Spectrum Summer 2021

SPECTRUM Summer 2021

On Your Marks!

PWCF Emily & Lana line out for the Virtual Women's Mini Marathon

www.cfireland.ie

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CONTENTS Latest News | 1 - 5 * Update on the work of CFI * Kaftrio Extension to More Patients in Ireland * CFI Annual Conference * Vaccines Webinar * Rare Disease Day * Fake & Forgotten Therapies for CF and the role of Clinical Trials

Spotlight | 6 - 9 * Can I get a Mortgage with CF? * My Mortgage Experience so far

Member Services|10 - 12 * Information on Grants and Supports Available to the CF Community

Research| 13 - 17 * CFI Annual Conference Report * Exploring Diet Quality in CF

65 Roses Day 2021 | 18 - 19 CFRI | 20 - 21 * Turning Data into Information

Hospital Hub | 22 -23 * Spotlight: Siobhan Hatton, CF-Related Diabetes Nurse Specialist, St. Vincent's

The People of CFI | 24 - 28 * All Aboard

Fundraising | 29 - 37 * Challenges and Events * Thank You DISCLAIMER: The views of contributors, when expressed in this publication, do not necessarily reflect the position or policy of Cystic Fibrosis Ireland.

COVER: Sisters Emily and Lana Woodward at the launch of the One in 1,000 Campaign

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CEO’s Message As we move towards a more COVID-19 free Ireland, it is great to see that people with CF have now been vaccinated and Ireland has commenced the process of a cautious re-opening.

Philip Watt For many with CF, the coming months Chief Executive represent an opportunity to catch up with paused employment, training and education ambitions and the aspiration of an increasing number of adults with CF for more independent living. CFI will seek to help with this transition period as best we can.

In this context, a summary of CFI member supports are provided in this issue of Spectrum and there is an article on the challenge of accessing mortgages. Other aspects of housing will feature in future issues and a webinar will be organised soon.

Board members and the branches are at the heart of the governance of Cystic Fibrosis Ireland, led by our Chairperson Keith McCabe. CFI continues to comply with charity and company legislation and good practice.

The CFI Annual Report for 2020 is now available on our website. All major funding items must be discussed and agreed by the Staff and Finance Committee chaired

by John Coleman and then the full Board of CFI. There is immense experience on the Board who represent branches, including people with CF and parents, and your Board members are profiled in this issue of Spectrum.

The CFI Board recently agreed key priorities for the next few months, including strategies to support Independent Living; the continued broadening of access to CFTR therapies such as Kaftrio; the go ahead of the Beaumont and Galway in-patient unit initiatives and continuing support of key research projects and clinical posts that were highlighted at our recent annual conference.

Finally, a huge thank you to everyone who supported us during national awareness week / 65 Roses Day! Without this support the work and impact of CFI would not be possible.

Philip Watt, CEO, CFI

Spectrum / Summer 2021

LATEST NEWS: News Summary: January - April 2021 The first quarter of 2021 has been a very busy period for CFI, including in relation to COVID-19 / vaccines initiatives; rare disease policy initiatives; 65 Roses Day/national awareness week and much more. The following provides a summary.

January - April Regular, accurate and detailed CFI comms messaging on wide range of Particular focus on COVID-19 and the issues on website and social media continue vaccination programme Wide range of supports and individual advocacy for our members including online wellness, advice, and counselling supports.

Hospital Advocacy Continues: Beaumont CF Hospital In-Patient Unit and UHL Adult CF Unit CFI is part of awareness sub group of Organ Donor Transplant Ireland (ODTI) to bring in Human Tissue Bill / Soft Opt Out

Grants, access to housing, income, training, unemployment, anxiety and well-being were particularly relevant UHL unit mostly returned, but issues outstanding.

Range of topics currently being planned

As CFI Staff continue to work remotely, it has been a busy start to 2021 with round 1 of the exercise grant, advocating for vaccine priority for the CF Community, 65 Roses Day, webinars, a virtual annual conference and production of our annual report.

February First Round of CFI Exercise Grant opened and completed.

Second Round will be in June 2021.

239 grants to the value of €68,635 approved

February 19th: Post-Transplant Nutritional Survey launched

Initiative by Dietitian (post funded by CFI in the Mater Hospital)

www.cfireland.ie

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March March 1st: Webinar to mark Rare Disease Day including keynote speech by Professor Jane Farrar TCD on Gene Editing

Webinar organised and hosted by CFI

March 4th: Cohort 4 vaccination priority introduced.

