012-2016

47.2

Normal weight

Growing older Median predicted age of survival (years)*

Monotherapy

12.8%

20

15.0%

50.7%

Hospitalisations

8.7%

13.1%

Adults 18+

16.2%

1.7%

7.8%

4.0%

11.8%

18+

27.5%

CF Related Diabetes

1.9%

Connect with us on social media & on our webpage

info@cfri.ie

Impaired Oral Glucose Tolerance % of age-group

Lung function

Sinus Disease

5.5%

40.0%

6.1%

Chronic S. aureus

24.9%

Complications

IVs for Pulmonary Exacerbations Chronic P. aeruginosa % of age-group

6.8%

Age group in years

6-17

Adults 18+

850 adults with 2024 encounter

Acute care & microbiology

526 children with 2024 encounter

Children <18

0% Gastro-oesophageal Reflux Disease

10%

20%

30%

40%

50%

60%

0%

5%

10%

15%

20%

25%

Children <18

100.3%

Shown as a % of individuals with data from a clinical visit in 2024

8.7%

Adult

0%

8.9%

12.0%

9.1%

6-17 years

<6 years

All

women with CF were pregnant in 2024

27 births 7 Live pregnancies at 8 ongoing year end

new-borns diagnosed with CF Via the National Newborn Bloodspot Screening Programme

Newborns with CF & pregnancy in PWCF

Overweight

Nutrition

94.6% registry coverage of the CF population

1376 CFRI participants with an encounter in 2024

30 new registry participants

1398 CFRI participants in 2024 Registered, alive & not lost to follow-up.

CFRI participants

CFTR Modulator therapy use

Female 43.6%

Male 56.4%

Age group (years)

2024 Data Highlights

ppFEV1

www.cfireland.ie

82.0%

13

Research Update:

Cystic Fibrosis Liver Disease Study

I

n this edition, we sit down with Clinical Nurse Manager - Research Nurse, Emma O’Brien, who works in Research and Innovation with Children's Health Ireland (CHI) and catch up on the Cystic Fibrosis LIver Disease Study, funded by CFI and the Health Research Board.

Tell us about the study This study was set up in 2006 by Dr Marion Rowland, a researcher at UCD and is currently run by Dr. Emer Fitzpatrick, Consultant Paediatric Hepatologist in CHI. It is a study which aimed to follow all children with CF in Ireland over 20 years looking at liver involvement.

We wanted to try and figure out why some people with Cystic Fibrosis (CF) get liver disease and some people don’t. One of the big questions we wanted to answer was if we could predict those who would get some form of liver disease and if there was something that could be done to prevent it or reverse it. Many people with CF (pwCF) will have some liver involvement at some time in their lives – for the majority this does not mean liver ‘disease’ but instead a rise in liver numbers or some irregularity in an ultrasound scan.

There are certain signs and findings on investigation that do indicate liver ‘disease’ however.

We wanted to try and figure out why some people with CF get liver disease and some people don’t Those with CF liver disease (about 7% of pwCF) may have consequences such as ‘portal hypertension’ where they are at risk of bleeding from their gut and can collect fluid in their abdomen.

There are various ways of treating these consequences and the earlier we know they are present the more we can get on top of these problems. The study of CF liver disease looks at a large group of people with CF who were recruited in 2006, 2012 and 2017. follows their journey with short interviews at 5 yearly intervals and collection of information on their bloods and ultrasound scans over that time. We also did a final round of recruitment in all the CHI sites in 2024 & 2025.

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We already know a lot from the preliminary findings – we know what risk factors may make a person prone to developing liver disease, we also know if there are no signs of liver abnormalities by the age of 10 years, there is only a very low likelihood of developing liver disease after that time. The other part of this study is investigating the change in occurrence and outcome of liver abnormalities in pwCF before and after the highly effective modulator therapies with Orkambi and Kaftrio in particular.

These treatments have obviously had a fantastic effect on respiratory and nutritional indices in pwCF but the same is not necessarily true for liver abnormalities. As the original studies did not include pwCF with liver disease, we really cannot say what effect if any the modulators have on liver disease at all.

CFI Fact!

Did you know that thanks to the generosity of our fundraisers, CFI contributed € 100,000 to support the CFLD Study.

In addition to this, we know that the modulators can sometimes cause liver irritation, but we don’t really understand how this happens, what it means long term or how to predict its occurrence. We are hopeful this study we are undertaking will help answer these questions.

What is your role in the study?

I have spent the last two years working as a research nurse on this study, alongside a dedicated team. As many people will remember, rules about consent to participation in research changed with data regulation updates and it was important for us to get an

Spectrum / Winter 2025

as eager to optimise clinical outcomes.

It’s also great when we start getting ‘signals’ from the data already collected which tells us we are on the right track. Sometimes we are really surprised by what we find which is also interesting but generally leads to a whole lot more work! We are excited to share our findings with the CF community here in Ireland and we also have plans to share our findings with other research teams around the world who are also interested in CF and liver disease.

How can I find more out about the study or see if I can join?

Emma O'Brien CNMI- Research Nurse Research and Innovation Children's Health Ireland

updated consent for the 900 people who were already signed up to the study. This ensures that everyone involved is still happy to participate and gives the assurance that the study is compliant with the new data protection rules and regulations.

