Spectrum - Spring 2024

SPECTRUM

The magazine for people living with Cystic Fibrosis in Ireland

Getting '65 Roses Day' ready!

Also in this edition...

Sea Swimming for CF Alice Ward on sea swimming

I'm a long way from Tipperary Alannah Shesgreen on moving to Brussels

Celebrating Professor Charles Gallagher A look back over the career of Professor Charles Gallagher on his retirement... www.cfireland.ie

...and more inside!

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CFI FUNDRAISING EVENTS 2025 APRIL

11th: 65 Roses Day 27th: Duleek 10km 27th: TCS London Marathon

1st: One in 1000 / Vhi Women’s Mini Marathon

SEPT

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OCT

2nd: TCS New York City Marathon

5th: Christmas Jumper Day 4 CF

ALL YEAR

JUNE

5th: Paris2Nice 7th: Head2Head Walk 11th-14th: Malin2Mizen Cycle4CF 16th-23rd: CFI International Walk

5th: Irish Life Dublin Marathon

NOV

Register today on www.cfireland.ie

DEC

International Treks: Kilimanjaro, Machu Picchu, Everest Base Camp Spectrum / Spring 2025

CONTENTS 4 Sea Swimming for CF

by Alice Ward 6 I'm a long way from Tipperary...

by Alannah Shesgreen

8 Was there a time before 'Charlie'?

A celebration of the care and career of Professor Charles Gallagher 11 Film Review: The Irish Premiere of short film 'Salt' 13 CFI Signpost: Barretstown: Serious Fun! 14 Have FUN with Fundraising: Upcoming events to get involved in 16

Community Shout Outs!

18 Member Services Update: Exercise Grant 2025 19 Campaign Update: Access to Medications 20 Fundraising Update: The Lord Mayor's Ball 2025 21

CFRI Services Update:

Celebrating Excellence in Irish Research 22 Conference Report: Irish National Cystic Fibrosis Clinical Conference 2025 26 Members Only: We want to hear from you 27

Members Event Calendar

Hello and welcome to the latest and newly designed Spectrum!

Welcome to the first edition of Spectrum for 2025 complete with a brand new look.

With an enhanced focus on members stories in this edition, you'll also find all the news and updates from the CF Community as well as exciting opportunities to get involved.

Since our last edition, we are delighted to bring you the latest developments in the Access to Medication campaign as the CHMP voted positively for the extension of Kaftrio to those with rare mutations - the first step in the process.

Now, we await confirmation of marketing authorisation.

We also said a fond farewell to Professor Charles Gallagher as he retires, acknowledging his incredible contribution to CF care in Ireland and were delighted to attend the Irish Premiere of 'Salt' a film by our member Alice Ward.

Thanks to everyone who completed our Cost of Living with CF survey. We received many responses and are now in the process of analysing the information. We will bring you more updates in the coming weeks. You can read an update from the National CF Clinical Conference, held for the first time in 5 years and attended by 150 members of our multidisciplinary teams in January.

And finally, our fantastic volunteers will be out in force again in just a few days’ time for 65 Roses Day – our main fundraising day of the year. So when you see the sea of purple on the 11th April, drop by, say hello, buy a rose or donate online!

We very much appreciate all your support and hope that you enjoy this new look edition of Spectrum.

FRONT COVER: The Glen Girls - 65 Roses Day 2024. EDITOR: Nicola Delaney Foxe DISCLAIMER: The views of contributors when expressed in this publication, do not necessarily reflect the position or policy of Cystic Fibrosis Ireland www.cfireland.ie

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ave you ever considered sea swimming? Wondered what it is like? How would it affect CF? Alice Ward, pwCF, sea swimmer, surfer and Film Director shares her experience with us.

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y earliest memories of the sea are of carefully exploring the rock pools at High Rock in Malahide. With my little bucket in hand, I would search for crabs, pieces of seaweed that caught my eye, and spend time closely examining the various sea anemones.

These deep dives into nature were usually shared with my Grandad while my father, John, was in the water training for his sea swims. Sea swimming in Ireland has been a part of my life for as long as I can remember. My dad, a long-distance sea swimmer, has swum the English Channel and won the Liffey Swim in 1999 when I was 4.

When I’m in one of those moods, the last thing I feel like doing is getting into the sea, so it definitely takes more motivation than on other days.

However, I usually manage to trick myself into getting in because I know how much better I’ll feel afterward. To make it a little easier, I have a few tricks up my sleeve - like having a hot water bottle ready or a warm drink waiting for me afterward, which I enjoy in the car with the air conditioning blasting.

These days, I dip much more intuitively than when I was younger. Back then, I felt like I had to stay in for a certain amount of time, gradually increasing how long I stayed. Now, I listen to my body more. I stay in for as long as I’m enjoying it—some days just 20 seconds is enough, while other times, I’m happy to float for a few minutes. I never let myself get too cold, though, because I know it will take much longer to warm up and recover afterward.

Even though as a child I was at times quite sick with Cystic Fibrosis, it never stopped me from enjoying the sea. I did my first 500m sea swim with my dad when I was 8 or 9, hopped in without a wetsuit or a second thought and had a great time. Over the last few years the popularity in cold water swimming in Ireland has sky rocketed which has been great to see. People of all ages and I believe swimming offers fantastic benefits for people with CF. Even if walks of life can be seen dipping at local swims spots. you're not very experienced in the ocean, there are now so many swim groups across the country that you can join, allowing you to swim safely There are a multitude of benefits from cold water swimming. The and with others. Whether it's a quick dip with some good conversation health benefits I experience from sea swimming and spending and a focus on the social side, or open-water swimming, which provides time in the ocean is the opening of my airways and the loosening a bit more of a physical challenge, I truly think there's something for of mucus. A swim for me can be the equivalent of doing 20 minutes everyone in the ocean. The variety of experiences available means of airway clearance but not nearly as boring and provides much you can tailor better scenery. It also improves my quality of sleep, after being it to your own immersed in cold water and having a blast of fresh air and nature comfort and I’m able to fall asleep much quicker and have a deeper nights rest. fitness levels, all While the physical health benefits are fantastic, I believe the main while enjoying reason I continue sea dipping year-round is for the mental health the health boost. It acts as a total reset for me. I could be in the grumpiest benefits of being in the sea. mood or feeling completely drained, but just a quick 30-second to one-minute dip can instantly lift me out of that. The shock of the cold, followed by the sensation of floating and being fully immersed, helps bring me back into my body, no matter what's going on in my mind. It’s like a reset button for both my mental and emotional state.