Very high risk patients are reprioritised from cohort 7 to cohort 4.

CFI continues to advocate for all with CF to be prioritised as cohort 4.

Eventually all PWCF in cohort 4 before vaccine prioritisation system changed to age system.

CFI takes a leading role in sustained advocacy for this change on our own and as part of networks

March 18th: Meeting with Minister for Health, Stephen Donnelly, by Rare Disease Taskforce (HRCI, IPPOSI and RDI)

Submission and meeting coordinated by CFI

March 26th: This is part of the pipeline/portfolio deal EMA Committee recommends widening eligibility for Kaftrio, including strongly supported by CFI as part of the for F508D/R117H and F508/G551D genotypes more common in Orkambi deal in 2017 Ireland - subsequently approved by the EMA on April 28th

April April 2nd: CFI Vaccines Webinar.

Third in series of COVID-19 related webinars (2 previous webinars with other respiratory groups, including return to school).

Featuring Professor Martin Cormican and Professor Gerry McElvaney. A recording of the webinar is available to watch back on www.cfireland.ie

April 4th - 9th: CF Awareness Week including 65 Roses Day raises over €430,000 to date. Many events held around the country.

The most intensive fundraising and awareness raising period for CFI

Thanks to everyone for their support!

April 6th - 7th: CFI Annual Conference

Virtual conference held over two evenings.

April 9th: First CFI fundraising concert to mark 65 Roses Day

5,000 viewers in total and target of €20,000 exceeded

April 11th: Publication of CFI Annual Report 2020 Includes CFI accounts for 2020 approved by auditor and CFI Board

Sets out the context and impact of CFI in 2020

April - May Planning for next major fundraisers events including Women’s Mini Marathon; Malin to Mizen; Head to Head; International Walk

All dependent on COVID-19 regulations

April- May Organising next series of Webinars

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See Conference Report on page 13

Range of topics currently being planned

Spectrum / Summer 2021

Kaftrio Extension to More Patients in Ireland On 28th April CFI welcomed the expected decision by the European Commission to widen the eligibility of the innovative and ground-breaking CF drug Kaftrio to more patients in Ireland.

The recommendation from the Committee for Medicinal Products for Human Use (CHMP) of the EMA, previously reported by CFI on 26th March 2021, was formally approved by the European Commission in April 2021.

Thanks to the portfolio/pipeline agreement that was supported by CFI in 2017 as part of our Orkambi campaign, the additional eligible patients with CF aged 12 years and over will be able to gain access to Kaftrio in weeks to come, provided of course they consent and approval is given by their clinical teams.

People with CF, aged 12 and over, who have one copy of the F508del mutation, regardless of their other mutation type, will be eligible for Kaftrio.

With this extension of the indication, CF patients 12 years and older who are heterozygous for the F508del-CFTR mutation and a residual function (F/RF) or gating mutation (F/G) are eligible for the triple combination therapy for the first time, and the majority of people aged 12 years and older with CF in Europe are now eligible for Kaftrio.

This will mean, for example, that some patients currently on Kalydeco may decide to switch to Kaftrio if approved by their clinical teams. Others may wish to continue with Kalydeco.

CFI plays leading role in vaccine prioritisation for people with CF CFI played a leading role in advocating for those at very high risk from COVID-19 to receive significantly higher prioritisation. This advocacy was successful and resulted in a new cohort 4 under which almost all people with CF have now been vaccinated. Part of CFI’s advocacy was to argue that all individuals at very high risk should be prioritised for vaccination and this advocacy benefitted other non-CF patient groups in Ireland.

CFI Annual Conference 2021 Cystic Fibrosis Ireland’s annual conference took place virtually from April 6-7th. The theme of the conference was "The Road Ahead for CF in Ireland: The Progress and Challenges".

The conference covered a wide range of issues including how new and innovative drug therapies are beginning to turn CF into a more manageable long-term disease, the challenges of starting a family with CF, the impact and legacy of COVID-19 on the lives of people with cystic fibrosis, CF-related diabetes and an update on several research topics.

The conference was chaired by Keith McCabe and Patricia Duffy-Barber. In addition to the sessions, the Fundraising Awards were announced, the annual raffle took place and an update was provided on CFI services and supports.

Session recordings from the conference are now available to watch back on our website, www.cfireland.ie www.cfireland.ie

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Annual Report 2020 The CFI Annual Report for 2020 was published at the 2021 Annual Conference in April and is available to download from www.cfireland.ie Vaccines Webinar Professor Martin Cormican and Professor Gerry McElvaney were the keynote speakers at CFI’s Webinar on COVID-19 vaccines and the CF community on April 2nd 2021. They were also joined by CFI Chairperson, Keith McCabe, Vice-Chairperson, Patricia Duffy Barber and Senior Research & Policy Officer Dr Sarah Tecklenborg, for a panel discussion and to answer questions submitted by the CF Community.