In addition, many children were recruited in the past through their parents, so we need to ‘re-consent’ all those young people who have now reached the age of 18. Part of my job is to coordinate this consent process to approach people who have already been signed up and explain what this means going forward. I enjoy meeting people, usually at CF clinics, and talking to them about the study. We hope they leave the clinic feeling just as hopeful as we do to learn more about liver disease and ultimately improve the care of people living with liver disease.

What do you enjoy most about your job?

It is great to meet children, their parents and adults at the different clinic settings around Dublin and let them know about the study and the team committed to driving improvements in CF liver disease. I am constantly blown away by how receptive people are and how there is such an eagerness to share their medical data to help make things better for the whole community – outpatient clinics can be a stressful place but everyone we have approached about the study is incredibly generous with their time!

It’s great getting to meet all the CF staff at the different clinics from the consultants to clinical nurse specialists and respiratory physiologists, to name just a few, who have been so helpful in making sure the study runs smoothly at each site and who are just

www.cfireland.ie

We would be delighted to hear from anyone interested in this study and can give them more information by email or phone. We would particularly love to hear from anyone who may already be a participant from childhood and who hasn’t yet been approached by our team with the new information sheet and consent form so that you can continue to be part of this study. The study itself only requires the collection of some information about liver bloods, scans and other routine data. The information is all stored securely in a form that is not identifiable to anyone but the research team.

If you would like to email, we can check if you have previously been part of the study.

If you were attending the paediatric services in Ireland in 2006 onward you are likely to have been recruited and we would love to hear from you! At the moment our team attends CHI, St Vincent’s and Beamont and in early 2026 we will be moving to Cork University Hospital, Limerick University Hospital and Galway University Hospital too. This QR code or email CFLD.Research@childrenshealthireland.ie for more information.

Christmas Wishes!

We'd like to send very special Christmas wishes to each and every member of our CF Clinical teams.

Thank you so much for everything you do and have a very happy Christmas.

From everyone at CFI

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Research Summary:

Seeing the Invisible: How Molecular Testing Is Changing the Way We Detect Infection in Children with CF

By Zina Alfahl, PhD, Lecturer in Bacteriology University of Galway

Dr. Zina Alfahl is a Lecturer in Bacteriology and a member of the Centre for One Health at the University of Galway, affiliated with the Antimicrobial Resistance and Microbial Ecology Group. She completed her PhD in Pharmacy at the School of Pharmacy, Queen's University Belfast, focusing on determining clinical and microbiological endpoints in chronic airway diseases. Dr. Alfahl is a Fellow of the Higher Education Academy and currently teaches Bacteriology at the School of Medicine. Her research interests focus on molecular diagnostics to detect bacterial pathogens and antimicrobial resistance and stewardship.

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hen you’re caring for a child with CF, you quickly learn that lung infections are more than just an occasional worry, they are an ongoing challenge. The lungs of people with CF provide a warm, sticky environment where bacteria can settle early in life, often long before symptoms appear. These infections can slowly damage the lungs over time. The main problem has always been spotting these bugs early enough, before they cause lasting harm.

For years, doctors have relied on traditional laboratory culture methods to find infection. These techniques involve growing bacteria from sputum or throat swabs on special plates in the lab. While this approach has helped generations of people with CF, it has one major drawback: if a germ is hard to grow, grows very slowly, or is present only in tiny numbers, the test can fail to pick it up at all. This raises a critical question in CF care: Have we been missing early infections simply because our tools weren’t sensitive enough?

What Is Molecular Testing and Why Is It So Powerful?

Imagine trying to figure out what ingredients are in a blended soup just by looking at it. If there are big chunks, like carrots or potatoes, you can easily spot them. But what if the soup contains tiny traces of herbs or spices? Your eyes alone can’t see them. Now imagine having a tool that can identify every ingredient, no matter how tiny or invisible it seems, even if it’s just a microscopic fragment. That’s what molecular testing, especially PCR (Polymerase Chain Reaction), does when looking for infection. Instead of waiting for bacteria to grow in a lab plate, PCR looks directly for the unique genetic material (DNA) of each bug. It doesn’t matter whether the bug grows slowly, is present only in small numbers, or isn’t growing at all, if even a tiny piece of DNA is there, PCR can detect it. This gives molecular testing three major advantages: 1. It is extremely sensitive: PCR can detect very small amounts of bacteria, often long before conventional tests pick them up.

2. It is fast: Results can sometimes be available the same day compared to minimum 2 days using conventional tests.

3. It works even when conventional tests fail: Some organisms simply don’t grow well in the laboratory. PCR doesn’t have that limitation.

For children with CF, who often struggle to produce sputum, and whose infections may hide deep in the lungs, this added sensitivity can make a real difference.

Our Study in Galway: Looking Deeper into the Lungs of CF Children At the University of Galway, we wanted to understand how helpful molecular testing might be for detecting early lung infections in children.

