Winter Spectrum 2022

SPECTRUM Winter 2022

All we want for Christmas....

www.cfireland.ie

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CONTENTS Latest News | 1-2 * Kaftrio 35 * Soft Opt Out * Organ donation and tranplant progress * Conference 2023

Member Services | 3-6 * New Year, New Possibilities * Flu Vaccine * 2023 Conference

CEO’s Message

Seasons greetings towards a happy and more peaceful 2023 Philip Watt, Chief Executive

Kaftrio

* On the path to my forever home

It's been a rollercoaster year for people with CF and their families in many respects. In May, the HSE approved Kaftrio for 130 children with CF aged 6-11. However a contract row between the HSE and Vertex left 35 children out in the cold. CFI is urging that this dispute is resolved in January, following on from agreement by both parties for a Health Technology Assessment (HTA). CFI remains cautiously optimistic there is now a path to a positive resolution of this cruel dispute. However, we also remain ready for further advocacy if there are further delays.

* The International Walk 2022 by Debbie McCarthy

Transplant and Organ Donation Progress

* Upcoming Events & Webinars

Being a CFI Ambassador | 7 * Chris Coburn

Spotlight | 8-15

CFRI | 16-18 * Key Messages from the CFI patient survey '21

Teen Titans | 19 * Limerick Swim Club

Research News| 20-21 * Top Ten Research Priorities of the CF Community

Charity of the Year | 22-23 * Charity of the Year - CFI

There are over 100 people with CF who are post double lung transplant. Some are also waiting for a kidney transplant.

A new CF transplant model of care, launched in November of this year, offers an ambition and framework for pre and post-transplant CF care, replacing a system of gaps and weaknesses. A post transplant CF consultant in the Mater Hospital will shortly be appointed we understand.

It is therefore timely that the Government has approved the first stage of the Human Tissue Bill that will improve the organ donor consent protocol in Ireland from opt in to soft opt out. Adequate resourcing of this new system is essential.

We wish all our members and supporters a wonderful 2023 and thank you for all your work and support in 2022.

Fundraising| 24-33 * Challenges and Events * Thank You EDITORS :

Samantha Byrne & Nicola Delaney Foxe

FRONT COVER: CF House with the Support the Kaftrio banner in place

Philip Watt, CEO, CFI

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

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LATEST NEWS Kaftrio 35 The HSE has confirmed the Health Technology Assessment for the Kaftrio 35 will be given ‘priority’. Vertex have confirmed to CFI that their dossier to inform the HTA will be submitted before the end of December 2022. CFI urges the process to be completed before the end of January 2023. CFI has written to the Joint Oireachtas Committee on Health for an urgent meeting in January.

CFI will make a patient group submission to the NCPE including outcomes from a survey (latter to be circulated before Christmas). There remains major gaps and weaknesses in the drug reimbursement system in Ireland including the failure to establish the National Medicines Agency promised in the Programme for Government.

For most comprehensive/recent analysis of the Kaftrio 35 dispute visit the Claire Byrne Show on RTE 1.

Soft Opt Out Organ donor consent Changing the organ donor consent system in Ireland has long been an ambition of CFI working with our colleagues in the Irish Donor network (IDN). The first stage of the legislative process to enact this change was agreed by the Cabinet in recent weeks. There will be a feature on this in the next issue of Spectrum.

www.cfireland.ie

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Organ donation and transplant progress Legislation On November 29th, Cabinet approval was given for the first stage of Human Tissue (Transplantation, PostMortem, Anatomical Examination and Public Display) Bill. This Bill will change organ donor consent from opt in to soft opt out. The composite Bill will, for the first time, provide a national legislative framework for operating donation and transplant services in Ireland.

Post-transplant CF Consultant for the Mater The HSE approved the appointment of a Cystic Fibrosis Consultant at the Mater Hospital to look after People with Cystic Fibrosis post transplantation. That Consultant will be able to prescribe CF Modifier Drugs in line with HSE protocols. CFI will continue to urge this appointment as soon as possible as it has been a policy priority for us.

CF Transplant Model of Care Launched in RCPI in November 24th, 2022, this is an important addition to the overall CF Model of Care launched in 2019. There are 2 pathways identified for post-transplant care. For those in the greater Leinster area their main centre of post-transplant care will be the Mater Hospital with the welcome addition of the forthcoming consultant (see above). A shared/hybrid model will apply to those outside the Leinster area.

Conference 2023

We would be delighted if you could join us for our

60th Anniversary Conference Dunboyne Castle March 31st - April 1st 1963

2023

The invite to the CFI Conference in the Dunboyne Hotel and Spa will be issued shortly. It will take place between 31st March and 1st April 2023 in Dunboyne Castle. The 2022 AGM will in on 1st April 2023.

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MEMBER SERVICES

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New Year, New Possibilities

e are looking into a new year and with each new day comes new possibilities. Whether that is returning to education, starting a new job, renewed focus on self-care, letting go of the year just gone or gearing up for the next year to come.

For PwCF, reaching for new heights may have extra challenges entwined. Maybe you had to take an exam while in hospital or needed extra time to make that deadline in work due to treatment burden. Did you have a moutain of extra paper work for an application due to your CF, or did you find your usual physio routine more challenging than usual?

Whatever you overcame in 2022, whatever big or small win you had, we would like to say well done. It is not always easy but you did it!

So congratulations to all our members for making progress, achieving milestones and making those dreams come true in 2022.

To kick start 2023, we are working on the CFI calendar of events (page 6). Whatever your goals are for 2023, CFI Member Services team are here to support our members, offer advice, information and help you achieve your goals, and if you have an idea for an event or would like to learn more about a particular topic or issue, please let us know. Call 01-496 2433 or visit our website www.cfireland.ie.

Mary Hennessy PWCF from Limerick who followed her dreams and completed her nursing degree in Scotland November 2022

If you have any questions or concerns around any of the topics in the Member Services' Section, please get in touch with our Member Services

Sam Byrne sbyrne@cfireland.ie

www.cfireland.ie

Rory Tallon rtallon@cfireland.ie

Caroline Heffernan cheffernan@cfireland.ie

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It's Flu Vaccine time 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 produc anitbodies (proteins that fight infection) and protects against the 4 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.

What vaccines are available this flu season?