You can watch back the webinar on our website.

Rare Disease Task Force Meets Minister CFI chairs the 'Rare Disease Task Force' and on March 19th 2021 we met with Minister Donnelly. We discussed a wide range of issues of concern for all living with a rare disease, including many important issues of direct concern for people with CF. The meeting and submission were co-ordinated by CFI. Some key points arising from the meeting: 1. Agreement to update the National Rare Disease Plan, to reconvene regular meetings and to appoint a liaison person from the Department of Health 2. Professor of Genomics appointment imminent 3. Further advocacy for access to new and innovative drug therapies; newborn screening expansion; and funding for health research, including for rare diseases and issues such as orphan codes and health legislation enactment Rare Disease Day Webinar A webinar took place on March 1st 2021 to mark Rare Disease Day. This was the first webinar for rare diseases and this year was organised by CFI. Key points included: • Presentations from two rare disease patient groups: Sickle Cell and Thalassaemia Ireland and 22Q11 Ireland • The potential of gene editing for those with rare diseases: guest speaker Professor Jane Farrar; Research Professor in Genetics, TCD • An update on progress and challenges related to rare disease policy • Towards a UN resolution on rare diseases

A NEW FACE IN FUNDRAISING We are delighted to welcome Orla Maher to the fundraising team.

Orla began working as the Community Events and Individual Giving Coordinator with Cystic Fibrosis Ireland in March 2021.

With a background in Media Production and Event Management, Orla has worked on a variety of campaigns and events for both the non-profit and corporate sectors. Her previous employers include: Gorta, Debra Ireland and The Alzheimer Society of Ireland.

With a passion for the Arts and Filmmaking in particular, Orla has also worked on a number of TV and Film productions as an Art Director.

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Spectrum / Summer 2021

Fake and Forgotten Therapies for CF and the Role of Clinical Trials In these days of increased awareness of fake news and fake science, it is worrying to still see some promoting therapies or ‘research’ that are patently false, inferring outcomes that will never be met and which are likely to involve another agenda, often concerned with selling a product/making money or some form of quack theory, not backed up by credible medical evidence.

One such advert recently appeared in a national newspaper in Ireland seeking to recruit people to a research project for a diet that could ‘reverse’ Cystic Fibrosis and other diseases such as Multiple Sclerosis. While we all know diet plays an important role in managing many diseases including CF, chronic long-term progressive genetic diseases like CF will never be ‘reversed’ by any diet regime.

Such adverts are not just misleading, but are also offensive as they have the potential of raising expectations that will never be fulfilled. Similar promotions may distract others, especially with poorer health literacy skills or those more susceptible to fake science, from keeping up with their treatment regime or taking part in real health research/clinical trials.

More surveillance and action may be needed by the relevant authorities in Ireland, including advertising standards and those in the relevant health bodies. The main law covering advertising in Ireland is the Consumer Protection Act 2007. This protects consumers from misleading or false advertising. Under the Act, it is an offence for a business to make false claims about products, services or prices.

The Advertising Standards Authority also has a code of practice on misleading and false advertising. The Health Products Regulatory Authority (HPRA) has also an important role. There is also, of course, an important duty of care on the media to closely vet health-related adverts.

If you see a health therapy that is patently false/misleading we advise it should be reported. If in doubt, please contact Cystic Fibrosis Ireland.

Forgotten Therapies for CF Older people with CF may well remember therapies that are no longer advocated for use in CF care. The ‘Thumper’ as it was commonly known is one such example. This was a rubber mat spread over the lap of a parent on which children with CF were given very rigorous physiotherapy. Initially popular, the ‘Thumper’ was discontinued, possibly due to the injuries that some received from incorrect/over-rigorous use.

The role of Clinical Trials in authorising new and innovative therapies Nowadays, before a medicinal therapy/product can be authorised for use in Ireland, it must go through the clinical trials process to ensure that it is safe and effective.

Clinical trials begin with small studies in a controlled population of volunteers and, as safety and efficacy data is gathered, expands to large scale studies in patient populations. These large scale studies will often investigate both the new product alongside the currently used treatment to see how these two compare. As information is obtained, larger numbers of patients are exposed to the new product and more safety data can be collected.

