Spectrum - Winter Edition - 60th Anniversary Edition

SPECTRUM Winter 2023

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CONTENTS Latest News | 2-4

* Beaumont Hospital Given Green Light * Bridie Maguire - An Appreciation

* Billy Henderson - An Appreciation

Member Services | 5-11

*1963-2023: A Most Exceptional, Revolutionary Time - Rory Tallon *Vertex updates dossier *Annual Conference 2024 *Exercise Grant 2024

Brendan's Doodles | 7 Spotlight | 12 - 16

*Drawda at 50 - Cyril Gillen *Learning to Live for Today - Jill Dorgan

CFI Ambassadors | 17 Hospital Hub | 18-19 Research Update | 20 -26

*CFI and CF Care 2000 - 2023 *37 Years on - Professor Muiris FitzGerald *PPI Opportunities: Pathways *PPI Opportunities: TeleHealth

CFRI | 27- 29

*20 Years of Research

Charity of the Year| 30-31 Fundraising| 32-40 * Challenges and Events EDITOR: Nicola Delaney Foxe FRONT COVER: 60 Years in A Rose

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DISCLAIMER: The views of contributors, when expressed in this publication, do not necessarily reflect the position or policy of Cystic Fibrosis Ireland.

Spectrum / Winter 2023

Happy Christmas and seasons greetings This special issue of Spectrum celebrates the 60th year of Cystic Fibrosis Ireland. We have some lovely reflections including thoughts from Dr Muiris FitzGerald, Cyril Gillen and Jill Dorgan from our branches, and a snapshot of advancements through the years, all which we hope you will enjoy.

Philip WatCFIC Philip Watt, CEO, CFI

2023 saw further significant progress in our aspiration to see world class CF facilities in Ireland. Access to CFTR Modulators to all who can potentially benefit from them is an increasing reality, but with more work to do as part of our new strategic plan in 2024.

It is great to be able to report progress in 2023 in this edition: • The green light for the commencement of the 20 room adult inpatient unit in Beaumont Hospital has been approved • The commencement of the outpatient unit in Merlin Park in Galway • The extension of Orkambi for 1-2 year olds • The forthcoming extension of Kaftrio for 2-5 year olds in 2024 At this time of year we reflect on family and friends no longer with us. Bridie Maguire was one of the 'guiding lights of CF' in Ireland. She passed away in October of this year. We also take this opportunity to celebrate the contribution of Bridie and many others as part of the wider CF community in Ireland - perhaps best expressed in the wonderful Irish proverb.

Ar scáth a chéile a mhaireann na daoine. ‘it is in each others’ shadow that people live’

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LATEST NEWS Beaumont Hospital given green light to build 20 room in patient CF ward block In a welcome development for the many adult CF patients attending Beaumont Hospital, the HSE has given the green light for the building of the long awaited 20 room inpatient unit in the hospital. This unit/ward block will have state of the art CF inpatient facilities. With CF adult patient numbers attending the hospital continuing to grow, thanks to longer survival rates, the Unit/ward block in Beaumont is an important and very necessary addition to CF hospital facilities in Ireland, even in the new era of CF Modulators, such as Kaftrio and Orkambi.

Up to now, Beaumont Hospital had a significant deficit in the number and standard of specialist inpatient rooms available, compared with the total number of patients with CF attending the hospital. Along with St Vincents' and Cork hospital, Beaumont Hospital is in the top 3 adult CF specialised units in the country (in terms of patient numbers and national importance to CF adult care).

Cystic Fibrosis Ireland in partnership with our colleagues in (former) local charity, CF Hopesource, led the advocacy for this unit. Both charities also undertook major fundraising drives and this funding remains ringfenced for this important unit, which will cost a total of over €20m total to build, mainly funded by the Government. Delays in the build have inevitably added to the final cost of this project, but this should not detract too much from the welcome green light to proceed. The project was significantly delayed in recent years by the COVID-19 Pandemic which suspended major building projects on the Beaumont campus. In a welcome development, the architects consulted closely on the design and design features with adult patients.

CFI coordinated this consultation.

Along with lead clinicians in Beaumont, Professor McElvaney and Professor Gunaratnam CFI and Hopesource, patient representatives - Maeve Mullin, John Ward and Philip Watt - participated in many meetings with the Hospital since this project was first proposed through an advisory group. This was also a positive, if sometimes frustrating, feature of this build project.

An image of what the new CF inpatient unit in Beaumont Hospital will look like on completion

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Spectrum / Winter 2023

CFI thanks all those who have contributed through advocacy and fundraising for this unit in CFI and CF Hopesource. We further thank the clinicians and their teams HSE, the CEO's of Beaumont Hospital and the Irish Government and all political parties that supported this project. With thanks to Minister Donnelly and former Minister Harris, and with special thanks to former Minister of State for Disabilities, Finian McGrath who consistently supported this cause, both in and outside of Government. The builders will be appointed very shortly following an open tendering process. The hoardings and aspergillus precautions have already been commenced and we look forward to completion of the Unit by 2025.

An appreciation of Bridie Maguire, first CEO of Cystic Fibrosis Ireland and former ‘Person of the Year’ We were saddened by the news of the death of the wonderful Bridie Maguire, aged 94. Bridie was the first CEO of Cystic Fibrosis Ireland (formerly CF Association of Ireland) and worked for people with CF for more than 30 years. We give our sincere condolences to Bridie’s husband Tommy and all the Maguire family, including Joseph and Louise. Bridie’s death coincides almost exactly to the day of the 60th anniversary of CFI, which was formed in November 1963.

Bridie was named a ‘Person of the Year’ in 1976. A newspaper article at the time stated;

CFI Founders, Bridie Maguire and Anne O'Dwyer

"It is a very rare woman who could each day remain in close contact with the disease which killed her two little girls…Since her two daughters died of cystic fibrosis, she has become godmother, mentor and saviour to the 400 children and their parents who belong to the Cystic Fibrosis Association of Ireland. Her boundless dedication, understanding and support was recognised when she was made a ‘Person of the Year’ in the Burlington Hotel (1 Dec 1976) an honour she shared with the Peace movement in Northern Ireland."

(Evening Herald, 2 December 1976) Because of the very high infant mortality rates associated with CF, in the 1960’s there were virtually no adults with CF and CF was known only as a childhood disease. There were very few treatments at the time and many of the available treatments, such as early antibiotics, were also very expensive. Now the outlook for most with CF is much better and people with CF born in recent years are now expected to live to their 40’s and 50’s and beyond.

Bridie was involved in the Cystic Fibrosis Association of Ireland from the early 1960’s until she retired in 1995 and she retained a keen interest in CFI and CF related medical care until her death on 23rd of October 2023.

Bridie was married to Tommy Maguire, who like Bridie hailed from Newry and they lived in Artane most of their lives before retiring to Donabate. Their first two children, Anne-Marie and Siobhán, both died from Cystic Fibrosis before two years of age. The couple went on to have three more children who didn't have CF, Joseph, Mark and Louise, and many grandchildren and great-grandchildren.

In an interview given in 2013 for the book ‘For the Roses’, Bridie recalled the absence of basic CF services in the 1960’s and that an important part of her work was to travel to many parts of Ireland visiting and providing

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support to parents who often felt isolated and unsure of what to do for their very sick children. The poor social conditions in Ireland also contributed to the high death rates among some children with CF at the time.

She recalls, "The poverty was appalling. We spent much of our time in those early days in getting medicines and proper houses for many of our families."

Bridie also recalled the impact that working with CFAI had on her own family life, "I was working very long hours. I remember well a Christmas day when a child with CF from Ballymun took ill and myself and Tommy spent Christmas day making sure we got the medicine that the child needed. We had little time to ourselves for our family life."

In 2013, Cystic Fibrosis Ireland honoured Bridie Maguire (first CEO) and Anne O’Dwyer (our first chairperson) in a ceremony to mark the 50th birthday of the Association. They are both still fondly known as the ‘guiding lights’ of Cystic Fibrosis Ireland. It was lovely to see Anne O'Dwyer in Donabate, albeit at such a sad occasion.

Another key figure from the time was Professor Muiris FitzGerald, former CF Consultant in SVUH, who was greeted by many mourners outside St Patrick’s Church in Donabate after the funeral mass.

Philip Watt, CEO of CFI stated "Bridie Maguire was an amazing woman. In spite of losing two of her daughters to CF when they were at a very young age, Bridie dedicated much of her adult life in the cause of people with Cystic Fibrosis, first as a volunteer and then as the first CEO of what is now Cystic Fibrosis Ireland. She was a very kind and vibrant person and young at heart – she kept in touch with developments in CF care through her trusty computer tablet and she never forgot friends and family through e-mail. Tommy and her family can be rightfully very proud of her contribution to the early days CF care in Ireland, as we are in CF Ireland. She is a huge loss to all of us who knew and admired her."

Billy Henderson – An Appreciation Just after the death of Bridie Maguire, we learned of the sad death of Billy Henderson, from Knocknacarra in Galway. Billy was involved in the Galway branch of CFI and did so much to support people with CF in the greater Galway area and beyond. Husband of Liz and much-loved father of Aileen, Sean and Mark. Billy will be fondly remembered by his wife and children, his brother George and sister Kate; also by his brothers-inlaw and sisters-in-law, nieces and nephews, his extended family in Scotland and Ireland; friends, neighbours, past and present employees of Henderson Fire and Safety Ltd., customers and business colleagues.

Billy is remembered as a gentle and a kind person by many. Aileen Henderson, his very talented daughter, is a well-known musician/singer and widely respected by many in the CF community in Ireland as an advocate/ ambassador for the cause of CF. Many of Billy’s colleagues from Henderson Fire and Safety clearly have fond memories of Billy, as can be seen from published condolences. We join with the CFI Galway Branch to thank Billy for all his contribution to improving CF care over many years in the Galway region and beyond.

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Spectrum / Winter 2023

MEMBER SERVICES SERVICES MEMBER 1963--2023: 2023:AAMost MostExceptional, Exceptional,Revolutionary RevolutionaryTime Time 1963 Reflectionson on60 60years yearsofofcystic cysticfibrosis fibrosis Reflections byRory RoryTallon, Tallon,Father, Father,person personwith withCF CFand andCF CFAdvocate Advocate by

ItItwas the year yearJFK JFKvisited visitedIreland, Ireland, year Pope John passed andyear thethe year that wasofthe was 1963, 1963, the thethe year Pope John XXIIIXXIII passed awayaway and the beginning the Itbeginning was 1963,ofthe year JFK visited Ireland, the year Pope John XXIII passed away and the year the beginning of the the end for the death penalty in Ireland.

Ireland was a completely different country compared end for the death penalty. Ireland was a completely different country compared to now. We have gone through end for the death penalty. Ireland was a completely different country compared to now. We have gone through to now. dramatic cultural, economic and political changes. dramatic cultural, economic and political changes.

We have gone through dramatic cultural, economic and political changes.

Among them, the thebiological biological scientific revolution, pole vaulted Among them, andand scientific revolution, whichwhich pole vaulted forward Among them, the biological and scientific revolution, which pole vaulted forward basic biological and pharmaceutical research with the advancement of genetic forward basic biological and pharmaceutical research with the advancement basic biological and pharmaceutical research with the advancement of genetic knowledge, gene identification, gene cloning techniques, gene techniques, editing techniques; of genetic knowledge, gene identification, gene cloning gene knowledge, gene identification, gene cloning techniques, gene editing techniques; an electronic revolution with digital revolution technologies, anddigital a communication revolution editing techniques; anwith electronic technologies, and a an electronic revolution digital technologies,with and a communication revolution with smart technologies, all connecting people and families globally, enabling communication revolution smart people technologies, all connecting people with smart technologies, all with connecting and families globally, enabling businesses, consultations and conferences to operate from the comfort of sitting and families globally, enabling businesses, consultations andcomfort conferences to businesses, consultations and conferences to operate from the of sitting rooms or home offices. operate from the comfort of sitting rooms or home offices. rooms or home offices.

Contrasting how people went about theirtheir daily daily lives and how businesses operated Contrasting howpeople people went about lives how businesses Contrasting how went about their daily lives and howand businesses operated in 1963 toinnow, we now, realise how much Ireland and the world really has changed. operated 1963 we realise much Ireland and the world has in 1963 to now, wetorealise how muchhow Ireland and the world really has really changed.

But not only have we changed, the pace of change is in exponential acceleration changed.

