Spectrum Winter 2021

SPECTRUM

Winter 2021

Christmas Jumpers Galore!

Christmas Jumper Day 4 CF took place on 10th December

RUM

www.cfireland.ie

i

CONTENTS Latest News | 1 - 3 * PPE Grant 2022 * Beaumont Hospital CF In-Patient Unit * Extension of Kaftrio * Update on the work of CFI * Soft opt-out

Member Services|4 - 11 *Lung Transplant info leaflet *Counselling Supports

TLC4CF|12 - 13 *Thank you Doctor Mahony

Research| 14 - 17 * CF and pregnancy * Kennel cough vaccination

Fundraising | 18 - 30 * Christmas Jumper Day 4 CF * Challenges and Events * Thank You * Calendar of Events

Editor: Sam Byrne

CEO’s Message Happy new year everyone. There is so much in this issue of Spectrum that is really positive – the likely roll out and further Philip Watt Chief Executive extension of Kaftrio to 6-11 year olds; the commitment from Beaumont Hospital on the completion of the 20 bed unit by 2023; the new exercise pod in CHI Crumlin opening in February; the wide range and impact of services, advocacy and research supported by CFI; the greater participation of PWCF on the CFI Board and the focus on transplant are just some of the key issues covered in this edition.

Of course none of this would be possible without the fantastic on-going support of those who fundraise and support CFI throughout the year. They know that we are so careful to ensure that all fundraising raised has maximum impact on CF care in Ireland.

Look out for the PPE grant (€100) and the exercise grant in the new year. Applications will be open in January. This progress is only possible because of the excellent governance of CFI led by our chairperson, Keith McCabe, CFI officers and the amazing voluntary commitment of our branches and volunteers.

You know that we have a wonderful staff team and they join me in wishing you all the best in 2022, both in our head office in Rathmines and our regional office in Limerick.

Finally many, many thanks to all in Government and opposition parties; the HSE; and in particular to CF clinicians and their multi-disciplinary teams many of whom continue to deal with the additional challenges arising from the COVID-19 Pandemic.

Philip Watt, CEO, CFI

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

COVER: Staff from St. Vincent's University Hospital on Christmas Jumper Day 4 CF

ii

Spectrum Winter 2021

LATEST NEWS: Second PPE Grant for patients with CF in Ireland- applications open shortly In response to the 4th wave of the pandemic and the ongoing costs of PPE protection, CFI will be providing a second PPE grant of €100 that will be available on application to all members with CF in Ireland and which builds on a similar grant that was available in 2020. Watch out for details in the CFI website and social media in the next few weeks. In 2020 CFI provided a total of €74,400 for the PPE grant and we hope to do the same this year.

Extension of Kaftrio to 6-11 year olds in next few months Vertex has announced that the EMA adopted a positive opinion for extension of Kaftrio for the treatment of cystic fibrosis (CF) in patients aged 6 to 11 years old.

Those eligible will have at least one F508del mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene.

In those with certain types of mutations in the CFTR gene, the CFTR protein is not processed or folded normally within the cell, which can prevent the CFTR protein from reaching the cell surface and functioning properly. Kaftrio (ivavaftor/ tezacaftor/elexacaftor) in combination with ivacaftor is an oral medicine designed to increase the quantity and function of the CFTR protein at the cell surface.

The opinion of the highly influential CHMP Committee of the European Medicines Agency (EMA) will now need final approval by the European Union. The extension of Kaftrio to 6-11 year olds in Ireland will then follow without the need for a health technology assessment HTA under the innovative 2017 ‘Orkambi’ Portfolio Agreement between the HSE and Vertex that is supported by Cystic Fibrosis Ireland (see also the article on Access to Kaftrio worldwide in this issue of Spectrum.

Beaumont Hospital In-Patient Unit (Adults) There was a meeting of the Build advisory committee for Beaumont Hospital on Thursday 4th November in Beaumont Hospital. The next step is the preparation for the build. This includes site clearance and preventative measures against aspergillus – a fungal infection called aspergillosis can be spread through construction processes for which all hospitals need to be wary. The contract for this preparatory work will be tendered in early 2022 over a 4 week period. If everything goes to plan, it is anticipated that the 20 room inpatient unit will be completed by 2023. The CF Hopesource Foundation has been a partner with CFI in the advocacy and part funding for the 20 bed inpatient unit.

www.cfireland.ie

1

CHI Crumlin: Exercise Walkway Receives 50K from CFI (Paediatric) CFI has provided a grant of €50,000 towards an exercise/walk facility for children and young people in CHI Crumlin.

CHI Crumlin have currently no area for children/young people to exercise and are using a corridor outside their offices for 6-minute walk tests. Unfortunately, due to COVID-19, it has not been possible to use this space.

They received a CHI Foundation grant for €130,000 to fund the building of an exercise pod at the back of the medical tower at CHI, Crumlin. They were short €50,000 to complete the interior works so the Board of CFI has approved the remaining funding, The exercise pod provided can be used in another hospital once the new CHI hospital is opened in St James’ Hospital, which will incorporate CHI Crumlin.

Galway CF Out Patient Unit (Adults) The HSE has lodged plans for a new outpatients department and an adult cystic fibrosis outpatients building at Merlin Park Hospital.

The development includes a two-storey outpatients department and an adjacent single storey adult cystic fibrosis outpatients unit. It also provides for 88 parking spaces, bicycle parking, pedestrian footpaths, lighting and associated signage and landscaping. City planners are due to issue a decision shortly.