Information on the quality of the product and its non-clinical safety will have been obtained before the clinical trial programme commences.

The first example of what we now understand as the "accepted approach" to clinical trials only commenced in the 1940s. The UK Medical Research Council’s trial of Patulin for the common cold in 1943 is the first widely accepted double-blind controlled trial. This piece of research paved the way for the first randomised control trial of streptomycin in pulmonary tuberculosis carried out in 1946. ‘This landmark trial was a model of meticulousness in design and implementation, with systematic enrolment criteria and data collection compared with the ad hoc nature of other contemporary research’ (Bhatt, 2010). www.cfireland.ie

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SPOTLIGHT: Can I get a mortgage with CF?

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he Independent Living report published by CFI in 2018 showed the Irish CF population are increasingly living more independent lives.

In 1998 74% of people with CF lived with their parents in their parents' home.

By 2017 that had reduced to just 43%, showing that more and more people with CF were moving away from home and establishing independent lives.

There are over 1,400 people with CF in Ireland and as of end of 2019, 54% of the Irish CF population were adults - see CFRI 2019 Annual Report.

The increasing number of adults with cystic fibrosis presents new challenges for the Irish CF population as a collective group. Previously these challenges were limited to just a few individual experiences.

One of the most pressing issues for adults with CF is suitable accommodation when they do leave their parents' home. The options fall into 3 broad strands - private rental, private ownership or local authority housing.

Since many adults with CF are well educated with qualifications (as seen in the CFI Independent Living Report 2018), many enter the workforce either part-time or full-time. As a result, many are ineligible for local authority housing based upon means testing.

The private rental sector is tough for anyone, but especially for a person with CF. Sharing your living space with others in shared accommodations and managing your CF with all its demands and impacts on your health is a very difficult experience for many. This was before COVID-19 arrived on the scene. Now with the global pandemic, many people with CF have been forced to give up their independence and move back with their parents due to the infection risk of COVID-19 by sharing accommodation with others who they could not guarantee would follow public health restrictions and public health advice around preventing the spread of COVID-19.

Independent living is an ambition that many PWCF strive to achieve. Many PWCF find themselves living at the parental home longer than anticipated due to the chronic shortage of housing stock, rental units and excessively high housing prices and cost of renting. Independent living isn’t necessarily living separately to your parents however - you can live independently without moving out of your parental home where circumstances facilitate your independence to manage your own finances and lifestyle choices. Many PWCF may choose to continue to live in the parental home with all the care and love that is provided. Indeed many PWCF living in the parental home may find the carer role reverses where they become the carer for their elderly or infirm parents. Each person with CF will have their own concept of what independent living means for them and that can change as they progress through life. Adult PWCF living at home with their parents or family members can often feel cramped, both physically in terms of space but also mentally. This is especially the case for those who have had to give up their independent living arrangement to move back to their family home because of COVID-19 risk, financial circumstances or changing health circumstances.

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Spectrum / Summer 2021

It is of no surprise really then that the volume of queries CFI receives on a weekly basis asking about mortgages and mortgage protection insurance has increased dramatically since the onset of the COVID-19 pandemic. These queries had already begun to increase in frequency in the last 3-5-year period even prior to COVID-19, reflecting the increasing health and survival of the Irish CF population and their natural aspirations to live independent lives.

The frequent questions presented to CFI are “How can I get a mortgage?” and “Can I get mortgage protection insurance?”

In short the answer is yes, you can get a mortgage but, no, most likely you will be unable to get mortgage protection insurance due to your CF. So, what’s the problem?

In Ireland it is a legal requirement when taking out a mortgage that you must also take out mortgage protection insurance. This insurance is tied to your mortgage loan. If your mortgage loan is a 20-year loan you must take out a 20-year mortgage protection insurance policy.

There are numerous types of mortgage protection insurance products. However, CFI are not aware of anyone with CF in Ireland who has been successful in obtaining a mortgage protection insurance policy in the recent past (five years approximately) and many PWCF have approached us in CFI complaining that they were refused this insurance.

We contacted Insurance Ireland about this issue and they responded that all applicants would be assessed on an individual basis upon application for mortgage protection insurance.

But there is a way around the hurdle. There is a process where you can sign a waiver that exempts you to the legal requirement for mortgage protection insurance. To do so, you must prove to your bank or lender that you can not obtain mortgage protection insurance. You must have three refusals in writing to mortgage protection insurance applications by separate insurers as proof that you can’t obtain the insurance.

