Spectrum - Summer 2025

Summer'25SPECTRUM

The magazine for people living with Cystic Fibrosis in Ireland

In this edition...

A Focus on Happiness

Trevor O'Donoghue and what photography means to him

pg. 2

A Beautiful Legacy to Leave: The Soft

Opt Out legislation

Emma Hempton on the importance of organ donation

pg. 4

Looking forward to the Head2Head Walk

7th September 2025

pg. 20

Italia '25 - Reporting from ECFS

Spectrum+

Featuring our first edition of Spectrum+ The Summer Supplement

Humans of CF and more inside!

Member events 2025

www.cfireland.ie

July August September

PSAG: 2 @ 8pm nd

CFI AGM

18 @ 7pm th

CF House

AIMs Support

Info Evening

20 @ 630pm th

Parent Connect 10 @ 730pm th

Ambassadors 16th

Living Well Course

10/17/24th @ 630pm

October November December

Parent Connect 1 @ 730pm st

PSAG: 7 @ 8pm th

Ambassadors 21st

Living Well Course

1/8/15/22 @ 630pm

PSAG: 4th @ 8pm

Parent Connect 5 @ 730pm th

PSAG: 2nd @ 8pm

Parent Connect3rd

Ambassadors - 2nd

If you would like to get involved in any of our events or groups, find out more by visiting our events page at https://www.cfireland.ie/supportresources/members-events

Welcome to the Summer edition of Spectrum 2025.

Since our Spring edition, we were delighted to share that the European Commission granted regulatory approval for a label extension of Kaftrio® for those with rare variants causing their CF, the HSE agreed reimbursement on the 8th of July, an incredible moment for those who have not had access to modulators until now. We reflect on the tireless work and milestones achieved by those who brought us to this point.

In this edition we also hear from our members Trevor O’Donoghue, Emma Hempton, and Courtney Holt, while Daniel Goldstone, Senior Clinical Psychologist from SVUH, provides us with an insight into his work.

Thank you to everyone who shared feedback on our new look - we have listened and made some further changes that we hope you like. We are excited to introduce you to our team in the new column, and we launch our first edition of ‘Spectrum+’, a supplement where we take an indepth look at various topics, starting with our report from ECFS 2025.

Looking ahead to 2026, we invite you to save the date for our CFI Community Conference on February 7, 2026 in the Limerick Strand Hotel, more details coming soon.

Of course, none of the work we do can happen without our incredible fundraising volunteers and supporters, you can see some of their achievements from the last few months and we invite you to join us on our Head2Head Walk on September 7, 2025.

EDITOR: Nicola Delaney Foxe

DISCLAIMER: The views of contributors when

do not necessarily reflect the position or policy of CFI

FRONT COVER: Photographer Trevor O'Donoghue on Macgillycuddy's Reeks

Hi,

I’m Trevor. I’m a photographer, mindfulness and life coach, nature lover and someone who’s lived with CF since birth.

I grew up in Killarney, the youngest of six. My sister Karen passed away from CF when she was just 12. I was only a few months old. Even though I don’t have memories of her. Her story lived in our house and became part of mine.

From early on, there was a quiet fear in me. I knew life was fragile and often thought about not being around for very long. A doctor once told me that, all going well, I’d make it to 18. I’d lie awake wondering about my future and whether I’d get to experience the things “normal people” do. Sometimes I wish I could tell that anxious kid: “You’re going to be fine. You’ll find your own way”. I’m 40 now and I’m living well.

Finding Movement

I played a bit of sport growing up. I was soccer mad, but I was too anxious to really enjoy it. I’d get stuck in my head, overthinking everything. I did enjoy physical activity, though. I wanted to be fitter and stronger than my CF. I loved lifting weights and challenging myself, even training in MMA for a bit. Movement always made me feel better, even if I didn’t fully understand why.

Physical activity made me feel like I was pushing back against the fear. It wasn’t just about strength; it was about proving to myself that CF didn’t get to decide what I could or couldn’t do.

I’m grateful to have the level of health I do, and I never take it for granted. Everyone’s journey is different and this isn’t about comparing. It’s about finding what works for you. Sometimes feeling better is as simple as getting outside for a few minutes, taking deep breaths and finding small ways to feel more like yourself, but we don’t know what works or what we’re capable of until we try.

Falling Into Photography

Anxiety was always there. I definitely didn’t thrive in school. I struggled to concentrate and although no one used terms like ADHD back then, I know now my mind just worked differently.

My first break came when I started helping my cousin, a photographer. I carried bags, handed over lenses and slowly learned the ropes. One day he handed me a camera and said, “It’s in auto now, snap away today, but learn how to use it properly.” That one moment changed everything.

Photography fascinated me straight away. For the first time, I felt curious enough to learn. It gave me something to focus on, something that kept me engaged and gave me purpose. You’re never going to learn everything about it, and that’s the beauty. I could learn at my own pace and in my own way, but no matter how much you learn, you only get better with practice. I’m still learning new things 20 years later.

Photography stuck with me because it wasn’t just about capturing what I saw, it was helping me understand myself. It didn’t just show me the world, it reflected my inner world back to me. Every time I pressed the shutter, I put a little piece of myself into the frame. It’s both cathartic and creative. It can be used to take a break from what’s inside or a way to process feelings without words.

Photography Showed Me Nature

I’m a curious person. I wanted to take pictures in wild places, but before carrying a camera up a mountain, I had to carry myself there first. No camera phones in pockets back then.

So, I started hiking, trail running and building stamina. I ran a marathon and took part in adventure races. Kayaking, sea swimming and camping came into the mix too. I even renovated my van into a mini camper. Nature became another great healer for me. It’s where we come from and where I feel my best.

Photography has always been my guide, leading me to places I never thought I’d go. Wanting to take cool pictures motivated me to explore more. What I actually found was a new way to experience life. I thought I was chasing pictures, but I was really discovering and seeing different and new perspectives.For me, nothing compares to the calm feeling when you’re on top of a mountain, far from worries and everyday noise

Living Well –One Picture at a Time

“You’ve come this far. Now live like it matters.”