Subject to a successful grant of planning permission from Galway City Council, the outpatients department and adult cystic fibrosis outpatients project will be tendered through the public procurement process to appoint the main building contractor. It is anticipated that the initiative will then progress to the construction phase in 2022 with a view to having the new facilities ready for operation in early 2023.

UHL (Adults) A meeting will be convened shortly with UHL in respect of a room refurbishment for adult CF patients with pathogens such as B.Cepacia and Abscessus who cannot be accommodated in the Leben Building due to the risk of cross infection. Funding for this room will be provided by CFI/TLC4CF. The part funding of a specialist diabetic nurse for CF patients is also under consideration.

COVID 19 third jab advocacy CFI joined with other patient groups to seek to ensure that the booster/third jab for those with long-term and rare diseases, including with CF, is given as quickly as possible.

CFI understands that many patients with CF have now received the third jab and this programme has gone particularly quickly in centres outside of Dublin.

Lung transplants down by 58% between 2019 and 2020 – CFI Advocacy CFI is an active member of and chairs the Irish Donor Network (IDN). In October 2021 the Council of Europe published its annual report on lung transplantation and deceased organ donation in the EU. The IDN highlighted from an analysis of this report, the overall organ transplant rate in Ireland was down by 32% in 2020 compared with 2019 with deceased organ donation rate down by 27%. Ireland only in 18th place out of EU28 countries for transplants in 2020 (slipping from 14th place in 2019). Ireland was only in 17th place for deceased organ donation in 2020. Lung transplants were hardest hit. The main factor for the decrease is the impact of COVID-19 on both transplant and organ retrieval capacity. The press release of the IDN highlighted that:

2

Spectrum Winter 2021

•

All lung transplants down 58.2% in 2020 compared with 2019

•

All heart transplants down 42% in 2020 compared with 2019

•

All liver transplants down 44.9% in 2020 compared with 2019

•

All kidney transplants, from both living and deceased donors, are down 21.3% compared with 2019

The press release of the IDN received considerable national publicity and a letter was sent to the Minister for health.

Soft-Opt-Out Organ Donor Consent – Wales shows the way CFI continues to advocate for the introduction of Soft-Opt-Out Organ Donation (Current and previous Programme for Government promise). In respect of our nearest neighbours, Wales has the highest donor consent rate of all the UK. It introduced Soft-Opt-Out consent in 2015. A public awareness programme will accompany the change in Ireland.

Since it was introduced in Wales, England and Scotland have also brought in the same donor consent system. Such a change in Ireland will of course require the necessary resources.

CUH (Cork) Following significant advocacy by CFI a second consultant to CUH (Cork, Adult) will be recruited shortly. CFI has also advocated for Psychologist in the CUH CF adult service and we hope that this post will eb confirmed shortly.

Despite progress over the last decade, there remain gaps in CF MDT roles throughout the country and CFI is hopeful that some of these gaps will be met through the National clinical Programme for CF. Irish Rare Diseases Forum The Irish Rare Disease Task-Force is evolving into the Irish Rare Disease Forum. There will be 3 meetings a year of the Forum, looking at issues such as Access to Medications; North South Cooperation and health Research related to rare diseases.

www.cfireland.ie

3

4

Spectrum Winter 2021

www.cfireland.ie

5

6

Spectrum Winter 2021

www.cfireland.ie

7

Cystic Fibrosis Ireland Cystic Fibrosis Ireland offer a counselling referral service for people with CF who wish to speak with a professional. Funding is available for up to 8 sessions which are completed online or via telephone.

You can find out more through the www.cfireland.ie website or by contacting Samantha Byrne, Member Services Coordinator at sbyrne@ cfireland.ie

Online counselling and support Minding your Wellbeing - Free series of online video resources to learn and practice key elements of mental wellbeing such as mindfulness, gratitude, self-care and resilience from HSE Health and Wellbeing.

Visit www.yourmentalhealth.ie Mental Health Ireland - Information and support for people who experience mental health difficulties Information line 01 284 1166 from 9am to 5pm Monday to Friday Visit mentalhealthireland.ie Email: info@mentalhealthireland.ie

Text Services Text 50808 - A free 24/7 text service, providing everything from a calming chat to immediate support for people going through a mental health or emotional crisis.

Text HELLO to 50808, anytime day or night.

Visit www.text50808.ie for more information.

Mobile apps These mobile apps can help you manage anxiety. They have been approved for listing here by the HSE Mental Health Group. The app developers are solely responsible for their compliance and fitness for purpose. These apps are not supplied by the HSE or CFI and neither are liable for their use.

MindShift (by Anxiety Canada)

MindShift CBT teaches about anxiety, helping users to engage in healthy thinking and to take action. Users check in each day to track their anxiety and work with tools in the app.

Headspace

Headspace is a well-known mobile app that teaches meditation and easy to use mindfulness skills. Map your journey and track your progress and ‘buddy up’ with friends and motivate each other.

Clear Fear For teenage mental health charity Stem4. The app uses CBT to focus on learning to reduce the physical responses to threat by learning to breathe, relax and be mindful as well as changing thoughts and behaviours and releasing emotions. You can personalise the app and track your progress.

8

Spectrum Winter 2021

Why do you need flu vaccine?

Flu isn’t just a cold

Flu can cause pneumonia and bronchitis and can make chronic health conditions worse.

Flu is serious

Up to 500 people die from flu every year in Ireland.