Your bank or lender unfortunately is not legally obliged to accept your waiver. Whether or not they proceed with your mortgage loan really depends on your holistic personal financial position and your partner’s financial position, if applying as joint applicants.

More information is available from Citizens Information - www.citizensinformation.ie/en/housing CFI advises you seek independent financial advice from a professional financial advisor. Your bank or lender will offer you financial advice also, but it is wise to seek independent advice from a professional not employed by your bank or lender.

If you don’t know or can’t source a financial advisor, we can suggest to you Blue Chair Financial Planning - please ask to speak to Tom O’Neill. Tom has successfully helped PWCF through mortgage applications.

Website:

https://financialbroker.ie/broker/blue-chair-financial-planning/

Email:

Tom@bluechairbroker.ie

Phone:

01 558 1969

You should read up on general information on mortgages. Banks and lenders will have such information but you can also visit the Competition and Consumer Protection (CCPC) website. There is an online guide to get you started: https://www.ccpc.ie/consumers/housing/buying-home-step-by-step-guide/ A financial advisor will examine all your personal financial circumstances - your income, your household expenditure, any loan repayments such as a car loan and credit card debt and your savings and investments. They will advise how to get your finances into a good shape before you apply for a mortgage. www.cfireland.ie

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One product they may recommend to you is life insurance. Ironic that while PWCF seem to be refused mortgage protection insurance, they may still be offered a life insurance product by the very same insurer. The difference is a life insurance product is not tied to your mortgage. So, you may be offered a reduced term life insurance due to your CF such as a 3 year, a 5 year or maybe a 10 year product. The premium you pay will be loaded based on you having CF and could cost you a multiple of what a non-CF age-matched peer might pay. For example a €200,000 life insurance cover could cost you say €150 per month in premiums but the same product might only cost say €50 per month for a healthy peer. You need to examine what premium, if any, could you afford to pay toward a life insurance product.

A bank or lender may be prepared to continue your mortgage application without you having any life cover in place. However, having a life insurance product in place will weigh in your favour when being assessed by a bank for mortgage loan. If you can’t manage to obtain life insurance from an Irish Insurer, you can try Pulse Insurance UK – a company who can provide lifer cover policies for PWCF in Ireland. They specialise in life cover for higher risk individuals see https://www.pulse-insurance.co.uk/ Life insurance would serve as a financial assistance package to your partner or your family if you were to die during the term of the cover where otherwise they may struggle financially upon your death. It offers protection and peace of mind, but it will be expensive for you.

You should check if your employer has any policies in place such as death in benefit where a multiple of your salary is paid to your estate in the event of your death. Also check for serious illness cover, income protection and sick leave policies. All these products would be weighed in your favour by your bank or lender when assessing your mortgage application.

There are some Government schemes that offer financial assistance towards buying your home so be sure to check these out: • Rebuilding Ireland Home Loan: http://rebuildingirelandhomeloan.ie/ • Help to Buy: https://www.revenue.ie/en/property/help-to-buy-incentive/index.aspx If your home or intended property needs some refurbishment be sure to check out energy improvement grants from Sustainable Energy Ireland that you could avail of in parallel with your planned refurbishment https://www.seai.ie/grants/ Properties with higher BER energy ratings may qualify for lower interest “green” mortgage rates. These could save you money in the long term and might justify the costs to upgrade your property and ultimately offer you cheaper energy bills and a warmer home. As an example, at time of writing, AIB offers a 2.1% green 5-year fixed rate mortgage product for properties from A1 to B3 energy-rated homes.

If you have obtained mortgage protection insurance in the recent past we would really love if you could let us know your insurance provider.

If you have any further questions on mortgages please contact us here in CF Ireland. Email Info@cfireland.ie or phone 01 496 2433. You can also speak to Rory directly on 087 932 3930 or email rtallon@cfireland.ie With rising property prices and reduced housing stock, the market is like surviving the Hunger Games!

May the odds ever be in your favour.

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Happy house hunting!

Spectrum / Summer 2021

My Mortgage Experience so Far Recently, a person with CF secured mortgage approval as a sole applicant. This is the first instance that CFI is aware of where a sole PWCF was successful in securing mortgage approval and is a huge step forward for people with CF living independently. The individual has chosen to remain anonymous, but below is their experience of the mortgage process.

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s a 38 year old single applicant for a mortgage, I knew that having CF was going to make it more complicated than normal. In fact, up until last year my understanding was that it would not be possible to get a mortgage as a person with CF due to the difficulty in getting mortgage protection. However, this was based on what I heard of other people's experiences as I had not personally applied.