Sometimes the mental picture means more than the one you take. It’s not the view, it’s the feeling of being alive, living fully and free.

Burnout, Therapy & Finding Balance

Nearly a decade ago, I started my own business. Like most new business owners, I took on everything and pushed myself too hard. Eventually, I burned out. Luckily, I’d already found therapy, mindfulness and other self-care practices, which helped me recover. Burnout felt like failure, but it was a wake-up call to slow down and find balance. It taught me that proving myself doesn’t mean pushing to breaking point. It meant focusing on what mattered more and letting go of trying to be “stronger” than CF. CF is just a small part of who I am.

I realised that taking pictures wasn’t just my job, it was my therapy. It helped me slow down, pay attention and find peace. Photography gave me direction and focus. Mindfulness and other practices gave me tools. Together, they’ve kept me grounded when life felt chaotic.

Focus On Happiness: Photography as a Career and Wellbeing Support

I’ve spent over half my life, 20 years working as a photographer, mainly shooting weddings these days. It can be physically demanding and mentally taxing, but it also allows me a creative outlet. I spend time outdoors, connect with people and share in the joy of their biggest celebrations. One of the biggest benefits of being a photographer is the freedom it allows me. I choose my schedule, plan my work around my health and make sure I have time to look after myself. I work to live, not the other way around.

My partner Ciara and I also created Focus On Happiness. A community built on mindful photography for positive mental

health and everyday well-being. It’s not about being “great” at photography; it’s about using picture-taking to reflect, slow down, see life differently and focus on what matters. Through workshops, challenges and weekly themes, we use photography to stay in touch with our well-being.

If life has taught me anything, its - LIVE IT! Nobody’s life is perfect and normal is a silly thought. Life is messy, unpredictable and perfectly imperfect. There is a story of resilience in everyone and it looks different to all. Sometimes it’s climbing mountains and other times it’s just getting through the day. Social media might make people feel differently, but both achievements are worth celebrating in my eyes.

I hope this reminds you that your story isn’t just about a health condition. It’s also about what you create, where you focus your energy and how you choose to live.

“You’ve come this far. Now live like it matters.”

A Beautiful Legacy to Leave

My name is Emma Hempton. I’m a pwCF and I had a Liver Transplant in August 2024.

I was diagnosed with Cystic Fibrosis at 3 months old. I was then diagnosed with Cystic Fibrosis Related Liver Disease when I

was 10 years old. Over the years, with the extensive abuse on my liver from my muchneeded medications for CF, my liver got more and more cirrhosis.

Cirrhosis is scarring that causes the tissue to harden which prevents blood from passing through the liver, leaving blood flow with nowhere to go. The human body will always try to adapt in order to function. This resulted in the blood flow passing back

my heart. However, with the rise in blood pressure in my oesophagus, the blood began to pool in sacks known as varices. On five occasions, these varices popped, causing near-fatal internal bleeds. Each of these bleeds would require emergency resuscitation and bags of blood transfusions and would set me back massively in my health.

After my fifth internal bleed, I got a type of stent called TIPPS placed in my liver in the hopes that it would solve the issue. Although the TIPPS did relieve the pressure, my body didn't agree with it and my health unexpectedly deteriorated. Instead of solving the problem, at the age of 23 years old, I was diagnosed with End Stage Liver Failure. It was a massive shock. I remember thinking “I’m just a kid. I have so much more I want to do. I want to travel, meet new people, get

If you are affected by the issues raised, or are in need of financial support or advice related to transplants, please get in touch with the Member Services team on 01 4962433 or memberservices@ cfireland.ie

Leave

"I’m now 10 months post transplant and I couldn't be more grateful to the family of my donor for making the decision to think of others during their grief...."

married, have kids and be a good mother, live my life!” I was so upset to think that this was it.

Thankfully, after months of invasive testing, I was placed on the Liver Transplant List. I felt over the moon that something was going to be done. But that hope soon vanished as the days turned into weeks turned into months. I felt completely helpless. Every time a phone rang my heart would stop thinking it's “the call,” but it wasn't.

My health rapidly deteriorated. The increased pressure on my liver resulted in Edema which is the buildup of fluid in the arms and legs, and Ascites which is the buildup of fluid in the belly. Ascites put pressure on my lungs making it harder to breathe, while at the same time, preventing me from being able to do my airway clearance. My respiratory health was impacted at a time where I had to be my most fit and ready to fight through this massive operation in order to survive.

My liver could no longer filter toxins from my blood resulting in Hepatic Encephalopathy, which meant there were toxins on my brain causing severe brain fog. I felt like I was losing myself right before my own eyes. I was barely able to hold a conversation, I couldn't process emotions and everyday tasks became olympic sports. I also had severe fatigue and was barely able to stand for 5 minutes. I was basically house bound. I couldn't do anything which made my days longer and the waiting feel even more of a lifetime than it already was. It was my own personal purgatory.

Due to my requirements, it proved harder to get a match. The Transplant Team grew more and more concerned that they wouldn’t find a match on time. I needed a young liver, and unfortunately, not many young people think about becoming organ donors. There was nothing I could do to speed it up. I felt so guilty even wishing for my life to be spared because I knew that it meant I was wishing for someone else’s to end. Unless you're in the situation, which I truly hope you never are, you’ll never understand what it feels like to sit around, feeling your flesh rot within, waiting for someone to save your life.

After a year and a month on the transplant waiting list, at the age

by Emma Hempton

of 24 I finally got the call. I got my transplant in August 2024. I spent three weeks recovering in hospital and I'm delighted to say that I’ve been doing amazing ever since.

The laws around organ donation have changed. On June 17th 2025, The Human Tissue Act 2024 commenced, introducing the Soft Opt Out System of Consent. This means that if you are 18 or over, you will be automatically considered an organ donor unless you opt out. This change is greatly needed as there are currently approximately 600 people on organ transplant waiting lists in Ireland. By introducing this system, the organ donation pool will open, speeding up waiting times and saving more lives.