Flu vaccine protects you

You should get the flu vaccine if you: • are 65 years and older or • have a chronic health problem such as heart or lung disease or • are pregnant

Flu vaccine protects others too

You should get the flu vaccine if you are a healthcare worker or a carer or if you live with someone with a chronic health condition.

Flu vaccine is free for people at risk

Talk to your GP (doctor) or pharmacist today about getting the flu vaccine.

Vaccine to boost the immune response in adults aged 65 and over

As we get older our immune system may not respond to vaccines to the same extent. The adjuvanted flu vaccine (available specifically for adults aged 65 years and over) contains an ingredient to create a stronger immune response.

hse.ie/flu Public Health Advice www.cfireland.ie Order Code: HNI01089

9

CLASS 2021/2022 Covid Learning and Support Scheme A new programme called Covid Learning and Support Scheme (CLASS) is being put in place to help schools mitigate the adverse impacts of Covid-19 on pupil/student learning loss and wellbeing arising from the periods of school closures in 2020 and 2021. This scheme is open to both Primary and Post-Primary students.

The new programme comprises two main elements: 1.

The provision of additional teaching hours to schools to support their work

in addressing learning loss among pupils/students arising from periods of

school closures

2.

Opportunities for schools to share practice which is considered to be most

effective in mitigating learning loss among pupils/students

Further information can be found at the links below: Primary and Special Schools: https://www.gov.ie/en/publication/0b4a7-covid-19-learningand-support-schemeclass-guidance-for-primary-and-special-schools/ Post Primary Schools: https://www.gov.ie/en/publication/31e9f-covid-19-learning-and-supportscheme-classguidance-for-post-primary-schools/ Please talk to the Principal of your child's school if you wish to avail of this programme of additional support.

10

Spectrum Winter 2021

Exercise Grant 2022 - Round 1 - Opens 24th January

Thank you, Nuala McAuley!

Nuala has moved onto a new role with St. Patrick’s Mental Health after almost 7 years working with CFI. Nuala made a huge contribution to Cystic Fibrosis Ireland, having started with the fundraising department. She then moved into public awareness and social media and carried out this role with the utmost professionalism and empathy.

Nuala was responsible for managing the new website and her expertise was crucial at the start of the pandemic when all communications went online. Nuala, we wish you every success in your new role and know you will do great work to improve services in the field of mental health!

www.cfireland.ie

11

Thank you Dr. Mahony We would like to let you know about the recent retirement of our wonderful colleague and friend, Dr. Michael Mahony.

Dr. Mahony retired in Sept 2021 after a lengthy career with UL Hospital Paediatric Dept. As many of you already know, most of his time was dedicated to patients with CF along with his other specialities. Michael was truly passionate and worked tirelessly for the benefit of all patients under his care. Michael was particularly instrumental in advocating for patients with CF in the Mid-west and set up the first CF clinic in UL Hospital. Over time the service evolved and Michael lobbied for the future of CF care with the assistance of TLC4CF and CF Ireland. Michael was present for all the early negotiations with the setup of services and the provision of the new adult CF unit. We know that all of you would like to thank him for his care and commitment over the years and to wish Michael best wishes with his retirement. We hope that he will enjoy many years of good health and happiness.

Ag gui gach adh Slainte an bhradain agus snas ort la I ndiaidh lae.

“Dr Mahony has fought tirelessly throughout his career for people with CF in the Mid West region. Without him there would have been no CF services. His commitment and dedication to his patients was a credit not only to his profession but also was a mark of the man himself. He was instrumental in getting TLC4CF off the ground as he was the one who encouraged and inspired the parents and PWCF of what could be achieved if they came together. He was present on the night of the launch of TLC4CF in the Savoy Hotel in Limerick back in September 2009, he was present at the opening of the new unit in 2016, and all along the way he encouraged, and advised us. Always kind, always caring with a wonderful positive attitude. He will be sadly missed by PWCF and their families. Special thanks always to his wife Kay who kept the home fires burning while Michael worked so hard for PWCF. Wishing you a long and happy retirement Michael, with the good health to enjoy it”. (Caitriona Hayes, Tipperary) “I would just like to wish Dr Mahony a long, happy, healthy retirement. He was always a gentleman. So encouraging, caring and positive to my daughter and my family anytime we met him in UHL 1998 – 2006.

He gave us great hope and sound advice during a difficult time. For that we will always be grateful”. (Aileen Corcoran, Tipperary) “I lived in Birmingham when my son was diagnosed with CF. He was under the care of Dr Williams and when we wanted to return to Ireland we wnted to get the best care possible. Dr Mahony came highly recommended, so we moved home and Dr Mahony took over Levi's care from the age of 6 months. To say he got top class care doesn’t even begin to cover it.

Dr Mahony was there and helped him through every bout of illness be it hospital admissions of home IV. He was always at the other end of the phone. His dedication to the care of our son was second to none and he brought Levi back from some very scary times where we thought it was the end. He listened to what we had to say and took it all on board.

He made us feel important, listened to and acknowledged. Dr Mahony is my hero, an Earth Angel, who didn’t just treat our children, he adopted them as his own and he didn’t switch off when he left the hospital. To know Dr Mahony was looking after my son made the hard times easier. I am so thankful my son Levi was under his care for all of his childhood and I know it was the above and beyond dedication by Dr Mahony that made my boy the wonderful young man he is now. I want to thank Dr Mahony from the bottom of my heart and wish him many years of happiness on his retirement”.

