Spectrum

Support people with Cystic Fibrosis on our Head2Head Walk - Sunday 8th September

LATEST NEWS

CF Outpatient Department Galway University Hospital

It was great to see the progress on the new Adult Cystic Fibrosis Out-Patient Department at Galway University Hospital during a recent visit. The unit will have sufficient capacity, design features and specification to allow for best practices in CF treatment and care. The new unit is a coordinated and collaborative project between CFI, the HSE, Saolta and GUH and would not have been possible without the tireless fundraising and support of those in the Galway Branch. A total of €700,000 euro has been provided by the Galway Branch and CFI towards the build. Our sincere thanks to the wonderful multidisciplinary team led by Dr O’Mahony who provide excellent care to adults living with CF attending the unit. We look forward to opening the doors to the new unit later this year.

Creon

CFI is aware that there are shortages of the PERT product, CREON affecting our members. This is due in part to manufacturing capacity problems and is leading to temporary, rolling supply disruption. CFI have been working closely with CF Europe to advocate for solutions and provide our members with information and updates as we receive them. Because of the swiftly changing nature of the updates that CFI are receiving, we encourage our members to follow the CFI website or social media channels where we will continue to provide the most up to date information as we have it.

August 'Coffee & Chat' Online Events

CFI are delighted to announce a series of 'Coffee & Chat' events taking place online throughout August. Members will have an opportunity to chat to others who are at a similar stage of their CF journey, be it a new diagnosis or starting third level education. Each event will be hosted by a member who has relevant experience to share. Please turn to the back cover for details. We hope to see many of you there and extend these events beyond August.

Working Groups

Would you consider using your skills and expertise to support the advocacy work of CFI? The Meet and Greets have highlighted the incredible knowledge and expertise that exists within the CF community. We are hoping to harness some of this to support our current advocacy campaigns. We are currently working on two campaigns, one for access to mortgages and mortgage protection products, the other for access to medications and drug trials for those with rare mutations. If you have skills or experience in either of these areas we would like to invite you to join a working group for 12 months in support of our campaigns. Each group will meet 6 times over the coming year. If you have suitable skills and would like to volunteer your time please let us know.

Meet the New Members of the CFI team

by Ashley Lopez, Communciations Intern

Stewart Lee - Office Manager

Stewart is CFI’s new Office Manager. He maintains daily operations to ensure a smooth running of the office and is the front of house, answering phones and assisting all project areas of our organization. Before joining CFI he ran his own events company which organized holiday and sporting activities for children and their families. Stewart’s nephew, born with cystic fibrosis, raised his awareness of the condition. CFI has been able to provide support and resources to his family. In his spare time Stewart arranges teams for rugby and football. He also enjoys running and the gym.

FUN FACT: When working in the U.S., Stewart was once locked in a small cupboard with Neil Patrick Harris.

Emma Wallace - Member Services and Advocacy Senior Coordinator

Emma, our new Member Services and Advocacy Senior Coordinator, joins us with 17 years of experience in the NGO sector. Emma looks forward to being a part of the journey for pwCF by supporting the needs of our members while advocating for change. Emma wants to ensure that all have equal support, services, and access to the healthcare they need. She wants to support a pathway through life where those with cystic fibrosis can live a full life and are not defined by it. Outside of advocating for our members, Emma organizes and participates in Parkruns every Saturday. She likes to challenge herself to new things and would one day like to take part in a triathlon.

FUN FACT: When Emma is not busy doing fitness or decorating cakes, she’s being a shark at Jenga.

Sarah Duggan - Fundraising Development Coordinator

Before joining Cystic Fibrosis Ireland, Sarah spent 10 years working in the tech industry and previously worked at Stripe as a side operations coordinator. After nine months of volunteering with CFI, Sarah joined our events team as our Fundraising Development Coordinator. She now manages our 65 Roses National Flag Day and grant applications. Looking toward the future for pwCF, Sarah hopes for further support and funding from the Government for mortgages, fertility, and more. She is an avid traveler with some of her favorite places being South Africa, Malaysia, and Spain. Prior to moving back home to Ireland, Sarah lived in the U.S. for 10 years.

FUN FACT: Sarah has visited 30 US states and has made it a goal to visit all 50!

Beyond the Pale & FFGWCF!

by Jen Balfe, Research and Policy Coordinator

Your CF guide to festivals

Here comes the sun...

Are you taking Doxycycline or Ciprofloxacin (serious sunburn risk!)?

Check with your team if you are going to be out in the sun and taking medication that presents a sunburn risk

Pack and use high factor sunscreen

Have a sun hat/cap also take shade breaks Remember to stay hydrated (with water that is). Have some Dioralyte in your back pocket - especially when sun is shining - just in case!

plan your CF-estival

Hydrate & Salt

Plan what acts you want to see and check does the band clash with your treatment routine Set an earlier/later alarm to ensure that you dont miss meds or treatments or your favourite bands!

Anti-Bacterials

Wipes and hand gel. Need we say more.....

Plan for EVERYTHING!

Bring enough meds to see you through the weekend just in case and put them in an easy to find bag with a list of emergency contacts and your own number in case they are lost. And finally, remember to contact CFI for your festival letter of support before going!

Recently, Jen from CFI caught up with Accessibility Officer Diane Best from Beyond the Pale festival in Glendalough, to chat all things accessibility and festivals. Amongst the hustle and bustle of glitter clad festival folk and the intermingling of different sounds and songs, we discussed how music and festivals can cater towards people with different accessibility needs to ensure a fun and safe experience. For Beyond the Pale, you register as having any type of accessibility need, then you receive an email from Diane and a contact number to reach her and she personally meets festival goers who have requested accessibility passes and shows them around (how nice is that!). I found Diane wanted to know more about CF to help her best look after future festival goers with CF (FFGWCF!). In the first aid marquee, there was a power supply to ensure people could do treatments safely and a fridge for medication but it may not be the same for all festivals, so it is important to check this out before you go. Diane was interested to know some of the specific needs and requirements of pwCF as well as learning more about how CF affects people and her top tip for anybody with CF or any other condition going to a festival was to approach the accessibility team early and be really specific as to what your needs

are. The more specific you are as to what your needs might be over the course of the festival the better able the accessibility team will be to support you. Diane highlighted that the main focus is on year on year improvement and the best way to help BTP meet the needs of their accessibility clients is through making direct contact if you have a particular requirement. For accessibility clients there are parking spaces for day tickets right next to the arena, an accessible campsite with car parking within 15m of tents, accessible toilets, accessibility platforms, provided transport for accessibility clients to general camping to camp with friends, personal meet and greet and telephone contact with Diane for the duration of the weekend. Lots of thought and a really inclusive approach…Well Done BTB!! Thanks to Diane for taking time out of her hectic weekend ensuring everyone had fun in a safe and accessible way.

Re-Cap on the Green Paper on Disability Reform

What was the Green Paper on Disability Reform?

In September 2023 the Department of Social Protection published a ‘Green Paper on Disability Reform: A Public Consultation to Reform Disability Payments in Ireland’. One proposal under the Green Paper was to replace current payments like invalidity pension, disability allowance and Blind pension with a single personal support payment. Amongst other ideas proposed within the Green Paper was the establishment of a three tiered system whereby people would be categorised by their ‘capacity’ to work.

Listening to the Concerns of our Members and Others

CFI staff attended a public consultation day (in-person and hybrid) at Dublin Castle. From the early stages CFI engaged with a number of other organisations, the Disability Federation of Ireland, Inclusion Ireland, Enable Ireland and As I Am amongst others to discuss the community sector response to the proposal to align our asks to the broader goals.

CFI most importantly held a focus group with members of the organisation to discuss their views and concerns with regards the proposed disability reforms and on the feedback from pwCF, parents and other charity organisations a response to the Green Paper was written.

The ‘FAIR Approach’

CFI proposed the ‘FAIR’ approach to the current support system. Supports should be Flexible, Accessible, Immediate and delivered at the Right time in the Right manner.’

Cost of Disability Payment

Apart from being a long term, progressive illness, CF is a high-cost illness. There is a huge financial burden on people with CF to simply keep as well as they can without the extra cost to finances and health that being employed may add to this. Like many other charity groups, CFI highlighted the need to consider a cost of disability payment to offset the high personal, financial and societal costs of living with a disability in Ireland.

Lack of Flexibility

CFI noted the current risk for pwCF in reducing/stopping their disability payments to begin employment. The current lack of flexibility in re-accessing disability payments once illness has begun and the arduous appeals process is a barrier to gaining employment for many pwCF. An understanding of the amount of security and peace of mind which a pwCF must give up in order to stop a disability payment is necessary, especially given the often-uncertain disease progression and periods of rapid onset acute illness for many with CF and other illnesses.

Support and Accessibility

CFI suggested that to encourage those who want to and who are capable of working, it would be necessary to safeguard immediate and easy access back to disability support payment in the event of illness. This would ensure that those who wanted to begin work could do so without the fear of further personal and financial loss. This flexible and inclusive approach would also ensure that once well enough to return to work pwCF would do this safe in the knowledge that they are supported and enabled.

Lack of Inclusion and Engagement

As we have always known in CFI, there is power in unity. The approach to the Green Paper reflected

connection, common ground and the importance of inclusion. CFI listened to its members and the members of other organisations and as we saw our concerns reflected across the disability and CF communities. CFI have always advocated for the early inclusion of people in the decisions and plans that will most affect them. In its submission CFI noted the lack of involvement in and consultation with people with disabilities in the Green Paper.

The End of the Green Paper…

After an overwhelmingly negative response and concerns regarding the lack of inclusion people of with disabilities/disabled people, Minister Heather Humphries announced on April 12th that the Department Social Protection would not be proceeding with the proposed Green Paper.

What's Next

While the Green Paper is no more, CFI is looking forward to continuing to engage with the Department around disability support improvements and will advocate, as always, for early and meaningful engagement on all future proposals.

Organ Donor Awareness Week

CFI were delighted to attend the launch of Organ Donor Awareness Week in April of this year. The years event was organised by the Irish Kidney Association and Organ Donation Transplant Ireland (ODTI) and Nicola Delaney Foxe attended on behalf of CFI as part of the Irish Donor Network (IDN). Many inspirational patient stories were told, including one from Brian Vaughan, a lung transplant recipient and person with CF, and each story highlighted the precious gift of life given by organ donors and their families to those in need of life-saving transplants.