Alice Ward, Sligo

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Spectrum / Spring 2025

Sea Swimming for CF "A swim for me can be the equivalent of doing 20 minutes of airway clearance but not nearly as boring and provides much better scenery" Alice Ward, Sligo

CFI Fact!

Did you know, 50 swimmers of all ages swam from Ronagh Quay to Clare Island raising €25,000 for CFI last August, - helping us to provide almost 300 Exercise Grants in 2024!! www.cfireland.ie

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I'm a lo moving country with a long term illness tends to bring with it a distinct ominous feeling typically reserved for those about to scale Mount Everest or fight a bull.

In January of 2024 I decided to take on this logistical Everest, moving from Tipperary to the capital of Europe in Brussels. I had wrapped up my masters in September of 2023 and like many a young Irish person I chose to jump ship over to the continent for a (yet to be determined) period of time.

These last 12 months in Brussels have been both incredibly enjoyable and at times equally as anxiety filled. Alongside a new job, new people and a new language I have also been met with the ecstatic highs and lows of a new healthcare system.

"To live with a long term illness is to live with challenge, so don’t ever be afraid to try something new, when you have already proven just how capable you are" Alannah Shesgreen, Brussels

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tickets, somewhere to live, a job, oving country usually Flight what to pack, what documents you need prompts an internal and so on. The logistical mountain of moving list that stretches country, although an exciting challenge, can on occasion appear insurmountable. It the length of a field. comes as no surprise to anyone then, that

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Having been diagnosed with Cystic Fibrosis at the age of 2, I have quite comfortably found a medical home for myself under the care of firstly Crumlin Children’s Hospital and then St. Vincents University Hospital.

It’s a strange concept to many, to find comfort in a hospital and a medical team.

But I am sure that many of you reading this, whether a pwCF, a parent to a child with CF or a partner, sibling or friend to someone with CF, will know that when a hospital becomes a prominent part of your life, no matter what the context, you can find a distinct comfort in its familiarity.

Removing myself from this familiarity and the safety net of my own 23 plus years of

Spectrum / Spring 2025

ong way from Tipperary...

by Alannah Shesgreen

knowledge was terrifying. I had very little idea what awaited me on the other side. Admittedly I was comforted by the fact that Belgium is in the EU and only a short hour long flight from Dublin. This gave me the chance to travel back and forth while I tried to figure it all out.

Fast forward to December 2024 and the big day arrived; meeting my new CF team in Brussels. Sitting in the waiting room (which to my surprise was in the paediatric unit as that is where all the nonpseudomonas adults are reviewed) I was so unbelievably nervous. I have been through first dates, first days of college and first days of work but nothing will compare to the nerves I felt sat in that waiting room, with its ball pit and animals painted on the walls. An apt setting as it put me right back into how I felt as a kid in Crumlin. In the end, the experience was so underwhelmingly normal. It felt routine and familiar, albeit nowhere near the jovial banter I have become accustomed to. However, from a medical standpoint, as if I were some respiratory sleeper agent, I knew how to handle everything and all of a sudden this new country and its new healthcare system didn’t feel so scary and I finally felt like I was beginning to settle in.

It is important for me to note here that I didn’t do any of this by myself. Sure, I made the decision to go and found the job and the place to live, but my team in Vincents, the advice of CF Ireland and the advice of Muco Association Belgium (muco being the Dutch word for CF) have been invaluable in helping me along the way. I am also blessed with an incredible support network through my family, friends and partner who have all listened to my frustrated rants while I tried to figure this all out. The point I want to make though is that I did figure it all out.

Making any big life changes with CF is daunting, but it’s important not to shy away from the things you want in life simply because they feel hard. I don’t know how long I plan on staying in Belgium, but I know for a fact that all the stress over the last 12 months was worth it to allow myself the chance to embrace all these new experiences. Having a long term illness can be a barrier and I won’t negate that this can be the case for some, but where you can push through a barrier you should. Everyone’s journey with CF is different in the same way everyone’s journey through life is different. But to live with a long term illness is to live with challenge, so don’t ever This was a topic I had discussed with a few of my colleagues, most of be afraid to try something new when you have already proven just whom are also from outside Belgium; when do you finally feel like you how capable you are of dealing with the unknown. settled? For most it was when they managed to get a haircut they liked, or had a weekend routine, had a library card or a regular coffee shop. But I knew for me, that feeling settled would always be tied to my CF and I can confirm that I now officially feel settled after meeting a new CF team and collecting Kaftrio from the hospital pharmacy for the very first time. In previous years this is something I would have felt quite bitter about; the fact that in order for me to feel at home somewhere I have to trek to a hospital. But the landscape of cystic fibrosis has changed so much in the last 5 years that not only can I Are you thinking of working or studying think about moving country, I can actually do it! And yes, living with CF abroad? For advice and information, get in adds an inconvenient amount of steps to my adjusting period, but it touch with Member Services on has turned me into one hell of a problem solver. memberservices@cfireland.ie or visit www.cfireland.ie.

www.cfireland.ie

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Was there 'a time before M

embers of the CF Community, Sasha Delaney, Tricia Duffy Barber and Professor Ed McKone, look back over the care and career of Professor Charles Gallagher on his retirement in 2025.

I recently had the pleasure of attending a lecture being given by Prof. Gallagher (or Charlie as he is affectionately known as) to fifth year medical students while I was an inpatient. The instructor chatted away when Charlie informed her that I had been his patient for 23 years. It took me a moment to do the maths and realised he was exactly correct, it has been 23 years since I first set foot in his clinic and in that time he has become something of an institution in St. Vincents. It would be fair to say that among the patient cohort there are varying degrees of opinions on his policies for inpatients or the big changes he has implemented since the opening of St Christophers unit but the one thing that stands out to me is his absolute dedication to and relentless pursuit of innovation and standards of care for pwCF. His many professional accolades are well-known and he is highly regarded worldwide within his field, however it’s the in-person physician and man that I know more about.

All those years ago, inpatient life was very different and I am sure we drove him to distraction, staying up too late, not waking for meds or breakfast and generally causing havoc. I suppose that’s what happens when you have a gang of people in their twenties effectively living together in a dorm for 3, 4, 5 weeks at a time. He would visit on rounds and just give you a look that said I know what you’re at, give over! I particularly remember a time when I did Pulmonary Function Tests and my lung function had jumped up a bit, I put my hands up and informed Charlie that

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I may have taken enough Ventolin for four people before I did them, his response was simple “Don’t you realise I know all of the tricks you guys have up your sleeve“ and he burst out laughing .