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Spectrum / Winter 2025

Therefore, we conducted a study at the paediatric CF unit at Galway University Hospital where sputum samples from the lower airways, the part of the lungs where infections truly settle, were analysed using both traditional tests and PCR-based molecular testing. Our results showed that PCR detected bacteria in the lower airways that traditional tests completely missed. In other words, some children had early bacterial colonisation lurking beneath the surface that we could not see with older testing approaches. These bugs were present at very low levels. In some cases, PCR detected early signs of bacteria known to be particularly challenging in CF, such as Pseudomonas aeruginosa.

Finding these organisms sooner allows for earlier, more precise treatment, potentially preventing chronic colonisation and long-term lung damage. For parents and clinicians, this is encouraging. It confirms that molecular methods offer a clearer, more accurate picture of what’s actually happening inside the lungs.

Why Early Detection Matters So Much in CF? CF lung disease is often described as a gradual storm building quietly over time. It may begin with bacteria settling deep in the airways, without causing obvious symptoms. Over months or years, these bacteria can form protective layers called biofilms, making them much harder to treat. By the time they appear on a traditional sputum culture, they may have already caused damage. The goal of early detection to find infections before they become established, before they become chronic and before they harm the lungs. This is especially important for babies and young children, who cannot always cough up sputum samples for testing. If PCR can reveal infections at their earliest stages, clinicians can start treatment sooner, choose antibiotics more accurately, reduce the risk of chronic colonisation, monitor treatment success more effectively and protect long-term lung health.

Is PCR “Too Sensitive”?

One common concern is that PCR might detect harmless traces of bacteria that aren’t truly causing infection. After all, everyone’s airways contain a mixture of microbes. This is where expert interpretation is crucial. PCR is not meant to replace conventional cultures; it’s meant to work alongside them. Each method provides different information, but together, they give a much clearer picture. Doctors consider not just which bacteria PCR detects, but also how much is present, whether the child has symptoms, whether the organism is a known CF pathogen and whether there is evidence of inflammation; when these pieces are put together, PCR adds clarity, not confusion!

A Look to the Future Molecular testing has already transformed many areas of medicine, from cancer screening to COVID testing. In the world of CF, it offers a promising future where infections are caught earlier, treatments are more targeted and lung health can be preserved for longer. Imagine a future where even tiny amounts of harmful bacteria are detected within hours, children receive treatment before infections become established, fewer hospital stays and antibiotic courses are needed and young people with CF maintain healthier lungs for many years. Our study at Galway University Hospital is a step toward that future. PCR isn’t a magic solution, but it is a powerful tool, one that helps us see what conventional tests sometimes miss. And in the fight against CF lung disease, the ability to see the invisible may be one of the most important advances we have.

The Bottom Line!

Molecular testing, particularly PCR, is opening a new chapter in CF care. By detecting hidden infections earlier and more accurately, it gives healthcare teams the opportunity to respond sooner and more effectively. For families, it offers something equally important: knowledge, reassurance and hope. As molecular technology continues to evolve, we look forward to a time when this type of testing becomes a routine part of CF care across Ireland. Every early infection detected is another step toward protecting the lungs and our youngest CF patients. I would like to extend my heartfelt thanks to Prof Martin Cormican (Consultant Microbiologist GUH and Professor of Bacteriology, School of Medicine, University of Galway) for all his support, Paediatric CF unit staff at GUH particularly Dr Mary Herzig and Microbiology laboratory staff at GUH who contributed their time, expertise and dedication to this study. Most importantly, I am deeply grateful to the children and families who took part in the study.

CFI Fact!

Did you know your support makes it possible for us to support and invest in vital Cystic Fibrosis research and find answers to the questions that matter most. www.cfireland.ie

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FUNDRAISING EVENTS in February 7th – Annual Raffle The Annual Raffle is now open! Join us live at our Annual Conference on Saturday, 7th Feb at The Strand Hotel, Limerick for the draw. Thanks to our generous sponsors, amazing prizes await!

Tickets: €5 each or five for €20 www.idonate.ie/raffle/CFIRaffle26

April 26th — Duleek 10k What:

February - Take a 6

This comin our 65 Ro

What: How: Where:

May 31st —

The 14th Annual Duleek 10k How: Registration details coming soon!

Where: visit www.cfireland.ie or contact Ann at duleekcf10@gmail.com

What:

Sept 10th - 13th – Malin2Mizen Cycle4CF

Sept 17th-24th – CF

What: How:

A 4 day, epic 640km cycle from Malin Head to Mizen Head Register at www.cfireland. ie and raise €2,000* plus. *Food and accommodation

provided.

How:

Join us

What: How: Where:

Where: Register your interest on www.cfIreland.ie

If you have donated €250 or more during any year over the past five years all you have to do is sign and return a CHY3 form. We can claim an extra 45% from revenue.Please contact us to receive your form.

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To register your interest for these events, for more events througho visit our website www.cfireland.ie, contactSpectrum the CFI Fundraisi / Winter 2025

n 2026!

65 Roses Challenge

ng February, why not take part in oses Challenge for 65 Roses Day!

Walk, Jog or Run 65km Register at www.65roses.ie Do a little every day, do it your way!