Buthave not we only have wethe changed, paceis of is in acceleration exponential But not only changed, pace of the change in change exponential with almost instant sharing of knowledge and research across all disciplines. acceleration with almost instant sharing of knowledge and research across all with almost instant sharing of knowledge and research across all disciplines. disciplines.

And these revolutions are very much to the fore of all aspects of living with CF. And these revolutions are very much to the fore of all aspects of living with CF. And these revolutions are very much to the fore of all aspects of living with CF. 60 years ago, CF was a childhood illness that was not widely known. Survival was 60 years ago, CF was a childhood illness that was not widely known. Survival was very poor. Anyone born with CF in the early 60’s would rarely survive to teenage very poor.ago, Anyone was born with CF in the earlythat 60’swas would survive to teenage 60 years childhood notrarely widely known.

Survival years.

Thanks CF to BridieaMaguire andillness Anne O’Dwyer, our CF Association came to be years.

Thanks to Bridie Maguire and Anne O’Dwyer, our CF Association came to be was very poor.

Anyone born with CF in the early 60’s would rarely survive to in 1963 helping families and those born with CF through difficult journeys. in 1963 helping families and those born with CF through difficult journeys. teenage years. Thanks to Bridie Maguire and Anne O’Dwyer, our CF Association came to be in 1963 helping families and those born with CF through difficult Slowly and steadily, basic CF medications were prescribed - antibiotics and journeys. and steadily, CF medications were prescribed - antibiotics Slowly andSlowly steadily, basic CFbasic medications were prescribed - antibiotics and pancreatic enzymes - but were costly to families who had to pay privately for them. and pancreatic enzymes - butcostly weretocostly to families had to payfor privately pancreatic enzymes - but were families who hadwho to pay privately them.

Thanks to the hard work of the then CF Association and political representatives Thanks to the hard work of the then CF Association and political representatives for them. of the time, CF was included in the Long-Term Illness scheme in 1971 making of the time, CF was included in the Long-Term Illness scheme in 1971 making medications possible for all diagnosed with CF. medications possible for all diagnosed with CF. Thanks to the hard work of the then CF Association and political representatives

of the time, CF was was included in the due Long-Term Illness scheme inamong 1971 making However, diagnosis a challenge to the lack of awareness doctors However, diagnosis was a challenge due to the lack of awareness among doctors access possible for all diagnosed with CF. However, diagnosis which to ledmedications to people with CF going undiagnosed.

Still today some people born which led to people with CF going undiagnosed. Still today some people born was a challenge due to the lack of awareness among doctors which led to before 2011 are only being diagnosed with CF in their adult years. before 2011 are only being diagnosed with CF in their adult years. people with CF going undiagnosed. Still today some people born before 2011 are only being diagnosed with CF in their adult years.

Thankfully since then, all new-born babies are screened for CF – with approximately Thankfully since then, all new-born babies are screened for CF – with approximately 20-40 new born in Ireland babies diagnosed with the condition each year (CFRI 20-40 new born in Ireland babies diagnosed with the condition each year (CFRI

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Michael and John O'Dwyer, sons of Anne O'Dwyer, circa 1966

CFI Founders, Bridie Maguire and Anne O'Dwyer

Opening of CF Unit at Crumlin Hospital, 1969

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Thankfully since then, all new-born babies are screened for CF - with approximately 20 to 40 new born in Ireland babies diagnosed with the condition each year (CFRI annual report 2021). Adults with CF in their 30’s or 40’s or even older have lived through these revolutions. This same group have also lived through an era of imposition of cross infection prevention and control in CF. While this helped to improve their health outcomes, it also imposed a regrettable isolation which has prevented the natural in-person networking, support and comfort found in peers with CF. This also meant the CF population were forced to adapt ever so quickly to the new technologies to network and communicate with each other. They have lived with CF with basic medications and very basic hospital facilities - with no specialist CF hospital bed units until well into the 1990’s and after the 2000’s.

The most dramatic of all the evolutions for the CF population are however in CF research, CF knowledge and CF medications. The CF gene was identified in 1989. In the early 90’s, gene therapy was the big hope for CF treatment. That never transpired but research on gene therapies continues today.

A group gathering of people with CF, Lourdes circa 1981

Ramped up and rebooted interest in multiple permutations of possible gene therapy approaches from mRNA therapies to gene editing which will come to pass in very near future. Certainly we have come a long way since 1963 but a great deal of that progress in Ireland has happened since just 2013 when CFI celebrated its 50 years and when the first CFTR modulator Kalydeco came on stream for the Irish CF population.

Many of us with CF now have access to CFTR modulators, Kalydeco, Orkambi, Symkevi, Kaftrio. To think that to even understand how these modulators might work and who with CF might be suitable for these modulators, families and people with CF need to bring themselves up to a specialist level of biological and genetic knowledge equivalent almost to a science degree. Consider that 60 years ago specialist respiratory consultants had barely been aware of CF, let alone ever known of CFTR or CFTR modulators, chloride channels, cell chemistry or genetic screening.

Protesting for access to Orkambi

CFI changed over the years too, to adapt to the emerging needs of the CF population. We introduced our Exercise Grant to recognise and promote the importance and benefit of exercise to improving the health of our CF population. We also brought in our Fertility Grant scheme to help address the emergent need of PWCF hampered by their CF and its impact on their fertility necessitating assistive reproduction interventions to start families.

Considering the pace of advancement in medicine and all the sciences and technologies, how much will the CF journey advance in just the next 10 years, let alone the next 50 or 60? The mind boggles.

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Spectrum / Winter 2023

What will change, in effect, is the lives of people born with CF will continue to more and more approximate 'normal' life expectancy and quality of life.

Yet our people with CF will continue to encounter battles with access to services, access to state supports and schemes, access to housing and employment.

Through these emerging challenges, one thing we can count on is that CFI will continue to adapt and evolve with the everchanging needs of our CF population, remaining resolute in our support and advocacy of the CF Community.

Rory with his wife Sarah and daughters Florence and Aine

If you have any questions about CFI grants or services, state benefits or require information about Cystic Fibrosis, please get in touch with our Member Services Team.

Sam Byrne sbyrne@cfireland.ie

Rory Tallon rtallon@cfireland.ie

Caroline Heffernan cheffernan@cfireland.ie

New in

Spectrum

's n a d B ren dles Doo by Brendan Lonergan @BOB_NARROW

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Vertex presents dossier to the EMA to add around 200 rare CFTR mutations to the Kaftrio License Vertex has presented a dossier to the EMA to add around 200 rare CFTR mutations to the Kaftrio License. If approved by the EMA, around 2,800 people with CF across the EU, including Ireland, aged two years and above could benefit. Vertex have recently issued a press release (24 November 2023) (available on their website https://news.vrtx.com/news-releases/news-release-details/vertex-announces-european-medicines-agencyvalidation-marketing) which will be of much interest to those with rarer CFTR mutations in Ireland and across the EU. Vertex have submitted a dossier (application) to the European Medicines Agency (EMA) advocating for the inclusion of 200 rarer (non-F508del CFTR mutations) be added to the license for Kaftrio aged 2 years and above. These are mutations that have proved responsive in clinical trials and/or ‘in vitro’ (test tube, culture dish, or elsewhere outside a living organism - including organoid testing - if backed up with other evidence).

The Vertex dossier to the EMA also includes the types of mutations that are already covered in the FDA license in the US. Philip Watt CEO of Cystic Fibrosis Ireland stated: "This is a really welcome first step for those people with CF that currently do not get access to Kaftrio because of their rare CFTR mutation is currently not approved by the EMA. It will take some months now for the Vertex dossier to be considered by the EMA and all being well, sanctioned by the European Commission and the Irish Government. In welcoming this crucial first step – it’s also important to emphasise that some people will never benefit (or may not tolerate) a CFTR modulator - so there is still need for new and innovative other therapies. The potential of mRNA and gene editing are examples of innovative therapies being researched at present- with still no definitive research outcomes from either and more research needed."

'No one with CF left behind'

HSE launch the 'KNOW, CHECK, ASK' Campaign The HSE have launched the 'Know, Check, Ask' campaign to improve the safe use of medicines. Aimed at those who take medications regularly, the campaign asks people, "do you know your medicines? Do you keep a list? Can you describe and discuss your medicines with healthcare professionals and family when you want to?"

The campaign gives useful suggestions to those who use medications regularly for the safer use of their medicines including; keeping a photo of the list on their phones, sharing the list with a family member, friend or carer and asking for help if you need assistance from friends or family when filling out the ‘My Medicines List’, if you feel you need it.

To learn more about the “Know Check Ask” campaign to help take medicines safely, visit www.hse.ie/ safermeds, where you can download the ‘My Medicines List’ template in English and other languages.

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Spectrum / Winter 2023

It's Flu Vaccine tme of year again.

Here's a reminder of what you need to know.

Flu Vaccine

Information for People at Risk

Why get the flu vaccine every year?

Each year, the circulating flu viruses change, so each year the composition of the flu vaccine changes to provide protection from the new strains of flu virus expected. The flu vaccine helps your immune system to produce anitbodies (proteins that fight infection) and protects against the four circulating strains of flu virus. This means that if you have had the flu vaccine and you come into contact with the flu virus, the vaccine can stop you getting sick. Influenza vaccines usually reduce the risk of infection by 40-60%. Influenza vaccines also reduce the severity of illness, complications from influenza, reduce influenza-related hospitalisations, and admissions to critical care units.

What vaccines are available this flu season?

The 2023/2024 HSE seasonal flu vaccination programme will offer two vaccines: • Quadrivalent live attenuated influenza vaccine (LAIV), nasal application for those aged 2-12 years and children at-risk of flu aged 13-17 years • Inactvated quadrivalent influenza vaccine (QIV) available for all other eligible populations including those eligible children (aged 2-17 years) with contraindications to LAIV (QIV is licensed for those 6 months of age and older).

• Adjuvanted Quadrivalant Influenza Vaccine (aQIV) for older adults (aged 65 and over) is not available this season. All older adults are recommended QIV this season.

Where can I get the flu vaccine and how much will it cost?

People with CF are regarded among at risk groups eligible for free flu vaccination. You can get your flu vaccine for free now at your GP or your pharmacist.

What is the Pneumoncoccal Vaccine?

Anyone over 65 (and for PWCF adults at any age younger than 65) or those with a long-term medical condition, you should also ask your GP (Doctor) or pharmacist about the pneumococcal vaccine, which protects against pneumonia. You usually only need to get pneumococcal vaccine once. For those with CF in Ireland as detailed, you need a booster if more than 5 years since your first vaccine- depending on your age you got vaccinated and which vaccine product you received. Discuss with your CF consultant and your local pharmacist.

Will the flu vaccine protect me against COVID-19?

No. The flu vaccine doesn’t protect against COVID-19. It is important to get both the flu vaccine and the COVID-19 vaccine/booster. This is because Flu and COVID-19 are caused by different viruses. Flu and COVID-19 can both cause serious illness and if you get them you might need to be admitted to hospital.

It may be difficult to tell the symptoms of flu apart from the symptoms of COVID-19. If you have had the COVID-19 vaccine you should still get the flu vaccine. You can get a COVID-19 vaccine at the same time as the flu vaccine if it is offered to you. Visit the www.hse.ie for specific informaton related to boosters. www.cfireland.ie www.cfireland.ie

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CONFERENCE 2024 This year's Annual Cystic Fibrosis Ireland Conference will take place on the 8th,

This years annual Cystic Fibrosis Ireland Conference willthe take place on 9th and 10th of March 2024 in The Kingsley Hotel Cork, with AGM taking the 8th, and 10th of March 2024 the Kinglseyat Hotel Cork, with place on 9th the 13th April 2024.

Register forin the conference www.cfireland.ie the AGM taking place on the 13th April 2024.

We are looking forward to seeing members at the 2024 CFI 2024 Annual Conference Annual Conference on the 8th, 9th and 10th March Accommodation Rates e areKingsley delighted to invite all members to join us on the 8th, 9th and 10th March 2024 at the Kingsley 2024 at The Hotel, Cork.

We are also looking Hotel, Cork for the 2024 Annual Conference hosted by the CFI Cork branch.

We would also like to forward to the CFI AGM taking place on the 13th April 2024 members to the AGM taking place on the 13th April8th 2024 in CFMarch House2024 or online via Zoom.

- 10th - 2 nights in CF Houseinvite and online.

Room type Full Rate Early Bird Rate The conference will startwill withtake theplace opening welcome by ourwithSingle €519.00 €363.30 and As usual, the conference across the weekend the opening welcome by our Chairperson Chairperson and fundraising awards on Friday evening, fundraising awards on Friday evening, and insightful and forward looking discussions, talks and presentations Double €678.00 €474.60 insightful andfollowed forwardbylooking discussions, presentations on Saturday, the evening dinner event. and workshops on Saturday, followed by the evening 8th March 2024 - 1 night dinner event.