In March last year due to Covid, I moved out of the houseshare I was in and back to my family home. This was something of a catalyst for me and made me realise I needed to take some steps to proactively get out of the cycle of renting that I have been in since I was 18. It was around this time that I decided to take the first steps in applying for a mortgage to ‘test the process’ and see for myself if I was going to be refused.

I began by applying for a mortgage directly from the bank in the normal way. I had phoned a few brokers also around this time but none of them were keen to take on a single person with CF in the middle of a pandemic! I spoke to the mortgage advisor in the bank and she did not seem phased by my situation. She explained that if I could not get mortgage protection, I could apply for a mortgage protection waiver. I was dubious and felt that she was being overly optimistic on my behalf or didn’t really know her job, but I continued with the process. In my favour, I have a permanent job in an area that was not affected by COVID-19 so the initial stage of my mortgage approval went through quickly and without any issues. However, as mortgage protection does not come into it at this stage, it is not until you actually go sale agreed on a property and start the process of confirming the mortgage that the issues become apparent.

Shortly before Christmas, I went sale agreed on a property and contacted the bank to let them know. At this point, I was asked to secure mortgage protection which I attempted to do. None of the companies who I contacted were prepared to provide mortgage protection once I had completed the medical questionnaire. The bank requested two mortgage protection refusals which I provided and at this point the process of requesting the mortgage protection waiver began. The waiver was granted within a few weeks and once I was prepared to sign the waiver, I could go ahead with the mortgage. I know that buying a property without mortgage protection would not be palatable for many people but for me, in my situation, I was very happy to go ahead. Mortgage protection means that the mortgage will be paid off in the event of your death and to be blunt about it, my main priority is to have a home to live in while I am alive and I’m really not that worried what happens the house in the event of my death!! I know that if anything happens to me the house will be sold and the mortgage will be paid off so there will be no negative impact for anyone (I realise that for people who have partners and families, they are in a different situation in this regard). Once the mortgage protection waiver was in place, the bank issued the mortgage contract with the waiver to sign and I was good to go. Unfortunately, it is important to point out that I am not writing this from my new home as there were a few further challenges ahead in the house buying process.

As anyone who has tried to buy a property knows, it is rarely a smooth road, even when you don’t have an underlying health condition, and this was also the case for me. When I completed the pre-purchase survey, I realised that there was a lot of work that needed to be done to the house which wasn’t evident initially, so I made the decision to pull out from the purchase. So for me the search continues, but I feel more confident going forward that I can now access a mortgage. If nothing else the experience has allowed me to test the process for myself and search daft.ie knowing that it is possible!! Given the outcome, I may be sharing this story prematurely, but hopefully my experience will be helpful for someone else in a similar situation.

www.cfireland.ie

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Member Services A

s our PWCF members are receiving their vaccinations and looking forward to resuming some activities over the coming months, we are delighted to remind members that CFI offer a number of grants to support their physical, financial and psychological well-being.

Exercise Grant – Round 2 opens 21st June 2021 There are two opportunities for members to apply to the Exercise Grant scheme each year. Round 1 is announced in January. Round 2 opens later in the year, normally in September. In 2021, we have brought round 2 forward to 21st June. It is imperative that you apply on the morning of 21st as usually the round opens and closes in one day due to the very high number of applications.

Is the grant Means tested?

No, the grant is not means tested so income is not taken into consideration when assessing your eligibility for the grant.

How do you decide who to award the grant to?

A number of things are taken into consideration when deciding if an application can be approved: 1. You must be a member of CF Ireland and meet all the grant criteria outlined in these guidelines 2. The application form must be successfully made online on www.cfireland.ie and a quotation or receipt must be uploaded.

3. Bank details must be entered and correct, including IBAN, BIC, name and address on account 4. The Exercise Grants are awarded on a first-come, first-served basis, providing all the grant criteria are met. A total of €90,000 is allocated to the exercise grant in 2021, €45,000 for each Round. Once this budget is exhausted, we cannot issue further grants until the next Round goes live (a new application form must be supplied for each Round).

What can the Exercise Grant be used for?

This grant can be used for any activity that constitutes physical exercise. Examples of purposes for which it can be applied for include: • Gym membership or Sports Club fees • Exercise equipment for home use, for example, treadmill, exercise bike, weights • Exercise or sporting lessons, for example, swimming lessons, horse-riding, yoga, or fitness classes • Trampolines • Bicycles Supporting Documentation: Information on what you plan to use the grant for, and official receipts or quotations / estimates for gym membership / equipment / exercise classes etc. must be included with the application. Receipts or quotations / estimates must be dated after the closing date of the last round. All such documentation must be authentic and legitimate.