— One in 1000

:

15th Anniversary of One in 1000 / VHI Women's Mini Marathon Contact 01 4962433 or fundraising@cfireland. ie s: at The Black Door, Harcourt Street

FI International Walk the CFI International Walk 2026 to Bulgaria Register on www.cfIreland.ie or call Hazel on 01 496 2433 Walk in Bulgaria -The Pearl Of The Black Sea

Register today to join one of our many events throughout the year to help fundraise and support people with CF in Ireland @ www.cfireland.ie

April 10th - 65 Roses Day 2026 What:

Our national fundraising day!

Where: Volunteer at a local Dunnes Stores or Select shopping centres nationwide to sell our purple roses!

Register: www.65roses.ie/volunteer

Sept 6th – Head2Head Walk What:

Annual Head2Head Walk 2026 Where: Stunning coastal walk from Howth Head to Bray Head How: Register at www.cfireland.ie

October 25th - Irish Life Dublin Marathon What: How:

We have 50 guaranteed places in the Irish Life Dublin Marathon!

Register your interest at www.cfireland.ie

Where: Email fundraising@ cfireland.ie or call (01) 496 2433

For those seeking the challenge of a lifetime in 2026, we offer International Treks throughout the year to Kilimanjaro, Machu Picchu and Everest Base Camp. Get in touch to find out more.

out the year, or for further details on any of our fundraising events, ing Team on (01) 496 2433 or email fundraising@cfireland.ie. www.cfireland.ie

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STRENGTH IN OUR COMMUNITY

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Thank You For Your Wonderful Fundraising!

t 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 - please keep up the great work!

Irish Life Dublin Marathon A huge thank you to everyone who supported Cystic Fibrosis Ireland over the October Bank Holiday Weekend by taking part in the Irish Life Dublin City Marathon! You should be incredibly proud — not only for crossing the finish line, but for the fantastic fundraising you achieved along the way. We hope you’re all well on the road to recovery. Don’t forget — we have 50 guaranteed places available for the 2026 Irish Life Dublin Marathon! Check out the details in our events section and register now to secure your spot

Christmas Jumper Day 4 CF We are overjoyed by the wonderful support for Christmas Jumper Day 4 CF 2025!

Thank you so much to everyone who participated and donated, supporting people with Cystic Fibrosis in Ireland. We absolutely loved seeing all of your #CJD4CF2025 pictures with your Christmas Jumpers.

Happy Christmas!

Castlethorn Golf Classic Massive thank you to Brian and Teresa Delaney who held their annual Castlethorn Golf Classic recently, donating an amazing €20,000 to Cystic Fibrosis Ireland!

The event, which raised €40K for charity in total, was a huge success and we are so thankful for their time and efforts organising this. Brian and Teresa are the parents of two boys Tomás (8) and Seán (6), both living with CF.

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Spectrum / Winter 2025

2025 Ladies Lunch A special thank you to Afric Smith and everyone involved in hosting the elegant 2025 Ladies Lunch in support of people with Cystic Fibrosis.

This years event was held at the Martello in Bray and was not only a huge success, but an inspiring afternoon of connection and compassion.

Photo credits: Leigh Anderson, photographer via The Irish Independent , Wicklow Edition https://m.independent.ie/regionals/wicklow/bray-news/wicklow-mums-lead-heartfelt-fundraiserfor-cystic-fibrosis-ireland-the-generosity-means-so-much-to-our-family/a1421523698.html on

www.cfireland.ie

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Member Services Update:

Fully Funded Solar Panels for Medically Vulnerable People

D

id you know that Sustainable Energy Authority Ireland (SEAI) will fully fund up to 2kWp worth of solar panels to people who are registered with their electricity energy supplier as medically vulnerable?

In October 2025 the Minister for Climate, Energy and the Environment, Darragh O'Brien, extended eligibility for the Solar PV Scheme for Medically Vulnerable Customers, to include all homeowners who are registered under the life support category of the Priority Services Register. This followed the success of a pilot project launched in 2023 which has completed 470 solar PV installations in homes to date.

The life support category includes users who are dependant on or use life support medical equipment. The SSE Airtricity Code of Practice states that a vulnerable customer is defined in legislation as a household customer who is:

The SEAI Medically Vulnerable Solar PV Scheme covers: • • •

400W solar panel x5 String inverter All installation costs

1. Critically dependent on electrically powered equipment, which includes but is not limited to life protecting devices, assistive technologies to support independent living and medical equipment, or 2. Particularly vulnerable to disconnection during winter months (November to the 31 To be eligbile: March) for reasons of advanced age or physical, sensory, intellectual or mental health.

Life support medical equipment includes electricity dependant machines such as peg tube feeding pump, kidney dialysis machine, home oxygen concentrator, bipap machine, nebulisers and various mobility devices such as household lift.

Registered homeowners will automatically qualify for the scheme and their electricity supplier will contact them directly in the coming months. No application is necessary and a letter of interest will be provided. The company will assign a Solar PV company to visit the home and assess its suitability for a solar PV system. If your home is suitable, the company will provide you with an installation date. If you believe you are using life support equipment, ensure you are registered with your electricity supplier under the life support category of the Priority Services Register.