We are delighted to have Professor Barry Plant and Professor Emer Fitzpatrick confirmed the conference Room type Full Rate forEarly Bird Rate and we are looking forward to hearing the latest in CF researchSingle from Cian Greaney, Clare Duff, Laura Govan €254.00 €177.80 We are delighted to have Professor Barry Plant and Professor and Rini Bhatnagar. After a day of talks, our gala dinner will take place and this year, you can dance the night Patricia Fitzpatrick confirmed and we are looking forward Double €328.00 €229.60 away with 'Route 66' selected by our friends in the Cork branch. to hearing the latest in CF research from our researchers.

More speakers will be announced closer to the date.

9th March 2024 - 1 night We are acutely aware that recent global events have interupted the in-person nature of the CF community Fullto Rate Early Birda Rate on which this organisation was buit and this year addingRoom a newtype dimension the conference: series CFI are delighted to provide members with we a are 30% Single €289.00 €202.30 of opportunities for our members to meet, have a coffee and chat together.

These meet-ups are intended to early bird discount on accommodation until the 31st be an informal opportunity our membership to connect, dicuss and learn from each other.

We will Double €398.00 €278.60 Janaury 2024. If you are a for person with CF, please book chat, be facilitating one with meeting each dayHeffernan, of the conference and these will include; accommodation Caroline otherwise All prices are inclusive of accommodation, all

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bookings must be made through the hotel. When you meals relevant to the booking (Friday buffet dinner, have booked, pleaseofensure your with place at fibrosis Saturday breakfast, lunch and gala dinner, Sunday • Friday: parents babies you and register young children cystic the conference at www.cfireland.ie Dayare passes for breakfast), and conference/workshop entry. PWCF • Saturday: parents of PWCF and PWCF .who not eligible for modulators Saturday 9th March and hybrid access to facilitate online must book through Caroline Heffernan. All other • Sunday: Cork branch meet and greet attendees will also be available. bookings must be made directly with the hotel.

CFI will also host a series of in-person meet-ups of and the we weekend intended to be an informal Registration for the conference will open early inon theeach newday year will publish further details of the opportunity for members to connect. For information, the agenda and registration visit www.cfireland.ie. schedule as we have them. Please visit www.cfireland.ie for updates and information.

We are very much looking forward to the event and hope to see you then.

Cystic Fibrosis Ireland Annual Conference 2024 8th to 10th March 2024 The Kingsley Hotel, Cork

Cystic Fibrosis Ireland Coffee Dates The Kingsley Hotel, Cork 8th March 2024 Parents of babies and young children with CF 9th March 2024 Parents of children and other PWCF currently not eligible for modulator therapies 10th March 2024 Cork Branch meet and greet

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Cystic Fibrosis Ireland Cystic Fibrosis Ireland

AGM AGM

Hybrid meeting meeting 13thHybrid April 2024 at 11am 13thCF April 2024 at 11am House / Zoom CF House / Zoom Spectrum Spectrum// Winter Winter 2023 2023

EXERCISE GRANT 2024 The 2024 Exercise Grant Round 1 application form will open on Tuesday the 23rd January 2024 at midday. The form will be unavailable before this time. When it opens for applications, it will remain open until the fund is exhausted.

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he 2024 Exercise Grant Round 1 application form will open on Tuesday the 23rd January 2024 at midday. heThe Exercise Grant is open to Members of Cystic Ireland.

Members canit apply onlineopen form will be Scheme unavailable before this time. When theFibrosis form opens for applications, will remain only and once calendar year, regardless of what round they received grant in the previous until the fundper is exhausted, at which time no further applications will betheir taken or considered. year.

The Exercise Grant Scheme is open to Members of Cystic Fibrosis Ireland. Members can apply once per To calendar apply, visit www.cfireland.ie/support-resources/support/grants-and-support-services/exercise-grant, year, regardless of what round they received their grant in the previous year. To apply, visit https:// click 'apply' and complete the form. Please note the form will not be available until midday on Tuesday www.cfireland.ie/support-resources/support/grants-and-support-services/exercise-grant, click 'apply'theand 23rd Januarythe 2024.

Before you begin your application, make sure you have the following to hand: complete form. the form will not be available before midday on Tuesday the 23rd January 2024.

• Please Detailsnote of applicant • Name of Payee you begin your application, sure you have thePlease following hand: • Before Bank details of Payee - these mustmake be completed in full. notetothe grant will only be paid into a bank account in the name of the applicant, other than in the case of a minor • • Quote or receipt – you will be prompted to upload photos or quotes showing the full amount you are Details of applicant forPayee during the application process • applying Name of • Bank details of Payee - these must be completed in full Click your application willprompted be sent for be aware, if there are any errors in • submit Quote and or receipt – you will be to consideration. upload photos Please / documents during the application process the form (e.g. incorrect IBan) the form will not submit. Once submitted successfully, however, you will be brought to a ‘Thank You’ page on the website and you will receive an acknowledgement email. If you do Once submitted, you will be brought to a ‘Thank You’ page on the website and you will receive an notacknowledgement receive this emailemail. withinIf24 hours, please do get in touch with us. If you have any questions, please get you do not receive this email within 24 hours, please do get in touch with us. in touch.

SAVE THE DATE!!!

SAVE THE DATE!

The Exercise Grant Round 1 EXERCISE GRANT 2024 2024 will open on ROUND 1 23thJanuary January2023 2024 MIDDAY 23rd at at midday

Visit www.cfireland.ie or get in touch Visit www.cfireland.ie or get in touch for formore more information. information

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9

SPOTLIGHT Cyrill Gillen is a parent and long-time treasured member of Cystic Fibrosis Ireland at both a branch and Board level. He provides this lovely personal reflection as we mark the 60th year of the association and the 50th year of the Drogheda' Drawda' branch. CFI wish to acknowledge and thank all CFI branches for their past and continuing work and dedication.

Thirty two years ago having been told by the pediatrician that a cystic fibrosis test should be conducted on our son, I consulted my medical dictionary and hurled it into the bin. The condition did not seem to be included. I had looked it up under S. Some days later the diagnosis was confirmed and my spelling corrected.

It was then that I joined the Drogheda Branch, which this year is proud to celebrate its 50th Anniversary.

We all are aware of how dreadful the situation was then for children with CF and for their extended families.

There was no effective treatment, no support, financial or otherwise: in short no hope. In defiance of what must have appeared to be impossible odds Bridie Maguire RIP and Anne O Dwyer founded the first branch of CFI in 1963. In Drogheda the local branch was founded by our equivalents of those champions in 1973.

Last month we assembled in The Mariner Bar to celebrate 50 years of the branch’s efforts over those years.

It was a celebration. It was not the time or place to commemorate the pain and loss of the past. We have done that on more appropriate occasions and those who were lost are forever in the hearts of those who loved them. If we are united by being carriers of a mutant gene, we would also appear to share a gene which enables us to have a damn good time. Our annual conference is convincing evidence of this. I remember being moved by a couple who attended conference in the immediate aftermath of the death of their son.

“This is where we are among friends.” they explained.

We celebrated and honoured our founder members: Julia Kierans, wife of the late great Paddy Kierans, the foundation stone of all that has been achieved : Rosaleen Reilly, “ mother of us all” and Anne McDonnell “midwife of the branch”.

We also honoured Jim Fay, our PRO and Generalissimo, who brings military discipline to our sometime disorderly proceedings. We also were pleased to honour our evergreen Peter Hughes who has over so many years been the master of every aspect of branch activity – except of course social media. From their service so many have benefitted. Thus has been the case all over the country.

Ours is a small tight knit group. My first impression at branch level was of course of support, empathy and friendship. My lasting impression was of focus on the task in hand. Despite the apparently Rosalind and Mal Reilly at the 50th celebration impossible odds, the focus was on raising awareness and raising funds. This involved church gate collections, raffles and our Lord Mayor’s Show, highlight of our year.

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Spectrum / Winter 2023

REFLECTIONS Some funds were used to improve the lives of our children, their families and the children’s ward of Our Lady of Lourdes Hospital. But the major emphasis was always on funding Head Office. The belief was that if there was ever to be a significant breakthrough in the fight against such an intractable enemy, that it would be made by a national effort.

Since then we have the Duleek 10k Walk, which thanks to Anne and Kevin Noone has become the mainstay of our fundraising. All such efforts would be of little avail if it were not for the generosity of the public. Much of this generosity is based on peoples' memories of the tragedies of the past. This is still evident today. As we collect, we often see older people approach with a coin contribution and change to a note when they see the cause.

Years later when I became a most inadequate member of the board at national level, I had the same impression of focus on what could be achieved. Never was the darkness cursed. The focus was always on lighting the candle. But now the efforts were on a larger scale: planning, strategies, sponsoring of research, CF medical placements and advocacy. Campaigning by CFI was a mighty weapon which left many in authority bruised. It was the iron fist in the velvet glove – much like CEO Philip’s dulcet tones.

Peter Hughes and Marian Renaudin dancing the night away

I am old enough to have stood and cheered in the old Ambassador Cinema in encouragement as Rocky Bilbao, bloodied and winded, attempted to rise from the canvas. At branch and national level we have had champions who would make Rocky seem like a wimp. There was never a corner to be retreated to or towel to be thrown. Just Carry on Regardless.

Then the efforts of all bore fruit. No longer did the river in which people Pat Gregory and Anne Noone at the 50th celebration with CF attempted to survive resemble white water rapids with hazards on all sides. A breakwater brought about by the persistence of so many.

Now the river is calmer and more negotiable. Our paddles and tillers have more effect. Formidable challenges remain. But there are relatively calmer waters ahead. We have hope and a future, where only despair and the past seemed to prevail. We should be proud of what has been achieved locally and nationally but always remember that it is built on the twin pillars of the suffering and the courage of those who have labored in this vineyard before us.

We had a suitably great night in the Mariner. www.cfireland.ie

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Learning to Live for Today Jill Dorgan, Mum to Scott (pwcf) and Isaac, and the most recently ratified member of the Cystic Fibrosis Ireland Board, shares her experience not only of the rollercoaster of becoming a new parent, but of becoming a parent of a person with CF, and her hopes for a health and happy future for her son and others with cystic fibrosis

I

am truly honoured to write an article for Spectrum’s special edition in celebration of CFI’s 60 year anniversary.

As I step back into the memories of the last four years since we learned of our youngest son Scott’s diagnosis with Cystic Fibrosis, I relive the emotions from each stage. My husband Phil and I have started to see that our perception of life has changed, and not all for the worse! CF has taught us to let go of the past, to stop trying to predict the future and to really live for today. We have the privilege of raising two funny, healthy and often challenging boys, Isaac and Scott (6 and 4) and are learning to deal with what is in front of us today, not what might happen in the future.

The beginning of our CF journey will be familiar to many CF parents since the introduction of the heel prick test, getting the unexpected phone call from the hospital when Scott was 3 weeks old with a likely diagnosis of CF. There was no history of CF on either side of our families and so I googled CF to try and understand the reality of the condition. Hopelessness began to set in as we read of the short average life expectancy.

Reassuringly, finding a kind ear from CFI to take our questions and an immediate appointment in Crumlin the next day, we began to realise the strong network and systems in place to support Scott’s requirements.

After Scott’s diagnosis was confirmed by sweat test, we quickly found ourselves talking through the various aspects of managing Scott's condition. Dietary requirements, physio treatments, counselling support and financial aids both overwhelmed and equipped us with a plan of action. While the fear of his CF diagnosis remained as we imagined a very sickly life for Scott, our consultant quipped "he'll still play hurling like all the other Cork lads!" - which filled our hearts with hope. We were given even more hope when every part of the CF team told us about the incredible story of Kaftrio, the miracle CF medication that Scott would be prescribed in the future.

The next few weeks were a blur as we were sleep-deprived, rundown and navigating 4-hour round trips to Crumlin in rush hour traffic. There seemed to be so much to remember, forms to be filled, physio everyday, medication and Creon to dose - I will always remember my bed full of gritty Creon that had not made it into Scott’s mouth at 11pm and 2am and 5am breastfeeds!

Although it was a very difficult time, we always left the hospital feeling empowered with the best care for Scott. Though I didn’t realise it at the time, it was invaluable that we were immediately given a very clear action plan for

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Jill with her husband, Phil, and sons Scott and Isaac

Spectrum// Winter 2023 Spectrum

Scott’s treatment, which ultimately gave use the control amongst the chaos.