Please contact any member of the member services team if you have difficulty making your application on the morning of 21st June 2021.

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Spectrum / Summer 2021

SOCIAL AND DISTRESS FUND What is the Social and Distress Fund?

The CFI Social and Distress Fund is administered to assist PWCF and their families during times of unexpected financial difficulty and hardship. This is a temporary assistance grant intended for someone in such need that they are unable to meet their families’ most basic needs. Assistance under this scheme is limited and applications will only be considered where other non-charitable sources and State supports have already been exhausted and are unable to help. Ongoing support for members cannot be provided through this scheme, which is restricted to a maximum of €500 in any 12-month period. Exceptional circumstances will be assessed on a case-by-case basis to establish if additional funding can be provided. All applications must be supported by a social worker or other health professional who has been involved in caring for the PWCF. Who is eligible to apply?

Any PWCF, spouse or parent living with the PWCF, is eligible to apply should they experience unexpected financial difficulty. All applicants must be registered members of CFI. What is the application procedure?

It will be necessary for the PWCF/family member seeking assistance to speak to the CF Social Worker in advance of making an application. In the absence of a CF Social Worker, please speak to the CF Clinical Nurse Specialist or CF Consultant. The Social Worker/other healthcare professional should carry out a needs assessment to determine and verify the level of support required and to ensure that all other avenues of support have been explored in advance of contacting CFI. There are two different levels of grant assistance available. The application procedure varies depending on the level of financial support being requested. Details on application processes for each Level are outlined below.

Level 1 Assistance (max €300) – Application Process A supporting email or letter of recommendation must be sent by the social worker or other member of the CF team to CFI to endorse the application. This correspondence should establish the general circumstances of the applicant, the background events leading to the application and refer to other avenues of support already pursued.

Level 2 Assistance (€300-€500) – Application Process A Distress Fund Application Form must be completed for all applicants seeking Level 2 assistance. This should be completed by the PWCF/family member in conjunction with the CF Social Worker or other healthcare professional.

Depending on the needs of the applicant and their financial hardship, CFI may also ask the applicant to link in with other local support services e.g. the local MABS and request a report to further support their application. Financial assistance issued through this scheme will, in most cases, consist of a once-off payment.

How are applications assessed?

Applications are assessed on a case-by-case basis and in the strictest of confidence. Decisions will be based on supporting documentation and level of hardship outlined.

When are the application deadlines?

Applications must be submitted by 4pm of each Friday in order to be considered in the following week’s assessments.

You need to allow 5 working days for a response. CF Ireland aims to respond to all applications, successful or not. CFI will communicate the decision regarding the application to the applicant and the social worker/healthcare professional.

It is possible, in emergencies only, for the CEO to consider applications between assessments. This must be requested when the application is submitted and is subject to the availability of the CEO. www.cfireland.ie

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COUNSELLING FUND What is the counselling fund?

CFI offer to fund up to 8 sessions for a member who wishes to avail of counselling. Please contact any member of team in strictest confidence if you wish to get more information on this scheme.

Medical Card holders are entitled to 8 sessions under Counselling in Primary Care and we refer members to avail of this scheme where appropriate.

A list of available mental health supports and services can be found on the HSE website, www.hse.ie or for details on supports available from CF Ireland visit www.cfireland.ie

MEMBER SUPPORT In addition to grants, the member services team provide personal advocacy to the CF Community on a wide range of issues. The impact of COVID-19 on the CF community was more than most in Irish society. 2020 saw a significant increase in support calls to / from the member services team. The pandemic resulted in many direct and indirect impacts on the CF community in Ireland, including health and well-being, but also contributed to broader anxiety around issues such as hospitalisations, job security, concerns surrounding income, restrictions to education and consequent reduced opportunities for independent living for people with CF. Below is a breakdown of areas direct support was provided by the member services team in 2020.

It is no surprise that COVID-19 was the main area of communication, but support was provided on a range of topics from employment to housing, genetic screening to benefits and entitlements. We hope that by sharing this, it will highlight the expertise of our member services team and encourage you, the CF Community, to contact us for support on any issues you may have.

A presentation outlining the work of the Member Services team was given at our annual conference and can be viewed back on www.cfireland.ie. Please contact any member of the team if you require support: Samantha Byrne Caroline Heffernan Rory Tallon sbyrne@cfireland.ie

cheffernan@cfireland.ie / 087 932 3933

rtallon@cfireland.ie / 087 932 3930

or call CF House on 01 4962433

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Spectrum / Summer 2021

Conference Report Cystic Fibrosis Ireland Annual Conference Cystic Fibrosis Ireland’s annual conference was held virtually this year from April 6-7th.