It would be similar when you weren’t feeling too great and would go on the wellrehearsed spiel of why you should just go home with oral antibiotics instead of an admission. “Ah sure I’m grand, nothing too wrong, not even coughing that much” and his infamous words in my house would go something like , “you’re just sitting, don’t tell me how you feel lying down or doing nothing, how do you feel when you move around” to this day it is the barometer that my own mammy uses to see how I really am.

Prof Gallagher has always had such respect and admiration for pwCF and it was clear as day during that lecture with him. He spoke of gruelling routines even when we are well, of doing day-to-day activities when others wouldn’t dare to leave their bed, he spoke of pwCF being some of the bravest people he knows, he really wants to get the next generation of physicians involved with CF so the innovation and standards of care can continue to improve and change the course of CF for good.

Sasha

Spectrum / Spring 2025

Charlie'?

Going forward, it’s very difficult to imagine St Vincent’s without Prof Gallagher. He’s pretty much synonymous with CF care at the hospital. Was there ‘a time before Charlie ?! ’ When I cast my mind back to my arrival at Vincents in the early 90’s, I was a young teen leaving Prof Tempany at Our Lady’s in Crumlin, transferring into the care of Prof Muiris FitzGerald and St Paul’s Ward - it was quite the transition.

Before long, in 1997, there was talk of ‘this great new guy, back from Canada’! As I tended to have at least one admission a year in my teens, it wasn’t long until I found myself an inpatient again on St Paul’s Ward, stressing about my lung function numbers and anxiously waiting for Dr Gallagher (as he was then) doing rounds to see whether I could go home or would he say I have to do another week of i.v.

I also remember as a young adult being invited to participate in numerous questionnaires, studies and research being run by Dr Gallagher himself or under his mentorship. Anyone else remember something to do with leg strength and lung function?!

To my memory, in the 90’s and early 2000’s, CF research was about trying to understand more about the basic science and different ways that it affected us. There was also the trialling of a new drug pulmozyme and other new ways to manage the avalanche of symptoms we had to deal with. There was a determined culture in St Vincents of: ‘if we have the highest incidence of CF in Ireland, then let’s be the experts in it’. In 2000, I went to a European CF conference in Sweden, it was exciting to see the same research published by the CF team under Prof

www.cfireland.ie

Gallagher at St Vincents being presented there and discussed by international CF teams. Twenty five years later those studies have been cited by academics and other researchers thousands of times ……. the ethos of research and rigour remains a priority, particularly in the new era of CF life changing medications. It's fair to say Prof’s legacy in research has significantly contributed to the understanding and treatment of CF internationally.

When speaking at CF Ireland Conferences, Prof Gallagher has often referred to the importance of the publication of the Pollock Report. It was a landmark report commissioned by CF Ireland in 2005. It highlighted the struggle to provide the best care with abysmally low resources (lack of dedicated bed numbers & inadequate staffing levels). Pollock launched a long and weary campaign for a dedicated unit at St Vincents. It was a campaign in which many parents and older people with CF will gratefully remember the heroic voices of people with CF, (many as inpatients) explaining their fears on the airways of Joe Duffy’s Liveline about cross infection and chronic bed shortages. Prof Gallagher found himself in the role of both clinical expert and steadfast ally to CF Ireland during this time. Tears were shed by many in the CF community in 2012 when the Nutley Wing opened with its St Christopher’s Inpatient and Day Wards; bittersweet in remembering those who would never get to see it and relief for those who would.

in St Vincents: with specialist nurses, dietitians, physiotherapists, psychologists and social workers. We’ve been fortunate that the calibre of care under his tenure has attracted many new staff to come and craft their specialism in CF; and as patients we’ve benefitted from their enthusiasm and dedication.

Not content with focussing on his own service, he would find himself advocating for better resources, funding, and policy changes to improve the lives of CF patients all over Ireland. His stewardship of the National Clinical Programme for CF (convened in 2015) delivered the roadmap for best practice in Ireland in 2019; a gold standard against which CF Care around the country should be modelled. A first ever Model for Lung Transplant Care for CF Adults in Ireland also followed under his chairmanship. Reading between the lines, I can imagine this focus and pursuit of excellence in CF care in a busy health service didn’t make him any fans with the powers that be. His dedication to improving the health and quality of life for people with CF has made him a trusted household name among CF families for many years.

Throughout his career, Prof Charlie Gallagher has earned numerous accolades for his contributions to the field of CF. I know I echo the thoughts of many people with CF, their families and those no longer with us, who are very grateful for his careerlong dedication to CF patient care. We are certainly in a better time because of the We take it for granted now that crucial legacy he leaves. We wish him a long, fulfilling to a successfully functioning CF Unit is a and happy retirement. full multidisciplinary team. Prof Gallagher has played a vital role in shaping a holistic and comprehensive approach to CF care

Trisha

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"An immense contribuition - nationally and internationally" Professor Ed McKone looks back over the career and impact of Professor Gallagher

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rofessor Charles Gallagher graduated from UCD School of Medicine and completed his initial training in Dublin and Manitoba, Canada before taking up a position as Respiratory Consultant in University of Saskatchewan in Canada.

In 1997, he returned to St. Vincent’s University Hospital to take up the position of Consultant in Respiratory and General Internal Medicine and as Director of St. Vincents University Hospital Adult Cystic Fibrosis unit. Since his return, the CF unit has grown dramatically and is now the designated Irish National Referral Centre for Adult Cystic Fibrosis. With over 480 people with Cystic Fibrosis (pwCF), the St. Vincent’s University Hospital CF centre is now one of the largest CF centres in the world and is staffed by an excellent multidisciplinary team focused on the delivery of the best care for pwCF.

Pictured: Prof Ed McKone (right) presenting Prof Charles Gallagher (left) with a lifetime achievement award at the Irish National Cystic Fibrosis Clinical Conference 2025 January 2025.

In 2012, Professor Gallagher oversaw the development and opening of the new St. Vincent’s University Hospital CF unit which is based in the Nutley wing of the hospital. This state-of-the-art CF unit with 34 dedicated single rooms with en-suite bathrooms for pwCF in one of the most modern and well-equipped CF units in the world.

Professor Gallagher, in addition to delivering excellent clinical care to CF patients, was also very involved in teaching and research in St. Vincent’s University Hospital and is a Clinical Professor in UCD. He has over 100 publications in peer reviewed journals in the area of CF clinical research and exercise physiology and has trained and mentored junior doctors who are now consultant physicians throughout Ireland and internationally.