As the months passed, we settled into our new routine and everything seemed to be OK. Initially, we watched Scott’s amazing weight gain with Creon and were so reassured by how healthy he clearly was. Everything with Scott was a little different to Isaac at the same age and we struggled to determine whether it was a “CF thing” or a “Scott thing”. At 5 months old, we were treating Scott for a cough, he wasn’t feeding very well and his weight was down.

On our way back from being seen in Crumlin, we received a call from Crumlin to say that Scott needed immediate hospitalisation. His blood test had shown that he had pseudo-Barter syndrome, a severe electrolyte imbalance. We had known that he wasn’t quite right, but with Scott's natural energy and brightness, we missed pseudo-Barter creeping up on him. This was the moment that we realised that, at times, CF would require urgent action, that we had to become “Scott experts”, to trust our gut and learn the warning signs. After his treatment, he made a remarkable recovery, eating and drinking all Scott and Isaac - best buddies around him, crawling at lightening speed and tormenting his older brother, Isaac, by stealing his toys!

Our next realisation came during the Covid lockdowns, as all of our family and friends shared the “countdown to Orkambi”, where Scott would finally be on the path to a long and healthy life. We breathed a huge sigh of relief when his 3-month liver blood results were good and rejoiced when his Creon intake was reducing as a result of the medicine. However, at the 6-months blood test, this joy was replaced by complete shock when his liver bloods sky-rocketed. He was immediately taken off Orkambi to let his liver recover. Our miracle drug was swept from under out feet. We clutched for hope that might be able to could tolerate a lower dose in the future, but these attempts were unsuccessful and he remains unable to take Orkambi to this day. Perhaps naively, we had never really prepared ourselves for this outcome and went through the same emotions as those early diagnosis days. With time, we realised that this was going to be part of Scott's journey. Instead of feeling despair for what the future might hold, we needed to focus on what the present actually held. Even without Orkambi, Scott is healthy, fearless and is an impressively strong boy that people often comment on.

He has never been re-admitted to hospital and has managed to avoid IV antibiotics to date. In the absence of Orkambi, our wonderful CF team in Cork has armed us with more medication and tools so that we feel empowered to protect Scott through the viral cesspit of preschool!

We hope Scott will try Kaftrio in the future to find out whether there is a dose that he can tolerate. From our point of view, we will manage our expectations, as we know Scott’s CF journey will change and evolve as he grows and Kaftrio will be one of many medications that he will try throughout his life. I mentioned that we thought that Orkambi was his first step on his path to a long and happy life. I can now see that this was never the case, that we took that first step on diagnosis day when we committed to doing everything that we could for Scott’s best health. We took that step together with our family, our friends, his CF team and CFI and I am grateful that I have never felt alone on this CF journey.

As I reflect on 60 years of Cystic Fibrosis Ireland, I am so grateful to all of those who have gone before Scott;

www.cfireland.ie

www.cfireland.ie

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to everyone who advocated, fundraised and fought so hard to secure the dedicated CF centres of excellence that we have benefitted from throughout Scott’s treatment. I realise how lucky I am to be walking into an individual room on clinic day with consultants, physios, dieticians and nurse specialists to guide me through every step of Scott’s care. I reflect on how lucky we were to have the heel prick test which allowed us to treat Scott immediately and avoid the months and even years of misdiagnosis that other patients and parents experienced.

I am so thankful for the huge amount of work that is done behind the scenes of CFI where they advocate and fight for the needs of each PWCF. And so to finish! It is incredible to be living in a whole new era of CF where new medicines are radically transforming the lives of so many PWCF. My greatest hope is for a future when googling CF will no longer talk about “average life expectancy” but instead list a medication for every single CF genotype.

Scott, loving life and icecream

Cystic Fibrosis on the TV....

We were delighted to see that in October, cystic fibrosis once again made the airwaves, this time on BBC's Eastenders.

Like CFI when cystic fibrosis featured in RTE's 'Clean Sweep', CF Trust played a key role in informing Eastender's researchers when they were writing the role of Jade, a young girl with CF, who moves into Albert Square.

You can read their reflections here: https://www.bbc.o.uk/programmes/

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Spectrum / Winter 2023 Spectrum / Winter 2023

BEINGaAN Being CFIAMBASSADOR Ambassador Each year, Cystic Fibrosis Ireland carry out awareness, advocacy and fundraising campaigns. Stories and testimonials from the CF Community, as well as those from familes living with CF are key to these campaigns and are crucial in communicating the impact of cystic fibrosis to the public. But what does being an Ambassador involve? Amy Keller, CF Ambassador and aunt of a person with PWCF shares her experience with you here...

A

After my niece was diagnosed with CF I began to learn more fter my niece was diagnosed with CF I began to learn about it through CFI. I loved the idea of 65 Roses Day and used it more about it through CFI. I loved the idea of 65 Roses as part Day of a fundraiser - 65 ParkRuns for 65 Roses. I ran a different and used it as part of a fundraiser - 65 parkruns for 65 ParkRun every week (asParkRun much as I could) hit 65. roses. I ran a different every weekuntil (as Imuch asII began could) with the University of Limerick ParkRun in November 2021 and until I hit 65. I began with the University of Limerick ParkRun finished in St Annes Parkfinished in Dublininthis summer andineven gotthis to in November 2021 and St Annes Park Dublin asummer ParkRunand in Stockholm so supported

by CFII even got toina between.

ParkRun inI felt Stockholm in between. throughout and thebyopportunities theyand helped provide exceeded felt so supported CFI throughout the opportunities they expectations. helped provide exceeded expectations.

As As part part of of 65 65 Roses Roses Day Day last last year, year, myself myself and and my my family family were were interviewed and filmed for Nationwide, something I never interviewed and filmed for Nationwide, something I never even even dreamed dreamed of of when when starting starting out. out. We We were were trying trying to to spread spread awareness of CF and the brilliant work CFI do.

The thought awareness of CF and the brilliant work CFI do. The thought ofofit itwas was nerve wracking they guided us through so well.

I've nerve wracking butbut they guided us through so well, I've since since media interviews confidence grown done done otherother media interviews andand my my confidence hashas grown so so much through this experience.

The CF community is so strong much through this experience. The CF community is so strong and and CFI CFI does does so so much much to to support support that, that, itit has has really really helped helped us us as a family personally as well as helping us spread awareness as a family personally as well as helping us spread awareness and and fundraising. fundraising. I'm I'm very very happy happy and and proud proud to to be be involved involvedas asan an ambassador for CFI. ambassador for CFI.

Cystic Fibrosis Ireland Ambassador 2023/2024 Online Event Schedule 27 November 2023: Welcome Ambassadors 2024!

CFI are currently recruiting for Ambassadors for 2024. If you would If you are interested inour becoming an Ambassador for CFI, like to know more about Ambassador programe, read our or new would like to know more, you can find details on our website Ambassador guidelines or view our Ambassador training schedule, contact Nicola on ndelaneyfoxe@cfireland.ie or visit https://www. at https://www.cfireland.ie/get-involved/cf-ambassadors or cfireland.ie/get-involved/cf-ambassadors email: ndelaneyfoxe@cfireland.ie

30 January 2024:

Media Training with Guest Speakers

20 February 2024:

Minding yourself while telling your story

March 2024:

65 Roses campaign kick off

May 2024:

65 Roses campaign round up

June 2024:

Summer catch up

July 2024:

Summer campaign kick off

August 2024:

Have your say www.cfireland.ie

www.cfireland.ie www.cfireland.ie

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HOSPITAL HUB Cork Centre Centre for for Cystic Cystic Fibrosis Fibrosis (3CF) (3CF) are are excited excited Cork to share share some some of of our our recent recent updates updates with with the the to CF Community Community CF Firstly, we are Clinical are delighted delightedto toannounce announcethe thesuccessful successfulappointment appointmentofoftwo twonew new Clinical Firstly, we are delighted to announce the successful appointment of two new Clinical Consultants, Dr Hisham Hisham Ibrahimand and DrKevin Kevin Deasy.Both Both Dr Adult CF-Respiratory CF-Respiratory Consultants, Adult Consultants, Dr Dr Hisham Ibrahim Ibrahim andDr Dr KevinDeasy.

Deasy. BothDrDr Ibrahim and Dr Dr Deasy Deasy are are highly-qualified highly-qualifiedininthe thearea areaofofadult adultCFCFmedicine medicinehaving having Ibrahim and Dr Deasy are highly-qualified in the area of adult CF medicine having previously in ourCFCF unit both in clinical and research SpR-capacities for worked previously both in clinical and and research SpR-capacities for for worked previously ininour our CFunit unit both in clinical research SpR-capacities approximately three 3 years each.each. approximately approximately 3 yearsyears each.

Dr Hisham Ibrahim Dr Hisham Ibrahim

In addition, they have both Mater both worked workedas asSenior SeniorSpRs SpRsininthe thetransplant transplantunit unitininthe the Mater Dr Hisham Ibrahim In addition, they have both worked as Senior SpRs in the transplant unit in the Mater hospital and previously as Clinical Clinical Associates ininthe the adultCF CF unitininCork.

Cork. Weare are hospital and previously as as Clinical Associates Associates in the adult adult CFunit unit in Cork.We We are delighted to welcome them back to ourour unit in their new positions, and they are looking towelcome welcomethem them back in their positions, andare they are delighted to back to to our unitunit in their new new positions, and they looking forward to working with the PwCF andPwCF their families attending our centre. our We have also looking forward to working with the and their families attending centre. forward to working with the PwCF and their families attending our centre. We have also successfully completed the interviews forthe two new SeniorforAdult CFnew Psychologists.

This We have also successfully completedfor twoCF Senior Adult successfully completed the interviews twointerviews new Senior Adult Psychologists.

This is a huge opportunity for the unit as our service has never had designated psychology Thisfor is athe huge for has the never unit as ourdesignated service has never isCFa Psychologists. huge opportunity unitopportunity as our service had psychology support at our MDT. We understand that one of the psychologists will be starting in Dr Kevin Deasy had designated psychology support at ourone MDT. We psychologists understand that of the in support at our MDT. We understand that of the will one be starting Dr Kevin Deasy early December 2023 and we hope the second psychologist will join in early 2024. psychologists will be and starting in early December 2023 andwill wejoin hope the second early December 2023 we hope the second psychologist in early 2024. psychologist will join in early 2024.

Dr Kevin Deasy

We are continuously working on our website www.3cf.ie so that it can become a more useful tool to the We are continuously working on our website www.3cf.ie so that it can become a more useful tool to the We are continuously working onfor ourand website www.3cf.ie so that it can become a more useful toolAdvice” to the PwCF and their families we care the wider CF community.

We have now made a “Seasonal PwCF and their families we care for and the wider CF community. We have now made a “Seasonal Advice” PwCFwith and information their familiesonwe caretofor and theWe wider community. have now made apage “Seasonal Advice” page how stay well. areCF also building a We “Research Updates” to translate all page with information on how to stay well. We are also building a “Research Updates” page to translate all pagescientific with information on how to stay well. We alsothese building a “Research Updates” page to translate our publications to short synopses andare share with those we care for. We hope this page all to our scientific publications to short synopses and share these with those we care for. We hope this page to ourlive scientific to short synopses and share these with thoseyou wewould care for. this page to be on ourpublications website before Christmas.

If there are research studies likeWe to hope see on this page, be live on our website before Christmas. If there are research studies you would like to see on this page, be live on our website before Christmas.

If there are research studies you would like to see on this page, please feel free to reach out to Dr Tamara Vagg (tamara.vagg@ucc.ie) and let her know. please feel free to reach out to Dr Tamara Vagg (tamara.vagg@ucc.ie) and let her know. please feel free to reach out to Dr Tamara Vagg (tamara.vagg@ucc.ie) and let her know.

Our group continues to participate in ongoing CF research with five abstracts Our group continues to participate in ongoing CF research with five abstracts accepted for oral and poster presentations at the European Respiratory Society accepted for oral and poster presentations at the European Respiratory Society Adult CF Conference in December. We also continue to actively engage in CF Adult CF Conference in December. We also continue to actively engage in CF Telehealth research, and are now the coordinators of an ECFS Working Group Telehealth research, and are now the coordinators of an ECFS Working Group exploring CF telehealth care across Europe. In the September issue of Spectrum exploring CF telehealth care across Europe. In the September issue of Spectrum there was a call for PPI involvement for part of this telehealth research. If this there was a call for PPI involvement for part of this telehealth research. If this something that you would be interested in contributing too, please see details something that you would be interested in contributing too, please see details on the CFI website or email Tamara. on the CFI website or email Tamara.