The 2022/2023 HSE seasonal flu vaccination programme will offer 3 vaccines: • the Quadrivalent Influenza Vaccine (split virion, inactivated) manufactured by Sanofi Pasteur for • people with long term conditions and people aged 65 years and older • Influvac Tetra, manufactured by Mylan for people with long term conditions and people aged 65 years and older • the Fluenz Tetra nasal spray suspension Influenza vaccine (live attenuated, nasal) manufactured by AstraZeneca AB for children aged 2-17 years

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

People with CF are regarded among vulnerable groups eligible for free flu vaccination. You can get your flu vaccine for free now at your GP or your pharmacist. Also speak to your CF clinic, they may be able to give you the flu vaccine too. Any household members living with a person with CF are also eligible to get the flu vaccine but may have to pay privately for this – it costs €30 for flu vaccination if you do need to pay privately.

What is the Pneumoncoccal Vaccine?

If you are 65 or older or have 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. You can get this vaccine on the same day as the flu vaccine.

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 information related to boosters.

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We would be delighted if you could join us for our

60th Anniversary Conference Dunboyne Castle March 31st - April 1st 1963

2023

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e are delighted to bring you the CFI Annual Conference 2023, taking place from March 31st to April 1st.

This is a particularly special conference as we will be celebrating 60 years of Cystic Fibrosis Ireland. In addition, having had necessary restrictions in place for the last two years, we are excited that the 2023 conference will also be taking place in person and will feature hybrid access for some presentations.

Our line-up of speakers, as always, will be interesting and informative while being accessible to everyone. 2023's line up will include Professors John Moore and Cherie Miller and many more. Keep an eye on our social channels and website for updates as they are announced.

This return to the in-person conference will take place in the luxurious Dunboyne Castle.

There will be an allocation of rooms for the CFI members and details and pricing will be announced early in the new year.

If you have any questions or queries relating to the conference, please don't hesitate to get in touch on info@cfireland.ie or phone 01 496 2433, or visit the latest news section of our website for updates.

www.cfireland.ie

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Upcoming Online Events 6th December 2022 - Superbugs Series #1 19th January 2023 - Healthy Eating for PwCF 24th January 2023 - Superbugs Series #2 21st February 2023 - Superbugs Series #3

1st April 2023 - Superbugs Series #4 live from the 2023 CFI Conference

2nd April 2023 - CFI AGM For more information and booking, contact info@cfireland.ie

Our Christmas gift to our members to close 2022 is a new schedule of online events.

The first event in the schedule took place on the 6th December and was also the first webinar in the current “Superbug Series”. This event focused on questions that the CFI community had asked in relation to bacteria associated with infection in CF and focused on incidence, antibiotic resistance, presence in the environment, sources of bacteria, risk of infection and changing trends.

The webinar was heavily subscribed and we were delighted to see so many of our members joined for the evening. If you missed it, you can watch the recording in the 'Videos' section of our website.. For information on how to register for future events, visit the Latest News section of our website, www.cfireland.ie, or contact us on info@cfireland.ie or 01 496 2433.

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Being a CFI Ambassador

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ach year, Cystic Fibrosis Ireland carry out numerous awareness, advocacy and fundraising campaigns. Patient 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? Chris Coburn, CF Ambassador and PWCF shares his experience with you here...

Tell us a little about yourself....

My Name is Chris Coburn I’m 30 years old and I work as a full-time strength and conditioning coach. I am also setting up a coaching academy in Dublin in January to train in new personal trainers in order to improve the quality of trainers in Dublin.

Why did you become a CF Ambassador?

I did it to help spread positive stories about CF so that people know that it’s not all doom and gloom around the illness. I wanted to be able to show parents of young children with CF what is possible for their children to do and to try inspire the children themselves to not let their CF take over their whole lives.

How did you become a CF Ambassador?

I became an Ambassador in early 2022 when CF Ireland asked me would I be interested in telling my story. I said I would as it shows that there is light at the end of the tunnel with CF. I completed an Ambassador Application form, from that my bio was written for me to change or approve and once that was done, CFI could use it to give to the media and all I had to do was wait for opportunities to tell my story came up.

What is expected of you as an Ambassador?

So far, I have done a couple of interviews and social media activity relating to CF. It takes very little - the interviews were about 20 minutes each and the social media stuff takes no time at all.

How does being a CF Ambassador impact you?

It’s a very rewarding experience. I have got quite a few messages from parents of children with CF saying that they showed their child my interviews and videos and they helped them fell more positive about their CF.

Would you encourage others to become CF Ambassadors?

Absolutely, It doesn’t take much time and if you can help even one person feel better about their CF then it’s 100% worth it!

To follow Chris's CF and lifestyle journey, follow his Insgram page - chris.coburn.91.

CFI are currently recruiting for Ambassadors for 2023. If you would like to know more contact Nicola on ndelaneyfoxe@cfireland.ie www.cfireland.ie

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SPOTLIGHT

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On the Path to a Forever Home

he decision to buy a house is a major one and may come at a time in your life when you feel ready to put down some roots or make an investment for your future. The process is arduous and lengthy from making that initial decision to getting the keys. But for a person with CF, this process is further complicated by the consideration of a life long and unpredictable condition which may make the financial institutions unsure about approving an application from a PwCF. However, this is not always the case. Aine Stafford tells her story of her journey to securing a mortgage protection policy, the foundations of being able to search for her forever home.

I always remember when I was a young child drawing pictures of the house I would love to own and live in when I got older. I never thought of the long and difficult battle I would face when trying to buy a house of my own.

I always thought I would work hard, go to college become a teacher (as that is what I always wanted to be from a young age), save up and buy my own house.

If only it were that straight forward.

I was born in South Tipperary General Hospital in Clonmel. However, my stay here was very short-lived as within an hour of being born I was transferred first to Waterford hospital and then straight onto Crumlin Hospital in Dublin, where I spent the first 3 months of my life.

I had two life-saving surgeries in my first few weeks of life. One at only 6 days old and the second at 5 weeks. A week after my second surgery, at just six weeks old, it was confirmed for my parents that my life would always be a little different than my older sister’s when I was diagnosed with Cystic Fibrosis.

Growing up, I never dwelled on this difference and liked to think of myself as like ‘everyone else’. Although I had a life-long illness I tried my best not to let it get in the way of what I wanted to achieve in life. I always seemed to have a lot of plates spinning. From hospital appointments to hospital admissions, maintaining a healthy balance between my studies and a social life was made all the more difficult when I was constantly chasing my tail trying to catch up on schoolwork from classes I had missed, or just trying to keep on top of my daily medications and routines.