He has also been appointed to important leadership positions nationally. He was President of the Irish Thoracic Society, Chair of the Irish CF Registry and Chair of the Medical and Scientific Committee of Cystic Fibrosis Ireland.

More recently, he was appointed as the first Chair of the HSE National Clinical Programme in Cystic Fibrosis, which published the first model of care for Cystic Fibrosis in Ireland as well as the first model of care for Irish CF lung transplantation.

Pictured: Prof Gallagher. TD Simon Harris, Philip Watt, Brian and Patricia Tinsley and campaigners at the launch of the CF Model of Care - October 2019.

Professor Gallagher's contribution to St. Vincent's University Hospital, Respiratory Medicine and Cystic Fibrosis nationally and internationally has been immense and he will be sorely missed by all his colleagues, the CF team and all the pwCF and their families that he cared for over the years.

Pictured: Dr Gallagher, Carl Rainey , Dr Pollock & Mr Godfrey Fletcher launching The Pollock Report February 2005.

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Spectrum / Spring 2025

'SALT'

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The Irish Premiere in-person and online

arlier this year, the Irish premiere of short film ‘SALT’ by Director Alice Ward took place at The Model, Sligo. The muchanticipated film first premiered at the London Surf Film Festival in November 2024, winning 'Best International Short' followed quickly by winning 'Best Film' at the Irish Surf Film Festival the same month. The event completely sold out and although it was buzzing with supporters, friends and family, many guests were unknown to Alice herself – a testament to the engaging story Alice had to tell.

Sarah Tecklenborg CEO CFI was honoured to open the event and spoke about the changing nature and challenges of Cystic Fibrosis.

Being in a position not only to support Alice and her film but also to be in a time when people with CF are forging ahead with positive outlooks and futures, is something that Sarah and the team at CFI are incredibly proud to be a part of.

After the screening, Alice Maher, contemporary artist, led a Q&A with Alice discussing her rationale for the film, her family and her career. CFI were also delighted to host an online screening of ‘Salt’ followed by a Q&A with Alice with those from the CF community who attended. Both events attracted future film makers, people from within the CF community and beyond. Both Q&A sessions were insightful and the conversations reflected the importance of the film both to the CF Community for its positivity and to the general public as it raises awareness of a condition that is still so little understood.

A huge thanks to Alice for the opportunity to support her and the film and for inviting us to the Premiere. We are looking forward to seeing what is next for Alice and ‘Salt’ as it goes on tour in the international film festival circuit.

FILM REVIEW

by Dani Scalise Communications Intern 2025

Alice Ward’s SALT is a powerful short film that intricately weaves the story of her life with the profound significance of salt—both as a vital element in the human body and as a metaphor for her personal journey as someone with Cystic Fibrosis (CF).

Throughout the film I had felt that the audio snippets of her parents did a brilliant job at capturing the extremely vulnerable moments and feelings that both parents and children may feel when they are first diagnosed with CF. The transparency from Alice’s parents of their concerns of her diagnosis offers a sense of comfort, showing that it is in fact ok to not be ok.

Through interlacing audio interviews over video footage of Alice surfing, the film becomes a narrative not of her struggles as a pwCF, but a story of perseverance and determination. With Alice serving as the filmmaker and subject focus, she is in complete creative control of her story and the message she wishes to share with the CF community.

Cinematically, this film is visually captivating as it displays imagery of the ocean that enhances Alice’s journey. A great sense of resilience is portrayed by the continuous shots of her gliding and swimming in the ocean—an act that was supposed to be almost forbidden yet ended up being what has helped her live with CF the most.

Through Alice’s curation of a narrative focused on the fears of the unknown and the power of endurance, she offers pwCF and their families hope for a future full of possibilities.

Alice Ward, Director, with Alice Maher, Artist and Q&A Facilitator at the Irish Premiere of 'SALT' - Sligo, 20th February 2025

www.cfireland.ie

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Barrets

John Mitch

*In signposting to services offered by external org capacity. All external organisations are governed processes independent to CFI and

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Spectrum / Spring 2025

stown: Serious Fun!

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Emma Wallace, CFI's Member Services & Advocacy Senior Coordinator recently took a spin to Barretstown, the charity offering breakaways for families, children and siblings living with a serious illness to see what is on offer for our members.

hel, Barretstown's Head of Partnerships with Emma Wallace from CFI

Barretstown Recently, I had the pleasure of visiting the Barretstown campus and from the minute the gates of the grounds opened, I found myself transported to another world. Looking around, the landscape unfolded into a breathtaking panorama of lush green fields stretching as far as the eye could see.

Rolling hills rose gently in the distance and it felt like a place where the earth feels alive, and the mind is free to wander. I had the pleasure of meeting some of the friendliest staff who brought me through a typical day at Barretstown and it was then I realised I had entered a world of fun and adventure.

For those not aware of the organisation, Barretstown offers free therapeutic programmes in County Kildare for children and their families living with serious illnesses. A key aim of Barretstown is to empower and encourage each child to step out of their comfort zone and build upon their confidence through their medically endorsed therapeutic programmes.

They offer many free camps throughout the year, including: A weekend family camp This camp is suitable for all ages. These camps are an opportunity for families to engage in a fun programme supported by a 24/7 onsite medical team should their child require medical attention during their stay.

Children and Teen Camps A seven and eight-day children, teen and sibling camp which offers specially designed, ageappropriate programmes to allow children aged 7 to 17 affected by serious illness to have some Serious Fun. These medically endorsed programmes are designed to rebuild confidence, selfesteem and independence in a child affected by serious illness in a safe and supportive environment.

Children and teens have the chance to interact and engage with each other, experience ‘Challenges

by Choice’ and take on some new activity-based challenges.

I was amazed to learn that not only was Barretstown set up by none other than Paul Newman, but in 2021, the camp supported 8,101 campers including some of our members - quite a number of children!

ganisations CFI does this in an information sharing d by their own policies, procedures and compliance

If you would like more information on the camps have a look at their website at www.barretstown.org.

are utilised at your own discretion.

www.cfireland.ie

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COMING UP: FUNDRAISING April 11th - 65 Roses Day

April

What:

Our national fundraising day for CFI How: Volunteer, buy a purple rose or donate online at www.65roses.ie Where: Dunnes Stores, Shopping Centres & other outlets nationwide

June 1st – One in 1000 What:

VHI Women's Mini Marathon How: Secure your pack at www.cfireland.ie Where: Meet at our base at D2 Harcourt Hotel!