(Theresa McMahon, Tipperary)

12

Spectrum Winter 2021

“I would like to wish Dr Mahony a well deserved retirement. He was so dedicated and kind to my late son Kevin Butler.

We will always be so grateful to him. Kevin got on so well with Dr Mahony and he always treated Kevin with respect and explained everything to him so well”. (Pat and Patricia Butler, Tipperary) I have a distinct recollection of the first time I met Dr Michael Mahony, as it coincides with the birth of our second daughter. It was not until some years later in 2008 that I began to realise how much of a part Michael would have in our lives and indeed in the lives of many people and families living with Cystic Fibrosis. It was not until a few years later again, through the course of working more directly with Michael in my capacity as Chairperson of TLC4CF, that I fully understood how passionate, resilient and dedicated he was to working for people with Cystic Fibrosis.

Any family attending what is now the University Hospital Limerick, back in the mid 2000’s, are all too aware of how limited the service was for people living with Cystic Fibrosis. It was a time when the country was witnessing unprecedented financial growth and thankfully Minister Mary Harney saw fit to ringfence some of that money to bolster services for people with CF. It was from this base that Michael took it on board as a personal challenge to improve services for all living with CF in Tipperary, Limerick, Clare and beyond.

The journey from Minister Harney making funds available to having nurses and doctors on the ground in the hospital was a complex and difficult task but one that Michael executed with consummate professionalism. It was his enthusiasm and dedication to do the right thing for his patients that was the catalyst for county branches of the CF organisation in Tipperary, Limerick and Clare to combine their efforts through TLC4CF and to work as a single unit to progress things for our members. From a personal point of view I am forever grateful to Michael on a number of fronts but also as his endeavors provided an environment for me to work with one of the best voluntary committees I have ever been part of. Linda Drennan (RIP) and Marcella Clancy in Clare, Caitriona Hayes in Tipperary and Liam O' Kelly in Limerick worked endlessly with Michael throughout 2008 to the opening of the Leben Building in 2016. Michael's support and encouragement to the committee during these times is a source of lasting inspiration.

It is true that it was Michael's job to provide a services to his patients, but it is how he has done this, that sets him apart.

Few people go through their professional career and preside over and drive such significant changes. The development of services for people with CF in UHL will have Michael's name attributed to it, for some time to come. It’s a lasting legacy to his care for his patients, his resilience and determination. We wish his wife and Michael a long and happy retirement. I know from a recent call I had with him, that he has started that journey in good style. Thank you Michael.

Owen Kirby, Chairperson TLC4CF 23 years ago my newly diagnosed son and I were very lucky to meet the wonderful Dr Mahony. At that time, he was the CF Consultant in Limerick along with the kind and caring CF Nurse Marion Lally. Back then the CF Paeds outpatient unit didn’t exist. Facilities for CF were poor. Dr Mahony rectified that and was the driving force in putting paeds CF care and facilities in place. He persisted until everything was up to his high standards. I am so grateful for his diligence and commitment to his CF patients. My boy ran in to trouble around age 10 with CF complications. Dr Mahony went above and beyond to source a treatment that would work for him to get him back to full health. He taught us well and due to his excellent care my son is living a healthy, happy life now. Dr Mahony also played a huge role in ensuring an urgent and very ambitious goal was fulfilled – the now state of the art adult CF inpatient and outpatient units. Even when his Pead patients had moved on to adult services he had their health and best interests at heart. Our family, and in particular my son are so very grateful to Dr Mahony. “Michael, we wish you and Kay a wonderful, happy and adventurous retirement, Thank You” The Clancy Family (Clare)

www.cfireland.ie

13

RESEARCH UPDATE Cystic Fibrosis Ireland caught up with Jen Balfe, who is a researcher in the RCSI. She is also a Mam of two and a person with CF.

Project Title: Exploring the experiences of People with Cystic Fibrosis and the healthcare professionals involved in their care during the pre-conception to post-partum period.

In September 2020 I received a four-year scholarship from the Irish Research Council, under the Enterprise Partnership Scheme, which is co-funded by CF Ireland. The project aims to explore the experiences of people with Cystic Fibrosis (pwCF) and the healthcare professionals (HCPs) involved in their care, as they navigate fertility and pregnancy journeys in Ireland.

I personally would have loved a tangible booklet or companion guide while I was pregnant, to address the specific requirements and challenges involved in being pregnant with CF. This project was born out of the desire to create such a resource for pwCF who are thinking about or experiencing pregnancy in the future.

My supervisory team consists of Dr Aisling Walsh, a lecturer and researcher in the RCSI, Dr Jennifer Donnelly a consultant obstetrician in maternal and fetal medicine, who has experience providing care to pwCF during pregnancy in the Rotunda Hospital and Dr Sarah Tecklenborg, Senior Research and Policy Officer in CF Ireland. I feel incredibly lucky to have such a passionate and committed team behind me and I am already learning so much.

As an obstetrician who sees women with cystic fibrosis trying to become pregnant and negotiating the joys and challenges of pregnancy, I think this project will help improve the experience for women with CF, through better communication of needs and through clearer pathways of care.

Dr Jennifer Donnelly

The research will involve different stages and processes. To date I have developed a protocol for a systematic review of the literature in this area and we are currently developing a protocol for the study which will begin in 2022. This will involve surveys and interviews with pwCF and the HCPs involved in their care. We will also investigate how pregnancy is experienced by people in other patient populations, with a particular focus on people with epilepsy. This will be done with a view to learning from areas of crossover in managing care for pwCF. In order to reflect the voices of pwCF, we will be establishing a PPI panel to help guide the study.