Although it was difficult, I was determined not to let anything hold me back from achieving my dream. I worked hard and was successful in obtaining

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Living life as a PWCF: On the path to my forever home enough points to be accepted into Mary Immaculate College to complete my Bachelor of Education degree.

Receiving my acceptance letter was a dream come true, and it further solidified my determination and self-belief.

My four years in MIC definitely weren’t a walk in the park, but I had very supportive friends, family, lecturers, and of course my Cystic Fibrosis team in Limerick Regional Hospital, who were always incredibly accommodating and ensured my appointments weren’t scheduled when I had lectures.

Upon graduation of the B.Ed., the next challenge that I faced was figuring out how to manage my Cystic Fibrosis as a teacher. At times it has been a struggle and I have spent many nights in hospital correcting stacks of copies and preparing for lessons to in order to try and keep on top of everything. I was fortunate enough to secure a permanent job in Scoil Mhuire Newcastle just a year after graduation. Obtaining this job was such a significant milestone. I was also following in my mother’s footsteps to the extent of teaching in the school that she herself had taught in for 37 years.

2020 was a huge milestone year for my teaching career. I became a permanent member of the staff in Scoil Mhuire Newcastle and obtained an Assistant Principal 2 post in the school.

My partner and I also began renting and living together in 2020 which was another personal milestone. This brought independence not only as an adult but as a person with Cystic Fibrosis. I was now completely responsible for my own medical needs, something my parents would have always helped me with before.

In 2021 my partner and I began to discuss and investigate the process of buying a house. We never imagined how grueling a process it would be. I was very naïve when we began the process and never thought about how difficult it might be for a person with Cystic Fibrosis to buy a house.

We met with a lady in our local bank to chat about how to begin the process and I left the meeting feeling quite deflated. It was the first time I realized that in order to buy a house you obviously have to have [mortgage protection] life insurance and it was quite clear how difficult that would be for me. I went home feeling so upset but I am not one to give up easily, so I began to research it extensively. I contacted Cystic Fibrosis Ireland who were so kind and helpful on the phone. I spoke to other people who found getting life insurance difficult and did a lot of my own research.

www.cfireland.ie

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The best thing I decided to do was to approach a mortgage advisor. My partner and I met with our mortgage advisor and the process began then. I was not about to let my dream of owning a house slip away, I was willing to do anything I needed to do in order to secure life insurance.

My mortgage advisor and I began to apply for life insurance in February 2022. We applied to five different insurance companies. I filled out all the paperwork and I hoped and prayed that one of these applications would be successful. A few weeks later my mortgage advisor rang me to say three companies had rejected my application. I was absolutely devastated my mind instantly thought what happens if the other two reject my application also. I knew that if I couldn’t secure life insurance, I had two options. Option one would be that my partner and I would buy a house based solely on his salary and the mortgage would be in his name.

The second option would have been to ask the bank we were borrowing from to sign a wavier, to say if I passed away our mortgage wouldn’t be paid off.

As I said I never liked to think of myself as different to everyone else, but this harsh reality I was facing made me think about how I was. It made me consider things I had never thought about before. That although I had worked so hard in college to become a teacher and secure a permanent job and even secure an assistant principal position, it didn’t matter in the eyes of a bank when it came to buying a house. I had Cystic Fibrosis therefore I mightn’t get life insurance. This brought up a lot of different emotions for me guilt, sadness, frustration and anger.

My mortgage advisor contacted me to say that the other two insurance companies wanted more information. I knew these two companies were my last chance. I contacted my Cystic Fibrosis team in Limerick and they wrote me a letter to say I was in good health at the moment and gave recent figures of my latest x-rays and lung function tests etc. I had also to contact my GP as the insurance companies wanted details of my history and files from my GP. My GP told me they would show me all of my notes, history and files, that they would then send to the insurance companies.

I went to collect this envelope and I was shocked as the size of this parcel.

There were between 200-300 pages of notes dating from 1995 the year I was born all the way to 2021. I spent hours reading through each of these files. I handed them back to the GP’s and they sent them to the insurance companies. At this stage I wasn’t very hopeful as I thought no insurance company is going to insure me when they see the sheer volume of my file.

On the 28th of March 2022 I received an email from my mortgage advisor to say that the insurance company had issued acceptance terms. The relief and joy I felt in that

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moment was indescribable. I couldn’t believe I had secured life insurance, I was completely overwhelmed.

The process was extremely difficult, but I was so grateful to my amazing supportive partner who reassured me throughout it all that no matter what happened it would be okay and we would work it out. My parents and my older sister who have always been in my corner from day one, helping me through any and every challenge I face and giving me the courage to keep going, and of course the brilliant team at FOH Financial Advisors in Clonmel, Biddy Purcell and Noreen O’ Loughlin whom I would never have secured life insurance without them working tirelessly to help my partner and I. We are now trying to find our forever home, however hard it is or it gets I always remind myself how lucky I am to be in the position where I can look for a life- long home as it wasn’t always a guarantee, for a while I thought it might not be possible at all.

I am really hopeful for what the future will hold for my partner and I, and I know it will be one of the greatest feelings when we finally get the keys to our own house.

Helpful Resources CFI are delighted that Aine successfully obtained mortgage protection insurance and wish Aine and her partner all the best for the future.

For others who are on this path, it may be worth approaching several insurers as Aine and her partner did. Each application will be considered individually, on a case-by-case basis. If no offer is made and three refusals have been received in writing, there is also be an option to sign a waiver to this legal requirement.

Further mortgage information is available on our Housing webinar, available on our website.

As Aine suggests, the advice of an independent financial advisor is recommended. If you do not know of one, Tom O’Neill of BlueChair Finanacial Planning has successfully helped other PWCF through mortgage applications.

You can also visit Citizens Information for more info or the Competition and Consumer Protection Committee for general information on mortgages.

www.cfireland.ie

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SPOTLIGHT

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Jerry Weldon Memorial walk in Madeira

fter a 2-year break, all walkers were really looking forward to Madeira 2022. This year’s International Walk was in memory of former walker Jerry Weldon, and we were privileged to have Jerry’s daughter and son walk with us and listen to many fond stories of previous walks that Jerry had participated in to fund raise for Cystic Fibrosis.