Scenic Howth Head How: Regist www.cfi Where: 9.30am Howth!

Sept 16th to 23rd – CFI International Walk Slovenia

Oct 26th Dublin Ma

What:

Annual CFI International Walk How: Register at www.cfireland.ie Where: Slovenia

CHY3 Form

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Sept 7th – Head What:

What:

Hu Du How: Re ww Where: Du Ba

If you have donated €250 or more during any year over the past 5 year 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

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

G EVENTS

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

27th – Duleek 10k What:

Join us for the 10K Commemorative Walk How: Register at www.cfireland.ie Where: Duleek, Co Meath

d2Head Walk

c walk from Head to Bray

ter at fireland.ie m start in !

Irish Life arathon

ugely popular ublin Marathon egister at ww.cfireland.ie ublin, October ank Holiday

April 27th – TCS London Marathon What:

Packages inc flights/accomm to the iconic London Marathon How: Register at www.cfireland.ie Where: London!

Sept 11th - 14th 10th Malin2Mizen Cycle4CF What:

4 day cycle from Malin to Mizen How: Register at www.cfireland.ie Where: Meet on Sept 10th at the Redcastle Hotel, Inishowen Peninsula

Nov 2nd - TCS New York City Marathon What:

The much sought after New York City Marathon How: Register at www.cfireland.ie Where: New York, New York!

the really adventurous looking for the International For challenge of a lifetime in 2025, International Treks are available across the year to climb Treks Kilimanjaro, Machu Picchu and Everest Base Camp.

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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COMMUNITY SHOUT OUTS! 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 and please keep up the great work.

to everyone who took part in the 65 Roses Challenge to walk, run or jog 65 km in February!

and to everyone who joined in Christmas Jumper Day '24!

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Spectrum / Spring 2025

www.cfireland.ie

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Member Services Update:

Exercise Grant 2025

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e are delighted to let you know that the Exercise Grant opened on 11 February 2025. This year, the grant has undergone some changes, which came directly from the recent exercise survey completed by our members. This grant is and remains one of the most popular requested grants amongst people with CF. Last year, the Member Services Team supported just under 300 applications for this grant!

While exercise is and remains a free resource, the objective of the grant is to offset the cost of exercise for pwCF, making it more accessible to those who would otherwise face barriers to accessing exercise without the grant.

Some of the most notable changes in this year’s grant includes a reduction in the grant value to 200 euros. In reducing the overall value, it will ensure that we can support more applications to the grant scheme. The grant value for both adults and children is the same. The grant is also available to apply all year round as opposed to two intakes and, as per our member's survey, priority for grant allocation will be based on health and individual needs.

CFI Fact!

Did you know last year we funded just under €90,000 in exercise grants supporting 294 members.

It is worth noting that grant applications do need to be submitted with a receipt and cover access to gym membership, exercise classes and equipment.

To find out more about the grant and for a more comprehensive overview of its new format please visit our website: https://www.cfireland.ie/support-resources/support/grants-and-support-services/exercise-grant .

CFI MEMBER SERVICES TEAM

Contact us by telephone on 01 496 2433 or by email at memberservices@cfireland.ie

Emma Wallace emma.wallace@cfireland.ie

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Rory Tallon rtallon@cfireland.ie

Caroline Heffernan cheffernan@cfireland.ie

Spectrum / Spring 2025

Campaign Update:

O

Access to Medication

n the 28th February, CFI were delighted to share an announcement from European Medicine Agency relating to the expansion of Kaftrio to people with CF with rare mutations.

“EMA’s human medicines committee (CHMP) has recommended extending the therapeutic indication of two medicines, Kaftrio (ivacaftor / tezacaftor / elexacaftor) and Kalydeco (ivacaftor) for the treatment of cystic fibrosis, to include their use in combination for patients aged two years and older who have at least one non-class I mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene..”

Earlier that same week, the CHMP met and voted to adopt a positive opinion on the label expansion. This was the first step toward potential EMA approval for those with rare mutations across Europe. This decision was in no small part as a result of the extensive campaigning from the Access to Medication Working Group, working closely with Cystic Fibrosis Ireland and simultaneous efforts from our friends and counterparts around Europe.

Louise Patterson from Wicklow, Abhilash Kumar from Donegal and other parents from around Ireland, formed the Access to Medication Working Group which has been driving the campaign forward. As part of this important campaign, Louise and her son Aaron who is directly affected, shared their story in the media highlighting the importance of this decision to those in Ireland with rare mutations.

CFI CEO, Sarah Tecklenborg commented, “This is an incredible step forward in the pursuit of access to modulators for those with rare mutations who may benefit from them but who don’t currently have access. While it is an extremely positive development, there is still a significant process to follow.

“CFI, CF Europe, the Access to Medications Working Group, CF Clinical teams and the CF Community have campaigned for broader access to these lifesaving therapies. We will continue to come together to campaign and advocate with our members until everyone who stands to benefit from modulator therapy has access.”

To read the full press release from EMA visit www.ema.europa.eu/en/news.

CFI Fact!

Did you know, that for over 63 years CFI have been dedicated to campaigning for improved services and care for pwCF in Ireland, funded amost entirely by our supporters and the general public?

This support is crucial to help our team coordinate campaigns such as the Access to Medications campaign.

www.cfireland.ie

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Fundraising Update:

The Lord Mayor's Ball

by Olivia Pollack, Communications Intern 2025

C

ystic Fibrosis Ireland are excited to be selected by EHL Experiences as their charity of the year for The Lord Mayor of Dublin’s Charity Ball 2025. The Lord Mayor’s Charity Ball is a much-anticipated annual social event, with delicious food, a live auction, great company and music. This year the elegant ball which takes place in the beautiful and historic Round Room at the Mansion House, will be held on Saturday, 10th of May. Guests will be joined by none other than MC Alan Shortt and dance late into the night with Europe’s, premiere goodtime band…. Springbreak!! Alongside CFI, the Alzheimer Society of Ireland and Dublin Rape Crisis Centre were also selected to be the beneficiaries of funds raised.

Raising much needed funds The purpose of the ball has always been to raise much-needed funds for charitable organisations. This is achieved by being sponsored entirely by EHL Experiences, and the Office of the Lord Mayor of Dublin and donating the proceeds from ticket sales, a live auction and an on-the-night raffle. The auction is hosted by GalaBid and guests can bid both before and at the event. Last year, tickets to Taylor Swift, a private dining experience at FIRE Restaurant, a two-night, five-star trip to Porto and much more, went up for sale and raised thousands of euros. Not only that, but all guests who attend have a chance of bringing a prize home, as the raffle which takes place on the night, promises a prize for each table – adding to the amount raised.