We heard that by the end of 2023, 265 transplants, including 24 lung transplants, were reported in Ireland. 2023 also saw the passing of The Soft Opt-Out Organ Donation legislation, The Human Tissue Bill, in Dail Eireann following many years of campaigning by CFI and patient groups involved in the IDN. Soft Opt-Out Organ Donation has improved the rate of transplantation in other countries such as Spain which consistently has the highest rate of transplantation/organ donation in the world, and it is expected that with the passing of this bill and time, there will be an increase in transplantations in Ireland.

CFI is a member of an advisory group for a public awareness programme coordinated by the Office for ODTI, and now, along with the IDN, urge the government to accompany the legislation with a major public awareness campaign, which they have promised to do.

Members of the IDN with Minister for Health Stephen Donnelly and other patient organisations

Members of the IDN at the launch of Organ Donation Awareness Week 2024

MEMBER SERVICES

Member Services Team Update

If you have any queries about CFI grants or services, state benefits or require information about Cystic Fibrosis, please email us at memberservices@cfireland.ie

Emma Wallace Caroline Heffernan Rory Tallon

emma.wallace @cfireland.ie cheffernan @cfireland.ie rtallon @cfireland.ie

Did you know...

Emma Wallace has joined Caroline and Rory on Member Services team as the new Member Services and Advocacy Senior Coordinator.

Emma's email is emma.wallace@cfireland.ie and we also have a new way for you to get in touch with the team.

You can now also email memberservices@cfireland.ie with all your queries.

Did you know, our member services team are always on hand to support, assist and guide members in relation to life with CF.

Listening Service

The member services team provide a listening service to all our members, whether you are an existing member or a new member. The line is open from Monday to Friday, 9am-5pm and the team are on hand to listen and provide you with a safe environment to talk through any need you may have in relation to life with CF.

Letters of Support

The member services team can also provide members with letters of support. A letter of support is a letter which is issued by CFI on behalf of a member for a variety of reasons. This might be in support of an application, appeal, explanation or otherwise.

Get in

touch

So, whether it is a listening ear. signposting you to supports, or something else please feel free to contact a member of our team by calling head office on 01-496 2433 or emailing memberservices@cfireland.ie.

The Youth Advisory Panel

Following feedback from and analysis of our membership, CFI invited people with cystic fibrosis living in Ireland, aged between 16 and 25 years, to meet with the team to discuss the need for a Youth Advisory Group. The aim; to develop a group to advocate for and support other young people with CF in Ireland, and to be a link between them and CFI to develop relevant supports.

The exploratory meeting took place in early July and many topics were discussed, from the school experience as a child with CF, to why adherence to treatment may decrease as an adolescent, to challenges transitioning to adult services. The discussion illustrated a genuine desire to guide and advise children as they navigate life with CF. The group also felt there was a need to create a supportive connection between young people with CF others who had, are having or will have similar experiences and ultimately who ‘get it’.

The accessibility of resources provided by CFI were also discussed in relation to this age group and ideas were shared on how and through what channels CFI and the Youth Advisory Panel can best serve children and young people with CF in Ireland.

Bernie Priestley, Chairperson CFI, and Sarah Tecklenborg, Interim CEO CFI, were also present on the evening and would like to thank those members of the CF Community who were able to join the online meeting. The Youth Advisory Panel is in the early stages of development and we would welcome anyone who is between the ages of 18 to 25 and living with CF in Ireland and interested in this initiative or who would like to know more, to get in touch by emailing on memberservices@cfireland.ie.

Good luck to the Irish Transplant Football Team

Irish Transplant Football team including four people with

Cystic Fibrosis:

• Lar Brennan

• Louis Duffy Barrett

• Jack Bentley

• Keith Daly

Good Luck to the Irish Transplant football team who are competing this September in the first ever Transplant World Cup in Italy. Starting back in 2019, a small group became something bigger, and as more people joined, they became a team that motivated each other to keep pushing forward as much as possible, as well as congratulate each other on their achievements, whether it's on the pitch or off. The team has been training hard this year and getting ready to show their skills and ability while also raising awareness about organ donation and the benefits of it in post-transplant life. For all the team members, it has been amazing to feel the benefit of exercise both physically and mentally, which shows how much you can achieve, especially after previously spending so much time in hospital. Louis Duffy- Barret, a post-transplant person with CF and member of the Irish team says “We will be forever grateful to our donors.” We will be rooting for you lads!

Follow the 2024 Transplant Football World Cup on wtgf.org.

Travel Diary of a PWCF: Postcards from Paradise

by Mark O'Driscoll

Mark O’Driscoll is a 34 year old teacher in Cork, under the care of the CF Clinic in Cork University Hospital. While holding a great appreciation for exploring Ireland, he has travelled to some special places, always appreciating the unpredictability of a journey as much as the destinations. He has a great curiosity about how people live their lives in other places and the comparisons that can be drawn to life in Ireland. Here are a selection of experiences he has had, while also including some tips for people with CF when it comes to travel for long periods of time.

South Africa

Heading to South Africa as a 17 year old on a rugby tour for three weeks was hugely exciting, while also representing my first time away for so long by myself. My parents instilled a great sense of personal independence and responsibility for my treatments and, recognising the importance of this, it allowed me to be consistent and monitor my health maturely as I transitioned from paediatrics to adult clinics.

I was lucky enough to be sharing rooms with great friends, who were well aware of my need to take medicines and spend time doing physio each morning and evening. On a tour centred on playing rugby, making sure I was fit, well and enjoying the experience of playing against South Africans was really important to me. It would have been easy to get side-tracked between the excitement of the matches, safaris and trips up Cable Mountain, but none of those things would have been enjoyable if I wasn’t feeling well.

Asia

Energy, tranquillity, stunning nature and urban chaos blended into a contradictory mix during my visits to Asia. The modernity of Kuala Lumpur, archaic history of Vietnam and saddening history of Cambodia all stand out in my memory. Welcoming people with positive perspectives through tough circumstances, delicious street food perched upon tiny plastic chairs and road markings that act more as a guideline than law; these places have to be experienced to be appreciated. One of my favourite memories to this day was driving the famed Hai Van Pass on clapped out mopeds as the sun set on a day that contained blistering sun and tropical thunderstorms. The humidity of Asia was tough on the body at times, so drinking plenty and taking in extra salt was always a priority on those days.

New Zealand

Road trips are my favourite way of travelling as they give you plenty of freedom to explore random nooks and crannies, flexibility over your schedule and the chance to take in your surroundings. Cruising around New Zealand with one of my best friends for the British and Irish Lions Tour in 2017 was a once in a lifetime road trip. We met wonderful locals who welcomed us with genuine hospitality, experienced natural places of awe-inspiring beauty and got involved in the partying unique to a Lions tour. Waking up in a camper van at Queenstown with the temperature at a frigid -4 degrees sometimes made it tempting to avoid physio. However, feeling each inhale of fresh mountain air penetrate the lungs was a unique way to start the day, while each warm exhale could be seen against the backdrop of snow covered mountains. One of the more memorable physiotherapy locations I

Hawaii was always a dream destination for me to experience. My mother would say that I have salt water in my veins, as I love being on, in or near the sea. The lifestyle and culture of Hawaii appealed to me from a young age. So in 2022, I took a punt and reached out to a couple of homeowners who were looking for people to house-sit their homes and pets while they went on holiday. Cue a three month stint spent between Maui, Hawaii Island and Oahu, making the most of the hiking, surfing, snorkelling, outdoor training, beach-lounging and cat-sitting. Each day involved waking at 6am and hitting the hay at 9pm once pets were walked, fed and watered to make the most of everything on offer. As my check-in bag was lost and delayed by three weeks upon my arrival, it reinforced just how important it is to bring your medicines in your carry-on luggage. I always do anyway, but this certainly underlined how crucial it is, as three weeks of a three month trip without them simply would not have worked. This is especially true in the case of Kalydeco and Kaftrio as they have such a massive impact on daily life. This was my first trip since starting these medicines and the effect they had was magnificent –the last thing I wanted was to be stuck without them.

South America

Recently, I have had the great privilege of exploring South America over two separate stints. A wild, rugged, loud, beautiful and buzzing continent, it has left an indelible mark on me for all the right reasons. Walking on glaciers and climbing snow-blanketed peaks in Patagonia; witnessing the mind-boggling Moai statues of Easter Island; looking over sunset in Rio de Janeiro while Christ the Redeemer looms overhead; surfing in northern Colombia; reaching ‘the most southern settlement in the world’ of Puerto Toro in Chile after a 32 hour cargo ferry through the Strait of Magellan – this place has it all for the adventurous among us.

On one such occasion, a deeply valuable lesson relating to CF was reinforced at the border crossing between Chile and Argentina: patience. All round South America, police checkpoints are regular, often stopping cars and buses. On one such occasion, a policeman was suspicious of the large quantities of Creon, antibiotics, modulators, etc. in my rucksack. He asked me to follow him off the bus for a detailed search and explanation of each medicine. Standing at 10pm at the side of the road as four policemen and women inspect your medicines was certainly a new venture! Regardless, I had my prescriptions, letters and labels for each box, eventually placating them upon closer inspection of the letter from my clinic in CUH. While I knew I was in the right, the staring silhouettes of the other passengers on the bus made for an extra layer of calmness to be required. In the end, between my average Spanish and their translator app for English, the police were satisfied to let me on my way. The whole interrogation lasted about half an hour or so, really highlighting the importance of a calm head. Patience (and preparedness) is a virtue, but the pay off is always worth it!

1. ALWAYS have your medicines in your carry-on luggage.

2. Have copies of prescriptions, clinic letters or any other documentation in both physical and digital form.

3. If travelling to a country that doesn’t speak English, no harm to have copies of documentations translated into the destination language.

4. If staying in hostels, sometimes it can be hard to find privacy for physio or treatments. Try to find places where you feel comfortable doing it, don’t neglect it.

5. Be conscious of border crossings, searches and questions from authorities regarding medicines. Once you have all your paperwork, you’ll be fine, but they may still perform a detailed interrogation.

6. Appreciate the journey!

Mark's top tips for CF travelling:

Top Tips for Travel

Your medication supply…

First up – how long are you going for?

Make sure you bring enough medication to last the course and even considering pre-ordering your next month’s supply before you leave so you won’t find yourself short a few day’s supply. Or if you are taking a longer stint, chat to your CF Team about practical ways to renew your CFTR medication prescription while you are away if you can. Then consider how you will get the medication ordered, collected and shipped to you whichever beach you are on or mountain you are climbing!

Taking your meds with you?