After meeting in Dublin Airport, a wave of purple or yellow CF t-shirts, not forgetting the Irish tricolor backpacks, boarded our plane ready to start our long-awaited walk. Our flight went smoothly until a few bumps on landing - Funchal Airport landing strip, has the distinction of being very short, 3rd most dangerous in Europe and crews require extra training to land here!! But we arrived safely and headed to our hotel ‘Four Views Baia’

Monday After an early wake up call, we got to see Funchal, the capital city of Madeira. Our walk bought us to the famous Cable Cars. The views here are breathtaking as we soar 560 meters above sea level. Funchal has steep hills and narrow cobbled streets, so this was the perfect way to see all across the Bay, the Marina, and the Waterfront, right up to the lush hills, mountains, valleys and ravines. There was a cruise ship docked for the day so tourist areas were very busy.

After queuing for awhile we descended down the hills on toboggan in traditional basket sledges. These rides are each steered by 2 men in traditional white uniforms and very thick soled shoes. Much shrieks and laughter later and we all arrived down safely. Great photos were snapped, in fact the photo of the week was taken by Robert Weldon and showed a number of walkers rushing down the narrow streets in these baskets.

From here we continued our walk to the old town, where we visited a local farmers market. Madeira is famous for its fresh fruits, vegetables, fish and flower markets and this particular market has been running since 1940.

From here we walked through the long narrow cobbled streets to the 15th century Cathedral of Our lady of the Assumption. Our guide Louisa left us free for lunch with advice over our headphones about local cafes, restaurants etc. and minding all the red lights on the many traffic lights in the area!!

After a filling lunch, we lit some candles in the Cathedral

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The International Walk 'Madeira 2022'

by Debbie McCarthy for our intentions back home. We continued our walk to the Blandys Wine Lodge. After visiting the wine cellars, it would have been rude not to taste some samples, this is a very sweet wine it was more like a sherry. We finished our walk along more cobblestone streets and made it back to the hotel for a quick swim. Dinner this evening was buffet style with an abundance of fresh produce finished off with delicious desserts and cheeses. Our annual table quiz was tonight’s entertainment. Hosted by Claire and Cathy. We had 2 teams placed joint first but special mention to my team who came second. Fiona, Ann Marie, Ben and myself who bluffed our way to be placed!

There was also a birthday cake tonight for my roommate Phil. After a night cap it was early to bed for an early wake up call at 7.15 tomorrow.

Tuesday First thing was a group photo of us all in our purple t-shirts and we headed to Machico to walk Levada dos Marcos.

Walking along a Levada is one of the main tourist attractions in Madeira Island. The ‘Levada’ are channels of water with a gentle slope originally created to transport water from the north of the island.

Nowadays the Levadas are a way to discover and follow the magnificent nature trails. Our walk had the Levada to our left and with the sound of babbling waters and fabulous views we hiked away. The ledges are quite narrow in places, so single file and concentration was needed. No cars or any other walkers, just our group heading one way through this fabulous scenery. Flat fertile land is scarce here so there were many patches of land between the tracks and steep drops used to plant vegetables etc.

Our walk was through lush valleys with wonderful views including little homes perched precariously on steep slopes. The flower lined ravine winding through cultivated terraces certainly built up a thirst and appetite.

On reaching the village we tried the local Poncha, a traditional alcoholic drink made from distilled alcohol from sugar cane, honey, sugar and orange juice. We also sampled some Pasteis de Nata which are Portuguese custard tarts. After returning from Machico, we walked from CR7 museum (Cristiano Ronaldo lives very near by when not playing soccer abroad). Lots of posing by his statues before following the promenade, lunch and returning to hotel. Make sure to have the right hotel name on Google maps as there are three 'Four Views' in Funchal. Tonight, we were entertained by a very colourful local folk group, who encouraged some of the walkers to join them on the dance floor. As per usual Teresa was first on the floor. The hotel DJ took over and we all danced the night away.

www.cfireland.ie

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Wednesday Another 7.30 wake up call and we set off for a Funchal Lido Walk. Lined with palm trees and spectacular botanical gardens, this promenade links the Lido area to the pebbled Formosa beach. Very popular with locals and tourists alike, great views over the sea and Funchal town. Lots of local green areas and plenty of artistic sculptures and statues along the way. After lunch by the Forte de Sao Tiage (an old fort still in great shape). We walked through the Rua de Santa Maria. This is a narrow street in downtown Funchal. Until 2010, this was an old narrow cobbled street like many others. A local photographer named Jose could see the potential and wanted to bring life back to the area, so he started the ‘Painted Doors’ project.

This street became a Centre of Art and local artists started painting the old doors. Many more artists signed up for the project and there are now more than 200 painted doors on the street and surrounding area. Many new restaurants and cafes opened up and the street has a vibrant atmosphere and a public gallery for everyone to see and appreciate. Tonight, we put on our glad rags and dined in a local Funchal restaurant. The 2022 Honorary Walker was announced as Betty Mahon. A very deserving winner, Betty made headlines doing a parachute jump for Cystic Fibrosis and was presented with a beautiful canvas of the day. Well done, Betty. Last night we danced tonight we ended with a singsong.

Thursday Early morning wake up calls will kill me before the walks ever will!

This morning we checked out of our hotel and in our bright yellow t-shirts headed off to Calhata. On our way we stopped for a walk through banana plantations and the famous ‘Cabo Girao’ At 589 meters high these are some of the highest cliffs in Europe (the cliffs of Moher are 214m). Here we took our official group photo, and tried out the glass skywalk. This is a near vertical drop down to the raging waters of the Atlantic Ocean below.

We checked into our hotel by Calheta Beach and did a short walk of the beach and marina area. Here, Caz fell in love with a giant yacht. We also spotted a few boats moored up with Irish flags. And a fine sized yacht called ‘Jameson’ which surely had Irish connections. No sing-song tonight, but good company for our night cap, before I helped my one-armed bandit of a roommate get ready, lots of banter and craic.

Friday Another early start. Today's destination walk along the Levado do Alecrim. Unlike Tuesdays walk where we were constantly in the warm sun, this walk was shaded by trees a lot. 1100 meters above sea level, there was spectacular views of the valley of Rabecal. I had two favorite parts on this walk. Firstly, the ‘Levada stairs’ - very

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steep stairs leading up on the pathway while water cascades down the steep waterway next to us. Some great pictures and videos here and it felt like being next to a waterfall. I loved the noise from the fast-flowing water gushing next to us.

Secondly, at the very end of our route, before we turned back, was a small waterfall. A very scenic rest area, some natural pools and smaller waterfalls… very picturesque. Although not a very strenuous walking trail, the path had a lot of stray stones and was quite uneven and could get bumpy so concentration was needed, but lots of areas to take stunning photos of the scenery. On our way back to the hotel we stopped for another Poncha and tried local garlic pate type snacks. Here, Bernie was thanked for all the hard work on the committee and behind the scenes she does to make our walks each year such a success.