Proceeds are then split between the three charities.

Almost €1,000,000 raised since 2013 Since 2013, the Lord Mayor of Dublin’s Charity Ball has been held annually to raise money for three charities, with €904,124.71 being distributed to charities to date. This year, the total donations since 2013 are expected to reach an estimated €1,000,000. In the lead up to the event, a photocall was held on Thursday 6th of March 2025, with the charities’ Ambassadors and the Lord Mayor, Emma Blain.

Representing CFI are Aaron and Ella May, accompanied by their mother, Louise. Aaron and Ella May represent our commitment to providing the support, resources, and funding to families affected Pamela Laird for The Alzheimer Society of Ireland, Ella May and Aaron for Cystic Fibrosis Ireland, Lord Mayor Emma Blain, Bláthnaid Raleigh for the Dublin Rape by the condition.

Crisis Centre, and Richie Willson at the launch on Thursday 6th March 2025

Support CFI If you would like to attend the ball, have a fantastic night and support Cystic Fibrosis Ireland, you can buy your ticket on our website at www.cfireland.ie, at www.dublincity.ie/council/your-city-council/lord-mayor-dublin/ lord-mayors-charity-ball-2025 or by scanning the QR code provided. Don’t forget to select CFI when completing your purchase and we’ll see you at the Ball!

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Spectrum / Spring 2025

CFRI Update:

Celebrating Excellence in Irish Research

W

e are delighted to announce the winners of the poster competition at the Irish National Cystic Fibrosis Clinical Conference 2025.

This year’s conference showcased an outstanding range of impactful scientific research, reflecting the dedication and innovation of Ireland’s Cystic Fibrosis research community. There were around 50 posters on display at the conference.

Congratulations to our poster prize winners: 1st Place: Jayleigh Lim, Clodagh Landers & team for the poster titled “Use of Cardiovascular Risk Scores in Adult Populations with Cystic Fibrosis.”

Authors: Jayleigh Lim, Clodagh Landers, Marie Therese Cooney, Clare Corish, Oonagh Griffin, Charles Gallagher, Trevor Nicholson, Edward McKone, Suzanne Carter 2nd Place: Gavin Stone & team for “Direct Measurement of Short-term Adherence to Elexacaftor Tezacaftor Ivacaftor and Changes in Sweat Chloride Levels: Results from the RECOVER Study.”

Authors: Stone, R.G. , Sutton, S., Lester, K., Cox, D., Williamson, M., Elnazir, B., Linnane, B., First Place presentation: Prof Jennifer TaylorCousar, Clodagh Landers and Professor Pierre-Regis McKone, E. F., Davies, J. C., McNally, P., On behalf of the RECOVER study Group.

3rd Place: Maíréad O'Donnell & team for “Change in Adult CF Bone Health Post ETI Modulation: A Single Centre Analysis.”

Authors: O'Donnell MM, Lehane S, Cronin K, Vagg T, O'Riordan E, Twohig S, McCarthy M, Dorgan J, Fleming C, McCarthy Y, Quigney C, Matthews V, Holmes F, Deasy KF, Ibrahim H, Plant BJ. We extend our thanks to all participants for their submissions. The diversity and depth of research presented this year was remarkable, underscoring the exceptional efforts being made to improve outcomes for individuals living with cystic fibrosis. A special thank-you to our judges, Prof Jennifer Taylor-Cousar and Prof Pierre-Regis Burgel, for their meticulous and thoughtful evaluation of the posters. Your expertise and dedication ensured a fair and thorough review process. Congratulations once again to all involved!

Third Place presentation:: Prof Jennifer TaylorCousar, Mairead O’Donnell and Professor PierreRegis Burgel

CFI Fact!

Did you know the CFI has provided over € 600,000 of funding for CF related research since 2020?

Funded by our supporters, these studies are some of the many ways CFI support pwCF and CF Clinical teams in Ireland. www.cfireland.ie

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Conference Report:

Irish National Cystic Fibrosis Clinical Conference 2025 Report by Cystic Fibrosis Ireland

T

he Irish National Cystic Fibrosis Clinical Conference returned to Limerick on the 30th and 31st of January 2025. Held for the first time in five years, the conference highlighted dramatic changes in the CF landscape, with increasing life expectancy thanks to highly effective therapies and a host of new challenges in Cystic Fibrosis (CF) care.

One in every 2,200 children born in Ireland has Cystic Fibrosis. Professor Barry Linnane, Paediatric Respiratory Consultant at University Hospital Limerick provided an overview of 10 years of CF newborn screening in Ireland. The programme, which aims to diagnose children with CF before they present with respiratory symptoms and/or features of fat malabsorption, identified 284 children as having CF between July 2011 and June 2021. The programme measures excellently against international standards with key performance indicators such as the average age for a sweat test to be conducted (23 days old) and time to call from a CF centre (21 days) falling well below the European Cystic Fibrosis Society guidelines of 32 days. The ultimate aim of medical care should be to prevent decline not just to slow it. Early initiation of modulator therapy for Cystic Fibrosis may bring enhanced results and the early detection of CF is critical to this.

Eligibility for CFTR modulator therapies – no one left behind Cystic Fibrosis is caused by variants in the Cystic Fibrosis transmembrane regulator (CFTR) gene. CFTR modulators, which can restore the function of the defective protein in the majority of cases have become the standard of care; the most recent of these, Kaftrio®, has been transformative, both physically and psychologically for those who can access the therapy.

Kaftrio, a combination therapy of elexacaftor, tezacaftor, ivacaftor; (ETI) was developed initially based on laboratory testing of the most common CFTR variant F508del. Two phase 3 trials included people with either one or two copies of F508del and led to the licensing of the drug with a highly impressive efficacy signal (including lung function, pulmonary exacerbation rates and quality of life assessment) combined with good safety. Initial licenses (FDA 2019 and EMA 2020) provided access to those with at least one copy of F508del.

ETI will not work for all people with CF; this is due to the fact that over 2,000 different variants (mutations) have been reported in the CFTR gene. For some of these variants, the mutation gives rise to an absence of the CFTR protein, resulting in no substrate for ETI therapy to work on. The other variants give rise to a protein with abnormal structure or function. Many of these variants are ultra-rare and clinical trials assessing the efficacy of ETI for these rare variants have been impossible to conduct.