CFI advocates for broader access to these supports. To read more on this scheme or find more energy related advice, visit the Energy Efficiency website: https://energyefficiency.ie/ https://energyefficiency.ie/blog/fully-funded-solar-panels-for-medically-vulnerable-people/

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1. You must be registered with your energy supplier as a Priority Services user on their medically vulnerable customer registry 2. Your property must have been built and occupied prior to 31Dec2020 3. The owner or a member of their household or a tenant must be listed on the life support category of energy supplier vulnerable user registry

Spectrum / Winter 2025

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How we supported our members in 2025

ver the year, the Member Services team have worked tirelessly to support our members in living with and overcoming challenges that exist with CF. Below is a snapshot of that support from introducing new initiatives such as athe inpatient support pack, to providing a listening service to be available when our members need us most. There are more exciting initiatives planned for 2026 and we look forward to continuing the work with our members firmly at the heart of everything we do.

www.cfireland.ie

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CFI Campaigns:

Reflect & Project

A

t CFI, we are always working to understand your needs living with CF. Our advocacy campaigns are an important part of our work to promote education and awareness of CF. Throughout 2025, we met with partner groups, national policy and decision makers (and more!) to highlight those needs and now, as the year comes to an end, we wanted to share some of the strides we have made.

Mortgage Protection Campaign Accessing mortgage protection cover is a key barrier to those with CF owning their own homes. This is something we are passionate about highlighting in 2026. This barrier to accessing mortgage protection adds to the cost of living with CF and also prevents some from owning their own homes.

We have already highlighted our concerns to the United Nations Convention on the Rights of Persons with Disabilities. And as the campaign gathers momentum in 2026, we will be taking this directly to government. We will call for clearer guidelines, fairer assessments, and policies that reflect the realities of modern CF health and care. Our goal is simple. We want to ensure that people with CF are not excluded from home ownership because of outdated perceptions or inconsistent insurance practices. We look forward to working with you, our members, to drive meaningful change. Keep an eye out for more details over the coming months.

The Cost of Living with CF Earlier this year, we launched a Cost of Living with CF survey. We are extremely thankful to our members for sharing their experiences with us. Our findings showed that larger numbers of people with CF are now in paid employment, which allows them to pursue many of their life goals.

Snapshot Survey results The Cost of Living Survey 2025

However, the data also shows the ongoing challenges of living with CF, and has formed the foundations for our 2026 advocacay and awareness campaign. We will launch the campaign at our Community Conference in Limerick in February with a photography exhibition, The Cost of Breathing by Trevor O’Donoghue.

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Spectrum / Winter 2025

The Access to Medication Campaign The Access to Medication Working Group was formed to ensure that those with CF who have rare gene variants could also benefit from the advancements in CF medications and standards of care seeen in the last decade. CFI and the Working group worked relentlessly in their advocacy efforts throughout 2025 to further this goal and have seen some key and welcome changes.

In April, we welcomed the announcement from Vertex Pharmaceuticals that the European Commission had granted regulatory approval for a label extension of KAFTRIO® in a combination regimen with ivacaftor for the treatment of people with CF. This marked a significant milestone in the fight to ensure every person with CF has the care and support they need and deserve. On September 1, ALYFTREK® (deutivacaftor/tezacaftor/vanzacaftor) became available for reimbursement for the treatment of people with CF aged 6 years plus. This is specific to those who have at least one non-class I mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene.

As 2025 closes, we would like to thank the efforts of all the members of the Access to Medications Working group. Without your continued contribution, this year's achievements would not have been possible. Our work, however, is not done. There are still members of the CF community who are not in a position to avail of these advancements. With your support, CFI will continue to invest in research to find new treatments and therapies for CF. If you would like more information or would like to be part of the working group, please get in touch.

Blood Glucose Monitoring In the second half of 2025, CFI raised concerns about accessing Continuous Blood Glucose Monitors for CF-related diabetes through the PCRS (primary care reimbursement scheme). We are acutely aware of the need for this within our community and will continue to represent this ask. We look forward to keeping you informed as we receive more updates on this area in the coming months.

Access to Psychological Supports for Galway CFI are currently working with a subgroup of parents from Galway to recruit a full-time CF Team Psychologist for NUIG. This role has long been sought after. Together our aim is to highlight the necessity of this role for the people of Galway. If you would be interested in joining the campaign we would love to hear from you.

Healthcare networks This year, CFI worked with Disability Federation of Ireland (DFI) in their various working groups and subgroups, including: • The DFI Advocacy and Policy Network • The DFI Self-Advocacy Leaders Network • and we were involved in subgroups on housing, mortgages and insurance.

We attended meetings and conferences and in 2026, will continue to provide a CF voice to influence DFI submissions to Government and related authorities.

CF Awareness and Education A key part of our advocacy work serves to promote, educate and create awareness of CF. In 2025, the team visited primary and secondary schools and students at 3rd level institutions highlighting the practical medical, emotional and social impacts of living with CF.

www.cfireland.ie

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Educate, Advocate, Empower

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Your Voice, Your Action Counts

s 2025 draws to a close, we reflect on public awareness of CF. Thanks to your efforts, the work of our Ambassadors, the support of the media and success of previous campaigns, the public are aware of the advancements in treatment, care and management of CF.