Our evening tonight was back at the hotel and tonight it was Roisin's turn for birthday cake.

Saturday Our final full day and todays walk was in a UNESCO World Heritage Site. Fanal walk in Fanal forest is very popular especially overseas hikers and photographers. These forests are full of old, twisted trees, fast moving fog that blankets the views but moves on just as fast. It was very Lord of the Rings/ Hobbitesque, where one expected something strange to appear out of the mist. On more than one occasion we had large free roaming cows sharing this eerie scenery with us. This site is of significant ecological importance because 15 – 40 million years ago much of Europe was covered by this type of Laurel Forest, now it can only be found in Madeira, the Azores, and part of the Canary Islands. Trees in Fanal Forest are over 600 years old. Each tree is twisted, windblown and crooked. The whole region is a relic of days of old, the photographs captured this until the fog and mist descended again. I enjoyed this walk as the fog shrouded over us like scenes from a movie, then lifted again revealing mystical scenery once more. Saturday evening and we had our farewell diner, each walker was presented with a certificate and mementos of Madeira. There was a presentation to Elizabeth and Robert Weldon to mark the Jerry Weldon memorial walk this year. Our final piece of business for the night was the revealing of next years walk destination. Malta and Gozo 2023 – looking forward to it already.

Sunday A not so early wake up call this morning, but a long day of travelling ahead. We did a quick walk around The Marina, unfortunately Caz yacht departed without her. The runway at Funchal Airport still looked short but we departed safely. A Facebook album full of photos of Great Walks, fabulous food, spectacular scenery, good company and unique experiences in the baskets after the cable cars. All in all, a very successful walk. Can’t wait for next year!!!

The 2023 International Walk takes place from the 19th to 26th September 2023.

Register your interest here: www.cfireland.ie

www.cfireland.ie

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The CFRI Using Data for Good

Key messages from the CFRI patient survey 2021 As the new year kicks in, we at CFRI wanted to focus somewhat on our annual patient survey. This is a really great example of how some of our data is used for good and, we hope, to contribute toward a sense of hope and a positive outlook for the CF community here in Ireland.

What is the annual CFRI patient survey?

Every year, on top of regular registry work, CFRI conduct a survey on those receiving care for CF across all hospitals in the Republic of Ireland. The survey gives us a good overall sense of the numbers of individuals receiving CF care in Irish hospitals1. More specifically, the survey helps to identify the numbers of new and existing CF patients attending hospitals for CF care, along with information about transition between hospitals.

In doing so, we can compare the total CF population with those that have consented to participate in the registry.

This means we can calculate the % coverage CFRI has of the CF population in Ireland during the given year

How do we do the patient survey?

The structure of the survey is set by the management of CFRI. We send the survey securely to the individual responsible for conducting the survey at each hospital, which is usually a senior member of nursing staff.

The individual responsible is asked to clarify details on centre attendance, patient status, pregnancies2 and on

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those taking CFTR Modulators3 . This does not require input from patients directly.

For the 2021 year, we conducted the survey at the start of 2022. We sent out an empty form to the individual centres and over the course of a few weeks, the individual responsible for filling out the survey completed the form and sent it securely back to us. The data input into the form reflects the year 2021, even though the survey is carried out in 2022. During the process, we comply with GDPR and do not store identifiable data of nonconsented individuals. The data presented below is in an aggregated and anonymised format.

What do we learn from the patient survey?

There are a few things we learn from the patient survey data: 1. We can calculate how many patients attended an Irish hospital for CF care throughout that year 2. We can identify how many patients attended 1 or more hospital in the study year 3. We can understand more about the overall CF population e.g., age and gender distribution 4. We can calculate the percentage of all CF patients who are registered with CFRI to give us an indication of how much of the CF population is covered by the registry

Key messages from the 2021 patient survey Of the 1,473 patients listed on the census in 2021, 1,308 are registered with CFRI in at least one CF centre. This means that the data collected by the registry represents nearly 89% of the CF population in Ireland (see Table 1).

There are 165 patients receiving care for CF in an Irish hospital who are not registered with CFRI (see Table 1)

Registered with CFRI Not yet registered with CFRI Total number of CF patients receiving care in Ireland

Number of Individuals 1308 165 1473

% 88.8% 11.2%

Table 1 Summary of % of individuals that received CF care in an Irish hospital in 2021

Of the patients registered with CFRI 235 received Ivacaftor, 272 received lumacaftor/ivacaftor, 76 received tezacaftor/ivacaftor, and 650 patients received elexacaftor/texacaftor/ivacaftor in 20214 . This means there was a total of 1012 CFRI consented patients prescribed a CFTR modulator in 2021, representing 77% of the registered population. There were 24 pregnancies reported in 2020/2021.

CFTRm

Patient survey items

# Registered with CFRI

Received Kalydeco™ in 2021 Received Orkambi™ in 2021

235 272

Received Symkevi™ in 2021

76

Received Kaftrio™ in 2021 Pregnant in 2020/2021

650 24

Table 2 Summary of patients receiving Kalydeco™, Orkambi™, Symkevi™, Kaftrio™, and those who fell pregnant in 2020/2021

www.cfireland.ie

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Providing a positive outlook & using data for good - what good things can we do with this information?

In the below, we highlight how we can use this data to improve the work of the registry to ultimately ensure it is doing the best possible job for the CF community in Ireland in contributing to positive change and outcomes.

Improving data quality - we can use this information to act as a ‘quality check’ for the data in the registry, making sure what we collect is of the highest quality possible e.g., ensuring that we have the most up-to-date CFTRm information for patients, or that we have correctly transitioned all patients on our database who have moved on to an adult centre in that year.

Improving coverage - we can use the data to understand our coverage is of the CF population and to identify opportunities to encourage patients to sign up/consent e.g., new babies diagnosed with CF/those patients who have transitioned from paediatric to adult care.

If you or your child are not registered with the registry, but are interested in participating, let your CF centre know. They can give you the form to fill out. You can also contact info@cfri.ie to find out more about what we do.

Ensuring compliance through re-consent – due to GDPR we require all those on the registry to sign a ‘new’ format consent form. The patient survey will allow us to check who we have this new form from and those who we don’t.

If you think you haven’t done this already, get in touch with you CF centre. They can get you signed up on the new format form.

Want to get involved?