Modulator therapies were initially developed and refined through a screening system on Fisher rat thyroid (FRT) cells, which were specifically engineered to express various

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Spectrum / Spring 2025

forms of mutated CFTR. The FDA has twice expanded its license for ETI use based on data generated from in vitro studies with FRT cells. A further 177 variants were included in 2020 and another 94 in 2024. Perhaps unsurprisingly for such a novel approach, questions were initially raised about the suitability of FRT in predicting drug responsiveness, leading until now, to a lack of acceptance of such data by EMA. Professor Pierre-Régis Burgel, Cochin Hospital and Paris-Cité University, Paris, France, outlined his work on a French compassionate use programme which expanded access to trials of Kaftrio for those aged 6 years and older, without a F508del variant causing their CF. Participants were given a 4-6 week trial of ETI and their response was determined by a centralised committee based on the evolution of clinical data on lung function and sweat chloride. Promising data was presented showing that to date, of the 650 patients included in the program, 55% have been responsive to ETI benefiting 350 patients. The French reimbursement system allows ongoing access for these people.

The French Compassionate Use programme took brave steps in expanding access to these therapies to all who may benefit from them, giving hope to those with ultra-rare mutations who had been left behind. Real-world reports are unanimous in confirming clinical trial data: the course of the disease improves dramatically on Kaftrio® with a rapid, major and sustained improvement in clinical manifestations and lung function, strongly predicted to result in longer survival. *Of note, since the conference, on the 28th of February 2025 the EMA’s Human Medicines Committee (CHMP) recommended expanding the indication of two medicines, Kaftrio (ivacaftor / tezacaftor / elexacaftor) and Kalydeco (ivacaftor) for the treatment of Cystic Fibrosis, to include their use in combination for patients aged two years and older who have at least one non-class I mutation in the CFTR gene. The extension of this indication paves the way for all patients likely to respond to these modulator therapies to be treated. Up to 97% of people living with CF may now have access to these highly effective therapies if marketing authorisation and reimbursement are approved.

Update from the National Clinical Programme for Cystic Fibrosis Professor Charles Gallagher, National Clinical Lead for Cystic Fibrosis took us through the historical approach to CF care in Ireland prior to 2015, the setting up of the National Clinical Programme for CF in 2015, the key changes that have been made between 2015 and 2024, concluding with a discussion on the future of CF care.

We were reminded of the most notable and pivotal piece of work regarding CF care which was commissioned in 2003 and carried out by Dr Pollock. This independent review of CF services in Ireland led to a publication in 2005 calling for Urgent action to correct the dangerously inadequate staffing position in Cystic Fibrosis setting the foundation for standards of care required with CF. Professor Gallagher spoke of the core objective and philosophy of the National Clinical Programme which was established in 2015 and the format of directing Government policy on Cystic Fibrosis Care. Addressing what has changed, the key elements presented were the Model of Care for CF and its journey to publication to include a similar Model relating to CF and Transplant Care.

The concluding elements to the presentation brought us to CF today and into the future with a focus on CF and Aging, CF Diabetes and the Drugs for non-F508del mutations. To add to this conclusion, Professor Gallagher addressed the need to support Team Wellbeing highlighting it as a core component to CF care for the future.

Professor Gallagher's contribution to St. Vincent’s University Hospital, Respiratory Medicine and Cystic Fibrosis nationally and internationally has been immense and he will be sorely missed by all his colleagues, the CF team and all the pwCF and their families that he cared for over the years.

Future of CF clinics In this era of modulator therapies, enhanced multidisciplinary care and improving health for

www.cfireland.ie

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those with CF, the question was asked, do we still need CF centres? The answer was a robust yes! While the responsibilities of multidisciplinary care have changed, with a shift in focus to the management and prevention of chronic diseases in people with CF, the volume of work remains.

There is an increased emphasis on physical fitness and general health and the need to prevent typical comorbidities of aging in a person with CF. Specialists working on the complications of CF such as CF liver disease, CF-related diabetes, genetic counsellors for those considering starting a family and renal specialists all have important roles to play in CF care.

Remote monitoring in the clinic has also gained more of a focus. Professor Patrick Flume, discussed the important role that Telemedicine may play in the future of CF care. Highlighting its benefits and barriers, Professor Flume spoke to the overall accessibility of this approach. Recent research examined this new model of care utilising variables which included asynchronous visits vs. all-in-one clinics aimed to provide an evidence-based approach to CF Care. From an outcome perspective, while it is still unknown if it is the best model of care it serves as a template to refine best practice.

Advances in Cystic Fibrosis Related Diabetes As people with CF live longer, non-pulmonary complications are becoming increasingly prevalent and burdensome. CF-related diabetes (CFRD) shares characteristics of both type 1 and type 2 diabetes. Dr. Melissa Putman, Massachusetts General Hospital and Harvard Medical School highlighted the impact of CFRD on clinical outcomes, evidenced in compromises in nutrition, declining BMI, reduced pulmonary function and increased CF exacerbations. Long-term diabetes complications were also seen as well as impacts on mental health and an earlier rate of mortality.

Advances in CFRD screening were outlined coupled with an overview of some of the current restrictions. While oral glucose tolerance is the recommended test for diabetes, the demands of the test are not ideal, and screening rates remain low. Dr Putman added that alternative screening tests have limited sensitivity, and this can be a challenge.

Current guidelines in the treatment of CFRD were reported on with Insulin being the only recommended treatment for CFRD currently. Highlighting the challenges of managing CFRD, Dr Putman spoke of the burden of diabetes tasks on top of other health priorities for those with CF and the overall impact on quality of life. Concluding statements addressed diabetes technology and how it may help to improve glycaemic management and reduce treatment burden.

Sexual and Reproductive Health in the CFTR Modulator Era The conference plenary was provided by Professor Jennifer Taylor-Cousar, Professor of Adult and Paediatric Pulmonary Medicine at National Jewish Health in Colorado, who discussed evolving issues in sexual and reproductive health for those with CF. Approximately 98% of men with CF are born infertile, Prof Taylor-Cousar highlighted a study carried out with 264 men with CF which found that 17% were over the age of 20 when they found out about their infertility reinforcing the importance of conversations from an early age explaining the side effects of CF from this perspective.

Professor Taylor-Cousar stated that pregnancy after transplant is and remains highly discouraged and many couples seek surrogacy as a pathway to parenthood. The use of modulators during pregnancy and breastfeeding was addressed, retrospective studies of women with CF who used modulators during pregnancy and breastfeeding at normal human doses found no alarming safety signals to the foetus.