However, the challenges (seen and unseen) of life with CF are still less understood. This is why we are launching '2026 - A year of awareness' - to build on the existing awareness out there. With your help, your voice and your action, we can educate, advocate and empower the public to continue to support people with CF in Ireland.

We have a full year of awareness initiatives in the pipeline and we are asking for your involvement to make this year long campaign a success.

In particular, we invite you to share your story, your perspective, and your support in these three exciting projects:

• A letter to my future self • A day in my shoes • Research - making dreams come true

These three projects are just some of the initiatives taking place across the year. As with all our campaigns, CFI will provide guidance, workshops and support to those who choose to get involved. There will also be opportunities to share your story in the media, become an Ambassador and be supported in those roles.

Grace Shesgreen, 2022

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Spectrum / Winter 2025

65 Roses Day 2026 - Letter to my future self The 2026 CFI 65 Roses Day campaign is taking a slightly different shape this year. We are asking members to get involved by writing a letter to either their future self as a person with CF, or to their future child, sibling or family member.

Letter to my future self

These letters will share the hopes,dreams and aspirations of people impacted by CF and illustrate how nothing is taken for granted, no matter your age living with CF.

A day in my shoes

A day in my shoes Making dreams come true

At a recent meeting, the Ambassdors expressed a strong desire to show the world what life with CF is really like behind closed doors.

We think this is a fantastic idea and have included 'A day in my shoes' (working title!) in the years plan. Together, the Ambassadors and CFI, will create engaging and informative video content to share across the year.

Research - making dreams come true In the second half of the year, we will focus not only on awareness and education around challenges of living with CF, but also on what can be done about them. What is needed to help our community reach their goals and achieve their dreams? The answer - research.

We are planning a digital campaign that will educate, engage and generate support but will help the wider public understand the importance of research to people with CF in Ireland. Research is what dreams are made of.

If you feel you would like to get involved, or if you have any suggestions for the year of awareness, we would love to hear from you. You can get in touch by scanning the QR code, emailing spectrum@cfireland.ie or phoning 01 496 2433.

Thank you!

As 2025 draws to a close, we would like to say a heartfelt thank you to the Board of Cystic Fibrosis Ireland for all your support over the year. Your commitment and compassion is the heartbeat of our shared journey.

Looking forward to another fruitful year working together with the CF Community in Ireland.

From everyone at CF House www.cfireland.ie

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T

CHOICES CFTR Modulator Trial: The Results

hey are finally here: the HIT-CF team shares promising results of the CHOICES CFTR modulator trial and they suggest a good match between organoid testing and clinical outcomes! This text is a community adaption of the original press release of October 20, 2025.

In October, the HIT-CF team has presented the final results of its Therapeutics may be a promising first-line treatment for people major research project on new CFTR modulator medicines to the who show responsiveness in the FIS test, with a favorable safety European Commission, which funded the study through the Horizon profile. The European Commission has expressed strong support 2020 program. Over the past years, the HIT-CF project tested a new for further developing CF treatments that follow a precision triple CFTR modulator combination, Dirocaftor, Posenacaftor, and medicine approach (methods that can match the right therapy to Nesolicaftor, owned by Fair Therapeutics. The team first tested how the right person based on their biology), as well as for advancing well these medicines worked in organoids (tiny personalized models this new modulator combination so more people with CF worldwide grown from patient cells) from more than 500 people with CF across may benefit. Professor Dr. Kors van der Ent, coordinator of HIT-CF, 16 European countries. They did this using the FIS (forskolin induced said: “We are thrilled about these results. Despite the challenges swelling) test, a lab method that measures how well the CFTR protein of the pandemic and changes in industry partners, the European CF community worked with remarkable dedication to push new works. treatments forward.”

The next step was a placebo-controlled, double-blind, cross-over Anne van Loon, CEO of Fair Therapeutics, stated: “Around 45,000 clinical study. This means that participants receive both the real people with CF still have no access to a potentially life-changing treatment and the inactive dummy treatment at different times during the study, and neither they nor the researchers know which treatment. We are determined to keep moving forward and bring this new combination closer to the patients who need it. To do so, one they are getting at any given moment. People with CF with very diverse CFTR variants, including very rare ones, took part. The we are currently working hard to secure new funding in order to results showed a wide range of changes in lung function (from -12% advance clinical testing of our triple combination.” to +22% predicted FEV1), along with matching improvements in sweat chloride levels and patient-reported symptoms (CFQ-R). Importantly, Hilde De Keyser, CEO of CF Europe, added: “The patient community the improvements in the lab (the organoid tests) closely matched has been actively involved throughout HIT-CF. We strongly support what happened in the clinic. the goal of bringing treatments to people with ultra-rare These findings strongly support earlier statements from the European Medicines Agency that the FIS test is a reliable and meaningful way of measuring how well the CFTR protein works, and how this changes in response to possible treatments. This means FIS can help: 1. Pre-select people for clinical trials, and 2. Identify or predict who is likely to respond to certain modulators, based on the organoid results. This is especially precious for people with rare CFTR variants who are usually not included in commercial clinical trials.