Finally, we would like to say a big thank you to all the PwCF and their families who attend and support our Finally, we would like to say a big thank you to all the PwCF and their families who attend and support our clinical and research services. We wish you the very best for the upcoming festivities, and we look forward clinical and research services. We wish you the very best for the upcoming festivities, and we look forward to continuing to develop our service with you in 2024. to continuing to develop our service with you in 2024.

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Spectrum Spectrum// Winter 2023 Spectrum / Winter 2023

Children's Health Ireland atat Tallaght University Children's Health Ireland Tallaght University Hospital are delighted toto welcome DrDr Lucy Perem to Hospital are delighted welcome Lucy Perem toCF theDepartment CF Department the After a long career in After Cystica Fibrosis, Professor Greally has retired and Dr. Lucy Perrem has taken long career in Cystic Peter Fibrosis, Professor Peter Greally over his position atLucy the CF Department at over CHI Tallaght University has retired and Dr. Perrem has taken his position at the Hospital.

CF Department at CHI Tallaght University Hospital.

Lucy has recently returned from the Hospital for Sick Children, Toronto. She has extensive clinical training including years of training at theShe Hospital Lucy has recently returned from thefour Hospital forfellowship Sick Children, Toronto. has for Sick Children, Toronto, Canada. fellowships in paediatric extensive clinical training including four She yearscompleted of fellowship training at the Hospital respiratory medicine, cystic fibrosis and rarecompleted lung diseases. for Sick Children, Toronto, Canada.

She fellowships in paediatric respiratory medicine, cystic fibrosis and rare lung diseases.

Dr Lucy Perem

Lucy is a clinical researcher with a Master of Science in Evidence-based health care Dr Lucy Perem from Oxford University and awith PhDafrom theof Royal College of Surgeons in Ireland.

Lucy is a clinical researcher Master Science in Evidence-based health care from Oxford University and primary a PhD from the Royal of Surgeons Ireland. research is early investigating role Her research focusCollege is investigating thein role of theHer lungprimary clearance index focus (LCI) in CF lung the disease. of the lung clearance index (LCI) publications in early CF lung 25 peer-reviewed publications and in She has over 25 peer-reviewed anddisease. in 2021She washas theover winner of the Junior Clinical Investigator 2021 was theNorth winner of the Junior Clinical Investigator award at the North American CF Conference. award at the American CF Conference.

Updates from Children in Hospital Ireland Children in Hospital Ireland are delighted to announce that the InformationHub is now live. The InformationHub is a new digital resource to support families with the information they need when their child requires hospital care.

Available at www.informationhub.childreninhospital.ie, The InformationHub Available at www.informationhub.childreninhospital.ie, The InformationHub provides provides information information on on how how to to prepare prepare for for hospital, hospital, financial financial and and well-being well-being supports supports available, available, home home and and community community care care as as well well as as practical practical information information about individual individual hospitals hospitals including including parking, parking, accommodation accommodation and and accessibility. accessibility. about You @childreninhospital.ie on on Youcan canalso alsokeep keepuptodate uptodatewith with the the Information Information Hub Hub by by following following their their posts posts on on @childreninhospital.ie Facebook, Facebook,@childreninhosp @childreninhospon onXXand and@children-in-hospital-ireland @children-in-hospital-irelandon onLinkedIn. LinkedIn. Another great resource available for young people are families is SteppingUp.ie.

Another great resource available for young people are families is SteppingUp.ie.

SteppingUp.ie was created with young people and medical professionals to help young people with long-term illnesses prepare to move to adult healthcare. The SteppingUp.ie wasadvice, createdpersonal with young people and medical to help website features stories, videos and the professionals new downloadable young people with illnesses prepare to move to adult healthcare. The guide to moving to long-term adult healthcare. website features advice, personal stories, videos and the new downloadable guide to moving to adult healthcare.

www.cfireland.ie

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CFI AND CYSTIC FIBRO

CF CARE CF CARE The different contributors reflections in this edition of Spectrum, take us back many years. Indeed a look bac is a snap timeline D E V E L O P M E N T S www.cfireland.ie, D E V E but L here OP M shot EN T Sof the C F C-A2013 RE C F C- A RE 2001 2014 2017 DEVELOPMENTS DEVELOPMENTS 2001 - 2013 2014 - 2017 Cystic Fibrosis Registry of Ireland is established by CFAI

CF PAEDIATRIC OUTPATIENT

2001

becoming independent in 2005 and moving to UCD

opens in Drogheda Hospital, Galway Hospital, Cavan Hospital

2014

POLLOCK REPORT

Cystic Fibrosis Registry of is published by CFAI Ireland is established by CFAI 2005 2001 providing a blueprint for CF becoming independent in 2005 and moving to UCD

services in Ireland.

FIRST CF DOUBLE LUNG

POLLOCK REPORT

is published by CFAI 20052007 providing a blueprint for CF

transplant is carried out in Ireland in the Mater Hospital, Dublin.

services in Ireland.

THE HEALTH SERVICE EXECUTIVE (HSE)

FIRST CF DOUBLE LUNG

2009 2007 endorses most findings

transplant is carried out in Ireland in the Mater Hospital, Dublin.

of the Pollock Report

NEW OUTPATIENTS UNITS

in Beaumont Hospital for adults, and Temple St for children and 3 inpatient beds open in Galway funded by CFAI/Galway branch.

THE HEALTH SERVICE EXECUTIVE (HSE) 2010

2009

NEW OUTPATIENTS UNITS

in Beaumont Hospital for adults, and Temple St for children and 3 inpatient beds open in Galway funded by CFAI/Galway branch.

endorses most findings of the Pollock Report

NEWBORN SCREENING

commences in Ireland. A CF inpatient unit opens in Crumlin Hospital funded by CFAI

2011 2010

KALYDECO is approved

by the EMA, the first drug to tackle the underlying cause of CF, with potential to impact 10% of the CF population in Ireland

NEWBORN SCREENING

commences in WORLD Ireland. A CF WIDE 2012 2011 inpatient unit opens in Crumlin Hospital funded by CFAI

DOUBLE LUNG TRANSPLANT

CF PAEDIATRIC OUTPATIENT

for cystic fibrosis increase 2014 from 2 in 2012 to 20 in 2014 2014

opens in Drogheda Hospital, Galway Hospital, Cavan Hospital

KEY STAFF EMPLOYMENT

Key positions in CF Care are filled between 2012 and 2014 amounting to €150,000

DOUBLE LUNG TRANSPLANT 2014 for cystic fibrosis increase 2014 from 2 in 2012 to 20 in 2014

GRANTS PROVIDED

KEY STAFF EMPLOYMENT

€460,000 of Exercise, Physio,

Counselling, Fertility, Social and 2014 2014 Distress and Transplant grants

Key positions in CF Care are filled between 2012 and 2014 amounting to €150,000

provided to PWCF from 2012 - 2014

BEAUMONT HOSPITAL CF UNIT campaigning for

GRANTS PROVIDED

2014€460,000 of Exercise, Physio, 2014 Counselling, Fertility, Social and

a in patient CF unit begins in association with CF Hopesource

Distress and Transplant grants provided to PWCF from 2012 - 2014

BEAUMONT HOSPITAL CF 2014 UNIT campaigning for a in patient CF unit begins in association with CF Hopesource

CFI begins what is to be a 2014 major contribution

CF ADULT OUT PATIENT UNIT

NATIONAL RARE

2015 DISEASE PLAN opens in Mayo General Hospital 2014 CFI begins what is to be a major contribution

SVUH opens new CF Unit.

Building for the new CF Unit KALYDECO is approved Limerick starts funded by byin the EMA, the first drug to tackle TLC4CF/CFAI. the underlying cause of CF, with 34th ECFS takes10% place in Dublin potential to impact of the CF

2012 2012

IRELAND WORLD WIDE

CF ADULT OUT PATIENT UNIT

CF ADULT UNIT LIMERICK opens in Limerick hospital

after much campaigned by 2016 2015 TLC4CF and CFI

opens in Mayo General Hospital

population in Ireland

SVUH opens new CF Unit.

Building for the new CF Unit WORLD WIDE in Limerick starts funded by TLC4CF/CFAI. 34th ECFS takes place in Dublin

NATIONAL RARE DISEASE PLAN

CFAI celebrates 50

2013 2012years

IRELAND

CF INPATIENT UNITS

CF ADULT UNIT LIMERICK

2016 opens in Limerick hospital after much campaigned by 2016

open in Waterford Hospital and Cavan hospital

TLC4CF and CFI

KALYDECO

IRELAND WORLD WIDE

the ground breaking CF drug, 2013 CFAI is approved for use in50 Ireland. celebrates 2013 years

NATIONAL CLINICAL

2017 PROGRAMME FOR CF open in Waterford Hospital and 2016CFI advocating since 2011 CF INPATIENT UNITS

Cavan hospital

IRELAND

2013

KALYDECO

the ground breaking CF drug, is approved for use in Ireland.

2017

20

NATIONAL CLINICAL PROGRAMME FOR CF CFI advocating since 2011

Spectrum / Winter 2023

OSIS CCARE CF CARE F C A R E 2000 - 2023

ck at the history of CFI, formerly CFAI, takes us back until 1963. Our full timeline can be found on our website e developments of CF Care since the turn of the century.

DEVELOPMENTS C F C 2021 ARE 2017DEVELOPMENTS 2017- 2021

INDEPENDENT LIVING SURVEY AND REPORT (CFI) CFI published the Independent Living report

KAFTRIO EXTENSION

Access granted for 140 addition children with CF with campaign for 35 children aged 6-11 excluded from Kaftrio ensuing

2017 THE PIPELINE DEAL

INDEPENDENT LIVING Access to new and innovative 2017 medicine Orkambi and the SURVEY AND REPORT (CFI)

2017 agreement of the Pipeline deal

CFI published the Independent Living report

CF CLINICAL POSTS

THE PIPELINE DEAL

2018 Access to new and innovative 2017 medicine Orkambi and the

Key positions in CF Care are funded by CFI between 2016 and 2018 amounting to €220,000 p.a.

agreement of the Pipeline deal

CF CLINICAL POSTS

MODULATOR THERAPIES Extension of Orkambi and Kalydeco and approval of Symkevi

2018 2018

Key positions in CF Care are funded by CFI between 2016 and 2018 amounting to €220,000 p.a.

CF SELF MANAGEMENT APP

MODULATOR THERAPIES

2018 Extension of Orkambi and 2018 Kalydeco and

App launched to facilitate the self management of CF. Joint collaboration with Crumlin Hospital

CF SELF MANAGEMENT APP

approval of Symkevi

GLOBAL PANDEMIC CFI provided a range of supports , information & advocated for improved vaccine prioritisation

2020 2018

App launched to facilitate the self management of CF. Joint collaboration with Crumlin Hospital

HUMAN TISSUE BILL

GLOBAL PANDEMIC 2020 CFI provided a range of supports , 2020 information & advocated for

Commitment in the Government programme to include soft opt out organ donation

improved vaccine prioritisation

KAFTRIO

HUMAN TISSUE BILL

2020 of the CF triple Commitment in the 2020prescribing combination drug, Kaftrio Government programme to HSE commenced the

include soft opt out organ donation

CF MODEL OF CARE

KAFTRIO

2021 HSE commenced the 2020 prescribing of the CF triple

First draft of the Transplant Model of Care published by the National Clinical Programme

CF MODEL OF CARE

2021 2021

2021

First major extension of Kaftrio to about 60 more patients in Ireland

KAFTRIO EXTENSION First major extension of Kaftrio to about 60 more patients in Ireland

2022 THE UKRAINE WAR

KAFTRIO EXTENSION

CFI providing funding & support for people with CF in Ukraine & displaced persons in Ireland

Access granted for 140 addition children with CF with campaign for 35 children aged 6-11 excluded from Kaftrio ensuing

2022 2022

HUMAN TISSUE BILL

THE UKRAINE WAR 2022 CFI providing funding & support 2022 2023 for people with CF in Ukraine &

The first and second stage of the Human Tissue Bill and soft opt out organ donation

displaced persons in Ireland

CF CONSULTANT

HUMAN TISSUE BILL The first and second stage of the Human Tissue Bill and soft opt out organ donation

2022Post transplant consultant for 2023 the Mater hospital appointed 2023

KAFTRIO 35

35 children with CF who have been excluded from access to Kaftrio for almost a year. are granted access