Like Mark says, bring your meds in your carry-on luggage! You don’t want your meds to be knocked about, lost or even freeze in the cargo of a plane. Bring copies of your prescription with you, a letter from your CF team detailing the medications. Consider bringing your CF medical ID card with you available free of charge from CF Ireland- email memberservices@cfireland.ie

Nebulisers

While many won’t need to consider this, but if you do, you can switch to a battery-operated travel nebuliser. Consider how you will clean your nebuliser and also check check the voltage and plug requirements of the region you are travelling to. Remember, 220-240 volt box nebulisers don’t work on US 110 volt electricity supply- so be sure you arrange a travel nebuliser or source a nebuliser for your stay while abroad.

Hydration

Hydrate, hydrate, hydrate! Don’t forget to pack electrolyte rehydration tables or sachets. Drink plenty of water also, both on holiday and travelling through airports and on the plane. Be warned also that with CF you don’t always feel thirsty even when your body might crave water due to an impaired thirst response in CF.

Vaccines and Insurance

Make sure your travel vaccinations are up to date and correct for the country you are visiting. If unsure ask your GP or call the tropical medicines bureau.

Travel insurance is extremely important for all holidays, (if you have private health insurance it is easier and cheaper to get travel insurance. If travelling in Europe in EU or EEA area or Switzerland make sure to apply for your European Health Insurance card well in advance of your trip. You apply to the HSE free of charge for this card – see the resource list below.

Do your homework

Don’t forget to research where you are going, the conditions there that might affect you, what the voltage or electrics of the destination are, any visa requirements you might need and maybe even where the nearest Irish embassy is. If going far, register your contact details on the citizens registration with the DFA- Department of Foreign Affairs. This is in case of unforeseen emergencies such as lost passports or family emergenciesthe DFA can contact you.

CF Team

If in doubt, ask your team. About anything – they are best placed to advise on your specific situation. If going for extended period of travel or to remote regions be sure to find out before you depart where is the nearest cystic fibrosis specialist care centre and bring the contact details of this with you on your travels.

CFI Travel Resources

Medical ID Card – https://www.cfireland.ie/about-cf/living-with-cf/travel-and-cf European Health Insurance Card: https://www2.hse.ie/services/schemes-allowances/ehic/ Irish Embassies around the world: https://www.ireland.ie/en/dfa/embassies/ Department of Foreign Affairs: https://www.dfa.ie/travel/citizens-registration/ Contact memberservices@cfireland.ie for more information.

Brendan's Doodles

"Trying to plan a doodle but instead just day dreaming about a nap”

by Brendan Lonergan @BOB_NARROW, CFI Member

Review of Wonderdrug - 10/10

by Jen Balfe, Research and Policy Coordinator CFI

On May 1st, the eagerly anticipated show ‘Wonderdrug: A Comedy About Cystic Fibrosis’ performed by a star-studded cast of just one man (and his many fictional personified medical co-stars) was screened on the new platform Hop In. The event saw one of the biggest audiences to date for a CFI online event, and the show and its star Charlie Merriman were a resounding success.

Charlie who is from the UK first performed his show as a one man play at the Edinburgh Fringe Festival. Comedy and CF may seem unlikely companions but as with many pwCF, Charlie uses his sense of humour as a vehicle to present his experiences with CF and perhaps as a way of processing the often challenging and at times awkwardness of living life as a person with CF.

The show is set at the brink of the pandemic and serves as a reminder for how limited and restricted the lives of many pwCF and their families were during this time. It also highlights the extraordinary resilience, strength and vulnerability that many with CF may have been able to relate to. Charlie somehow managed to weave a developing love story, a journey of self-acceptance, a lesson on the importance of communication and empathy and made it relatable and funny and poignant and a little bit mad all at once. With an 80s soundtrack helping to punctuate the story and personified characters like Kaftrio and Hypertonic Saline, as well as an exhausting and hilarious sketch on administering home IVs it was all a little surreal and bizarre in the best possible way. Charlie wasn’t afraid to examine his anxiety and struggles to cope mentally with the challenges of CF. He depicted the awkward moment of disclosing a CF diagnosis with someone you hit it off with, wanting to be honest and accepting of yourself while at the same time fearing what the consequences of putting your CF out there for another person to deal with might be.

The title of the show is Wonderdrug: A Comedy About Cystic Fibrosis, so we all know from the start that the hero Kaftrio will arrive and save the day for Charlie. It doesn’t stop us from getting that sense of relief when the hero finally does arrive and literally puts a stop to Charlie’s cough. Charlie cleverly mirrors his own love story with that of the personified Gene and Kaftrio. The best supporting actor and actress finally meet, and the rest is history. Almost overnight things change, coughs stop, and freedom and hope arrive.

This part of the show is bittersweet. Many will recall similar experiences, and that gratitude and sense of hope at a future reimagined. However not everyone will have had that experience and for some that dream is still in the distance by virtue of the fact they aren’t eligible as yet for modulator therapy. Charlie’s experience is a stark reminder that everyone with CF is deserving of that reimagined future. Far too many people never got the chance to see the positive improvements for people with CF and the take home that this audience member got from the show and from Charlie’s open and honest chat afterwards with the audience was that we must keep pushing forward to make sure CF means we Can’t Forget about anybody until a cure is found for everyone.

ECFS 2024 - CONFERENCE

We can always be guaranteed of a strong showing from Ireland at ECFS. The commitment to and engagement in research from clinicians and researchers in Ireland is something we are immensely proud of. It was wonderful to hear of the great work going on across the country and indeed the world because of the dedication and passion of so many of the Irish research community! Here are just some of the speakers who we were priviledged to learn from at this years' ECFS:

• Dr. Rini Bhatnagar, UCD

• Dr. Kevin Deasy, CUH

• Dr. Robyn Doherty, CFRI

• Helen Gibbons, CHI at Tallaght

• Prof. Emer Fitzpatrick, UCD

• Dr. Hisham Ibrahim Saeed Ibrahim, CUH

• Clodagh Landers, SVUH

• Aoibheann Leeney, SVUH

• Prof. Paul McNally, RCSI/CHI

• Ciara O'Connor, SVUH

• Niamh O'Flaherty, SVUH

• Catherine O'Grady, SVUH

• Paul O'Regan, CFRI

• Dr. Emily M O Reilly, 3CF

• Prof. Barry Plant, 3CF/UCC/CUH

• Bei Qiu, UCD

• Clare M Reilly, SVUH

• Mel Shanley, SVUH

• Sharon Sutton, CHI/RCSI

• Dr. Noreen Tangey, 3CF/CUH

• Dr. Michael G Waldron, CUH

ECFS Conference Report

report by Parent Advocate Louise Patterson

Firstly I would like to thank CFI for giving me the opportunity to attend ECFS Glasgow 2024, not only was it a wonderful experience getting to know the team better, I also saw behind the scenes how tirelessly they work on behalf of CFI members. As a parent of a child with two rare mutations and no access to modulators, I attended the ECFS 2024 conference in Glasgow with the 10% in mind, and also for those who for whatever reason have not been able to gain the benefits offered from current modulators.

I focused on attending talks that presented on new upcoming therapies in particular mRNA therapies and Gene therapies. While the initial focus of some of the trials in these areas will be on recruiting those with no access to modulators the message was clear that these new therapies will intend to also be a complement to modulators for those who already have access. For anyone interested in participating in any clinical trials please see CF Trust’s Clinical Trial Tracker, The Cystic Fibrosis Foundation Drug Development Pipeline page to see the status of trials that may be relevant or talk to your CF consultant.

Prof. Paul McNally

Dr. Rini Bhatnagar

CONFERENCE REPORT

Presentation from HIT CF and Choices Trial

The HIT CF project has worked hard to focus on the improvements for the 10% of rare patients. I was particularly interested to see Dr van der Ent presenting on his organoid research alongside Marlies Destoop. The HIT CF project intends to individualise medications for rare Cf patients by testing their organoids against currently available medications and new modulators coming to the market. Both shared their excitement in announcing that their CHOICES trial has recently dosed their 1st patient. They have developed and will work with Fair Therapeutics using a new Triple Modulator which includes Dirocaftor; a potentiator, Posenacaftor; a corrector, and Nesolicaftor; an amplifier to help boost the benefits of cftr production.

They also announced that the Recode trial RCT2100; an inhaled mRNA medicine designed to address the genetic cause of CF in the lungs will start in the summer in a number of European locations.

Expanding the Knowledge of CFTR Modulators

While currently in Ireland (and Europe) access to CFTR modulators is limited to patients with at least one D508 gene, evidence is growing that patients with rare types of CF are also able to benefit from these modulators. This presentation focused on the expansion from a previous study conducted in France where patients with CF who did not carry the D508 gene were given 2 months access to Kaftrio. Over the period of 2 months patients were tested using markers such as sweat tests, lung function tests and multiple breath washout.

Patients with rare mutations who showed evidence of benefits were kept on Kaftrio. The further expansion of this study also considered the patients who do not show as strong clinical markers, for instance patients who did not show significant changes in sweat chloride (eg N1303K), however still gained benefit from Kaftrio, at times the patients in the grey area of results were kept on Kaftrio for a total of 4 months to see if they gained benefit or if their health stabilised during this time. These results would be enough for Cf consultants to make a case to allow the patient continued access to Kaftrio regardless of their mutations.

Genetic Therapies: Getting Them Into The Clinic

This presentation focused on therapies where clinical trials have begun or are in the early stages and planning to open trials soon. The presentations highlighted previous challenges of getting past the mucus barrier in particular in getting CFTR successfully into the lungs. It was uplifting to attend talks where presenters were using words like “exciting”, “hopeful” and “revolutionary”. They were clear to advise that they now have the technology to get past the mucus barriers. mRNA therapies will be mutation agnostic meaning it will not matter what your genes are as this approach will still provide benefit to the lungs. They highlighted some challenges that remain such as the fact that mRNA is less stable so will require more regular administration (similar to Covid Vaccines). However this is not an insurmountable issue. Some of the trials to watch out for;

• 4D-710 - Currently enrolling patients ineligible for CFTR modulators, their early studies demonstrated “robust consistent and wide spread CFTR” expression in the lungs. Enrollment continues for this trial and further data will be released in 12 months.

• Vertex VX- 522 - mRNA therapy; an inhaled messenger therapy aimed at delivering functional CFTR to the lungs regardless of gene mutations. Currently enrolling patients over 18.