Consent Participating in the registry has indirect benefits in terms of having better information that can help improve planning and delivery of care and services that a person with CF receives. The more people that participate, the better the quality of the information that can come out of the registry. If you would like to participate in the registry, please contact your CF Centre of 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.

Social media 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.

Get in touch Do you have any questions about participating in the registry or about the data we collect? Get in touch with us at info@cfri.ie.

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Teen Titans @

Limerick Swim Club A massive well done to this edition's 'Teen Titan's, the teens from Limerick Swim Club.

This special group of teens held a fundraiser to taise funds for their local CFI branch TLC4CF. However, they smashed their targets and raised twice the amount in the picture above.

They decided to spead the wealth and donated an equal amount to the TLC4CF branch along with the Sligo branch.

Thank you so much for thinking of us and for your fundraising efforts!

www.cfireland.ie

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Research News Top 10 Research Priorities of the CF Community Clinical research should focus on the questions which are of highest importance to people living with CF and their clinicians. The James Lind Alliance is a non-profit initiative in the UK which brings together patients, carers, and clinicians in Priority Setting Partnerships (https://www.jla.nihr.ac.uk/ ).

These partnerships identify and prioritise unanswered questions that the community agree are the most important. This ensures that health research funders are aware of the issues that matter most to the people who will use the research in their everyday lives.

In 2017, the James Lind Alliance, working with the CF Trust in the UK, brought together people living with CF, their carers, researchers and clinicians in a Priority Setting Partnership to agree on a “Top 10” list of research questions which should be prioritised for future research (https://www.questioncf.org/top-20-2017/).

Five years on the CF landscape has changed significantly and the team decided to go back to the CF community to find out what they thought the priorities for CF research should be now. The project was called Question CF (www.questioncf.org).

Over 1,600 people globally responded to the survey suggesting over 900 different questions. Through a follow-up survey and workshop the final Top 10 priorities for clinical research in CF were agreed as follows: 1. What options are available for those not able to take current CFTR modulators (including rarer mutations, not eligible and unable to tolerate)?

2. What is the best way to diagnose lung infection when there is no sputum e.g. children and those on modulators?

3. How can we relieve gastro-intestinal symptoms, such as stomach pain, bloating and nausea?

4. How do we manage an ageing population with CF? 5. Is there a way of reducing the negative effects of antibiotics e.g. resistance risk and adverse symptoms in people with CF? 6. What are the long-term effects of medications (including CFTR modulators) in CF? 7. What are the effects of modulators on systems outside the lungs such as pancreatic function, liver disease, gastrointestinal, bone density etc?

8. What are the effective ways of simplifying the treatment burden of people with CF? 9. Can genetic therapies (such as gene editing, stem cell and mRNA technology) be used as a treatment for CF? 10. Is there a way of preventing CF related diabetes (CFRD) in people with CF? *Priorities 3, 5, 8 and 10 were identified in the Top 10 priorities in 2017 and are still priorities today.

The following additional questions were also discussed at the final workshop and ranked in order of priority: How can we recognise and manage the side-effects of CFTR modulators (including those at greater risk e.g. liver disease)?

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11. Are people with CF at higher risk of certain cancers and what is the best way to detect and manage cancers in people with CF? 12. Can exercise replace chest physiotherapy in people with CF? 13. How best to manage and support people with CF post-transplantation (e.g. mental health, rejection, modulator use)?

14. What is the optimum treatment regimen for eradication of Pseudomonas in people with CF? 15. What effective ways of motivation, support and technologies help people with CF improve and sustain adherence to treatment?

16. How to improve breathing capacity/lung volume?

Cystic Fibrosis Ireland will disseminate these priorities among the research community to see how their work might answer these questions. This list will help clinicians and researchers to decide what areas of CF they should focus their research work on. Significant progress has been made in the last 5 years on the questions identified in the original priority setting partnership. We look forward to seeing the progress that will be achieved on the new priorities over the coming years.

www.cfireland.ie

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Charity of the Year Encourage your employer to select Cystic Fibrosis Ireland as their Charity of The Year As companies look at who they are going to select as their Charity of The Year for 2023, why not ask your employer or ask your friends and family to ask their employer to nominate Cystic Fibrosis Ireland (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 provide key supports and services for people with cystic fibrosis 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 select the 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 the 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 Sporting and Social Activities 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.

PWCF in Ireland need your support!

Microsoft DCA EMEA Team

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Cystic Fibrosis Ireland – Sporting Events You can support CFI with your colleagues by participating in a range of Sporting Events in 2023 either as part 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. 2023 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) Skydives 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 14th April 65 Roses Day (Our National Flag Day) takes place on Friday 14th April. This is the National Fundraising Day for Cystic Fibrosis in Ireland and we will have volunteers selling our emblem, the purple rose in Shopping Centres and on the streets across Ireland. If your company is looking for volunteering opportunities 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 organise to get you involved in your local or most suitable collection on the day.

Corporate Sponsorship Another way your employer could help support people with CF in 2023 would be to sponsor one of the major events hosted by CFI. This could include our National Conference which takes place in Dunboyne in April, 65 Roses Day also in April, One in 1000 VHI Women’s Mini Marathon in May or the Malin2Mizen Cycle4CF and Head2Head Walk in September.

By sponsoring our events, we can cover the costs involved in organising events, recruit additional participants allowing us to generate more funds to support the provision of support and services for PWCF in Ireland.

Triple Locked Cystic Fibrosis Ireland were delighted to be confirmed as a Triple Locked member of Charities Institute Ireland.

This demonstrates to our beneficiaries and donors that CFI operates with openness, transparency and integrity by adhering to the Triple Lock Standards - transparent reporting, good fundraising and governance.

For more information….

For support with any discussions with your employer or a potential Corporate Sponsor, please do not hesitate to contact the CFI Fundraising Team (01) 4962433 or email fundraising@cfireland.ie BUPA Global DAC Cheque Presentation

www.cfireland.ie

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FUNDRAISING: Challenges and Events 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.

December 9th: Christmas Jumper Day 4 CF On Friday, 9th December, we are encouraging as many workplaces and schools as possible nationwide to support Christmas Jumper Day 4 CF in their places of work or virtually again this year!

Interested in getting involved? All you need to do is…

1. Ask your work colleagues or fellow teachers and pupils to support Christmas Jumper Day 4 CF on Friday, 9th December. Encourage everyone to wear their Christmas Jumper to work in return for a €5 donation to support people with Cystic Fibrosis in Ireland 2. Register your interest to participate at cfireland.ie and we will contact you and organise to send you a Christmas Jumper Day 4 CF pack - balloons, bah humbug badges, posters, sponsorship cards and collection buckets as required.