14

Spectrum Winter 2021

The panel will be open to women with CF from Ireland, who have accessed or utilised fertility or maternity services.

Panellists will be over 18 years of age and will be willing to provide feedback and guidance on the research project, using their experience to enhance the research study.

Despite my personal experience as a pwCF, I am acutely aware that it is an experience which is unique to me. Given the diversity of experience in Cystic Fibrosis, I want to learn from as many different people with CF to ensure that a collective and representative voice is present in the study. The voices of people with CF and the healthcare professionals involved in their care are vital as they are the ones that can help shed a light on the experience of fertility and pregnancy in Ireland.

It is a really exciting time to be working in the field of CF research in Ireland. The landscape of health in CF has changed dramatically for many, with the use of CFTR modulator therapies and improved treatments. As a result of this changed landscape, more pwCF are becoming parents and raising families. Finding out the priorities and needs of pwCF and their HCPs during this important period, and reflecting them so that they can inform policy and planning is something that drives me.

In the future I hope to continue researching questions that are important to pwCF by listening to others in the CF community and learning from their experiences.

“I am delighted to be part of this exciting and important study, which will make a positive contribution to the experience of people with Cystic Fibrosis during the pre-conception to the postpartum period. Not only will the results be beneficial to women and families with CF, it will also assist health professionals as they deliver health services to women with CF during this period.”

Dr Aisling Walsh

www.cfireland.ie

15

A doggy tale How vaccination for your dog may benefit you.

Professor John E. Moore, Dr Jacqueline C. Rendall and Professor Beverley C. Millar Northern Ireland Adult Cystic Fibrosis Centre

One vaccine that your vet may suggest that your dog should get is the vaccine for Kennel Cough. The common cause of Kennel Cough is the bacterium called, Bordetella bronchiseptica, which may cause respiratory disease in small companion animals, as well as in certain human vulnerable groups, including those with CF. The good news for PwCF is that these infections in dogs can be prevented through routine vaccination against Kennel Cough, which PwCF should discuss with their vet. Also, infection from Bordetella bronchiseptica in PwCF is rare and if present, can be treated with appropriate antibiotics.

Licenced veterinary bacterial vaccines for Bordetella bronchiseptica (Kennel Cough) are widely available for dogs, which utilise live attenuated bacteria, which are usually administered to the dog via their nose. The presence of these live vaccine bacteria, now residing in the dog’s upper respiratry tract, is detected by the dog’s immune system, which then produces antibodies against the live vaccine bacteria and so the dog becomes immune to the vaccine strain, which also protects against Kennel Cough bacteria found in other non-vaccinated dogs. The live vaccine bacteria can live in the vaccinated dog’s nose for anywhere between 35 days up to 11 weeks,2 and in certain circumstances in the dog’s poo for up to 70 days.2 During this shedding period, these bacteria may be excreted from the vaccinated dog’s nasal and upper respiratory tract secretions, to other dogs, their owners, fomites and the environment. The close social bond between puppy and child with CF makes zoonotic transmission more likely from a vaccinated animal, which is shedding live vaccine bacteria.

Recently, a new dead vaccine for Kennel Cough (Nobivac Respira Bb) in dogs has now become available for use with vets in Ireland, which utilises a different vaccine strategy, not requiring the use of live vaccine bacteria, but alternatively uses bacterial proteins, which are dead and without risk of infection to dog or owner.3 This vaccine is administered subcutaneously, which is better tolerated by the dog than administration up the nose and can be given to puppies from the age of six weeks onwards. Given that there are no live bacteria involved with this vaccine, the dog does not shed any such bacteria and hence there is no potential infection risk from the vaccine to the PwCF owner. The advantage of this vaccine is that there is no need for social distancing/exclusion during the shedding period between PwCF owner and dog because of vacinne-related issues.

PwCF should understand the small but potential infection risk from Bordetella bronchiseptica to themselves of using the live vaccines for Kennel Cough in their dogs and should therefore consider to have their dog vaccinated for Kennel Cough with the new dead vaccine, which negates the risk of infection. Where a live Kennel Cough vaccine has recently been adminsitered to their dog, then the PwCF should check with their vet with regard to the time of shedding of the vaccine bacteria in their dog and follow good hygiene precautions during this period to minimise potential transmission from vaccinated dog to PwCF. This may be mitigated through (i) social distancing with the dog, (ii) avoidance of letting the dog lick the face and (iii) good hand and canine respiratory hygiene, in all dog-related

16

Spectrum Winter 2021

events. Following completion of the shedding period, then the dog may be socially re-integrated with the PwCF. As a further precaution, where the PwCF has undergone a transplant, then allowing the vaccinated dog to stay with in a different family or friend’s household for the period of shedding, is advised, afterwhich the dog can be reunited in the transplanted PwCF’s household.

When visiting the vet with their puppy or adult dog for vaccination, PwCF should therefore make their vet aware of their CF status, so that a safe and efficacious vaccine strategy is formulated for the dog, both mitigating the potential infection risks from live components of the vaccine to the PwCF, through the use of such an alternative dead vaccine, but simultaneously offering maximum immunological protection to the dog. PwCF should seek guidance from their vet regarding all aspects of initial vaccination and re-vaccination (boosters) concerning their dog.

REFERENCES

1.