The study also shows that the new modulator combination from Fair

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variants and to those living in underserved regions.” The HIT-CF Consortium is made up of partners from across Europe, including university hospitals, research institutes, patient organisations, and industry partners. The consortium wants to thank the people with CF from all over Europe who took part in this project, for their patience and dedication – this wouldn’t have been possible without them!

Contact persons: Elise Lammertyn, Head of Research CF Europe Elise.lammertyn@cf-europe.eu Anne van Loon, CEO Fair Therapeutics info@fairtherapeutics.com

Spectrum / Winter 2025

GRANTS & SUPPORT SERVICES Living with Cystic Fibrosis brings with it additional financial burdens. Our grants are designed to help alleviate the financial pressures experienced by our members and our member services team are available to support you every step of the way. A summary of the grant supports currently on offer are outlined below.

Exercise grant

Fertility Grant

Exercise and physical fitness is of extreme importance for people with Cystic Fibrosis and is instrumental for preserving mental well-being and quality of life. This grant aims to alleviate the financial burden of accessing exercise for pwCF.

The CFI Fertility Grant provides financial support to people with Cystic Fibrosis and their respective partners who wish to undergo fertility assessment/treatment in the hope of becoming pregnant and are not covered by the HSE Fertility support scheme.

Assistance Grant

Bereavement grant

CFI has funds available under this scheme to assist people with CF experiencing certain financial difficulties. In efforts to ease the financial burden, the team will work with you to help and support you where possible.

When a member of our community with CF passes, CFI can provide a Bereavement Grant, which aims to support families during this time by providing financial support towards the funeral costs.

Counselling & Psychotherapy

Transplant Grant

CFI offers a counselling referral service and playtherapy to members who wish to speak with a professional outside of the hospital environment to work through their concerns and difficulties. Through this grant, we offer support towards the costs of a counsellor or other available services.

For members who are undergoing Transplant Surgery, CFI provide financial assistance towards incidental expenses incurred. Transplant grants are available for members availing of surgery both within and outside Ireland.

If you need help with the process or more information on how to apply for a grant please contact our helpdesk where a member of our team will support you. We can also be reached by email at memberservices@cfireland.ie www.cfireland.ie

Cystic Fibrosis Ireland, 24 Lower Rathmines Road, D06 A9P3

info@cfireland.ie

01 496 2433

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www.cfireland.ie

Keep in touch in 2026!!

UPDATE YOUR DETAILS TO KEEP IN TOUCH in 2026 In 2026, we will be introducing a new system of keeping Members up to date with service information. From service notices to grant information to member events, we will be moving digital for most communications and email and text will become the primary method of communicating. Over the next few weeks, our team will be making phonecalls to members who do not have an email listed to update their details. If you have missed a call from us or if you do not hear from us but know that you are a member, please get in touch to notify us of any changes to your details. You can scan the QR Code, email the office on info@cfireland.ie or call 01 4962433.

Your questions answered!

Want to know top tips for packing for a flight? Or maybe for organising a wedding?

You might want to hear how to tell your new partner about CF. Whatever question you would like to ask, scan the QR code or email spectrum@cfireland.ie and send it in for consideration. We will put it to out to the community (anonymously) and print the answers. Unfortunately, we can't give medical advice but if you need some guidance on any topic of life with CF, let us know.

Brendan, aka

bob_narrow doodles again!

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Spectrum / Winter 2025

Team Talk @

I wanted to improve my knowledge of the condition and the community in Ireland. I love to play sport and spend most evenings either running, playing football or tag rugby.

Role From ordering stationery to issuing receipts, I keep the office running smoothly so my colleagues can focus on their roles.

It’s also highly likely that if you’ve phoned, called to the door or emailed the organisation, we have already spoken!

Name: Stewart Lee (yes really!)

Role: Office Manager Based in: Dublin

About I have been working in Cystic Fibrosis Ireland since May 2024.

Fun Fact I grew up in a family with four sisters and no brothers….I rarely won an argument.

Favourite Motto “This too shall pass” A reminder that both bad and good times are temporary.

Prior to this role, I ran my own business which specialised in organising Currently Enjoying: events, primarily catering to children and families. I sought out a role Reading: ‘Life after life’ by Kate Atkinson with CFI after my nephew was diagnosed with Cystic Fibrosis.

Watching: Whatever live sport is on at the time!

CONTACT PREFERENCES: We are so grateful for your support for and interest in Cystic Fibrosis Ireland. If you would rather not hear from us, or would like to change how we contact you, please get in touch. Call 01 496 2433 or email info@cfireland.ie - we are open Monday to Friday, 9am to 5pm. Alternatively, you can visit www.cfireland.ie and get in touch via webform.

www.cfireland.ie

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Fundraising Update:

Snapshot of Slovenia: CF International Walk 2025

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written by Debbie McCarthy, International Walker edited by Erin Priestley, TY Student Intern

ebbie is back with another wonderful account of this years International Walk - this time to Slovenia. A snapshot of Debbies Diary is included in this edition of Spectrum and you can read the full account by visiting www.cfireland.ie or scanning the QR Code below.

Debbies Diary 2025 This year's International walk brought us to the breathtaking landscapes of Slovenia, in memory of Bridie Maguire, a founding member and first CEO of Cystic Fibrosis Ireland. We were honoured to have Bridie’s family and her husband Tommy see us off at Dublin Airport.