CF CONSULTANT

2023 2023 Post transplant consultant for the Mater hospital appointed

MODULATOR EXTENSIONS

KAFTRIO 35

EMA/European Commission

35 children with CF who have been excluded from access to Kaftrio for almost a year. are granted access

Orkambi to 1 - 2 yr olds 2023 2023extends and Kaftrio to 2 - 5 yr olds

MERLIN PARK, GALWAY

MODULATOR EXTENSIONS

EMA/European Commission 2023 2023 extends Orkambi to 1 - 2 yr olds

Sod is turned on the Merlin Park CF Outpatient Unit in Galway

MERLIN PARK, GALWAY Sod is turned on the Merlin Park CF Outpatient Unit in Galway

and Kaftrio to 2 - 5 yr olds

PSAG TURNS ONE

The Pregnancy, Support and Advocacy Group set up in 2022

by Jen Balfe and CFI turns one

2023 2023

HUMAN TISSUE BILL The Human Tissue Bill passed the Report Stage in Dail Eirean

2023

combination drug, Kaftrio

KAFTRIO EXTENSION

First draft of the Transplant Model of Care published by the National Clinical Programme

www.cfireland.ie

DEVELOPMENTS C2021F C A2023 RE DEVELOPMENTS 2021- 2023

BRIDIE MAGUIRE

2023 Bridie the first CEO of CFI (formerly CFAI) passes away.

BEAUMONT HOSPITAL

HUMAN TISSUE BILL

Green light is given for the

The Human Tissue Bill passed the Report Stage in Dail Eirean

2023 2023commencement of 20-room adult CF inpatient unit

BEAUMONT HOSPITAL Green light is given for the

2023 commencement of 20-room adult CF inpatient unit

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RESEARCH 37 Years On - A trip down memory lane

by Professor M.X. FitzGerald Memories flooded back when the Association asked me to re-visit the report that I wrote for Future Force in 1986/87 (available on page 24). At that time, I had the honour to be the President of the Association and I had just attended the 14th Annual Meeting of the European Working Group for Cystic Fibrosis (EWGCF) - the major European CF Society at that time - in Budapest, Hungary in September 1986.

The cystic fibrosis (CF) world then was in an entirely different place 37 years ago compared to 2023. The cause of CF was only vaguely outlined, life expectancy was 20 to 30 years less than now, there were few Adult CF Centres anywhere, lung transplantation was in its infancy and the most recent advances in treatment were new anti-Pseudomonas drugs, nebulised antibiotics and stronger pancreatic supplements.

But looking back now at that meeting, I clearly recall the great sense of optimism among the medical, scientific and lay delegations that we were on the cusp of some of the greatest scientific breakthroughs in the history of the disease. Just the year before in 1985 the international CF community had been hugely excited that the location of CF gene had, at last, been narrowed down to chromosome 7. And at Budapest it was clear from the keynote speakers that we were very close to the getting the ultimate genetic answer to CF. I reported in my article "...there is now a hectic race on between the CF research groups---" to finally map and define the exact structure and function of the elusive gene. And then just two years later in 1989 the CF gene was precisely identified and mapped by the brilliant Nobel Prize-winning trio of Professors Lap Tsui Chee and Jack Riordan based in Toronto Canada and US scientist Frances Collins in Boston.

In the scientific research symposia Ireland was well represented in Budapest. Professor Michael Ryan of the Department of Pharmacology at University College Dublin in conjunction with my team at the Adult Cystic Fibrosis Centre at St Vincent’s were involved in two well-received presentations, both of which had been generously funded by the CF Association. From its earliest days CFI has always funded research projects as part of its mission and that policy continues right to the present day, with current Irish research teams making notable contributions to advancements in CF science and care in 2023.

There was a strong lay delegation from the CF Association of Ireland, led by the legendary Bridie Maguire with the key volunteer Officers Tony O’Toole, Alan Patrick, Danny Butler - all of whom had personal daily experience of CF in their families. Professor Eddie Tempany played a key leadership role on the Medical Committee of the EWGCF. On the social side, which of course is where a lot of business gets done, the

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Irish CF delegates were a revelation to me as the ‘new kid on the block’. They seemed to know everybody, be known in turn by all the international delegates and to be extremely popular. I was brought by Bridie Maguire and Eddie Tempany to meet the heads of all the European and North American delegations in a whirl of introductions that I could barely keep up with. Bridie and Eddie were keen to ‘show me off’ to the other delegates because Ireland was one of the few countries at that time with a dedicated Adult CF, the St Vincent’s Unit in Dublin having started as a pioneering venture in 1976.

At Budapest the Irish CF Association team began a brilliant campaign of lobbying to have Ireland nominated as the location of the prestigious World Congress on Cystic Fibrosis for 1992. And they did the same again in Sydney, Australia in 1988 which resulted in Dublin being the host city for the World Congress, the highlight of which was the attendance of the three scientists who discovered the CF gene. It was then I realised how the Irish CF Association was so highly regarded in the international CF community for their expertise, collegiality and hard work. As an Irish person, I was immensely proud of that team, their networking and diplomatic skills and their sheer dedication to the CF cause. Sadly, none of that team are still with us, but their example lives on in the achievements of the subsequent teams of dedicated Chairpersons and Officers of the organisation.

Equally remarkable at Budapest was the strong Irish CF Adult representation in the persons of Gerry Walker and Helen Ryan Lawless. Both have sadly passed on now, surviving into their 50’s after decades of coping personally with all the daily difficulties of CF, and selflessly combining that with being role models and leaders in this new CF world where survival into adulthood was a whole new experience. They were among a group of true pioneers in the Association.

In Budapest they were involved in setting up an international network of fellow CF adults and subsequently they were key players in the organisation of the large CF Adult parallel conference that took place in Dublin at the World Congress six years later. In their personal lives I was privileged to know Helen and Gerry and participate with the St Vincent’s team in their care. over many years. I was truly inspired by their personal resilience. Helen was one of the first individuals with CF to become a mother, a remarkable event in that era.

And she selflessly shouldered a huge physical and psychological burden in her many years of being a ‘motherfigure’ to teenage PWCF as they transitioned to adulthood. Likewise, Gerry led a remarkable life right to the end. Together with his wife Margaret he scaled some of the highest mountains in the world, raised funds for CF research, had a transplant, and held down his job as a professional full time civil servant.

So, looking back over 37 years on from the Budapest Congress I feel a variety of emotions. Joy and thankfulness - at the wonderful advances made in Cystic Fibrosis research that has resulted in truly life changing improvements in the quality of life and life expectancy for those with Cystic Fibrosis. Hope – of further life-long cures for children yet unborn with CF; Sorrow - as I remember the CF delegates who attended the Budapest conference in 1986 and who are no longer with us. But that is a sorrow that is tempered with great admiration for the dedicated work they and their successors did over so many years in CFI and the beneficial legacy of that work for future generations of PWCF and their families.

Ni bheidh a leitheid aris ann.

Professor M.X. FitzGerald

www.cfireland.ie

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Article from Cystic Fibrosis Association of Ireland's 1986 Winter edition of 'Future Force'

24

Spectrum / Winter 2023

Pathways: Voice Your Opinion “Pathways” is a research project that seeks to support adolescents with Cystic Fibrosis (CF) to successfully manage their health, as they prepare for their transition to adult services. We are particularly keen to understand more about how young people manage their health and their experiences of transitioning to adult services given the new treatments available to young people such as Kaftrio. To get started, we are inviting young people living with Cystic Fibrosis to join an online panel and act as our advisors.

We are looking for 10 young people to help ensure our research is focused on issues that are important to young people with Cystic Fibrosis. If you are aged 16 or 17 and would like to get involved or are a parent of a young person who might like to get involved, get in touch and we can send our information form. For those aged 16-17, you will need parental permission and we need to know you are also happy to be involved.

What will you gain by becoming a member of our Young Adult Panel?

As a panel member you will get an opportunity to: • share your views and have your voice heard on issues that are important to young people with CF • to develop your communication, decision making, teamwork and research skills • engage with and learn from a group of peers contribute to research and help to shape our research activity

Why do we need your input?

• •

We want to learn more about your experience and what is important to you We want to use what you share to better support adolescents with Cystic Fibrosis (CF) to successfully manage their health and prepare for their transition to adult services.

What can I expect / How do I apply?

Members will be invited to join a meeting, held online, every two months for the duration of the project ending in 2024. We would like your feedback on: • how we communicate with young people with CF • our research material • what issues are most important to young people living with Cystic Fibrosis As a panel contributor you are not a participant in a research study but a valuable member of the research team, actively involved in the decisions made about the research. You bring a wealth of expertise from your lived-experience of Cystic Fibrosis. Panel contributors will be reimbursed for their time.

PATHWAYS YOUNG ADULT RESEARCH PANEL JOIN A TEAM OF RESEARCHERS, HEALTHCARE PROFESSIONALS & YOUNG PEOPLE TO IMPROVE EXPERIENCES OF SERVICE TRANSITION FOR YOUNG PEOPLE LIVING WITH CYSTIC FIBROSIS ARE YOU 16-25 YEARS OLD & LIVING WITH CF?

WHATS INVOLVED? JOIN AN ONLINE MEETING EVERY 2 MONTHS VOICE YOUR OPINION GAIN EXPERIENCE MAKE AN IMPACT CONNECT WITH OTHERS BE REIMBURSED FOR YOUR TIME

WE WANT TO HEAR FROM YOU

To sign up or find out more:

Dr Caroline Heary & Dr Angeline Traynor angeline.traynor@universityofgalway.ie

www.cfireland.ie

angeline.traynor@universityofgalway.ie SCAN HERE

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CF Telehealth Public Patient Involvement (PPI) Hello my name is Tamara and I am a Digital-Health Post-Doctoral researcher working with the adult CF team (3CF) in Cork University Hospital. During the pandemic, our unit setup a telehealth service to support PwCF to receive care safely. Telehealth is virtual consultations between a patient and their care team (for example Webex, AttendAnywhere, WhatsApp video call, phone call). We conducted a research study that looked into what PwCF and the CF team at Cork thought of telehealth, and had some very positive results. We also got some great suggestions on where else telehealth could be used to support PwCF and their families.

Since then, we have done a few in depth literature reviews, and learnt a lot about CF telehealth but there still seems to be a lot that the CF scientific community don’t know about guidelines and how to setup a telehealth service. To learn more about this, we are setting up a European Cystic Fibrosis Symposium (ECFS) working group to try and learn more, and to pool as much knowledge together as possible to create guidelines. As part of this, we hope to have some Public Patient Involvement (PPI) contributors join our research team. As a member of a PPI, you would be actively involved as a member of the research team, using your experience and knowledge to help shape how we run the study, what data we should look at, and how we can understand the results more. CFI have worked to create their own PPI panel, and if you are interested in learning more about PPI click here.

About the Project: The overall objective is to investigate how telehealth can complement CF care in a post-covid era. The first aim will be to identify generalisable guidelines that can aid CF centres developing their own hybrid models.

The next aim will be to investigate which aspects of telehealth can be harnessed to further compliment CF care.

Panel Demographics: We are hoping that seven contributors will join our research group so that we can have a broad range of experience and insight. We are hoping people with the following experience will join our team: two adults with CF, two adolescents with CF, two parents of children with CF, an individual caring for someone with CF and does not have CF, preferably a sibling or a partner.

Time & Work Commitments: If you were to join our research group we hope to have five formal meetings over the next 1.5 years to discuss the design, data, and results; one co-creation workshop at the end of the 1.5 years to begin shaping these guidelines. After this, there is the option to continue your involvement in this study at an EU level via the ECFS working group.

Payment: We have a budget to reimburse PPI contributors for their time. These reimbursements will be made through University College Cork (UCC) in the form of vouchers (Tesco or Me2you) in keeping with UCCs policies. You can read more about UCC PPIs payment policy on www.ucc.ie/en/ppi-ignite/ppiresources/budgetingforppi/.

Please contact me by visiting www.tamaravagg.com if you would like to take part or have any questions about taking part.

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Spectrum / Winter 2023

The CFRI

The CFRI

20 years and counting: a report celebrating over 20 years of CFRI is now live!

While CFRI aren’t quite celebrating 60 years (just yet), we are sharing a While celebration CFRI aren’twith quite (justtoyet), we arethat our special CF celebrating Ireland. We 60 are years delighted announce ’20 years and counting’ report iswith now CF live!Ireland.