• Boehringer Ingelheim- BI3720931- BI will be doing their first in human testing this year. Focusing initially on those ineligible for CFTR modulators.

• Recode (RCT2100) - with initial trials beginning this summer this mRNA inhaled therapy is aimed at patients with class 1 mutations as well as other rare mutations.

Getting Gene Therapies From Bench To Bedside

While therapies such as MRNA offer hope for patients in the nearer future. Patrick Harrison offered hope further into the future in his presentation around genetic therapies in CF. Dr Harrison was enthusiastic in his expression indicating that we are close to finding a solution to a cure for CF. However he was cautious to advise that this will still take some time before it can be administered to patients. He also expressed hope that there may be new approaches to drug development and clinical trials that make sure some of these wait times are expedited.

Safety and Efficacy of New Phage Therapies for Pseudomonas Aeruginosa BX004 - A

While we know CFTR modulators have offered incredible improvements for those who benefit, challenges remain around pseudomonas and other bacterial infections which still need to be tackled. This study looked at Phage Therapy to address Pseudomonas Aeruginosa. In this study they took three patients all chronically infected with pseudomonas. Each patient had been chronically infected for 18 to 35 years of duration. The results showed clinically significant improvement in FEV1 of 8% Plus, additionally the therapy was deemed safe, all patients showed a significant reduction in pseudomonas or presented clear sputum tests 12 months post dosing. Trials in this Phage Therapy will now move forward to the next phase.

Using AI In Detecting Exacerbations

Andres Floto presented on his Ace CF trial, a very interesting study on new ways to catch exacerbations in the era of modulators was presented. Doctors continually are challenged with how to pick up on knowing if a patient is growing particular bugs now that patients are finding it harder to spit up mucus. They are working hard on trying to find new ways to test breath and blood to detect bacterial growth.

One of the ways that has been tested currently is via a phone app where patients take their temperature daily, freeze regular sputum samples, as well as doing regular at home lung functions and report this data to the app. The app will attune to the patient's particular patterns of medical data and begin to indicate to them through a traffic light system of colors whether it seems like they were moving into an exacerbation and advise them when to reach out to their medical team.

The frozen sputum samples will be sent for analyses to pick up on any changes. It was found for patients using this app that exacerbations were caught significantly earlier and treated in a timely fashion at home reducing the need for inpatient stays, and reducing the length of antibiotics used. This approach was noted to also empower patients to be able to be more in control of their health improving their quality of life. The cost of this app was minimal per patient around £200 and money saving cost to the health service was significant, projected to be in the region of £30 million to the NHS. The app hopes to develop eventually to be available for children too. And will move into technologies of passive detection where patients do not have to continually input data for instance through smart watches, and voice sensors that pick up changes in the patients voice indicating an exacerbation is beginning.

The Power of Community

"Community means strength that joins our strength to do the work that needs to be done. Arms to hold us when we falter. A circle of healing. A circle of friends.” Starhawk

The Power of Community

The Lambay Sports Athletics (LSA) club Donabate and Portrane, was founded in 2011. With community at the heart of their activities, the club strives to support and help members reach personal achievements. The power of community means that, at times, this goes beyond athletics. When Georgie Morrissey, LSA member, learnt that her friend and club member, Maggie, has a daughter (Penny), who lives with Cystic Fibrosis, she suggested the club host a charity event to support Penny and the wider CF community. What began as an offer of support from one friend to another, became a heart-warming display of community as the event grew from a local race to an ultra-marathon (65km) run by another member Paudie, with the involvement of many other clubs, runners and supporters.

From the humble beginnings of CFI, founded in 1963 by Bridie Maguire and Anne O’Dwyer, to where we are now, it has been this spirit of community, support and friendship within the CF community that has been the strength to get work done. It has been the arms to hold each other, a circle of healing and a circle of friendship for members. Bridie passed away in October 2023 but in a true display of how community comes full circle, her husband, Tom Maguire, attended the event with their grandson Julian, showing that Bridie’s legacy lives on.

In this Spotlight, we hear from those who were there, what this event meant to them and the impact it had.

Georgie Morrissey - a good friend with a great idea

I was having a conversation with friends about how the loss of a child violates acceptable normality of life. It was then that I heard that Penny, Maggie and Paul’s daughter, has CF. I hadn't much knowledge of CF then - I just thought, like others I'm sure, that it is a condition of the lungs. I learnt, of course, that it is so much more.

A short time later I asked Maggie if she would like for us to organise a fundraiser and raise awareness through our running club. Maggie thought it was a great idea. At our next meeting the LSA Events Team discussed it and agreed it would be a project for us. The LSA Events Team members are, Adrian Igoe, Steven Rice, Paudie Byrne, Maggie Healy, Nicole Michael, Georgean Morrissey, Dara Carr, and Sue Gore and they all set to work with planning the event.

We set a date for the Saturday, 13th April, the day after the official 65 Roses Day. Paudie Byrne is an elite runner and very much enjoys long distance running so he volunteered to run 65 kilometres to raise funds. Everyone on the LSA events team had a job to do and they all executed it wonderfully.

Advertising the event via social media and various WhatsApp groups we raised a huge amount of awareness and lots of other club members helped to make the fundraiser and the event grow. With the help of other club members, we discovered that Bridie Maguire, one of the co-founders of CF Ireland had lived in our little village of Donabate up until the end of 2023 when she passed away at a great age of 94. Her husband Tom who had a huge part to play in Bridie’s lifetime commitment to CF Ireland was still living in the village.

With the help of Tom’s grandson Julian Nolan, we were able to invite Tom to our fundraising event. It was truly a great honour for the club to have Tom there on the day. Tom told us the sad story of him and Bridie’s loss of 2 of their own children to CF and their son’s tragic accident. He also shared stories of Bridie traveling the length and breadth of the country to see families suffering with CF and about her true commitment to helping families.

Over the weeks of fundraising and the day of the event we discovered the magnitude and impact of the event to our wider community. We learned of so many families within our community of Donabate and Portrane and many others further a field in Rush and Lusk who have been affected by CF, we learnt about the development of the drugs and the research showin the benefits of running for people with Cystic Fibrosis.

Holding this event, seing the power of community and raising over €8000 has been a phenomenal and exceptionally emotional experience for all involved.

Paudie Byrne - The Marthon Man

The LSA Events Committee in the running club of which I'm a member, decided back in February to organise a charity fundraising event. The charity chosen was 65 Roses, the Cystic Fibrosis Ireland charity - as one of the Events Committee members (Maggie McCarthy) has a daughter (Penny) who has Cystic Fibrosis. Personally I knew very little about Cystic Fibrosis, other than it was an illness that affected your lungs and breathing.

I had recently run a 50k ultramarathon, in early February, so I had the running endurance built up, so when I heard that the charity was called 65 Roses I volunteered to run 65 km's in order to raise both funds for, and awareness of, Cystic Fibrosis. The plan was to include as many club members as possible, by getting them to run some of the 65km with me, and to share the fundraising

link far and wide among their families and friends. The response from the club was amazing, with a huge number people offering to run some of the distance with me, and donating to the fundraising page, and the total began to rise.

We chose Newbridge Park as the venue for the event, as it's local and it has a nice, reasonably flat 2.8km loop. And we chose Saturday April 13th as the date, the same weekend as the 65 Roses national fundraising campaign. My daughter Kate's confirmation was on the 12th, so that date was literally a non runner.

About a week before the event, an article was written in the Irish Independent about our upcoming event and that article was shared in every WhatsApp group from every sports club in Donabate (GAA, soccer, hockey, athletics) and in school WhatsApp groups, and neighbours WhatsApp groups etc, and suddenly both the awareness and the fundraising exploded!!

On Saturday April 13th the LSA club were out in force very early to set up a tent and table with water, bananas, gels etc for the runners, in front of Newbridge House, which became the hub and focal point of the support crew, although there were people offering support throughout the full 2.8km loop. I set off at 9am, with an initial support group of about 8 runners. Parkrun was taking place in Newbridge Park that morning, so there was great support from the start. As runners from parkrun finished, many joined me on my loops of the park. At one point we must have had 30-40 running in our group. As some people dropped out others joined in, ensuring we never had less than 5 or 6 running with me at any time.

The support from our club (LSA) was absolutely amazing. We had club members running, supporting, shaking buckets and collecting money, updating the club Social Media accounts regularly, educating other supporters or park visitors about CF, or handing me my drinks and food as I ran by.

We also had fantastic support from our friends, neighbours and sporting rivals from Lusk AC who turned out to run with us, as well as members from the local GAA club St Pat's, and members from local fitness and running group Mojo Fitness. We had several members of our community, who are not affiliated to any running club but came out to run or support on the day. There were lots of young people who ran with me too, which was great to see, and the teenage crosscountry team from LSA joined me for the last half hour.

Tom Maguire, husband to the late Bridie Maguire, one of the founding members of CFI, and resident of Donabate was also present on the day with some family members. Having that connection to the foundation of CFI here in our community was a huge inspiration.

Unfortunately Maggie, whose daughter Penny has Cystic Fibrosis, couldn't be with us on the day, nor Penny's brother Cian, but we were lucky enough to have

Maggie's sister Deirdre, her husband Paul, and Paul's sister join me on the run for a few laps, and Penny was also present to inspire, and to remind us all why we were doing this in the first place.

Overall the support from the community, and from the club on the day made it a truly memorable day. My wife and four daughters came down to support as well, as they always do for my runs, and one of the highlights for me personally was to have two of my daughters run the last two laps with me.

The actual run took a little over 6 hours but there was so much work put in by so many in the lead up and on the day, that should not be forgotten. The LSA Events Committee of Adrian Igoe, Nicole Michael, Dara Carr, Steven Rice, Sue Gore, Maggie McCarthy and Georgean Morrissey turned what could have been a small club event, that might have raised a few hundred Euro for CFI into a huge community event, that raised awareness of Cystic Fibrosis within the whole community and also raised over €8000 for CFI. They're the real heroes.

A few days after the run I was stopped in the street, while wearing my club jacket, by a young lady with two small kids. She asked me if I was the man who had run 65km for 65 Roses. She said that unfortunately she couldn't get over to support, but that her two kids have Cystic Fibrosis and that herself and her family were so grateful for what I and the club had done.

If I needed a reminder of how big an achievement we, as a club and community, had accomplished, then this was it....