After an evening flight to Trieste, Italy, we crossed into Slovenia and checked into Hotel Park in Ljubljana, ready for an unforgettable adventure.

Day 1 – Discovering Ljubljana Day one started with 32 walkers in a river of purple exploring Slovenia’s beautiful and vibrant capital ‘Ljubljana` with our guide Maja.

Ljubljana captivated us with its stunning riverside setting, Dragon Bridge, Preseren square and gorgeous skyline that is dominated by its castle. We strolled through Tivoli park which is a very popular tourist attraction and climbed the steep Roznik Hill for scenic views of the city before returning to explore Ljubljana castle that has a glass lift up the steep cliff side, showing glorious views of the city. Some of the highlights include the tower, chapel mosaics and museum artefacts dating back to Roman times. We ended the day by dining in a local restaurant for a traditional Slovenian meal of veg soup, local breads sweet potato mash and chicken, after covering 17km!

Day 2 – The Green Gates of Ljubljana Our bus took us 15km away, to Meldove in the area known as ‘The Green Gates` of Ljubljana. We walked through corn fields and farm lands, along Rivers Sira and Sora, with the Alps as our backdrop. The weather was beautiful and the sky was just a stunning clear blue.

After we had covered all our kilometers we headed back to Ljubljana and ate lunch before walkers spread out to see the capital at their own pace. Some walked, some took a boat ride and others took a train. We finished off the day with a quiz hosted by our West Cork Sisters- Claire and Cathy. Bragging rights went to our Cork-Galway team.

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Spectrum / Winter 2025

Day 3 – Medieval Kamnik & Awards Night Today’s plan brought us to Kamnik, about 25km away. Kamnik is a very picturesque town with red roofs and whitewashed houses. We got photos with the large bronze mammoth statue at the bus stop. We walked along the Kamnik river, that sparkles with many whirlpools, springs and rapids. We visited Eco Resort Kamnik to feed some deer. That evening we had our honorary walker presentation with Breda Cahill recognized for her tireless support and ‘magical backpack’ of essentials. A minute of silence was had to honor those who passed away with CF this year, followed by songs and dancing.

Day 4 – Vintgar Gorge & Lake Bled Today we headed towards Lake Bled, with our first stop being Vintgar Gorge, a 1.5km canyon carved by the Radvona River. We put our hard hats on and navigated through wooden walkways and waterfalls before a steep climb to breathtaking views of Bled and the Kamnik Alps. It was well worth the sore muscles. Later, we admired the Bled castle before heading on to our next hotel. We had a celebratory buffet and cake to mark both Roisin’s birthday this week and a number of significant birthday’s this year. We had a quick nighttime stroll to the lake to see the fairytale-like island, churches and castles lit up.

Day 5 – Lake Bled Magic Today we stayed in the Lake Bled area which is definitely worth the walk. We first went to navigate the glacial lake that is surrounded by forests, mountain ranges, swimming spots, wooded pathways and boardwalks. The total walk is 6km with many places to stop for coffee and photos, while some even went for a dip. After lunch, we got on a Pletna boat to Bled island. We went into the Church of the assumption of the Blessed virgin Mary and lit a candle. We then climbed many steps up to the tower and saw glorious panoramic views.

Afterwards, some decided to climb the 364 steps of the 130 meters high Bled castle. We rewarded ourselves with some ice cream and stunning views of the Julian Alps, before heading back for a buffet dinner and singsong.

Day 6 – Julian Trail & Lake Bohinj Our final day was busy, the Slovenia Camino, the Julian Trial and Lake Bohinj. We passed valleys, alpine cottages and woodland paths.

We made a quick stop at an old ski jump which reminded us of Slovenia’s sport heritage. Today’s weather was warm and humid and we headed to Lake Bohinj, a gorgeous spot with crystal-clear waters. We then had lunch and a dip in the icy lake. We got on the bus to go back to Bled and savored our last few hours with coffee and the famous Bled cream cake. That evening, we all got together for our awards night, honoring Bridie Maguire’s legacy and presented a memento to her granddaughters Lucy and Kate. The photo of the walk winner was announced, and next year’s destination was revealed: Bulgaria 2026! !

Homeward Bound We headed back to Italy this morning, and our 3.30pm flight got delayed due to thunder/lightening storms near Trieste. Our delay was over 8 hours, but we did what any group of 32 Irish purple t-shirted travelers needed to do. We opened the duty free and had a sing song and little boogie in the departure area. Wednesday, we all arrived home safely, very tired but no injuries, great memories and fab photos to remember another successful walk Next year, we take our purple t-shirts to Bulgaria 2026—another adventure awaits! Until then, keep walking, keep connecting, and keep making a difference.

Visit www.cfireland.ie to register your interest to join the lnternational Walk 2026.

www.cfireland.ie

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Irish National Association for Cystic Fibrosis a company limited by guarantee trading as Cystic Fibrosis Ireland.

Registered Company Number: 449954. Charity Number: CHY 6350. Registered Charity Number: 20011376 Spectrum / Winter 2025