The report overto20 years sharing a special celebration We celebrates are delighted of collecting data on people with CF in Ireland. We were delighted to share announce that our ’20 years and counting’ report is now live! The some of the insights from the report at the CF Ireland conference earlier in the year (and share some report celebrates overgorgeous 20 yearscelebratory of collectingcakes data –onthank-you!). people withThe CF report is now available online and in this contribution to Spectrum, we’ll bring you a in Ireland. summary of what’s in the report. The full report can be found here: https:// cfri.ie/annual-reports/ We were delighted to share some of the insights from the report at the

The history of CFRI

CF report Irelandstarts conference earlier in the year (and some gorgeous The by giving a brief overview of CFshare care in Ireland over the last number of decades. then highlights of the key moments in the history celebratory cakes –Itthank-you!).

Thesome report is now available online of CFRI. The close links with CF Ireland have been maintained throughout the and in this to Spectrum, we’llfounded bring you a summary of time, years.

Did youcontribution know? The CFRI was officially in 2001 and, at that was partinofthe & co-located thencan Cystic Fibrosis Association of Ireland. what’s report. Thewith fullthe report be found here: https://cfri.

This early home for the registry was key to getting things up and running and ie/annual-reports/ highlighting the vital need for the registry. However, in line with international guidelines, the registry needed to be seen as a trusted third party & as such, the registry became and independent organisation in 2005 and secured office Through the years the registry has fought to maintain its sustainability space in UCD. in the long-term; a key success was securing core funding from the In its earliest days, the registry played a role in informing the Pollock Report HSE in 2011. Likewise, developing a strong research programme and and providing an evidence-base for what was to become the National presence has been for keyCystic to theFibrosis longevity the registry thus far.

Thewas key Clinical Programme in of Ireland.

The registry data toregistry evidencing and supporting the ideas and research recommendations presented has contributed to a number of large projects over in the report. In particular, the registry provided data on patient numbers, the years (includinginRecover, ICOS, CFORMS, Irish Longitudinal Studydata to patient distribution CF centres across the country and ultimately support arguments madeDisease, in the Pollock report for more efficacy efficientand allocation of Cystic Fibrosis Liver and post-authorisation of resources. safety studies) and has developed its own programme of research led by athe number different members.

Through yearsof the registrystaff has fought to maintain its sustainability in the long-term; a key success was securing core funding from the HSE in 2011.

Likewise, developing a strong research programme and presence has been key to the longevity the registry thus far.

The registry has contributed CFRI wouldn’t be of where it is today without the strong support to a

www.cfireland.ie

27

number of large research projects over the years (including Recover, ICOS, CFORMS, Irish Longitudinal Study of Cystic Fibrosis Liver Disease, and post-authorisation efficacy and safety studies) and has developed its own programme of research led by a number of different staff members. CFRI wouldn’t be where it is today without the strong support and engagement from people with CF and their families, the MDTs across the country, and of course the dedicated team at CFRI itself for ensuring that everything we do is of high quality and ensuing CFRI meets its overall objective: “To provide for the relief of sickness, disease and human suffering and to advance education by facilitating and undertaking research and providing accurate reports in order to monitor and improve treatments which will contribute to the improving quality of care and outcomes of persons with cystic fibrosis.”

20 Years of Data The main body of the report presents the longitudinal trends across a selection of variables we collect data on. In the below graphs you will get a sense of some of these trends, but more can be found in the report itself.

Population coverage: In the first few years of operations, CFRI saw a steep rise in the proportion of the CF population consented to participate in the registry reaching nearly 90% in 2008, just 5 years after the registry started reporting on data. Percentage coverage has remained a central focus for the registry, ensuring that high coverage is maintained, as is demonstrated by the above graph. Maintaining a high level of coverage has solidified CFRI’s ability to participate in many real-world evidence studies and other large-scale research projects.

Median age: In 2004 half of the CF population was over 16 years. This median age had risen to 22.4 years by 2021. Median age means half the population are above the median age & half are below.

An increase in median age, as shown by the graph, reflects overall increases in the numbers of PWCF in older age-groups.

This is a positive indicator for CF, illustrating that PWCF are living longer.

Lung function: As a result of the availability of new treatments and therapies over the last 20 years (and beyond), overall improvements in lung function over time are clear from CFRI data, which shows steadily increasing mean ppFEV₁ across all age groups

28

Spectrum / Winter 2023

Hospitalisation Since 2012, when registry data showed the highest number of hospitalisations (n=836) and the highest rate of hospitalisations per patient per year (0.78), the registry has seen a steep decline in both the number of hospitalisations and subsequently the rate of hospitalisation per patient per annum, reaching 0.17 in 2021. Of course, the impact of the Covid-19 pandemic will impact the figures during 2020 and 2021, but nevertheless there is a decreasing trend over time.

Chronic Infection: Tracking the prevalence of chronic infections over time gives us a sense of overall burden of CF. Since 2008, there have been overall decreasing rates of both Pseudomonas aeruginosa and Staphylococcus aureus across adults and children

Looking to the future Lastly, the report looks to our colleagues in the wider CF community to comment on the future of the registry and the role it needs to play going forward. A quotation from CF Ireland’s own Rory Tallon captures this brilliantly: “The establishment of the CFRI registry has provided valuable insights on our Irish CF population’s lived experiences of CF. As an advocate I use the data summaries regularly in my CF Awareness talks and support letters. The data shows both the extent of illness in the CF population and the extent of health in the CF population and we also see from the data the huge improvements in our CF population health since the start of the registry. With good direction the registry can have the power to shed light on newly emergent health and quality of life issues arising in an increasingly ageing CF population and will continue to contribute to the European and pooled global CF population health summaries.”

We must again extend thanks to the PWCF, and parents/guardians of PWCF, who have agreed to participate in the registry over the years. Your participation and continued engagement with the registry are the reasons why we are able to present the wealth of data in this report. We also want to acknowledge the foresight of CF Ireland in the initial establishment of the registry - from an acorn a mighty oak has grown!

Want to get involved?

If you have any questions, would like information about participating in the registry, or to give your consent, please contact your CF Centre or the CF Registry at info@ cfri.ie. Participation is entirely voluntary. You are free to revoke your consent and withdraw from the registry at any time. We would love if you could follow us on social media. We post updates on our work and on the exciting projects we are working on.

Use the QR code to access all our social media channels.

www.cfireland.ie

29

CHARITY Charity OF of THE theYEAR Year Encourage your employer to select Cystic Fibrosis Ireland as their Charity of The Year

A

s companies look at who they are going to select as their Charity of The Year for 2024, why not ask your employer or friends and family to nominate Cystic Fibrosis Ireland with their employer (CFI). We can provide you with support information about CFI and our work as required or visit your employer to outline to them how their support will help fund key supports and services for people with cystic fibrosis (PWCF) in Ireland.

Ways your company and work colleagues can support Cystic Fibrosis Ireland …

Charity of the Year (COTY) The easiest and most recognised way your company can provide support to CFI whilst meeting their own Corporate Social Responsibility expectations would be to select Cystic Fibrosis Ireland as their COTY. Many companies allow their employees to nominate their COTY. If you get the opportunity, please nominate CFI as your chosen charity and encourage your colleagues to vote for us! If you need any support from CFI with the process, please give our Fundraising Team a call on 01 4962433 and we will be happy to help you with supporting materials, application forms, advice, presentations etc.

If your workplace does not have a COTY scheme in place, it may be something they are willing to consider and again we would be happy to support you if your employer would like more information about CFI and the work we do.

The following activities would normally form part of the COTY partnership, but they can also be something you do within your workplace during the year as stand-alone activities to raise funds and awareness to help people with cystic fibrosis in Ireland.

Corporate Sportng and Social Actvites Many companies host a variety of sports and social activities during the year which could range from coffee morning and bake sales, to sports days, quiz nights or golf days, all of which can be occasions to raise money to support the work done by CFI. These type of activities are encouraged within business as a fun way to break down barriers and to build teamwork between employees, while providing a great opportunity to raise funds and awareness to support charities.

30 32

Spectrum / Winter 2023 Spectrum / Winter 2023

35 employees from Johnson Controls Cork climbed Carrauntoohil in September 2023 and raised €14,595.73 for CFI

PWCF in Ireland need your support!

Cystc Fibrosis Ireland – Sportng Events You can support CFI with your colleagues by participating in a range of Sporting Events in 2024 either as par of a COTY programme where you work or by simply putting a team together and participating in our events with your colleagues. Full details of all events will be available on our website at www.cfireland.ie and once your enter, contact the CFI Fundraising Team and we will organise your Fundraising Pack. 2024 events will include; • • • • • • • •

65 Roses Challenges Duleek 10k / TCS London Marathon - (April) One in 1000 VHI Women’s Mini Marathon (June) Paris2Nice Cycle / Malin2Mizen Cycle4CF / Head2Head Walk / CFI International Walk (Sept) Irish Life Dublin City Marathon (Oct) TCS New York City Marathon (Nov) Christmas Jumper Day 4 CF (Dec) Overseas Treks (All Year)

You can have great fun with your work colleagues while raising much needed funds to help support provision of services to help PWCF in Ireland. Why not check also if your employer is willing to provide match funding for monies raised by their employers to support CFI. 65 Roses Day – Friday 12th April 65 Roses Day (Our National Flag Day) takes place on Friday 12th April. This is the National Fundraising Day for Cystic Fibrosis in Ireland and our volunteers will be out in force selling our emblem, our purple rose in Dunnes Stores and Shopping Centres across Ireland. If your company is looking for volunteering opportunities

www.cfireland.ie

31

4

and perhaps allows for volunteer days to support charities, then why not ask your colleagues if they would like to volunteer to help CFI on 65 Roses Day. If you and your colleagues can help us on the day, please call the CFI Fundraising Team on 01 4962433 and we will help organise to get you involved in your local collections on the day.

Corporate Sponsorship Another way your employer could help support PWCF in 2024 would be to sponsor one of the major events hosted by CFI. This could include our National Conference which takes place in Cork in March, 65 Roses Day also in April, One in 1000 VHI Women’s Mini Marathon in June or the Malin2Mizen Cycle4CF and Head2Head Walk in September.

By sponsoring our events, we can cover the costs Staff from Apple Cork preparing materials for 65 Roses Day

involved events, recruit additional involvedininorganising organising events, recruit additional participants to to generate more funds participantsallowing allowingusus generate more funds supportthe theprovision provision support services totosupport of of support andand services forPWCF PWCFininIreland.

Ireland. for

Triple Locked

Triple Locked CysticFibrosis Fibrosis Ireland delighted Cystic Ireland werewere delighted to be to be confirmedasasa aTriple TripleLocked Lockedmember member Charities confirmed ofof Charities Institute Ireland. This demonstrates to our Institute Ireland. This demonstrates to our beneficiaries and donors that CFI operates with beneficiaries and donors that operates with openness, transparency and CFI integrity by adhering openness, transparency integrity-bytransparent adhering to the Triple Lock and Standards governance. toreporting, the Triplegood Lock fundraising Standards - and transparent reporting, good fundraising and governance.

For more informaton….

MoyleRoe Corporate Services Limited main sponsor or our Head2Head Walk 2023

MoyleRoe Corporate Services Limited main sponsor or our Head2Head Walk 2023

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For more informaton….

Forsupport support any discussions with your For withwith any discussions with your employerororaapotential potentialCorporate CorporateSponsor, Sponsor,please please employer donot nothesitate hesitateto tocontact contactthe the CFI CFI Fundraising Fundraising Team Team do (01) 4962433 or email fundraising@cfireland.ie.

Spectrum / Winter 2023 Spectrum / Winter 2023

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

April 12th – 65 Roses Day Please support Cystic Fibrosis Ireland on 65 Roses Day, Friday 12th April 2024 by taking part in a 65 Roses Challenge, donating online at 65roses.ie or purchasing a purple rose in Dunnes Stores, and other participating outlets nationwide.

65 Roses Challenge Why not set up a 65 Roses Challenge to help people with Cystic Fibrosis as part of the 65 Roses Day campaign? A 65 Roses Challenge can be any challenge with a 65 theme. It could be a 6.5k walk or run, 65,000 steps or a 65km cycle, etc.

All you have to do is click onto our 65 Roses Day website at 65roses.ie and this will give you some examples of the wonderful 65 Roses Challenges from 2023 and guide you through how to set up your Just Giving Page to start your challenge.

Enjoy your challenge and don’t forget to share it on your Social Media to get maximum support #65Roses2024!