From the perspective of miscarriage or congenital anomalies, the use of CFTR modulators during partner conception and/or pregnancy in men with CF was addressed, and the findings presented showed that this has not resulted in a higher-than-expected miscarriage rate or congenital anomalies. To conclude, Professor Taylor-Cousar addressed a retrospective study of parenthood in pwCF which showed that short-term

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Spectrum / Spring 2025

health outcomes were adversely impacted, an effect that was mitigated by modulator use.

Significant questions remain around best practices in the care of pregnancy and fertility among people with CF. Early discussions with people with CF around the implications of CF on their reproductive lives are encouraged and essential.

Future of infection management in the era of ETI Professor Pradeep Singh, University of Washington School of Medicine, addressed in detail the effect of ETI on CF Lung infections and inflammation expanding the presentation to address why infections might persist after treatment. From the good news perspective, Professor Singh reported that ETI rapidly reduced CF pathogens in sputum. Gram positive and negative bacteria and fungi were found to respond similarly, consistent with non-specific clearance from the lungs. There was no sign of an infection rebound 3.5 years after ETI, and a study of Pseudomonas aeruginosa (Pa) inflammation markers suggests that ETI diminishes other inflammatory mechanisms.

Addressing the perspective of not-so-good news it was reported that few subjects were found to become repeatedly pathogen negative.

If infection remained in one lung region, all sampled regions would test positive, and the lung may continue to deteriorate globally. In persistently infected subjects, sputum pathogen density was found to decrease modestly and then stabilise. In addition, some people in their study became “newly” infected with Pseudomonas, Staphylococcus aureus and Stenotrophomonas maltophillia after starting ETI, but the fate and consequences of these infections were unknown. Persistently Pa-infected subjects had Pa and inflammation in all sampled segments including those with the mildest disease.

Dr Charles Haworth, Royal Papworth Hospital and University of Cambridge presented a very informative piece which highlighted that the M. avium complex and M. abscessus were the most prevalent non-tuberculosis mycobacterial (NTM) infections. While ETI had resulted in clearance of NTM in some patients it was noted that the clinical relevance of chronic NTM infection in patients on ETI’s was often unclear.

As reported in 2023, of 33,288 pwCF, 10,035 had a mycobacterial culture with 5% accounting for the M. avium complex and 3% M.abscessus. In patients that met the diagnostic criteria for NTM pulmonary disease the initiation of treatment was suggested rather than watchful waiting. Dr Haworth described a modified therapy protocol which can lead to clearance. Two out of three patients with chronic long-term NTM were cleared of the infection with the new protocol. The prolonged use of iv beta-lactams in combination with po clofazimine + bedaquiline appears better tolerated and pre-effective than conventional regimens for MDR mycobacterial infections.

Typical CF infections remain a significant concern in the ETI era and may become more challenging to treat due to difficulties associated with their detection as people treated with ETI produce less sputum for sampling.

As we gathered at the event, we were reminded of the profound impact that collaboration and shared knowledge can have on the lives of those affected by Cystic Fibrosis. Over the course of the conference, attendees had the opportunity to engage with leading experts in the field and hear inspiring keynote presentations that highlighted innovative approaches to managing Cystic Fibrosis now and into the future. The conference addressed the multifaceted challenges faced by pwCF and healthcare providers alike, ensuring a collaborative perspective on the journey of living with CF.

Thank you Our sincere thank you to this year's organising committee: Prof Barry Plant, Prof Ed McKone, Prof Barry Linnane, Mr Godfrey Fletcher, Dr Robyn Doherty and our own Caroline Heffernan and Sarah Tecklenborg, with support from the team in CFRI and CFI.

www.cfireland.ie

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We want to hear from you!

Welcome to the all new Spectrum!

New era of CF, new era of Spectrum! We have redesigned Spectrum and hope the magazine reflects the modern world of CF that many are experiencing.

As a members magazine, we want to create a space for as many voices from the community as possible.

'Members Only', is a dedicated space where you will find our resident Doodler Brendan's creations and we would love to also feature your thoughts, opinions and musings. Please send them to Nicola at spectrum@cfireland.ie and we'll consider them for publishing.

Reflecting this era of transition, we are delighted to share a wonderful poem written by Ronan Collins looking back on just how far life with CF has come. Thank you Brendan and Ronan for contributing !

A warriors guide of DeltaF508

by Ronan Collins

Cystic Fibrosis as it’s commonly known, A life threatening disorder as it has shown, Not so common it is to know, The different mutations that we show.

No potion nor remedy or cure, Our salty warriors still endure, Respiratory failure you can not ignore, Growing fear the end is near.

DELTAF508 A defective gene so great 53,000 years to date, At this early stage the world at rage, Centuries of suffering before anyone knew, It's the children who couldn't see it through.

The evil eye is present here, Now it's a time of Christ, Mothers turn to prayer they site, The might of this curse winning the fight, Conceiving a child now a fright.

In Europe its medieval times, Witchcraft thought to be the crime, A symptom announced by ancient rhyme, "Woe the child who taste salty from a kiss on the brow, fore he is cursed and soon will die" Later written into medical text, This became known as the first salt test.

Two more centuries come and go, Only more symptoms we have to show, Medical science has come on strive, remedies made only easing the pain.

Malnourished to the bone, The cause once unknown, The foul bowl motions gives the notion, To add to this the damaged pancreas.

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There's little hope gained, The tears the same, Life taking to early, The devil to blame.

All doctors can do is look after you, Studying for a clue comes a breakthrough,

Find Brendan on Instagram: @bob_narrow

This opens the gate to 1938, Dr Dorothy Hansine Anderson concludes it to be a genetic disorder.

All the symptoms you see, A mystic disease so hard to be found, Cystic fibrosis the name she crowned, With her research adored, She received the Mead Johnson award.

Another to note awarded in 1952, Recognised women who devote their life Energetically to the greater cause of humanity, Now honoured with glee shes inducted into the national women's Hall of fame, Dr Anderson changed the game.

Now the year 2023, Treatments we see as close to a cure As Treatments can be, Could this generation so brave, Be the generation that's saved, With a treatment so pure, A Cystic Fibrosis cure.

Spectrum / Spring 2025

www.cfireland.ie

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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 28 Cystic Fibrosis Ireland, 24 Lower Rathmines Road, D06 A9P3

info@cfireland.ie

Spectrum www.cfireland.ie / Spring 2025 01 496 2433