Morrow CB, Raraigh KS, Green DM, Blackman SM, Cutting GR, Collaco JM. Cat and dog exposure and respiratory morbidities in cystic fibrosis. J Pediatr. 2014;165(4):830-5.

2.

Moore JE, Rendall JC, Millar BC. A doggy tale: Risk of zoonotic infection with Bordetella bronchiseptica for cystic fibrosis (CF) patients from live licenced bacterial veterinary vaccines for cats and dogs. J Clin Pharm Ther.

2021;10.1111/jcpt.13492.

3.

Moore JE, Millar BC, Rendall JC. New kennel cough vaccine protects vulnerable owners too. Vet Rec. 2021;189(2):78-79.

www.cfireland.ie

17

Thank you for making 2021 our must successful Christmas Jumper Day 4 CF ever!

18

Spectrum Winter 2021

www.cfireland.ie

19

FUNDRAISING: Challenges and Events For further details on any of our fundraising events, visit our website www.cfireland.ie, contact the CFI Fundraising Team on (01) 496 2433 or email fundraising@cfireland.ie April 8th: 65 Roses Day 65 Roses Day is our National Fundraising Day for Cystic Fibrosis Ireland. This is our largest fundraising event of the year and targeted to raise €350,000 to help fund essential services needed now more than ever by people with Cystic Fibrosis in Ireland. Please support Cystic Fibrosis Ireland on 65 Roses Day, Friday 8th April by taking part in a 65 Roses Challenge or donating online at 65roses.ie 65 Roses Challenge Why not set up a 65 Roses Challenge to help people with Cystic Fibrosis for 65 Roses Day? A 65 Roses Challenge can be any challenge with a 65 theme. It could be a 6.5k walk or run, 65,000 steps or a 65km cycle etc.

All you have to do is click onto our 65 Roses Day website at 65roses.ie and this will give you some examples of the wonderful 65 Roses Challenges from 2021 and guide you through how to set up your Just Giving Page to start your challenge.

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

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

Online Donations If you are not in a position to set up a 65 Roses Challenge for 65 Roses Day, you can also support our largest fundraising campaign of the year by donating online at 65roses.ie. As this time when fundraising has been severely impacted by the pandemic and people with Cystic Fibrosis are impacted more than ever, any support you can give is greatly appreciated.

20

Spectrum Winter 2021

April 24th: 10th Annual Duleek 10k Cystic Fibrosis Ireland and all of the team at the Duleek 10k are delighted to announce the 10th Annual Duleek 10k will take place on Sunday 24th April. Register now at www.cfireland.ie.

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

Over the past 9 years the Duleek 10k has raised more than €200,000 to help support people with Cystic Fibrosis in Ireland.

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

www.cfireland.ie

21

May 5th to 8th: Malin2Mizen Cycle4CF Our annual Malin2Mizen Cycle4CF takes place from Thursday 5th to Sunday 8th of May 2022. This is a life changing experience where you get to take on an adventure you will never forget, meet new friends that will stay with you forever, improve your health and fitness and all the time raising monies for a great cause.

Registration is NOW OPEN at www.cfireland.ie with a limited number of places available and closes on 28th February. Don’t delay, register now to secure your place.

For further details please contact Cystic Fibrosis Ireland on 01 496 2433 or email fundraising@cfireland.ie

June 5th: One in 1000 / Vhi Women’s Mini Marathon We are delighted to announce that the Vhi Women’s Mini Marathon returns on Sunday, 5th June. Why not become One in 1000 taking part in this very special event for Cystic Fibrosis Ireland? This is the largest outdoor women’s event in Europe and every year, 1,000 women take part in their purple Cystic Fibrosis Ireland shirts representing Cystic Fibrosis Ireland.

Join us on the June bank holiday weekend in our base at the D2 Harcourt hotel where you can relax before the start of the 10k and drop off your coat / bags, get your photo taken, face painted and collect some goodies to get you through the 10k. When you return afterwards, we will have the music ready and food / refreshments so you can relax with your friends SIGN UP NOW at www.cfireland.ie for this amazing event for the CF Community in Ireland and we will send you out your Cystic Fibrosis Ireland pack and details for the day.

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

22

Spectrum Winter 2021

September 4th: 10th Annual Head2Head Walk We are absolutely delighted to announce that our 10th Annual Head2Head Walk takes place on Sunday, 4th September. This fabulous walk along the sea front from Howth Head to Bray Head goes from strength to strength, thanks to the wonderful organisation of the event by the Head2Head Walk Committee let by Mary McCarroll, Jem & Lorraine Downes and Glen McDonnell.

The 10th Annual Head2Head Walk will be very special and you can REGISTER NOW at www.cfireland.ie. For further details you can call us on 01 4962433 or email fundraising@cfireland.ie.

September 9th to 15th: Paris2Nice Cycle Registration is now open at www.cfireland.ie for the Paris2Nice Cycle which leaves Paris on Friday, 9th September arriving in Nice on Thursday, 15th September. REGISTER NOW to secure your place.

This is a really well organised event with limited places available which are highly sought after. An information evening is being held for anyone that would like to find out more about this event on January 18th in the Goat Grill, Mountanville.

For further details call us on 01 4962433 or email fundraising@ cfireland.ie.

September: Paddy Kierans’ Memorial Walk The Walk Committee will continue to monitor the situation in relation to options for a venue for the Walk in 2022 and details will be announced as soon as possible. If you are interested in taking part in the Walk this year, please email Brendán on brendan@ cfireland.ie to ensure you receive full details as soon as these are confirmed.