It is important to note that, although you will be automatically assumed as a donor, your family will still be consulted beforehand as has always been the case. That's why it's incredibly important to have a conversation with your family and ensure that they know your wishes so they can keep them at the forefront of their decision.

As a transplant recipient, I couldn't be more excited about this change. I believe if this had been in place while I was on the waiting list, I would've gotten my transplant much quicker which would have greatly minimised the pain for me and my family. I urge you to welcome this new law with open arms. Although you are totally within your rights to opt out, I encourage you to think of those who are currently, and will in the future be, in a similar position as I was. You could be the one who could save their life. Just one donor could save several lives. What a beautiful legacy to leave behind.

I’m now 10 months post transplant and I couldn't be more grateful to the family of my donor for making the decision to think of others during their grief. I will be forever grateful and I promise to honor my donor by living my life to the fullest and always wearing our scar with pride.

Did you know that CFI are part of the Irish Donor Network and have been actively cmpaigning for Soft Opt Out since 2019? CFI Fact!

Courtney - Mum to Shay, child with Cystic Fibrosis

Our journey with Cystic Fibrosis started December 2022, when our youngest, Shay, was 3 weeks old. We got a call from one of the nurses at Temple street, to come in the next day to meet with them. I will say that from that day, yes, our lives have changed, but what we thought those first few weeks about what to expect vs what we know now is very different.

From the day we got the diagnosis we knew we wanted to do all we could to help those with CF. As my husband Colin said to me in the hours following the diagnosis, ‘ we cry today and fight tomorrow’. For the next few months, with lots of help and support from our families, we had to figure out what that looked like for us. On 1st May 2023 at the start of CF awareness month, the Shay William Mc Donnell Project was born. The logo, the colours, the font all having a purpose to link ourselves to CF Ireland and to the American CFF. This was our way to put our thoughts, fears, journey, and questions out to the public and to spread awareness as best we knew how. The project also referred to as Shay’s CF Project, can be found on Instagram and through the website. All monies raised go directly to either to CF Ireland or CFF (USA). Since the launch of the project, we have raised €10,530 on Shay’s page for CF Ireland. This has been achieved through participating in the Head 2 Head walk, Women’s mini marathon also actively discussing Cystic Fibrosis throughout the month of May and by the incredible donations and fundraising that family and friends have done.

A Night to Remember TheLordMayor'sBall'25

When it was getting time for me to return to work, I was extremely apprehensive about having Shay go to creche 4 days a week with all the possible ‘germs’, unknown sicknesses and potential hospital visits. However, from the initial diagnosis, my company, EHL Experiences, has been nothing but supportive. My colleagues are an extended family, and I am lucky enough to be starting my 8th year working for the company. Growing in the EHL Experiences team into Group HR Manger has given me a platform to put CF Ireland forward as an option for internal fundraising. The leadership team, Directors and CEO have always encouraged me to talk openly about Shay, the project and all we have created to spread awareness. We have made Shay’s CF project the charity of choice at our Halloween staff lunch, our 2023 Christmas party raffle prizes, and have received donations for the silent auction we had on his Instagram page. All of these shared events with EHL Experiences and Shay’s CF Project are what lead to a conversation I had in July 2024 with our CEO, Padraic O’Kane. We were discussing Shay, his health, and how making CF Ireland one

of the chosen charities for the Lord Mayor’s Ball for 2025 would be an amazing personal and professional achievement for me.

Colin and I attended the Lord Mayor’s Ball then on Saturday 10th May 2025. We laughed, we cried, we hugged, and we had the pleasure of meeting some amazing women who are a part of CF Ireland. Their journeys are just amazing. Like so many affected by CF, the fundraising that is done and the new medications that are available are making the trajectory for Shay’s life so different, for the better. It’s a night I will not forget, to be there for Shay, to hear the stories that bring hope to the next generation, it really makes you want to keep going and keep talking about Cystic Fibrosis.

Bernie - Chairperson CFI

We arrived just after 6pm to support the organisers in whatever way we could before the other guests arrived at 7pm. As the guests arrived, we were greeted by the Lord Mayor of Dublin Counsellor Emma Blain and a photo snapped which presented us with the opportunity to thank her and briefly chat about CFI. It was such a privilege to be one of the charities on the night, stories that bring hope to the next generation, it really makes you want to keep going and keep talking about Cystic Fibrosis.

On entering the ballroom with all its glitter, we were set for a great night. Alan Shortt was MC for the night and really worked the room for the auction which raised even more funds for each of the charities. After each course a video was shown of each of the

the 10th May, Cystic Fibrosis Ireland was honoured to have been nominated by Courntey as charity partner for the annual Lord Mayor’s Ball sponsored by EHL Experiences. A phenomenal €43,500.00 was raised for CFI on the night. Thank you to everyone who was involved. Here, we hear from some of those who attended.

charities with all of them having a very powerful impact on the audience. After the meal and speeches, we met the young couple who nominated CFI. They were so delighted to meet us and when we started to explain how we support families and how Caroline lives with CF, you could see the impact this had on them - to realise there is a bright future living with CF. As we all know getting that diagnosis is devastating so to be able to see someone living with CF in adulthood is reassuring. They asked Caroline – Do you mind me asking what age are you? When Caroline proudly disclosed her age and that she is a grandmother, it was a moment to be treasured. All in all, an amazing experience from start to finishmost importantly with funds raised to support CFI and awareness raised by the amazing and powerful story shared by Jill McElhinney Neilon of her journey of living with CF.