Maggie, Paul and Penny McCarthy

When Georgie suggested a fundraiser for cystic fibrosis, I thought it was a great idea and was all in from the beginning. Our daughter, Penny who is four, has CF and it has been a rollercoaster ride from when she was diagnosed. Thankfully she is doing well at the moment. That said, there are so many considerations for her little life, from how a preschool will accommodate her condition to how we organise her treatments at home and appointments in the hospital. When the club offered to host a fundraiser for 65 Roses Day, of course it was a fantastic and welcome opportunity to raise money for CFI but also to raise awareness around the community.

Once LSA began there was no stopping them. Everyone had a job and soon the event had grown legs. I didn’t realise at the time just how big the event would become. Unfortunately I couldn’t be there on the actual day but Penny and my husband were, along with her siblings. Not only did the running community come out in force with clubs from all around the country joining in, but the local community all supported. We were featured in the national newspaper and I have to say the awareness and support blew me away.

But what I also really feel was so important for the day, was that Penny could see that so many people have her back, and are there to help and support her and others with CF in Ireland. That sense of community, the idea that people can come together and wrap themselves around a person and a cause, to me was worth every step taken by every person who joined in that day.

“We were honoured to attend the race at Newbridge Park in Donabate. It was significant for Tommy to witness firsthand the remarkable growth of the charity in its 60th year since inception and to see that Bridie’s legacy lives on. A heartfelt thanks to everyone who organized the run."

Julian Nolan, Grandson of Tom and Bridie Maguire, Co-Founder of CFI

SPOTLIGHT

Cahir - brother, son, fiancé, friend and overall nice guy by

Paul O’Hagan, Tyrone

Cahir is the youngest in our family. With his cheeky smile, charm and wit, he had my younger sister, Mother and Father and myself wrapped round his finger. We grew up sharing a bedroom for twenty years and had a great bond and relationship. He was an overall genuine nice guy and everybody that ever met him said the same thing. He was a joy to be around. On the 4th October 2023, life for my family and I as we knew it, was forever changed when Cahir, aged 25, from Clonoe Co. Tyrone, passed away.

From a very young age, Cahir spend a lot of time in the Royal Victoria Hospital for sick children. At 16, he was moved to the adult department in the city hospital and each hospital stay would have been for between 10-14 days. However, Cahir’s determined nature meant he led a full life in between hospital admissions and all his CF treatments.

Cahir had a great love for all sports but in particular Gaelic Football and Hurling. He played for the local clubs in Tyrone; Clonoe O’Rahillys and Naomh Colum Cille, but could only ever play for five to ten minutes at a time due to shortness of breath etc. But he was determined and loved sport, so he made a lot of sacrifices in his early teens to play. He never let CF stop or define him. I remember how for two years Cahir used an NG Tube passing nutrients into his system while he slept to try to keep his weight up and eventually, had a ‘feeding peg’ installed for night feeds. Unfortunately this meant he had to stop contact sports which was devastating for him.

Despite the undeniable difficulties brought about by CF and throughout all his sicknesses he always bounced back. During his secondary school years Cahir drew the attention of a young lady from Cookstown Co Tyrone. He went on to complete his degree in Real Estate in August 2021, graduating with a 2:1 honours. He worked so hard to get there at times taking extensions to make sure he completed the course. His graduation took place 5th April 2022 and he was in his element that day, loving every minute of it and bragging that he would have a full time job in social housing.

He and his girlfriend remained very much in love and together all this time, and being the determined fella he was, nothing was going to stop them from fulfilling their dreams. On the 18th April 2022 they announced their engagement. Cahir asked me to be best man – an honour I was

Not Forgotten: The 10%

more than happy to accept. A local priest based in Cookstown, agreed to marry the happy couple and their wedding date was set for 22nd June 2024.

However, in August 2022 Cahir became very unwell on a day out at Benone beach in Limavaddy. This resulted in a six week stay in hospital. With his lungs deteriorating and a lack of any suitable medication available, the only other option available was a double lung transplant. This of course is a major operation with a lot of high risk involved but Cahir was on 24/7 oxygen and living on a lung capacity of just 18% so he was sent for tests in Newcastle England and in March 2023 he was accepted onto the transplant waiting list.

On the 24th Sept 23’ Cahir caught a common cold. He fought it for a week in hospital before he was placed into ICU. Eventually his body couldn’t fight any longer and on the 3rd October 23’, Cahir passed away peacefully with all of his family around him. We made the decision to ask the priest who was to marry Cahir and his fiancé, to lead the funeral mass - this would have meant so much to Cahir.

Inspiration

For me Cahir was the biggest inspiration and motivation, he was a complete warrior and battled every single day of his life and he never ever complained. He always put other people first no matter how ill or sick he was. There’s a saying that the youngest looks up to the oldest in every house but I can say that was the opposite case in our house. He was a gift, he was such an inspirational figure to us all. He was one in a million.

The 10%

By sharing Cahir’s story, myself and my family want to keep Cahir’s memory live. There has been so much coverage and positive news stories about the advancements in treatment helping 90% of people living with CF prolong and improve their life. But due to the strain of CF that Cahir had, he fell into the 10% of the CF population that currently have no access to the lifesaving drugs. We want to raise awareness of the 10% of the CF community who still have no access to the modulator therapies..

Cahir and his story is proof that as much as treatments have advanced and have come a long way, in the year 2024 there is still much more work to be done on this Island and further afield so that everyone living with CF has access to the lifesaving drugs. It is estimated that around one in every 19 people could be a carrier of the CF gene and those who are already affected by the condition here on this Island be it North, South, East or West know that CF doesn’t know nor care about ‘borders’ or ‘boundaries’. The battle continues for all patients with CF have access to these types of drugs. Sharing that Cahir was one of this 10% group is so important and as a community we need to stand and speak as one so we together can advocate for the drugs for the 10% and to make sure #NoOneIsLeftBehind.

The CFRI

Cystic Fibrosis Registry of Ireland

An update on CFRI research work (ECFS edition)

Alongside regular data collection & annual reporting, CFRI continue to be involved in & collaborate on several external research projects as well as building our internal programmes of research. Some of this work was on display at the European Cystic Fibrosis Society Conference in June; CFRI had 2 posters selected to be displayed at the conference. Paul & Robyn describe this work below.

Describing trends in cystic fibrosis transmembrane conductance regulator modulator (CFTRm) use in people with cystic fibrosis (PwCF) using real-world Cystic Fibrosis Registry of Ireland data

Paul: “Our aim is to gain an understanding in a real world setting of how CFTRm use changed over time and explore how many people have switched/stopped modulators and the reasons behind doing so. We will use this scoping study as the basis to plan future longitudinal studies for real world effectiveness of CFTRm’s. This scoping study has grouped PwCF into 5 cohorts based on differing CFTRm use. Identifying the different groups allows CFRI to do future analysis on modulators, and to assess differences seen in a real-world setting.

We hope to:

• Compare health markers in those who were never prescribed a modulator versus those who had a history of using modulators before starting a highly effective modulator (HEMT).

• Look at a global project to track health markers of those who have stopped HEMTs. There were 1,359 PwCF who were alive, not lost to follow-up and not on a clinical trial at the end of the study period stratified into the 5 cohorts. The largest cohort was PwCF switching to a HEMT from another CFTRm 684 (50%). These results will help plan future longitudinal studies on the use & effectiveness of CFTRm.”

Developing a study protocol to assess the feasibility and acceptability of implementing Patient Reported Outcome Measures (PROMs) in the Cystic Fibrosis Registry of Ireland

Robyn: “There is increasing interest in using Patient Reported Outcome Measures (PROMs) in CF research as well as in patient registries. PROMs are outcome measures which capture how an individual perceives their own physical health/mental health/wellbeing/quality of life & can act as really good indicators of

the impact of CF and changes in CF treatment on the lives of people living with CF. However, we don’t know too much about how to collect data on PROMs in patient registries. Some registries have started collecting this data, e.g., in Australia & in the UK, and we are learning from their experiences. This study aims to look at how we might go about implementing PROMs in the Irish CF registry. We held some initial conversations around this topic with patient and registry representatives to get a sense of some of the questions we should address before implementing a PROM(s) pilot study. Questions we need to address centre around:

1. Practical & technical implementation issues e.g., how often should we collect PROMs and what technology can we use? What PROMs will be useful & for who?

2. Meeting everyone’s needs – we must ensure that our choices for the registry not only meet our needs, but more importantly the needs of patents in understanding/managing their CF & for clinical teams in supporting clinical decision-making/practice.

3. Making sure we’re all on the same page – ensuring that we meet & learn from colleagues in international registries will be key to informing our approach.

The next step in this project is to apply for ethics permission to carry out a phase of work to address the above questions & map current practice & attitudes towards PROMs in Ireland.”

What else have team CFRI been up to?

European Cystic Fibrosis Society (ECFS) Conference 2024, Glasgow

Some of the team attended the ECFS annual conference which was held in Glasgow. Attending the conference is a fantastic opportunity for us to learn about the latest CF research, meet with our colleagues in the international registry community & also to present CFRI research. This year, 2 CFRI posters were displayed at the conference (see our summaries above!). We always come back with lots of new ideas & connections to build on & strengthen our work.

Future of Registries Taskforce (FoRT)

We continue to lead a multi-stakeholder group who are focussed on ensuring the sustainability of patient registries across all disease areas in Ireland. We have had 3 meetings so far & will now draft a document outlining our recommendations. The group has learned from experts in data protection, European data regulations & from the HSE.

Want to learn more about what CFRI do?

If you would have any questions or would like information about participating in the registry, please contact your CF Centre 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 or via our website. We post updates on our work and on the exciting projects we are working on. Scan the QR code below to learn more & access the latest data & reports!

RESEARCH

Testing for bacterial genes –Can it help find early infection in Cystic Fibrosis?

We are carrying out a study in the Children’s CF unit in Galway University Hospital (GUH) to develop tests for bacterial genes in samples from children with CF. We hope that testing for bacterial genes will help find bacteria causing infection in the lungs of people with CF before they can be found with the methods that are generally used at the moment. I (Dr Zina Alfahl (Lecturer in Bacteriology, University of Galway) am leading the study with support from Professor Martin Cormican (Professor of Bacteriology, University of Galway & Consultant Microbiologist, Galway University Hospital) and Dr Mary Herzig (Consultant Paediatrician, Galway University Hospital. We are able to do this study with the support of parents and children who attend the CF clinic in GUH who agreed that we can use leftover material after their usual tests are complete. Thanks also to the staff of the Microbiology Laboratory in Galway University Hospital for storing the leftover material and preparing it for use in the study.