3. Bah Humbug donation! If colleague does not wear a Christmas Jumper, ask them to make a donation of €10 in return for a ‘Bah Humbug’ badge! It’s all for a great cause!

4. Ask you company / school if they are willing to match fund the monies raised!

5. On the day, make sure to get everyone together in your place of work or on zoom and take loads of photos!

Post them to our Facebook page (facebook.com/CysticFibrosisIreland), share them using the hashtag on Twitter or Instagram #ChristmasJumperDay4CF and tag us (@cf_ireland), or simply email them to us at fundraising@cfireland.ie so that we can share your fun with everyone else.

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After the event you can; •

Lodge the monies raised: IBAN: IE59 AIBK 9310 7108 5785 93 BIC: AIBKIE2D

•

Post a cheque to Cystic Fibrosis Ireland, 24 Lower Rathmines Road, Rathmines, Dublin

•

Donate online at www.cfireland.ie

(Please remember to include your companies / schools name as a reference so we know who it’s from) Don’t forget register your interest to take part in Christmas Jumper Day 4 CF at www.cfireland.ie and we will help you organise everything for your Christmas Jumper Day 4 CF 2022 – Ho Ho Ho! If you can’t get involved this year and would still like to donate you can Text to Donate!

Text ‘FIGHT CF’ to 50300 to donate €4.

[Text cost €4. Cystic Fibrosis Ireland will receive a minimum of €3.60. Service Provider: LIKECHARITY. Helpline: 014819311]

December: Christmas Cards Stay in touch this Christmas with a Cystic Fibrosis Ireland Christmas Card!

Our Guaranteed Irish Christmas Cards are available online at www.cfireland.ie for just €6.99 per pack of 8 cards! We have 15 different festive designs to choose from as well as 3 variety packs with 4 different designs x 2 cards. This is a lovely way to stay in touch with your friends and family this Christmas.

Best of all, the proceeds raised allow us to continue to provide much needed support and services to people with Cystic Fibrosis all across Ireland.

April 14th: 65 Roses Day 65 Roses 65 Roses Day is our National Fundraising Day for Cystic Fibrosis Ireland. This is our largest fundraising event of the year and targeted to raise €350,000 to help fund essential services needed now more than ever by people with Cystic Fibrosis in Ireland. Please support Cystic Fibrosis Ireland on 65 Roses Day, Friday 14th April by taking part in a 65 Roses Challenge or donating online at 65roses.ie

www.cfireland.ie

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65 Roses Challenge Why not set up a 65 Roses Challenge to help people with Cystic Fibrosis for 65 Roses Day? 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 www.65roses.ie and this will guide you through how to set up your Just Giving Page to start your challenge.

You can start your challenge as soon as you are ready to help you stay fit in the New Year and complete it alone or with friends. Enjoy your challenge and don’t forget to share it on your Social Media to get maximum support #65Roses2023!

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

Online Donations 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. At this time when fundraising has been severely impacted by the pandemic and the war in Ukraine, any support you can give is greatly appreciated.

Volunteering Your support can help make a huge difference!

Cystic Fibrosis is looking for volunteers across Ireland to help us with collections at your local shopping centres and Dunnes Stores outlets on 65 Roses Day – Friday, 14th April! We are looking for volunteers to help either in the morning slot from 10am to 2pm or the afternoon slot from 2pm to 7pm. If you would like to volunteer, please email svalliere@cfireland.ie or phone 01 4962433. You can also register your interest to volunteer on our website www.cfireland.ie.

April 23rd: Duleek 10k Cystic Fibrosis Ireland and all of the team at the Duleek 10k are delighted to announce the 11th Annual Duleek 10k will take place on Sunday 23rd 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 Sarah at svalliere@cfireland.ie or Ann Noone at duleekcf10@gmail.com.

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April 23rd: TCS London Marathon The London Marathon is one of the most iconic and globally renowned marathons in the world and takes place next year on Sunday 23rd of April.

Places are only available via a lottery to the general public. However we can provide you with a guaranteed place if you book your trip with Cystic Fibrosis Ireland.

As places are limited, register your interest to take place now on our website at www.cfireland.ie and we will contact you to confirm next steps.

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

June 4th: VHI Women’s Mini Marathon / One in 1000 We are delighted to announce that the Vhi Women’s Mini Marathon returns on Sunday, 4th 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, 1,000 women take part in their purple Cystic Fibrosis Ireland shirts representing Cystic Fibrosis Ireland.

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 coat / bags, 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 Cystic Fibrosis Ireland pack and details for the day. We will let you know when registration opens from the Vhi so that you can register with them to get your number for the 10K. For further details, please contact us on 01 4962433 or email fundraising@cfireland.ie

www.cfireland.ie

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September 1st to 7th: Paris2Nice Registration is now open at www.cfireland.ie for the Paris2Nice Cycle which leaves Paris on Friday, 1st September arriving in Nice on Thursday, 7th September. REGISTER NOW 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 on January 18th in the Goat Grill, Mountanville. For further details call us on 01 4962433 or email fundraising@cfireland.ie.

September 10th: Head2Head Walk After a hugely successful 10th Annual Head2Head Walk in 2022, we are delighted to announce that the Head2Head Walk will return on Sunday, 10th September in 2023. Register to take part now at www.cfireland.ie for this amazing walk along the stunning Dublin coastline. For further details call us on 01 4962433 or email fundraising@cfireland.ie.

September 19th to 26th: CFI International Walk The CFI Walk Committee are delighted to announce that the Cystic Fibrosis Ireland International Walk for 2023 will take place in ‘Malta & Gozo’ from Tuesday, 19th to Tuesday, 26th September. 2023 marks the 29th year of Cystic Fibrosis Ireland's International Walk and promises to be another unforgettable experience for all walkers.

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Malta and its sister island Gozo are part of an archipelago in the Mediterranean and boast a year-round sunny climate. Journey accross 7,000 years of history, culture and natural beauty. Walk through magical landscapes and country and coastal walks perfect for walkers of all ages and levels.

Enjoy diverse culinary experiences, from the traditional plate of eclectic Mediterranean food to varied International menus in local and first class restaurants and wine bars. Experience the warm and friendly Maltese culture in a safe and tranquil environment that few other destinations can rival.