Carol - Adult with Cystic Fibrosis

When I heard about the Lord Mayors Ball I jumped at the chance to go. Anyone that knows me knows I love any reason to get glammed up. It was a very special evening and for three amazing charities, The Alzheimer’s Society of Ireland, Dublin Rape Crisis Centre and Cystic Fibrosis Ireland. Of course I wanted to be there to support our own - especially when you are a person living with Cystic Fibrosis. With all the support my family and I have received from CFI in the past, I wanted to return the honours. It was extremely emotional hearing from people who are affected, and also how they lean on the three charities for support and advocacy. Hearing all three stories would make you feel extremely grateful. We met the Lord Mayor Emma Blain, who is a lady and a very funky one at that with her pink hair. She spoke so well on the night, and it was great to hear the back story on how the charities are picked and the work she does in the community. I also got to meet another beautiful family on the night who have a beautiful little boy who is 2 and living with Cystic Fibrosis. He is already paving his way in the world and doing amazing health-wise. His beautiful family has already done so much fundraising and creating awareness for CF. They were a wonderful couple, and it was just amazing to hear their story. I feel so blessed to have been well enough to attend the Lord Mayors ball and to have been in great company on the night. Needless to say, the shoes came off and the hips were shaking to a great band. Big shout out to the girls in the Round Room in the Mansion House for supplying us with flip flops – taking care of our every need!

Norma - Friend of the Association

I went to the ball as a plus one with my best friend Caroline. We love to have an occasion to get dressed for a good night out with food and music, as this was in aid of CFI it was another good reason to attend. When an event like the Lord Mayors Ball is dedicated to a charity close to your heart, it is an opportunity to spread the word about CF and the life challenges for PwCF but also the life achievements of PwCF. I couldn’t not have attended the ball. We sat at a lovely table alongside all her CFI buddies, there was just one person I didn’t know at the beginning of the night, by dessert we were chatting like old friends and having photos taken together. Not being shy of the dance floor meant we danced all night and the Band choice was excellent also and chatted away to everyone.

"We were absolutely delighted to have been nominated as a charity recipient for the Lord Mayor's Charity Ball 2025. A massive thanks to Courtney, to EHL Experiences, to the Lord Mayor Emma Blain and her team, and to everyone who helped raise €43,500.00 on the night. This is an incredible amount and will go a long way to supporting people with CF in Ireland. On behalf of the CF Community and all at CFI - thank you" - Sarah Tecklenborg CEO CFI.

Learning AIM: Access

Learning and playing together Access and Inclusion Model

Do you have a child starting preschool this September? Did you know there are supports available for children of all abilities and health considerations, to create a more inclusive environment in pre-schools?

The Access and Inclusion Model (AIM) works to ensure that all children, regardless of ability, can benefit from quality early learning and care. It is delivered through the ECCE (Early Childhood Care and Education) programme and provides two types of support:

• universal supports to pre-school settings

• targeted supports, which focus on the needs of the individual child, without requiring a diagnosis.

Universal supports are designed to create a more inclusive culture in Early Learning and Care settings through training courses and qualifications for staff. For many children, AIM universal supports will be sufficient to ensure inclusion.

Where universal supports are not enough to meet the needs of an individual child, targeted supports are available to ensure the child can meaningfully participate in pre-school.

In addition to targeted and universal supports, AIM provides universal design guidelines for Early Learning and Care settings and AIM Inclusive Play resources. The most up-to-date information can be found on the AIM website: The Access and Inclusion Model HomepageAccess and Inclusion Model - https://aim.gov.ie/

Since its commencement in 2016, AIM has helped tens of thousands of children access and meaningfully participate in the ECCE programme nationwide. It has been recognised internationally and has won awards for both excellence in practice and inclusive policy. Applications for this programme are currently open, and information non how to apply can be found here

To assist with this application process, CFI are delighted to invite members to join us for an information evening with Caroline O'Riordain from Better Start. Better Start is a national initiative established by the Department of Children, Disability and Equality (DCDE) and hosted by Pobal. The initiative promotes quality and inclusion in Early Learning and Care (ELC) settings for children from birth to six years of age in Ireland. More information can be found here. Caroline will talk attendees through the AIM support programme and how it can benefit and support children with CF at this exciting milestone in their life.

The information evening will take place on the 20th August 2025 at 6.30pm online via Microsoft Teams. Interested members must register in advance and can secure their place here

Caring for the Mind

The Role of Psychologists in CF and Strategies for Mental Well-Being

by Daniel Goldstone, Senior Clinical Psycologist, St Vincents University Hospital

CF is a lifelong condition that demands extraordinary physical resilience—but it can also take a toll on mental health. In Ireland, CF care teams recognise the importance of both mental and physical wellbeing as part of a holistic picture of healthcare for people with CF. In this article, we explore the role of psychologists within Ireland’s CF multidisciplinary teams. We’ll then offer practical strategies—lowtech and digital—for looking after your mental wellbeing. A special spotlight is placed on managing isolation and loneliness - a challenge people in the CF community may face from time to time.

The Psychologist’s Role in the CF Team

Modern CF care is delivered through a multidisciplinary team (MDT), which includes doctors, nurses, dietitians, physiotherapists, social workers—and psychologists. Every CF specialist centre in Ireland aims to provide psychological support as part of the healthcare package. The CF psychologist’s role is to support patients in addressing the emotional and psychological challenges of living with CF across all life stages, from childhood to adulthood.

What Psychologists Do

Psychologists in CF teams help with:

• Managing emotions: Depression, anxiety, grief, and stress are common—and manageable—responses to chronic illness. Psychologists offer a safe, non-judgmental space to explore these feelings and generate strategies to manage illness and mental health more effectively.

• Treatment adherence: When routines become overwhelming, psychologists can help explore what’s getting in the way, build motivation, and come up with a plan to make treatment adherence easier.

• Hospital-related anxiety: Coping strategies for admissions, procedures, or transitions like organ transplant are part of a psychologist’s toolkit.

• Life decisions related to CF and health: Support around relationships, fertility, career planning, and parenting with CF are all things that psychologists might be able to offer input on.

• Family dynamics: CF psychologists also support parents, partners, and siblings in understanding and managing the emotional side of CF. In paediatrics, psychologists can help parents manage any difficulties they experience in caring for a child with CF.

How a psychologist works

CF psychologists are integrated into the team—they see people with CF, collaborate with other professionals, and coordinate care. They may meet you during routine visits, in hospital, or refer you to other services when needed. They work closely with the MDT to address practical challenges that affect emotional and physical well-being.