Understanding New Advances in Detecting Lung Infections

CF affects the movement of salt and water in and out of cells, leading to problems with glands that produce mucus, tears, sweat, saliva and digestive juices. Normally, these secretions are thin and slippery, helping to protect the body's tissues. However, in PWCF, these secretions become thick and sticky, making it difficult for them to move through the body. This can clog tubes, ducts and passageways, and also create an environment where bacteria can thrive. Now there are treatments that can correct a lot of the underlying problem with movement of salt and water for many people but they don’t work for everyone and do not solve all the problems.

Why Is This Important?

The thick mucus in PWCF can lead to lung infections that are very difficult to clear. Long-term infection can cause inflammation, lung damage and breathing difficulties. Although CF affects many parts of the body, it is usually the infection and inflammation to the person’s lung that causes most harm. Protecting the lungs of children with CF from infection and finding and treating any bacterial infection before it gets firmly established is therefore a critical part of protecting the health of people with CF.

The Challenge of Detecting Harmful Bacteria

Many types of bacteria normally live in the mouth, nose and throat. These include Haemophilus influenzae and Staphylococcus aureus. Pseudomonas aeruginosa is a bacteria that is very common in the environment, and it can also live in the mouth and throat. When these bacteria stay in the nose and throat, they usually do no harm. In people with CF bacteria from the mouth and throat can spread more easily into the lower airways and lungs. In the lungs, they can cause infection and inflammation. This can damage the lungs and this damage makes it easier for more infection to follow. Over time this causes increasing breathing difficulties.

Today, most labs test for harmful bacteria in the lower airways by growing bacteria from samples. These tests are useful, but they are not perfect. The best samples come directly from the lower airways. Samples from the upper airways are a mix of fluids from the upper and lower airway so it is hard to tell if the bacteria in the sample came from the mouth, throat or the lung. Sometimes bacteria that grow in the lung may not grow in the lab. New treatments such as Kaftrio help to reduce fluids in the airways and make them more normal. This has big benefits but because there is less fluid in the airways it is harder to get a good sample to test for bacteria.

A New Approach: Testing for bacterial genes

In recent years, tests that find bacterial genes without the need to grow the bacteria have become more common. These genetic tests are already used a lot to test for bacteria that cause diseases like tuberculosis as well as many other infections. The PCR test you will have heard so much about during COVID is a test of virus genes. Testing for genes by PCR is often faster than waiting for bacteria to grow and can find bacteria that will not always grow in the lab. Our research aims to use these advanced genetic methods to test for bacteria that cause infections in the airways of people with CF.

Our first step is to develop a test method that works well. The next step will be to see if testing for genes can find infection earlier than the usual method of growing bacterial. The methods we are using do not look at the genes of the person. There is genetic information from the person in the sample but because we use a method that targets the bacterial genes, we do not produce any information about the human genes.

How Will This Help?

We hope that this could improve tests to find infection and help start treatment earlier. Early treatment of infection helps protect the lung and means less time in hospital. We also hope that genetic testing will work better on the smaller samples that come from the airways of people on the new treatments.

Would you like to be involved?

This project is only possible with the support of children with CF and their

Dr. Zina Alfahl is a Lecturer in Bacteriology and a member of the Centre for One Health at the University of Galway, affiliated with the Antimicrobial Resistance and Microbial Ecology Group. She completed her PhD in Pharmacy at the School of Pharmacy, Queen's University Belfast, focusing on determining clinical and microbiological endpoints in chronic airway diseases. Dr. Alfahl holds an Associate Fellowship of the Higher Education Academy (AFHEA) and currently teaches Bacteriology at the School of Medicine. Her research interests focus on molecular diagnostics to detect bacterial pathogens and antimicrobial resistance and stewardship. She has presented her work at several international conferences and has received multiple awards and grants for her research.

parents who have agreed that we can use the left-over material from their sample after the usual tests are finished. We are looking to set up an advisory panel of patients and public to make sure that we take the view of the people most affected in the way we carry out the study and the way we report our findings. If you would like to help please get in touch.

If you would like to know more about the study please visit www.cfireland.ie

Finally, we would like again to thank the fantastic participants and their parents/guardians, and everyone in the children’s CF clinic and the Microbiology Laboratory in GUH and also Dr Louise O’Connor in University of Galway. We would like to express our heartfelt thanks to all involved in this work so far and we hope we can let you know how the project works out in the next year.

The 10% - Research Updates

CF is regarded as a rare disease in Ireland. Many people with CF in Ireland fortunately now have access to CFTR modulator therapy and feel some level of health benefit from these therapies. There remains approximately 7% of our CF population whose CF gene variants are less common or ultra-rare and their CF gene combination mean that the currently available CFTR modulators either scientifically can not work for them or their CF genes are so rare that these have not been tested in CFTR medication clinical trials.

Globally, researchers refer to these individuals with CF collectively as the 10%. Research focus remains very much committed to the 10%. CFI continues work as part of CF Europe and their efforts to target research for the 10% through the HIT-CF Europe project.

The HIT-CF Europe project investigates organoid testing – where a rectal biopsy can be taken from those with ultra-rare CF variations. The biopsy is used to grow up organoids in the lab, like a cell culture except they grow to form a mini organoid structure. Researchers can then use these organoids to test the activity of existing medications. So while individuals with ultrarare CF variations may not have been included in clinical trials for CFTR medications, the trial compounds can be tested on organoids of individuals to identify if any available medicine produces a positive effect on CFTR activity. HIT-CF then hopes to enrol small numbers of those with lab-based responses into clinical trials.

Good news now - the first CF participant started in the CHOICES Trial on 03rd June in the Netherlands. This trial is a randomised double-blind crossover trial to asses a new triple therapy CFTR modulator from Fair Therapeutics called Diponecaftor- consisting of a CFTR potentiator called dirocaftor, a CFTR corrector called Posenacaftor and a CFTR amplifier called Nesolicaftor. The trial will enrol 52 participants in Europe.

Beyond this, there is also the CFTR variant agnostic mRNA (messenger RNA) therapy currently in clinical trials with more trials planned. This approach means the mRNA therapy can work regardless of whatever CFTR variants and individual with CF may be born with including any ultra-rare CF variant. The mRNA therapy does not change your DNA, but it will produce normal CFTR protein in the target delivery site in the body- in the lungs when delivered by nebulised inhalation.

As part of HIT CF Europe- Recode therapeutics will commence clinical trials this year on their mRNA therapy in France, Netherlands and UK. Youc an read more on HIT-CF Europe at www.hitcf. org.

Vertex have also commenced their own mRNA therapy clinical trial Vx522. Details can be found on www.vrtx.com/our-science/pipeline/cystic-fibrosis/

Bridging Connections: Patient Advocacy in Medical Science Education

Dr. Aine Balfe, Lecturer in Epidemiology and Medical Microbiology

Sinead Feely, BSc. Medical Science Year 2 Student & Katie Kells, BSc. Medical Science Year 2 Student.

School of School of Biological, Health, and Sports Science, TU Dublin

The Medical Science Team at the School of Biological, Health, and Sports Science, TU Dublin, was delighted to host Rory Tallon, an advocate from Cystic Fibrosis Ireland, who spoke to our Medical Science students. As this edition of Spectrum is centred around the theme of 'Connections,' we at TU Dublin recognise the importance of linking clinical training with patient advocacy.

Patient advocacy brings a crucial dimension to our medical science programmes, bridging the gap between theoretical knowledge and real-world application by emphasising patient-centred care. Through patient advocacy, students gain Dr Aine Balfe insights into the patient's perspective, fostering empathy, ethical practices, and accountability, all essential for effective healthcare delivery. Additionally, patient advocacy ensures that future healthcare professionals prioritise patient rights and well-being, addressing issues such as informed consent, privacy, and equitable access to healthcare.

Direct engagement with patients and their advocates shapes students’ perceptions of their future roles in healthcare. It is crucial for students to recognise that behind every test result generated by a medical scientist is a person waiting for answers. Each piece of data represents a real person, often facing significant health concerns. Understanding this connection underscores the importance of accuracy, diligence, empathy and compassion in their work-qualities essential for any healthcare professional, particularly for medical scientists who aren’t traditionally patient-facing. It reminds medical scientists that their contributions have a direct impact on the lives of real people.

Rory spoke to our Year-2 Medical Scientist students and first-year Higher Diploma Medical Science students, who are preparing for their clinical placement training year in diagnostic laboratories commencing in September. Recognising this as an ideal moment in their practice-based education, our team has embedded the topic of patient advocacy in our programme curriculum. We were delighted to link with Cystic Fibrosis Ireland as Ireland has the highest incidence rate of Cystic Fibrosis per capita in the world, making it highly relevant both personally and professionally for our students. Medical Scientists frequently handle samples from people with CF across microbiology, biochemistry, haematology, immunology, pathology, and blood transfusion, creating a natural connection.

Rory’s talk provided an invaluable opportunity for students to gain insight into the lived experiences of people with CF, offering a first-hand perspective often missing from traditional classroom learning. Rory shared personal stories about the daily challenges and triumphs faced by individuals with CF. His accounts highlighted

the physical, emotional, and social impacts of CF, offering students a comprehensive understanding of what it means to live with a chronic illness. These first-hand accounts are crucial in education as they provide context that purely scientific or clinical data cannot. By putting a human face to clinical data, Rory encouraged students to consider the broader implications of their work, recognising that a person is at the end of each laboratory result. Through Rory’s narrative, students learned to appreciate the importance of empathy in building strong patient-provider relationships and delivering high-quality care.

One of the core messages of Rory’s talk was the importance of maintaining a patient-centred perspective in healthcare. He emphasised that understanding the patient's journey is vital for making informed and compassionate healthcare decisions. This perspective is not only about treating the disease but also about recognising and addressing the individual needs and circumstances of each person with CF. Rory’s stories illustrated how medical decisions and policies can significantly impact the lives of people with CF, underscoring the need for our future medical scientists to be empathetic and responsive to the human side of medicine. By integrating these elements, we aim to produce medical scientists who are not only skilled in their technical domains but also deeply connected to the patient communities they serve.

The Students Perspective' - Sinéad Feely and Katie Kells

My name is Sinéad Feely, and I’m a member of the second year medical science class group that had the privilege of hearing Rory speak recently about Cystic Fibrosis and his personal experience living with this condition. This seminar opened my eyes to the impact this condition has on people and highlighted the influence of the services provided by medical scientists on a patient. Unlike the majority of students in the class, I had a general grasp of how CF affects a person's life because I have a personal relationship with someone who has the condition and have witnessed how it affects their day-to-day activities.