Does this sound good to you? Why not dust off those walking shoes and join the fun! See the world and make friends for life, all the while raising much needed funds for people living with CF in Ireland. Contact Miriam at mhunt@cfireland.ie / 01 496 2433 to receive more information as we would love you to join us in Malta & Gozo next September!

September 14th to 17th: Malin2Mizen Cycle4CF We are absolutely delighted to announce that our Annual Malin2Mizen Cycle4CF will take place on Thursday 14th to Sunday 17th 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 14th September and will finish in Mizen Head in Co. Cork on Sunday 17th, September. The event requires plenty of training as we will be covering an incredible 640km in 4 days! You can register for our 2023 cycle on our website at www.cfireland.ie or by contacting us on (01) 496 2433 or emailing us on fundraising@cfireland.ie.

All participants are asked to provide a deposit of €250 to secure their place and are asked to raise €2,000 in total. This will cover your food, accommodation and insurance for the 4 days of the cycle. All funds raised will go to Cystic Fibrosis Ireland to help us continue to support people living with Cystic Fibrosis.

www.cfireland.ie

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October 29th: Irish Life Dublin Marathon The Irish Life Dublin Marathon returns on Sunday, 29th October. If you would like to part on behalf of Cystic Fibrosis Ireland, register your interest on our website at www.cfireland.ie and we will contact you and provide you with your Cystic Fibrosis Ireland shirt for the day once you have secured your race entry with Irish Life Dublin Marathon.

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

November 5th: 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 5th runs through all 5 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 .ie or call (01) 496 2433.

All Year Round: International Treks

For the really adventurous looking for the challenge of a lifetime in 2023, 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.

Skydives If a skydive are on your bucket list, then 2023 is your chance to tick it off, while supporting a great cause. This challenge is one you will never forget and all you have to do is register your interest to take on our website at www.cfireland.ie and we will contact you to confirm next steps.

Now is the time, take on the challenge and you will remember 2023 for all the right reasons. You can contact our office on 01 496 2433 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:

CFI International Walk Cystic Fibrosis Ireland would like to say a huge thank you to each of the walkers who took part in the 2022 CFI International Walk to Madeira.

A whopping total of €119,424 was raised! Well done to all for the hard work on the fundraising. We look forward to seeing you all in Malta & Gozo in 2023!

CFI would also like to say a special thank you to the Walk Committee voluntary members Bernie Murphy and Vinnie O’Malley who ensure the CFI International Walk takes place each year! Keep an eye on our website and social media channels over the coming weeks for more info on Malta & Gozo 2023 and if you have any questions drop Miriam an email at mhunt@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 City Marathon! Well done on smashing your goals as well as fundraising some really fantastic amounts. We hope you have recovered well at this stage!

www.cfireland.ie

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Malin2Mizen Cycle4CF We would also like to say a huge THANK YOU to all our cyclists and the support team who successfully completed our annual Malin2Mizen Cycle4CF in 2022, raising an amazing €126,288!! Thank you also to all our generous sponsors who cover the costs involved in running this event including Europcar Ireland, Maxol, SPAR Ireland, Door Motion, Murray Timber Group, Lidl Ireland, Dunnes Stores, Donegal County Council and Donegal Local Sports Partnership.

Pictured below are some of the cyclists and support team presenting the cheque to Cystic Fibrosis Ireland.

54321 Challenge CFI and Orla O'Sullivan extend a massive thanks to Orla's Mum, Geraldine, who between August 18th and August took part in the '54321' challenge in Co Kerry fundraising for Cystic Fibrosis.

The event included cycling the Ring of Kerry and from Killarney to Cahersiveen, climbing Carrauntoohil and Cnoc na Tobair as well as a spinathon. The total raised a whopping €13.788.00 for Cystic Fibrosis.

A special mention to TJ O Connor and his team for organising such a great event helping participants achieve their goals with the support of each other.

Microsoft DCA EMEA A huge thank you to the Microsoft DCA EMEA Team, who came together on the 28th of October to raise some funds for Cystic Fibrosis Ireland. They hiked the Spinc Trail in Glendalough, and five brave men, took a dip in the lake afterwards to accelerate the donations.

They ended up raising €5,799, which Microsoft matched 100%. With the help of a very special guest, Matthew Kennedy (PWCF), they handed over a cheque to Fergal Smyth of Cystic Fibrosis Ireland for €11,598 at the end of November.

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TCS London Marathon Many congratulations to everyone who took part in the TCS London Marathon on Sunday, 2nd October including Katie Moore, on behalf of Cystic Fibrosis Ireland. Katie raised a massive €4410! We really appreciate all your efforts and for fundraising for Cystic Fibrosis Ireland, Katie!

CFI International Walk Raffle Thank you to all who purchased tickets in our CFI International Walk raffle with the draw taking place in Drogheda on the 8th of October. A huge thank you to all the sponsors of prizes, and congratulations to all the lucky raffle Prize Winners as listed below!

Bupa Global DAC A huge thank you to all the staff at Bupa Global DAC who selected Cystic Fibrosis Ireland as a charity to support in Ireland in 2022. Conor Heery, CEO, Bupa Global DAC handed over a cheque for €5,700 to Fergal Smyth on behalf of Cystic Fibrosis Ireland at the end of November.

Corporate support is very important to help Cystic Fibrosis Ireland continue to provide support and services for people with CF in Ireland so please nominate and vote for CFI if your employer is selecting a charity to support in 2023. We would be delighted to come and visit any company to talk about Cystic Fibrosis and the services we provide to support people with CF in Ireland.

www.cfireland.ie

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CFI Fundraising Calendar of Events 2023 April

Friday 14th - 65 Roses Day Sunday 23rd - Duleek 10k Sunday 23rd - TCS London Marathon

June

Sunday 4th - One in 1,000 / VHI Women’s Mini Marathon

September

Friday 1st to Thursday 7th - Paris2Nice Cycle Sunday 10th - Head2Head Walk Thursday 14th to Sunday 17th - Malin2Mizen Cycle4CF Tuesday 19th to Tuesday 26th - CFI International Walk

October

Sunday 29th - Irish Life Dublin Marathon

November

Sunday 5th - TCS New York City Marathon

December

Friday 8th - Christmas Jumper Day 4 CF

All Year

International Treks Skydives

24 Lower Rathmines Road, Rathmines, Dublin 6, D06 A9P3, Ireland t: +353 1 496 2433 e: info@cfireland.ie w: www.cfireland.ie Company Reg: 449954

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CRA Number: 20011376

Charity No: CHY6350

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