For those who need extra help, CFI offers support an funding opportunities to connect individuals or family members with qualified counsellors. The HSE also provides psychology services through primary care and mental health clinics. See the CFI and HSE websites for

Caring for Your Mental Health with CF

Mental health isn’t just about preventing crises—it’s about building resilience, maintaining joy, and finding support. Here are some practical, everyday strategies to help you tend to your emotional well-being:

1. Build a Sustainable Routine

A predictable daily structure can reduce stress and give a sense of control. Use planners, whiteboards, or digital calendars to track treatments and appointments. Schedule enjoyable activities alongside medical tasks to create balance. Use a pill organiser to plan your medications for the week and take the stress out of each day.

2. Move, Rest, Nourish

• Physical health supports mental well-being. Make sure to prioritise:

• Movement—Light exercise like stretching, walking, or yoga, and more intense aerobic exercise and strength training can boost mood and energy.

• Rest—Aim for consistent sleep patterns and a calming bedtime routine. This is very important for your physical and mental health.

• Nourishment—Good nutrition fuels both body and brain. Dietitians recommend using an app such as Carbs & Cals to log foods and calculate accurate pancreatic enzyme dosing based on what you’re eating. Seek a dietician’s advice if you need more information about this.

3. Use Mindfulness and Relaxation Tools

Mindfulness-based practices help ease stress and bring calm.

Free apps like Insight Timer, Smiling Mind, or Headspace offer guided meditations. Prefer something low-tech? Try:

• Deep breathing exercises

• Journaling

• Gentle yoga

• Prayer or repeating affirmations

Aim for five minutes a day to begin with—consistency matters more than duration. Once you have built a habit, you can increase the amount of time you spend on the activity.

4. Make Space for Joy

It’s vitally important to make space in your life for things that you enjoy. Prioritise hobbies that give you purpose or pleasure—drawing, cooking, music, gaming, writing, gardening, or anything that brings you energy.

Even passive hobbies, like reading or watching a series, can be a useful way to create space for yourself. Pursuing interests helps affirm your identity outside of CF. This helps with improving mood and motivation, and helps remind you that life is about much, much more than having CF!

5. Stay Connected

Connection is a powerful antidote to stress. Even if face-to-face meetups aren’t always possible, connection can happen in many forms:

• Regular phone or video calls with loved ones

• Sending voice notes or photos

• Playing games online with friends

• Joining CF forums or Facebook groups (while avoiding comparison traps)

If you feel isolated, let people know. Many loved ones want to help but don’t always know how. Help them help you by communicating your emotional and physical needs with them.

6. Spotlight: Coping with Isolation and Loneliness

CF often forces physical separation—from friends, work, or school. Add infection control recommendations, and many people with CF experience loneliness—sometimes both physical and emotional. Most importantly, remember: you’re not alone in your experience. It’s normal to feel alone when you can’t join in as others do. But you are not the only one feeling this way—many in the CF community (and many people with other chronic diseases or issues) are quietly navigating the same emotions. It’s okay to grieve the moments CF has cost you, and it’s also okay to want connection and to pursue a life of meaning and purpose.

7. Ask for Help: If loneliness feels heavy, talk to someone

That might be your GP, CF psychologist, private counsellor, or calling the Your Mental Health information line on Freephone 1800 111 888. You can also send a free text to 50808 to get support and information about services. There is no shame in asking for support. In fact, it’s one of the most courageous steps you can take. Many resources are available to you if you ask for them. Your GP can link you in with your local counselling in primary care (CIPC) team if you have a medical card, for example.

Final Thoughts

Psychological well-being is a core part of thriving with CF. Whether it’s reaching out to loved ones, creating a mental health toolkit that works for you, or talking to a professional, your mind deserves the same level of care as your body.

While the above tips are useful to know, they can only make a difference for you if you take action and try them. Above all, remember: you are not alone. You are part of a strong, supportive CF community that understands the highs and lows, the fatigue and the fight, the joy and the grief. With the right support, it’s possible to build a life that’s not just manageable—but meaningful, connected, and full of moments that matter.

Daniel is a Senior Clinical Psychologist working as part of the multidisciplinary team in the National Centre for Adult Cystic Fibrosis at St. Vincent’s University Hospital in Dublin. Daniel focuses on providing evidence-based psychological services in an empathic, person-centred way, working with people with CF to help them live more fulfilling, purposeful, values-driven lives. He has extensive experience working with complex medical and psychological issues in both the public and private sectors.

Tips for managing moments where you feel alone or isolated:

1. Acknowledge the Feeling: Name what you’re feeling. “I’m feeling disconnected today” is a powerful start. Suppressing loneliness (and other emotions) often makes it worse. Once acknowledged, you can begin to address it.

2. Create Moments of Connection: Plan small interactions that connect you to others—an online coffee date, a shared Netflix watch party, or sending a message to a friend. Initiating contact can feel vulnerable, but it’s also empowering.

3. If you’re unsure where to start, try CFI’s community forums or check out CF-specific social media accounts and blogs where others share relatable stories.

4. Get Outside, Even Briefly: Nature can provide powerful emotional grounding. Even a few minutes outside, listening to birdsong, or tending a plant can foster a sense of connection to the wider world.

5. Embrace Purposeful Alone Time: Being alone doesn’t always have to mean being lonely. Use solitude for reflection, creativity, or calm. Audiobooks, podcasts, creative writing, or learning something new online can all provide enriching “solo company.”

6. Consider Pet Companionship: If your health allows, a pet (or visiting one) can bring warmth and companionship. Even watching nature videos or webcams of animals can lift spirits on hard days.

7. Join or Start Something: To connect with others, interact with others! Consider taking action by doing one of the following:

• Volunteer for a cause that has meaning for you

• Take a class or learn a skill – in person or online

• Join a hobby-based community – in person or online, or both

Being part of something bigger, especially one not centred around illness, can counter feelings of disconnection.