My name is Katie Kells and I am a second year student from the medical science class Rory spoke to in April. Listening to Rory has improved my knowledge of CF greatly; not only in relation to its genetic background and treatment, but also in relation to the impact it can have on the daily lives of people with CF. I had limited knowledge of the disease before Rory’s visit, nor had I ever met a person with CF, so it was an amazing opportunity to meet a person with the CF and discover how much it can affect one’s day-to-day life.

As a class group, we were uncertain of what to expect from this talk but had heard from the previous year group of Rory’s talent in captivating his audience whilst sharing informative knowledge along with his own personal experiences. We anxiously anticipated the presentation with this view, and we were not disappointed. Rory shared the scientific, genetic and pharmaceutical background to Cystic Fibrosis, which of course interested us all, due to our keen love for science. He then transitioned to share his personal journey with CF and described the ins and outs of daily life living with this condition. He succeeded in not only educating us about CF, but also in breaking down the barrier that can separate medical scientists from patients. By the end of the talk, there wasn’t a dry eye in the lecture hall, and my peers and I left the room with a deep respect and connection to Rory and his story.

Sinéad Feely

Katie Kells

This talk was extremely moving and reminded the class of the impact that the work of medical science and the hospital lab has on a person. Hearing the personal side of Rory’s talk reminded us that there is a real person behind every test ordered in the lab and this inspired us to give even more care and attention to our work. With the large workload and busy environment, it can be easy to forget this, when all we can visually see is a number and barcode. The talk really increased our awareness of the importance of correct results in a timely manner. Rory highlighted that each person with CF has different obstacles to overcome and requires different therapies and treatments. This is relevant to all conditions and illnesses and is the reason why it is important to ensure each patient receives accurate results as soon as possible to cater to their unique needs.

In conclusion, the talk given by Rory on living with Cystic Fibrosis was profoundly enlightening and deeply moving. His personal narrative not only highlighted the daily challenges faced by individuals with this condition but also underscored the resilience and strength required to navigate such a demanding life journey. Rory inspired our medical science class to strive to achieve perfect results to give the best care possible to patients.

The CF Advocate Perspective - Rory Tallon

As CFI Advocates we are regularly invited out to a workplace, a school, a third level college or organisation to explain the nature of CF and share the personal lived experience of CF to help increase awareness of CF and the work of CFI and share the CF perspective in discussions.

Within the last few months I have spoken to third level students such as Pharmacy students at Trinity College, Medicine and Science students at UCD and Biomedical Science students at UCC. I have also addressed focus groups at a Rare Disease Ireland Companies Roundtable and a CSL Seqirus influenza vaccine round table discussion- to share the patient perspective at these discussions. We also attend and share the CF perspective at discussions with other advocacy and patient groups such as Disability Federation Ireland.

Most recently I was invited to speak to a group of Medical Laboratory Science students at TUD at their Grangegorman Campus in Dublin. These students will be the future scientists analysing our samples in our hospital labs. What a privilege - to be able to set a context to their work, to help them appreciate there are people at the other end of the samples they will be handling and that the results of their analyses matter very significantly to us.

So my invitation request was to deliver an awareness overview of CF with a focus on practical experience and any relevance of medical laboratory science in the care and management of CF. I did my best. I talked through population statistics from our fabulous CF Registry of Ireland annual reports, some examples of laboratory markers in the care of CF and explained the wide spectrum of CF presentation and severity across individuals with CF and over the course of a lifetime with CF. I finished up by sharing aspects of my own personal journey living with CF and challenges I have personally faced. All just a day at work for me, though sometimes recounting your personal journey can be emotionally demanding. What I did not expect was how attentive and how moved these students would be hearing about CF and hearing a patient’s personal experience. I was truly touched that the students walked up to thank me personally afterwards. Moments like this make you truly realise the value in your work and the significance of the patient voice.

A big hello from 3CF down in Corks’ adult CF service. Since our last update at Christmas, we have had some exciting updates that we would like to share with the CF community.

Service Update

We are delighted to say that since our last update, our multidisciplinary team have now been joined by two clinical psychologists, Dr Ciara Quigney (full time) and Dr Vicky Matthews (part time). Since joining our service, both Dr Quigney and Dr Matthews have launched their psychology workshops which are available to all PwCF attending the Cork Adult service. If you are interested in learning more about psychology and these workshops, please click here: https://3cf.ie/education.php?c=psych A very big welcome to Dr Quigney and Dr Matthews, we are delighted to have you on the team.

ECFS Update

This year the ECFS conference was held in Glasgow. It was a brilliant conference with lots of exciting discussions and ideas. This also marks the first ECFS conference where a 3CF representative from psychology was able to attend and bring back some great insights and learnings to Cork. From our own team, we had a number of presentations:

Prof Barry Plant had 3 presentations, including: “Late complication, prevention, and management – starting from birth and after…”

• Dr Hisham Ibrahim presented: “Long-term real-world outcomes of CFTR modulation with ivacaftor in adult CF patients with the G551D mutation; 8 years single centre real-world study”

• Dr Kevin Deasy presented: “Innovations in action: advancing microbiology methodologies in CF clinical care”

• Dr Noreen Tangney (specialist registrar) had a poster presentation: “Long term indicators and clinical outcomes in sustained dose reduction strategies for ETI: a case series”

• Dr Emily O’Reilly (specialist registrar) had a poster presentation: “Safety, clinical effectiveness, and changes in systemic cytokine profiles in solid organ transplant recipients post 6 months of ETI: A case series”

• Dr Tamara Vagg hosted the first Telehealth for Cystic Fibrosis care (THCF) working group meeting.

Following on from the Telehealth for CF working group meeting, an online “townhall” meeting will be held in Ireland to understand and listen to the experiences and opinions of all those PwCF and caregivers in Ireland. In this townhall meeting, we are inviting anyone with CF, their families, their friends, their caregivers to come and share their thoughts on telehealth. The aim of this townhall meeting is to include the voice of PwCF and what they truly think about telehealth in a best practice guidelines. If you have never used telehealth before, you are still more than welcome to come and share your thoughts we need to hear from non-telehealth users as much as anyone else. This townhall meeting will be held over the summer and we hope to have as many

from the Irish CF community as possible. More details will be made available on the working group website in the coming weeks: https://www.ecfs.eu/telehealth.

Recent Awards

We would like to welcome back our own CF pharmacist Sarah Twohig who was away on maternity leave and returns back to her clinical post. In addition, she has returned to her professional doctorate that explores the role of the CF pharmacist within CF care. We are thrilled that Sarah was accepted for this doctorate and we look forward to working with her on this exciting bit of research.

Following on from Dr Tamara Vagg’s recent research within telehealth, Tamara successfully received a Vertex

Professor Barry Plant presenting at ECFS

ECFS Group Photo

Dr Kevin Deasy presenting at ECFS

Dr Hisham Ibrahim presenting at ECFS

Dr Noreen Tangey presenting at ECFS

Dr Emily O’Reilly presenting at ECFS

Research Innovation Award titled “The CF Telehealth Toolbox: investigating and developing digital literacy and learning tools to enhance CF telehealthcare for people with CF, caregivers, and the MDT”. Tamara’s work focuses on the digital skills both PwCF and MDTs need to perform telehealth visits safely and with confidence. A lot of this research will be done with Public Patient Involvement, and if you are interested in co-creating this toolbox, please reach out to Tamara and she will be happy to chat with you more: tamara.vagg@ucc.ie

Other News

In June, Professor Peter Middleton, the head of the Westmead, Sydney, Australia CF service visited 3CF and presented: “CF in the 21st century - the future with modulators". Prof Middleton previously visited 3CF back in 2018 for inspiration on the new state of the art CF facility that was being developed back in Syndey. We are delighted to see that during Prof Middleton’s recent visit, that as of 2023 the Syndey CF centre is now up and running (and looks very similar to our own inpatient facility). Thank you Prof Middleton for a wonderful visit and fantastic presentation.

Thank you

From all of us here at 3CF we would like to say a sincere thank you to CFI for allowing us to share these updates with the CF community through the Spectrum newsletter. Also thank you to CFI for its continued support of our clinical and research program. Finally, as always we would like to acknowledge all the people with CF and their families/caregivers for their continued engagement and support with our research and service.

The first THCF Working Group Meeting at ECFS 2024 in Glasgow

Prof Middleton visiting 3CF in June 2024

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.

September 8th – Head2Head Walk

On Sunday, 8th September, our 12th Annual Head2Head Walk takes place from Howth Head to Bray Head. 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 by Luke Kennedy, Mary McCarroll, Jem & Lorraine Downes and Glen McDonnell.

You can avail of our Early Bird discount by REGISTERING NOW at www.cfireland. ie or via the QR code before July 31st. So don’t delay, register now to avail of the early bird discount to secure your spot!

We are really looking forward to meeting everyone in Howth on Sunday, 8th September! For further details, call us on 01 4962433 or email fundraising@cfireland.ie

September 12th to 15th – Malin2Mizen Cycle4CF

Registration is now closed for Malin2Mizen 2024. You can register your interest for our Malin2Mizen Cycle4CF which will take place in September 2025 on our website at www.cfireland.ie.

Good luck to all our cyclists and we look forward to supporting you over the course of the four days!

Please come out and support our cyclists along the route which we will publish each day on our Social Media

as we journey from Donegal down to Cork. For any queries, please email fundraising@cfireland.ie or phone us at (01) 4962433. You can register your interest in Malin2Mizen Cycle4CF 2025 which takes place in September next year on our website at www.cfireland.ie

September 17th to 24th - CFI International Walk in Andalucia

Join our Cystic Fibrosis Ireland International Walk for 2024 - Andalucia awaits!

Embark on an extraordinary journey through Andalucia, featuring Mijas and Grazalema. Renowned for its vibrant culture and breathtaking landscapes, Andalucia offers walkers an unforgettable experience. Mijas, a charming hillside village overlooking the Mediterranean, adds its unique flair to the adventure. Grazalema, nestled within the picturesque Sierra de Grazalema Natural Park, provides stunning vistas and charming village streets to explore. Discover the rich history, culture, and natural beauty spanning thousands of years as you traverse these enchanting destinations. Wander through diverse landscapes, from rolling countryside to rugged coastlines, suitable for walkers of all abilities. Join us and explore Andalucia's wonders on this incredible journey.