For your fundraising pack so that you can complete your challenge in your purple Cystic Fibrosis Ireland shirt, don’t forget to email fundraising@cfireland.ie

Donate Online If you are not in a position to set up a 65 Roses Challenge for 65 Roses Day, you can also support our largest fundraising campaign of the year by donating online at 65roses.ie.

Buy A Purple Rose Our volunteers will be out in force on 65 Roses Day, Friday, 12th April and you can buy a purple rose in Dunnes Stores and other participating outlets in your area. If you would like to volunteer to help on the day, please register for a store on our website at www.cfireland.ie, call us at (01) 4962433 or email fundraising@cfireland.ie.

www.cfireland.ie

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April 21st – TCS London Marathon The London Marathon is one of the most iconic and globally renowned marathons in the world and takes place on Sunday, 21st April.

Unfortunately places are now all sold out with our partner Sports Travel, but If you have your own race entry and would like to raise funds for Cystic Fibrosis Ireland, register your interest now at www.cfireland.ie to get started on your fundraising journey and we will contact you to confirm next steps.

If you would like any further information please register your interest on our website at www.cfireland.ie, email fundraising@cfireland or call (01) 496 2433.

April 28th – Duleek 10k Remembrance Walk / Run Cystic Fibrosis Ireland and all of the team at the Duleek 10k are delighted to announce the 12th Annual Duleek 10k will take place on Sunday 28th April. Register now at www.cfireland.ie.

This Duleek 10k is aimed at people of all fitness levels and you can walk or run your 10k. The event was set up to remember and celebrate the lives of cousins Cathy O'Brien and Kelley Noone and all friends and families touched by Cystic Fibrosis.

For further details please visit our website or email fundraising@ cfireland or Ann Noone at duleekcf10@gmail.com.

June 2nd – Vhi Women’s Mini Marathon / One in 1000 The Vhi Women’s Mini Marathon takes place on Sunday, 2nd June. Why not become One in 1000 taking part in this very special event for Cystic Fibrosis Ireland? This is the largest outdoor women’s event in Europe and every year over the past 10 years, 1,000 women have participated in their purple Cystic Fibrosis Ireland shirts representing Cystic Fibrosis Ireland.

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Spectrum / Winter 2023

Join us on the June bank holiday weekend in our base at the D2 Harcourt hotel where you can relax before the start of the 10k and drop off your belongings, get your photo taken and collect some goodies to get you through the 10k. When you return afterwards, we will have the music ready and food / refreshments so you can relax with your friends.

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

September 6th to 12th – Paris2Nice Cycle Registration is now open at www.cfireland.ie for the Paris2Nice Cycle which leaves Paris on Friday, 6th September arriving in Nice on Thursday, 12th September. REGISTER NOW at www.cfireland.ie to secure your place.

This is a really well organised event with limited places available which are highly sought after. An information evening is being held for anyone that would like to find out more about this event in January. Keep an eye out on our socials for further information regarding the information evening.

For further details visit our website at www.cfireland.ie, call us on 01 4962433 or email fundraising@cfireland.ie.

September 8th – Head2Head Walk We so excited about our 12th Annual Head2Head Walk which takes place on Sunday, 8th September. This fabulous walk along the sea front from Howth Head to Bray Head goes from strength to strength, thanks to the wonderful organisation of the event by the Head2Head Walk Committee led Jem & Lorraine Downes, Glen McDonnell, Mary McCarroll and Luke Kennedy.

You can avail of our Early Bird discount by REGISTERING NOW at www.cfireland.ie. For further details, call us on 01 4962433 or email fundraising@cfireland.ie.

www.cfireland.ie

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September 12th to 15th – Malin2Mizen Cycle4CF We are absolutely delighted to announce that our Annual Malin2Mizen Cycle4CF will take place on Thursday 12th to Sunday 15th of September 2023. There has been a huge interest in the event so far so please ensure to register as soon as possible on our website at www.cfireland.ie to secure your place.

Malin2Mizen Cycle4CF will begin at Malin Head in Co. Donegal on Thursday 12th September and will finish in Mizen Head in Co. Cork on Sunday 15th, September. The event requires plenty of training as we will be covering an incredible 640km in 4 days! You can register for our 2024 cycle on our website at www.cfireland.ie. For further information please call us at (01) 496 2433 or email fundraising@cfireland.ie.

September 17th to 24th – CFI International Walk in Andalucia We are delighted to invite you to be a part of Cystic Fibrosis Ireland's 30th Annual International Walk Andalucia: Grazalema & Mijas, from September 17th to 24th, 2024.

Join us on this transformative adventure as we explore southern Spain, flying from Dublin to Malaga. Our journey begins in Grazalema's UNESCO Biosphere Reserve, traversing picturesque Pueblos Blancos.

Experience the beauty of Ronda's old town, the charm of Mijas, and the historical gems of Malaga. Contribute to the feeling of camaraderie and solidarity as you take in the unforgettable sights. Step into the journey and explore, all while making a positive impact for people with CF and their families.

For registration and further information, please see our website www.cfireland.ie, contact us on ( 01) 496 2433 or email fundraising@cfireland.ie.

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October 27th - Irish Life Dublin Marathon Cystic Fibrosis Ireland are delighted to announce that we have secured 10 guaranteed places in the Irish Life Dublin Marathon which takes placed on Sunday, 27th October and invite you to join our team.

As part of the Cystic Fibrosis Ireland Team in the Irish Life Dublin Marathon 2024 you get: 1. A Guaranteed Marathon Entry: Skip the lottery; we've reserved spots for our dedicated runners.

2. Personalised Fundraising Support: Tools, tips, and assistance to make your fundraising journey successful.

3. Exclusive Gear: Branded running shirt and exciting gear to proudly represent our cause.

If you would like to take part on behalf of Cystic Fibrosis Ireland, register your interest on our website at www.cfireland.ie to secure your place.

For further information please email fundraising@ cfireland or call (01) 496 2433.

November 3rd - TCS New York City Marathon Another hugely popular event, the New York City Marathon and is one of the world’s greatest participatory events. For anyone who takes part it is always an unforgettable experience. The Marathon on November 3rd runs through all five city boroughs (Staten Island, Brooklyn, Queens, The Bronx and Manhattan).

Again we can provide you with a guaranteed place if you book your trip with Cystic Fibrosis Ireland. Places are limited so register your interest to take place now on our website at www.cfireland.ie and we will contact you to confirm next steps as soon as details for this year’s event are confirmed.

If you would like any further information please email fundraising@cfireland or call (01) 496 2433.

www.cfireland.ie

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December 6th: Christmas Jumper Day 4 CF Friday, 6th December 2024 will see the return of Christmas Jumper Day 4 CF. We are encouraging as many workplaces and schools as possible to wear your Christmas Jumper to school or work on the day in support of Cystic Fibrosis Ireland.

For further information visit our website at www.cfireland.ie, email fundraising@cfireland.ie or call (01) 496 2433.

All Year Round: International Treks For the really adventurous looking for the challenge of a lifetime in 2024, International Treks are available across the year to climb Kilimanjaro, Machu Picchu and Everest Base Camp.

Register your interest to take part on our website www.cfireland.ie or email fundraising@cfireland.ie for more information.

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FUNDRAISING: Thank You It is not possible to list all of the Fundraising Events that have been organised since our last edition of Spectrum, but we would like to take this opportunity to thank everyone that has volunteered and raised money on behalf of people with Cystic Fibrosis. Every cent raised helps provide a better quality of life for people with Cystic Fibrosis and please keep up the great work. Here is a short summary of some of the remarkable efforts of our Volunteers:

Malin2Mizen Cycle4CF Huge congratulations to everyone involved in Malin2Mizen Cycle4CF 2023 which raised an unbelievable €162,946 with a cheque presented to the Cycle Committee in the Ard Ri House in Tuam yesterday.

An incredible total of €914,000 has been raised by the Malin2Mizen Cycle4CF since the first cycle was set up in memory of Triona Priestley in 2015.

Total funds raised are set to exceed €1m from the cycle in 2024, which is a huge tribute to the Chairperson of the Malin2Mizen Cycle4CF committee and CFI Chairperson – Bernie Priestley and everyone else involved in this event over the past 10 years either as a member of the committee, cyclist or support team.

Registration is now open for our Malin2Mizen Cycle4CF 2024 cycle which takes place from Thursday 12th to Sunday 15th, September at www.cfireland.ie.

www.cfireland.ie

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CFI International Walk A huge thank you to Bernie Murphy, Vinnie O’Malley and all our amazing walkers who raised a massive total of €127,191.95 from our CFI International Walk organised with Sunway Holidays in Malta this year. Bernie and Vinnie were back in CF House for a meeting of the CFI International Walk Committee after the walk to get the planning underway for the CFI International Walk 2024 in Andalusia.

They also presented a cheque to Fergal in CF House, pictured here.

It is an all year-round effort by Bernie and Vinnie organising the walk each year and from all the walkers, fundraising over €100,000 for Cystic Fibrosis Ireland each year. Truly amazing from this outstanding group of walkers!

Keep an eye on our website and social media channels over the coming weeks for more info on Andalusia in 2024 if you have any questions drop Hazel an email at hdoran@cfireland.ie or call 01 496 2433.

Irish Life Dublin Marathon Thank you to everyone who supported Cystic Fibrosis Ireland over the October Bank Holiday Weekend by taking part in the Irish Life Dublin Marathon! Well done on smashing your goals as well as all the amazing fundraising. We hope you have recovered well at this stage!

Pictured here is our very own Malin2Mizen Cycle4CF cyclist, Keith Wallace, at the 2023 Irish Life Dublin Marathon. Don’t forget we have 10 guaranteed places available for the Irish Life Dublin Marathon 2024, you'll find details in our events section.

CIBSE Cystic Fibrosis Ireland would like to say a huge thank you to Chartered Institute of Building Services Engineers (CIBSE) who selected Cystic Fibrosis Ireland as the nominated charity for their annual Christmas lunch which took place on Friday, 1st December in Croke Park.

Pictured here presenting a cheque for €7,500 is Stephen Weir, CIBSE Ireland Chairperson to Fergal Smyth, Fundraising Manager, CFI.

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Johnson Controls A huge thank you to the 35 employees from Johnson Controls in Cork who climbed Carrauntoohil on September 2nd for Cystic Fibrosis Ireland, raising an amazing €14,595.73 Many of the participants in the fundraiser were present for the cheque presentation in Johnson Controls to Fergal from CFI on the 25th October, alongside with their work colleague Priscilla Carroll and her son Lucas (PWCF).

Apple Cork A massive thank you to John O'Connor and everyone in Apple Cork for packing 1000 boxes for us today for 65 Roses Day as part of their staff work for their chosen charity.

Also many thanks to Watermark Cards for delivering, collecting and storing the materials for us for 65 Roses Day 2024.

Malin to Mizen Solo Walk Many thanks to Iris Murphy who undertook the massive challenge of walking Malin Head to Mizen Head solo for Cystic Fibrosis Ireland, raising an incredible €13,500!

Iris is pictured here with Liam Brennan, Riverstown; Mary Dillon, Treasurer; Emer Carty, Assistant Treasurer and Councillor Martin Baker, Riverstown.

www.cfireland.ie

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CFI FUNDRAISING CALENDAR OF EVENTS APRIL FRIDAY, 12TH APRIL: 65 ROSES DAY SUNDAY, 21ST APRIL: TCS LONDON MARATHON SUNDAY, 28TH APRIL: DULEEK 10K

FOR 2024

JUNE SUNDAY, 2ND JUNE: ‘ONE IN 1000’ VHI WOMEN’S MINI MARATHON

SEPTEMBER

FRIDAY, 6TH - THURSDAY, 12TH SEPTEMBER: PARIS2NICE CYCLE SUNDAY, 8TH SEPTEMBER: HEAD2HEAD WALK THURSDAY, 12TH - SUNDAY, 15TH SEPTEMBER: MALIN2MIZEN CYCLE4CF TUESDAY, 17TH - TUESDAY 24TH, SEPTEMBER: CFI INTERNATIONAL WALK

OCTOBER

SUNDAY, 27TH OCTOBER: IRISH LIFE DUBLIN MARATHON

NOVEMBER

SUNDAY, 3RD NOVEMBER: TCS NEW YORK CITY MARATHON

DECEMBER

FRIDAY, 6TH DECEMBER: CHRISTMAS JUMPER DAY 4 CF

ALL YEAR

INTERNATIONAL TREKS – KILIMANJARO, MACHU PICCHU, EVEREST BASE CAMP

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FOR MORE INFORMATION CONTACT FUNDRAISING@CFIRELAND.IE

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