Team Talk @

About

Name: Nicola Delaney Foxe

Role: Strategic Communications Senior Coordinator

Based in: Dublin

I started working in CFI almost four years ago just as Covid ended (yes it has been that long since then!!). I had been working for myself as a Yoga Instructor for children with special needs travelling the country to meet groups in libraries, schools, festivals etc, but the universe changed my path, and I retrained in 2021, completing a Masters in Strategic Comms in DCU. I applied for this position, and the rest, as they say is history. The first campaign I really got involved in when I started was the 'Kaftrio 35' campaign. It opened my eyes in a very real way into the challenges of CF, and I was in awe of how the community banded together and got behind the families effected.

Role

My role is varied, busy, fun, challenging but most of all it is very worthwhile. I am priviledged to work alongisde and for members raising awareness of CF, not to mention the amazing team who are dedicated to the community and the charity.

Fun Fact

When I was a child I wanted to own a restaraunt when I grew up - eh... not quite how it worked out but I'm very happy where I am now!

Favourite Motto

I know not everyone will resonate with this, but my favourite motto is 'Everything happens for a reason'.

Currently Enjoying:

Reading: 'Love' by Roddy Doyle

Listening To: Q102 as charity partners with CFI

Watching: 'Victoria' on Netflix - I absolutely adore period dramas. I really do believe I was part of that world oncemaybe that is why I love CF House so much - but I'm still not sure if I was upstairs or downstairs....

COMING UP: FUNDRAISING

Sept 7th – Head2Head Walk

Walk from Howth Head to Bray Head in support of Cystic Fibrosis Ireland.

What: Stunning coastal walk from Howth Head to Bray Head

How: Register at www.cfireland.ie

Where: 9.30am start in Howth!

Sept 11th

10th Annual Malin2Mizen

What: 4 day fundraising from Malin Head Head

How: Register for 2026 www.cfireland.ie

Where: Meet on Sept 10th Redcastle Hotel,

Oct 26th - Irish Life

What: How:

Where:

If you have the CFI running

Dec 5th - Christmas Register your fundraising €20 Early Bird rate available until 31st July Don't miss out!

What: How: Where:

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 then claim an extra 45% on top of your donation from revenue.Please contact us to receive you CHY3 form. All you need to do is sign it

To register your interest for these events, for more events throughout visit our website www.cfireland.ie, contact the CFI Fundraising

EVENTS

11th - 14th

Malin2Mizen Cycle4CF

fundraising cycle

Head to Mizen

2026 now at www.cfireland.ie 10th at the Inishowen

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

Sept 16th to 23rd –CFI International Walk - Slovenia

Life Dublin Marathon

Irish Life Dublin Marathon Register at www.cfireland.ie

Dublin, October Bank Holiday

have a place, register now to join CFI team and we will send you our running top and fundraising pack!

Christmas Jumper Day 4 CF

Christmas Jumper Day 4 CF!

Register at www.cfireland.ie

Where: In work or at school!

Register online and we'll send you out fundraising pack, complete with Bah Humbug badges!

What: CFI International Walk 2025 in memory of Bridie Maguire

How: Register at www.cfireland.ie

Where: Slovenia

Picturequse trails, local delicacies, guided activities and free time - don't miss out!

Nov 2nd - TCS New York City Marathon

What: Hugely popular New York City Marathon

How: Register at www.cfireland.ie

Where: New York, New York!

Register your interest now for the New York City Marathon 2026.

April 26th, 2026 - TCS London Marathon

What: TCS London Marathon

How: Register at www.cfireland.ie

Where: London!

Register your interest now to secure one of our guaranteed charity places in the sold out TCS London Marathon!

International Treks - all year round - challenge yourself, change lives!!

Our International Challenge Treks take place throughout the year Register at www.cfireland.ie to raise funds while taking a trip of a lifetime to Mount Kilimanjaro, Maachu Picchu or Everest Basecamp!

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

STRENGTH IN OUR COMMUNITY

Thank You For Your Wonderful Fundraising!

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 - please keep up the great work!

Kilkenny College

The staff and senior prefects from Kilkenny College presented our Fundraising Manager Fergal with a cheque for €10,000 in March. This huge amount of money was raised from a 24 hour sponsored swim in memory of Deirdre Roche (PwCF). The money raised was added to funds raised from their Santa Run and a massive thank you from CFI to all involved.

Duleek 10K

A massive thank you Anne Noone and the organising committee for the Duleek Cystic Fibrosis 10K Remembrance Run which took place on Sunday, 26th April. Most importantly, thank you to everyone who took part in the wonderful event with €29,326 raised.

1 in 1000 / VHI Women's Mini Marathon

A huge congratulations to everyone who joined our One in 1000 Team to take part in the Vhi Women’s Mini Marathon. Participants joined us at The Black Door on Harcourt Street for the warm up and afterwards as we relaxed with some music, food and good company. Thank you to our sponsor Fyffes, Sylvia Ferguson from Sylviayoga.com and all who supported the event.

65 Roses 2025

We are so grateful to all our volunteers who sold roses across the country in Dunnes Stores, shopping centres, schools and workplaces. Well done and thank you to everyone who organised a 65 Roses Day Challenge. 65 Roses Day continues to grow each year and this is made possible with the help of all of our volunteers and branches. We look forward to making 65 Roses Day 2025 even bigger and better again.

HSBC

A huge thank you to Siobhan Hale who nominated CFI as one of HSBC Ireland’s Employee Nominated Charities. They will be supporting us throughout 2025 under their Employee Participation progamme. CFI is a charity close to Siobhan’s heart and she was honoured to present us with a cheque for €10,000 in March.

TCS London Marathon

We would like to to say a huge thank to Patrick, Ronan, Joe and Conor for taking part in and successfully completing the TCS London Marathon on Sunday, 27th April on behalf of Cystic Fibrosis Ireland and raising a massive €6,935.

Thank you so much!

PTSB

PTSB Community brings people and communities together for social good. They focus on supporting local initiatives that make a real difference. With votes cast from across Ireland, Cystic Fibrosis Ireland were absolutely delighted to be selected as a PTSB Community partner for 2025!