We have a very limited number of places left for this walk, so if you are interested in joining, please contact our fundraising team at fundraising@cfireland.ie or phone 01 496 2433 as soon as possible.

October 27th - Irish Life Dublin Marathon

The Irish Life Dublin Marathon returns on Sunday, 27th October. Unfortunately, all our places for the Irish Life Dublin Marathon are SOLD OUT!

If you have secured a place in the Marathon and would like to be part of the Cystic Fibrosis Ireland Team, register your interest NOW on our website at www.cfireland.ie. We will contact you and provide you with your Cystic Fibrosis Ireland shirt for the day and fundraising pack!

Note: We are taking registrations of interest for the Irish Life Dublin City Marathon 2025 on our website at www.cfireland.ie and will announce details re access to guaranteed places soon, keep an eye on our Social Media for further details. For further information, please contact us by email fundraising@cfireland.ie or call (01) 496 2433.

November 3rd - TCS New York City Marathon

Another hugely popular event, the New York City Marathon 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 5 city boroughs (Staten Island, Brooklyn, Queens, The Bronx and Manhattan). We can provide you with a 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. If you would like any further information please email fundraising@cfireland or call (01) 496 2433.

For any enquiries, please email fundraising@cfireland.ie or by phone at (01) 4962433.

December 6th: Christmas Jumper Day 4 CF

At last, a good reason to wear your favourite Christmas Jumper to work!

On Friday December 6th, Cystic Fibrosis Ireland are asking organisations big and small to support Christmas Jumper Day 4 CF by wearing their favourite Christmas Jumper to work. Love them or hate them, they are here to stay! Whether you’re in the ‘Seasonal Christmas Jumper Club’ or the ‘Bah Humbug Brigade’, we ask you to please support people with Cystic Fibrosis in Ireland on Friday, 6th December – Christmas Jumper Day 4 CF!

1. To take part, all you have to do is follow five simple steps;

2. Ask your staff or colleagues to wear their most seasonal looking Christmas Jumper to work on Christmas Jumper Day 4 CF - Friday 6th December, in return for a €5 donation to support people with Cystic Fibrosis in Ireland.

3. Bah Humbug Donation! If someone does not wear a Christmas Jumper on the day, ask them to make a donation of €10 in return for our coveted Bah Humbug badge

4. Ask your company if they are willing to match the monies raised!

5. On the day, make sure to take lots of photos!

6. Tag us in all your social media posts using @cfireland don't forget the hashtag #ChristmasJumperDay4CF.

Don’t be left out in the cold and red nosed this Christmas Jumper Day 4 CF.

You can register now by scanning the QR code or visiting our website CFIreland.ie. Once registered, we will contact you to organise delivery of your Christmas Jumper Day 4 CF essentials pack. For further information, please call (01) 4962433 or email fundraising@cfireland.ie.

April 27th, 2025 – TCS London Marathon

The London Marathon is one of the most iconic and globally renowned marathons in the world and takes place on Sunday, 27th April, 2025. Places are now available for the London Marathon 2025 with our partner Sports Tours International. Register your interest now at www.cfireland.ie

If you would like to take part in the London Marathon next year for Cystic Fibrosis Ireland, get in touch and we will contact you to confirm next steps. If you would like any further information please email us at fundraising@ cfireland or call (01) 496 2433.

All Year Round - International Treks

Cystic Fibrosis Ireland facilitate treks to Kilimanjaro, Machu Picchu and Everest Base camp each year and there are a number of treks running in 2024.

Taking part in of one of Cystic Fibrosis Ireland's International Challenges could be the adventure of a lifetime that you have being looking for and the perfect fundraising opportunity for adventurous spirits!

To find out more, please register your interest now at cfireland.ie.

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:

65 Roses Day

Cystic Fibrosis Ireland would like to say a huge thank you to all our volunteers who supported our national fundraising day - 65 Roses Day - on Friday 12th April. A massive total of €305,742 has been raised exceeding our €300,000 target for the campaign. We are so grateful to all our volunteers who sold roses across the country in Dunnes Stores, shopping centres, schools and workplaces.

Well done and thank you to everyone who organised a 65 Roses Day Challenge which included a 65k Ultra Marathon, a 65 hour fast, a 65 cup cake fundraiser, 6.5k walks and runs and many other 65 themed events.

65 Roses Day continues to grow each year and this is made possible with the help of all of our volunteers and branches. We look forward to making 65 Roses Day 2025 even bigger and better again.

Vhi Women’s Mini Marathon / One in 1000

A huge congratulations to everyone who joined our One in 1000 Team to take part in the Vhi Women’s Mini Marathon on Sunday, 2nd June.

Participants joined us in the D2 Harcourt hotel where we got warmed up before the start of the 10k. Afterwards everyone joined us again as we relaxed with some music, food and good company.

Thank you to our sponsors: Ger Farrelly - Spar Leeson St, The Fruit People, Brodericks Brothers and Fyffes for providing the refreshments which went down a treat! Also a massive thank you to Sylvia Ferguson from Sylviayoga.com for leading the fabulous warm up session which was so enjoyed by all.

Thank you again to everyone who took part and if you need any help lodging your fundraising monies please contact us on 01 4962433 or email fundraising@cfireland.ie. Don’t forget to share all your pictures on your Social Media #Onein10002024 and tag us @cfireland!

Duleek 10k Remembrance

A massive thank you Anne Noone and the organising committee for the Duleek Cystic Fibrosis 10K Remembrance Run which took place on Sunday, 28th April.

Most importantly, thank you to everyone who took part in the wonderful event with over €21,000 raised to date and monies still coming in.

TCS London Marathon

We would like to to say a huge thank to Dave Marshall for taking part in and successfully completing the TCS London Marathon on Sunday, 21st April on behalf of Cystic Fibrosis Ireland and raising a massive €1,402we really appreciate this!

Wildfire Guitar Club – Concert Series

We would like to say a massive thank you and congratulations to WildFire Guitar Club who raised €6100 for their concert series which took place in Cork Arts Theatre in May. Based in Douglas, Cork, the group, made up of Eamon Dwyer, Alan Morris, Aoife Hurley, Clive Brooks, Greg McCarthy, Karl O’Flynn, and Patrick Cotter has held annual fundraisers for charity since their founding in 2017. Wildfire would like to acknowledge the support from their loyal fan base and sponsors, including Cork Arts Theatre, Barrys of Douglas, and Carrigaline Court Hotel.

Lambay Sports Athletics Donate & Portrane

A huge thank you to Paudie Byrne who recently presented a cheque to CFI for €8,008 from his 65 Roses Challenge, a 65k ultra marathon. He gave us the following feedback on behalf of his club LSA Donabate & Portrane including Margaret Healy a fellow club member and parent of a child with CF.

"We'd like to say a huge thank you to everyone who donated, who ran on the day, who volunteered on the day, who shared the donations page link, and who supported the event in any way. This really was a club and community effort. Hopefully the funds raised will help make a difference."

Clondalkin Motorcycle Club

A huge that you to the Clondalkin Motorcycle Club who raised a fantastic €1500 from their charity motorcycle run on Sunday April 7th. Clondalkin Motorcycle Club would like to thank all their members and supporters who came out on the day for such a good cause.

Pictured presenting the cheque to Fergal Smyth on behalf of CFI in Newbridge Park, Donabate are Margaret and Paudie.

Pictured here are the group presenting their cheque to CFI board member Jill Dorgan

Pictured below are some of the members of the club, Including chairman Gavin Kelly, presenting their cheque outside of CF House

C O F F E E & C H A T

TO OTHER MEMBERS

This August, we are hosting a series of events for the following:

PARENTS OF CHILDREN AGED 0 TO 4 WITH CF

PARENTS OF CHILDREN AGED 0 T WITH CF

PARENTS OF CHILDREN WITH CF

STARTING PRIMARY SCHOOL

PARENTS OF CHILDREN WITH CF STARTING SECONDARY SCHOOL

PWCF STARTING THIRD LEVEL

EDUCATION

NAVIGATING THIRD LEVEL WITH CF

Spectrum - Summer 2024

SPECTRUM

CONTENTS

LATEST NEWS

CF Outpatient Department Galway University Hospital

Creon

August 'Coffee & Chat' Online Events

Working Groups

Meet the New Members of the CFI team

Stewart Lee - Office Manager

Emma Wallace - Member Services and Advocacy Senior Coordinator

Sarah Duggan - Fundraising Development Coordinator

Beyond the Pale & FFGWCF!

Your CF guide to festivals

Hydrate & Salt

Anti-Bacterials

Plan for EVERYTHING!

Re-Cap on the Green Paper on Disability Reform

What was the Green Paper on Disability Reform?

Listening to the Concerns of our Members and Others

The ‘FAIR Approach’

Cost of Disability Payment

Lack of Flexibility

Support and Accessibility

Lack of Inclusion and Engagement

The End of the Green Paper…

What's Next

Organ Donor Awareness Week

MEMBER SERVICES

Member Services Team Update

Did you know...

Listening Service

Letters of Support

touch

The Youth Advisory Panel

Good luck to the Irish Transplant Football Team

Travel Diary of a PWCF: Postcards from Paradise

South Africa

Asia

New Zealand

South America

Top Tips for Travel

Your medication supply…

Taking your meds with you?

Nebulisers

Hydration

Vaccines and Insurance

Do your homework

CF Team

CFI Travel Resources

Brendan's Doodles

Review of Wonderdrug - 10/10

ECFS 2024 - CONFERENCE

ECFS Conference Report

CONFERENCE REPORT

Presentation from HIT CF and Choices Trial

Expanding the Knowledge of CFTR Modulators

Genetic Therapies: Getting Them Into The Clinic

Getting Gene Therapies From Bench To Bedside

Safety and Efficacy of New Phage Therapies for Pseudomonas Aeruginosa BX004 - A

Using AI In Detecting Exacerbations

The Power of Community

The Power of Community

Paudie Byrne - The Marthon Man

Maggie, Paul and Penny McCarthy

SPOTLIGHT

Cahir - brother, son, fiancé, friend and overall nice guy by

Not Forgotten: The 10%

Inspiration

The 10%

The CFRI

Cystic Fibrosis Registry of Ireland

An update on CFRI research work (ECFS edition)

What else have team CFRI been up to?

Future of Registries Taskforce (FoRT)

Want to learn more about what CFRI do?

RESEARCH

Testing for bacterial genes –Can it help find early infection in Cystic Fibrosis?

Understanding New Advances in Detecting Lung Infections

Why Is This Important?