October 2nd: TCS London Marathon The London Marathon is one of the most iconic and globally renowned marathons in the world. Places are only available via a lottery to the general public. However we can provide you with a guaranteed place if you book your trip with Cystic Fibrosis Ireland.

As places are limited, register your interest to take place now on our website at www.cfireland.ie and we will contact you to confirm next steps as soon as details for this year’s event are confirmed.

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

www.cfireland.ie

23

All Year Round International Treks For the really adventurous looking for the challenge of a lifetime in 2022, International Treks are available across the year to climb Kilimanjaro, Machu Picchu and Everest Base Camp.

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

Skydives If a skydive is on your bucket list, then 2022 is your chance to tick it off, while supporting a great cause. This challenge is one you will never forget and all you have to do is register your interest to take on our website at www.cfireland.ie and we will contact you to confirm next steps.

Now is the time, take on the challenge and you will remember 2022 for all the right reasons. You can contact our office on 01 496 2433 or email fundraising@cfireland. ie for more information

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:

24

Spectrum Winter 2021

Head2Head Walk We would like to take this opportunity to thank everyone who made our Head2Head Walk such a fantastic event again in 2021 including our sponsors. A massive thank you to Fyffes Ireland, HARIBO Ireland, Scribbles Around Noon Sandwiches and Tesco Ireland for sponsoring the food and refreshments on the day which helped keep everyone energised along the route.

Your support is very much appreciated!

Paris2Nice Cycle Thank you to Enda Greehy for completing the Paris2Nice cycle and for raising much needed funds for Cystic Fibrosis Ireland. A particular mention to Tom Cavanagh & Tomar Trust who sponsored Enda on his cycle.

Malin2Mizen Cycle4CF We would also like to say a huge THANK YOU to all our cyclists and the support team who successfully completed our annual Malin2Mizen Cycle4CF, raising an amazing €147,593!

Thank you also to all our generous sponsors who covered our costs involved in running this event including Europcar Ireland, Maxol, SPAR Ireland, Door Motion, Murray Timber Group, Lidl Ireland, Dunnes Stores, Donegal County Council, Donegal Local Sports Partnership and Tipperary Water Pictured below are some of the cyclists and support team presenting the cheque to Cystic Fibrosis Ireland.

Donegal & Derry Walk Thank you to all our walkers who went on the Paddy Kierans' Memorial Walk in Donegal and Derry in 2021 and to the Walk Committee including Bernie Murphy, Vinnie O’Malley and Tony Griffith for all their ongoing work to make the walk such a success every year. A total of €22,250 was raised from the Donegal / Derry Walk.

TCS London Marathon We would like to thank both Laragh Fitzgerald and Michael Kelly who participated and completed the London Marathon 2021 with a total of €12,331 raised from this event for Cystic Fibrosis Ireland in 2021.

KBC Virtual Dublin City Marathon Thank you to everyone who supported Cystic Fibrosis Ireland over the October Bank Holiday Weekend 201 by www.cfireland.ie

25

taking part in the Virtual Dublin City Marathon! While we realise it was not the same as participating in the actual event, we really appreciate everyone who made the effort and completed the marathon at their own venue and fundraised for Cystic Fibrosis Ireland.

TCS Virtual New York City Marathon Although the New York City Marathon could not go ahead as usual in 2021 due to the pandemic, it did not stop Mary Gavin who brought the New York Marathon to Ireland and completed the route in Galway raising an incredible €5,489.23. We wish Mary the very best of luck as she travels over the New York to complete the actual event in 2022.

Christmas Jumper Day 4 CF We extend a huge thank you to everyone who signed up and participated in Christmas Jumper Day 4 CF 2021. Thank you for making our fourth Christmas Jumper Day 4 CF year our biggest and best to date with funds raised still coming in.

Setanta Vehicle Sales Cystic Fibrosis Ireland would like to say a huge thank you to Setanta Vehicle Sales Limited who recently organised a cycle amongst their staff and raised €5,000 to support people with Cystic Fibrosis in Ireland. Thank you so much to everyone involved and for all your wonderful fundraising.

Pictured presenting the cheque to our Fundraising Manager, Fergal Smyth are Caroline Corbally, Adam Johnston (on right) and Dave Beatty (on left) on behalf of Setanta Vehicle Sales Limited.

Priority Construction For the month of September the team at Priority Construction who took on a Steptember challenge. The challenge set to the team was to complete at least 10,000 steps every day in September. The aim of the challenge was to form a healthy habit while raising funds for the Cystic Fibrosis Ireland and it worked as they raised a huge €2300!!! Well done to everyone involved.

Eoghan Murphy, Managing Director of Priority Construction is pictured below presenting a cheque to Nuala McAuley representing Cystic Fibrosis Ireland.

Steelcruisers Mcc Congratulations and thank you to everyone Steelcruisers Mcc who raised €6,569 for Cystic Fibrosis Ireland from the Christy Morris Memorial Motorcycle Run. They said that the success of the event showed how much Christy (PWCF), meant to everyone from the biking community, local community and all his family and friends.

Pictured presenting the cheque is Ollie on behalf of Steelcruisers Mcc with a number of the bikers and their impressive bikes in the background to Fergal Smyth from CFI.