Fundraising Update: Looking forward to our Head2Head Walk ‘25

On the 7th of September, hundreds of supporters, fundraisers and walkers will embark on a truly memorable journey from Howth Head to Bray Head to raise funds and awareness for people with Cystic Fibrosis in Ireland.

The Head2Head Walk is one of the most popular events in our calendar of events every year. This iconic walk from Howth Head to Bray Head takes you along a stunning coastal walk, through the city centre and stopping at Sandymount strand for a well deserved rest and lunch. Some walkers choose to finish their walk at Sandymount after the first 19km and receive their finishers medal here. Others opt to begin at this point, walking the next 18km to Bray, while others begin at Howth and walk the full 37km finishing at the sea front in Bray. If you would like to join the Head2Head Walk this year, visit www.cfireland.ie to sign up and be a part of something wonderful. The early bird discount ends in July so don't miss out on this amazing event! Here is what previous years paticipants have to say about the event:

I have friends who have children with CF for a few hours we go through a bit of tough walk, it's nothing compared to what people with CF go through day in, day out. If we raise money and awareness of their struggles it's all worth it. It's also a beautiful walk and so amazing how many people from all walks of life come together for the people we love.

The support team was absolutely fantastic they were top notch and went to such lengths to make it a great event - well done to all

CFI Fact!

Did you know that the funds raised by our supporters have enabled the CFI Member Services team respond to 768 calls and 1582 emails between June 2024 and July 2025?

Thank you for making this possible!

Volunteers were so friendly, chatting to friends along the way, raising money for a great cause

This was a brilliant day and made so memorable. I really felt that the Head2Head team did everything they could have done to ensure the walkers were looked after. Everyone was in good humour and as a participant, I was made feel valued and appreciated for being part

Campaign Update: Access to Medication

Since 2019, CFI have been working alongside members and parents of children with CF to ensure that every person with CF in Ireland has access to the highly effective modulator therapies. While this has been a long road, much progress has been made with the latest positive announcement made in April of this year when the European Commission granted regulatory approval for a label extension of Kaftrio® to those with rare genetic variants.

TimeLine of Kaftrio in Ireland

Following this long awaited annoucment, on 8th July the Kaftrio® extension was then granted approval for reimbursement marking further positive strides for our community. With this approval, the indication has been expanded to include all patients ages 2 years and older who have at least one non-class I mutation in the cystic fibrosis conductance regulator (CFTR) gene.

Cystic Fibrosis Ireland would like to recognise the hard work and tireless dedication of the Access to Medication Working Group and their efforts to drive this development forward. While this progress has been warmly welcomed, there is however still work to do to ensure that no person with CF is left behind. Our work continues and our focus remains steadfastly on those unable to benefit from this extension.

Supports are available for those within this group, and if you would like more information, would like to be part of the group, or would like to be connected with others, please reach out to memberservices@cfireland.ie

CFI Member Services Support and Advocacy Team memberservices@cfireland.ie 01 496 2433 Monday to Friday - 9am to 5pm

Member Services Update: Pathways to Possibilities

On 29th April CFI attended the Pathways to Possibilities Webinar held by AHEAD.

AHEAD is an independent non-profit organisation working with and for disabled people to shape inclusive and empowering environments in tertiary education and employment with their main focus on further education and training, higher education and graduate employment.

Ireland has the lowest disability employment rate (32.6%) and the highest disability employment gap (38.6%) among EU member states. In this context, the Pathways to Possibilities seminar explored the barriers that prevent disabled people from accessing the same opportunities as their non-disabled peers.

Access to Third Level education experience of PWD

Students with a Disability can access third level education on a reduced points incentive via the CAO application DARE option. A report published by Ahead on the experiences of students interacting with Disability Support Services (DSS) in higher education shows that 7.4% of all students enrolled in participating higher education institutions were registered with the DSS. This is a rise of 319% in the number of students with disabilities attending higher education and registering with disability support service in the last 14 years.

A survey of students attending third level education showed that while 19% of students reported having one or more disabilities, only 7.4 % of students with a disability registered with the corresponding disability support service at their chosen place of study. This shows a significant gap in the disclosure to the place of study and this precludes students availing of disability support services. These services vary depending on individual needs assessment but one example of a practical support provided to a student is the provision of a LiveScribe® smart pen. The varying types of support provided by disability support services can be found at https://www.ahead.ie/ disability support. A very useful guide for navigating the disclosure of your disability to your course provider or disability support service is also available here.

AHEAD have also published a summary report of students engaged with Disabiltiy Support Services in Higher Education and the Altitude Charter was developed as a resource toolkit towards Universal Design for Learning to try standardise universal learning and inclusivity for all across Higher Education Institutions in Ireland.

Post graduate experiences of PWD

Only 3% of the total postgraduate student population register with disability support services. LaunchPAD is a project and resource

to monitor and help students with disabilities pursuing postgraduate education. This is an initiative integrating the worlds of postgraduate academia and disability (PAD). If you are a person with CF currently engaged in post-graduate study why not sign up for the LaunchPad community mailing list by clicking here.

You can read more on LaunchPad here

Work experiences of PWD

Widening Inclusion of Disability in Employment (WIDE) is a framework developed in the context of Corporate Sustainability Reporting Directive [European Commission 2023a] (CSRD) and the European Sustainability Reporting Standards [European Commission 2023b]. This directive and standards mandate EU based companies to report on workplace disability inclusion. The Wide

framework was set up to drive positive change and inclusion of people with disabilities in the workforce.

Some of the key findings recommend equitable access to professional development opportunities, clear communication of career progression with retention strategies offering job-sharing, flexible training and a commitment to job security by employer groups.

Other Ahead work-related resources and initiatives to help PWD access employment include:

WAM (Willing Able Mentorship) programme brings graduates with disabilities and employers together through paid employment placements while Get AHEAD – is an Ahead organised programme to help students and graduates with disabilities get job ready, generate CV’s and prepare for job interviews. Other helpful employment supports for persons with CF include EmployAbility Service

and Employee Wage Subsidy Scheme.

If you have any questions on attending higher education, DARE scheme, post-graduate study, employment and getting job ready or disclosing your CF to an employer or college, you can get in touch with CFI Member Services team or contact any of the contacts listed.

Pathway to Parenthood

Exploring the Experience of People with Cystic Fibrosis and their Partners on the Journey Towards Parenthood and its Impact on Psychological Well-being

Aresearch team from the University of Limerick (UL), headed by Professor of Clinical Psychology, Donal Fortune together with Dr. Sharon Houghton, Sen. Clinical Psychologist at University Hospital Limerick (UHL) and Adjunct Senior Clinical Lecturer at UL and myself, Psychologist in Clinical Training and Doctoral Candidate in Clinical Psychology at UL, are embarking on an exciting new psycho-social study. This study examines the experiences of people with CF and their partners on their journey to parenthood in the current landscape of modulator therapies. This research aims to highlight the personal, psychological, and relational dimensions of becoming a parent in the evolving landscape of CF care.

Understanding a Life-Changing Journey

With advances in treatments like CFTR modulator therapies, more PwCF are considering parenthood – a milestone once thought unlikely. This study seeks to understand how these life-changing decisions are made and what they mean for individuals and couples. From emotional well-being to reproductive justice, the research covers a broad range of topics that have often been overlooked in clinical discussions.

Delving Into Lived Experiences

The research is guided by several important questions: How do PwCF and their partners experience the journey toward parenthood? What factors influence their decisions? How does CF shape identity and couple dynamics during this period? Importantly, the study also explores perceptions of reproductive justice – how social, medical, and emotional barriers may impact their ability to make choices freely and confidently.

These questions align with the study’s broader aims: to explore psychological well-being, identify supports and barriers, and offer recommendations for more informed, compassionate care. It’s about listening to what couples are really going through and using those insights to advocate for systemic improvements.

Why This Matters to the CF Community

Parenthood is one of the most profound life choices anyone can make. For people with CF, this journey often comes with extra layers of complexity – medical considerations, societal perceptions, and logistical hurdles. Understanding this experience is vital. The more we know, the better we can support the psychological well-being of individuals and couples on this journey.

PARTICIPAN

We are looking for people with relationship, who have embarked past three years or who are currently

Both you and your partner will take part time convenient to you, which will last approx. You will be asked about your medication you have CF. You and your partner will be of the journey to parenthood.

Follow the QR code or type the link the study and discuss with your willingness to participate (they sign up via QR code/link). You will both receive a welcome information.

Where We Are Now

The study has received ethical approval from the University of Limerick and has been shaped with valuable input from the CF Ireland Patient and Public Involvement (PPI) Panel. Their contributions helped ensure that the questions posed in interviews are relevant, sensitive, and grounded in real-world concerns. Recruitment is now underway across Ireland and the UK.

What This Research Can Achieve

This study has the potential to bring meaningful change by highlighting the emotional and practical supports that matter most to people with CF and their partners on the path to parenthood. By identifying where couples feel unsupported, or misunderstood, it aims to inform multidisciplinary CF teams, guide policy, and foster more inclusive reproductive health practices.

What’s Next?

We are currently looking for couples to take part in the study. If you or your partner have begun the journey to parenthood within the last three years – whether you are just beginning or already parenting – we would love to hear from you. Participants will share their experiences in a confidential, one-time online interview, each member of the couple will complete a separate interview. Your insights could help pave the way for more informed, empathetic support for future families in the CF community.

Meeting Recruitment Challenges

Recruiting participants who meet the study’s specific criteria has been the most significant hurdle so far. Despite growing interest in the topic, reaching eligible couples – who are also ready and willing to reflect on such personal experiences – requires careful outreach. The team is working with CF organisations, healthcare providers, and online networks to ensure this important study finds its audience.

Looking Ahead: Sharing the Findings

Once interviews are completed and analysed, the anonymised findings will be shared widely, not only through academic journals but also with the broader CF community in accessible formats. These insights will also be presented at relevant conferences and published on the CF Ireland and UK CF Trust websites. The goal is simple: ensure this research translates into action, empathy, and improved care.

Add Your Voice to the Story

If you or your partner have recently embarked on the path to parenthood and would like to contribute to this vital research, your story could help make a difference. Every experience shared is a step toward understanding and better support for families in the CF community. For more information, contact: Selina Braddish: braddish.selina@ul.ie

Cystic Fibrosis who are in an ongoing embarked on the journey to becoming a parent in the currently planning to undergo this journey.

TWe want to hear from you!

hanks to all our members who sent us feedback about the new look Spectrum and the content. We really appreciate all comments and welcome your thoughts and suggestions. As you'll have read in this edition, there has been great progress made throughout 2024. More progress has been made behind the scenes and following the CFI AGM on the 18th July, we love to share just some of what has happened in 2024...

Your consent is important to us!

We always want to hear from our members, but if you prefer not to hear from us or prefer not to receive Spectrum by email or post, please do let us know.

SAVE THE DATE!

The Cystic Fibrosis Conference returns on the 7th February 2026 in The Limerick Strand Hotel.

Join us for a day of information, education and connection, and a night of dinner, dancing and celebration of the CF Community.

Keep an eye on our website for more details.

Get Involved....

University of Galway, CF Ireland and the CF clinical teams at CHI are running a study to discover what supports young people with CF, ages 13* – 25, need to make managing CF and moving to adult services easier. We want to hear from you or someone you know - please complete the survey here today! Visit https://buff.ly/4eoeumE today.

Find Brendan on Instagram: @bob_narrow

Are you interested in helping to develop our understanding of CF Liver Disease? Do you think you can use your experience and expertise as a person (or a parent of a child) with CF to strengthen and support the project? Your voice and opinions matter and if you would like to be a member of the PPI panel for this HRB/CFI funded project, we would love to hear from you. Visit www.cfireland.ie or email the team for more.

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

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.

Assistance 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.

Counselling & Psychotherapy

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.

Fertility Grant

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.

Bereavement grant

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.

Transplant Grant

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