26

Spectrum Winter 2021

65 holes for 65 Roses A huge thank you and well done to Darren Fitzgerald who raised €19,253 for Cystic Fibrosis Ireland! On July 19th Darren organised '65 holes for 65 Roses' on 3 golf courses in Dublin - Corballis, Elmgreen and Castleknock.

'Four years ago my eldest daughter Caoimhe was born with Cystic Fibrosis (CF). As a parent to a child with Cystic Fibrosis the CF Community around the world have provided fantastic guidance, support and comfort to us. To show my gratitude I wanted to organise a fundraising event and came up with the concept of playing 65 holes of golf in a day.'

Pictured presenting the cheque are Darren Fitzgerald (left) and Fergal Smyth (right) on behalf of CFI. 32 High Point Challenge Congratulations to Ann McCabe who completed her 32 High Point challenge.

Since April this year Ann has climbed 32 mountains and hills - one in each county - to raise money for Cystic Fibrosis Ireland. After completing her challenge Ann reflected on the experience.

'Mountains are reflections of our everyday life. Sometimes they loom big and menacing, dark and frightening, and the way over them seems impossible. The only way to tackle them is by not looking too far ahead, by simply placing one foot in front of the other and moving forward. There is always a way’.

Photo – 32 High Point Challenge – Ann McCabe 4 Highest Peaks – Naas GAA Club A huge thank you to the Naas GAA Club U9 mentors who climbed the 4 highest peaks in Ireland over 2 days.

Starting on August 13th with a hike up Lugnaquilla 925m of Co. Wicklow – the highest peak in Leinster. On the same day they hiked up Slieve Donard at 840m in Co. Down - highest peak in Ulster. On Saturday 14th they moved on to Mweelrea at 841m in Co. Mayo - highest peak in Connacht. Finally on the same Saturday, they hiked up Ireland's highest peak, Carrauntoohil at 1040m of Co. Kerry.

They raised an amazing €45,000 for 3 charities - Cystic Fibrosis Ireland, The Asthma Society of Ireland and Féileacáin.

Pictured presenting the cheque to Fergal Smyth on behalf of CFI are the U9 mentors from Naas GAA Club.

Golf Fundraiser – Hermitage Golf Club A huge thank you to Michael Malone who raised €11,128 from a Golf Fundraiser with his local Golf Club.

"As Men’s Competitions Secretary Of Hermitage Golf Club, I was absolutely delighted when Captain Brendan & Lady Captain Cathy decided to nominate CF Ireland as their charity for our Annual Charity day. I have been involved with the CF Ireland for the past 15 years and am aware of the great work they do for patients and their families. As we all know the past 18 months have been difficult for charities and we hope that this will help in some way. We would like to extend a special thanks to Femak who kindly sponsored the Prizes for the day".

Presenting the cheque to Fergal Smyth on behalf of CFI are Brendan Coffey, Michael Malone and Cathy Counihan from The Hermitage Golf Club

www.cfireland.ie

27

Charity of the Year Encourage your employer to select Cystic Fibrosis Ireland as their Charity of The Year?

As companies look at who they are going to select as their Charity of The Year for 2022, why not ask your employer or ask your friends and family to ask their employer to nominate Cystic Fibrosis Ireland (CFI). We can provide you with support information about CFI and our work as required or visit your employer to outline to them how their support will help provide key supports and services for people with cystic fibrosis in Ireland.

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

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

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

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

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

PWCF in Ireland need your support!

65 Roses Day – Friday 8th April 65 Roses Day (Our National Flag Day) takes place on Friday 8th April. This is the National Fundraising Day for Cystic Fibrosis in Ireland and we will have volunteers selling our emblem, the purple rose in Shopping Centres and on the

28

Spectrum Winter 2021

streets across Ireland. If your company is looking for volunteering opportunities and perhaps allows for volunteer days to support charities, then why not ask your colleagues if they would like to volunteer to help CFI on 65 Roses Day. If you and your colleagues can help us on the day, please call the CFI Fundraising Team on 01 4962433 and we will organise to get you involved in your local or most suitable collection on the day.

Corporate Sponsorship Another way your employer could help support people with CF in 2022 would be to sponsor one of the major events hosted by CFI. This could include our National Conference which takes place in Athlone in April, 65 Roses Day also in April, the Malin2Mizen Cycle4CF in May, One in 1000 VHI Women’s Mini Marathon also in May or the Head2Head Walk in September.

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

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

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

For more information….

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

www.cfireland.ie

29

CFI Fundraising Calendar of Events 2022 April Friday 8th Sunday 24th

65 Roses Day 10th Annual Duleek 10k

May Thursday 5th - Sunday 8th

Malin2Mizen Cycle4CF

June Sunday 5th

One in 1,000 / VHI Women’s Mini Marathon

September Sunday 4th

10th Annual Head2Head Walk

Friday 9th to Thursday 15th

Paris2Nice Cycle

Dates TBC

Paddy Kierans' Memorial Walk

October Sunday 2nd

TCS London Marathon

Sunday 30th

KBC Dublin Marathon

November Sunday 6th

TCS New York City Marathon

December Friday 9th

Christmas Jumper Day 4 CF

All Year International Treks – Kilimanjaro, Machu Pichhu, Everest Base Camp, Skydives

Cystic Fibrosis Ireland 24 Lower Rathmines Road, Rathmines, Dublin 6, D06 A9P3, Ireland

30

t: +353 1 496 2433

e: info@cfireland.ie

w: www.cfireland.ie

Company Reg: 449954

Charity No: CHY6350

CRA Number: 20011376

Spectrum Winter 2021