CF & COVID-19 Professor Luke O’Neill, School of Biochemistry and Immunology, Trinity College Dublin, spoke about the legacies of the COVID-19 pandemic and how this may impact future care for people with CF. Inflammation in the lungs in COVID is driven by an inflammatory pathway, the inflammasome. There is overactivation of the inflammasome in COVID patients and this is associated with COVID-19 severity. Prof. O’Neill discussed some of his own team’s work on Itaconate, a molecular by-product of the Krebs cycle, which is made by the immune system to suppress inflammation. Their research showed that itaconate modifies the NLRP3 inflammasome and suppresses its activation.

Inflammation in lungs as applies to COVID, also applies to CF and so we may get therapies for CF as an unintended consequence of developing therapies for COVID. Clinicians and researchers are already investigating these inflammatory pathways in CF. Prof. Gerry McElvaney, Respiratory Consultant in Beaumont Hospital, in collaboration with Prof. O’Neill, is investigating the inhibition of NLRP3 inflammasome as an antiinflammatory strategy in CF. Lessons learned through the development of treatment strategies for COVID-19 may translate into therapies for CF. Science has helped us find a way out of the pandemic with the vaccines and Prof. O’Neill noted things people could do to optimise their immune systems to protect themselves and make sure the vaccine works: getting enough sleep (7-9 hours per night); managing stress by taking time to practice self-care like reading a book; eating healthy foods including lots of nutrient rich fruits and vegetables; staying active for optimal immunofunctioning and sticking with moderate activity levels.

Iron deficiency has been linked to impaired humoral immunity to vaccines. Prof O’Neill discussed data which suggests that serum iron levels are important for lymphocyte (a type of white blood cell important in our immune system) functioning during infection and vaccination. The strategy of iron supplementation may boost vaccine efficacy.

Restrictions in travel combined with the adoption of public health measures have meant that we haven’t seen evidence of the annual circulation of flu. This was also experienced in other countries.

There could be an argument for the continued use of masks each winter to combat the flu and ease pressure on the hospital system. www.cfireland.ie

13

In spite of the potential for positive developments to result from COVID-19, a year spent living through a pandemic has severely impacted the lives of people with CF. Dr Rini Bhatnagar, PhD student in University College Dublin, presented the results of a joint study between Prof. Patricia Fitzpatrick in UCD and CFI, which was conducted in September/October 2020. A total of 119 people with CF and 123 parents of children with CF took part.

A total of 47.5% of people with CF, and 55% of parents of children with CF deferred their own or their child’s hospital visits during the COVID-19 pandemic. In this regard, 25.9% of people with CF and 16.2% of parents of children with CF, who deferred a visit, did so for longer than six months. Fear of contracting COVID-19 was the predominant reason given for deferral. Among people with CF who deferred appointments, the deferral impacted mainly on medical care in hospital, rehabilitation therapies, diagnostic tests and GP appointments. This is of particular concern as routine examination is the key to early intervention in infective exacerbations of CF and the detection of deterioration in the disease.

The methods by which people with CF consulted with healthcare professionals during the pandemic also changed.

Online consultations and telemedicine were new ways of being seen for approximately half of people with CF, and the majority found it helpful. Over half of people with CF (53%) received their prescriptions via email during the pandemic and, of those who did, more than 80% found this very beneficial. A smaller number of PWCF used online education or online physiotherapy classes, but those who did found it beneficial.

Access to medication during the pandemic was a challenge for some people with CF, with 13.2% of parents of children with CF and 30.3% of people with CF reporting difficulties. One child with CF and 7 adults with CF had to stop taking a medication and find an alternative due to lack of availability.

Children with Cystic Fibrosis and their families – managing challenges during the COVID-19 pandemic Rini Bhatnagar 1, Sarah Tecklenborg 2, Ricardo Segurado 3, Patricia Fitzpatrick 4

1 School of Public Health, Physiotherapy and Sports Science, University College Dublin, Dublin, Ireland , 2 Cystic Fibrosis Ireland, Dublin, Ireland, 3 School of Public Health, Physiotherapy and Sports Science, University College Dublin, Dublin, Ireland , 4 School of Public Health, Physiotherapy and Sports Science, University College Dublin, Dublin, Ireland

INTRODUCTION During the COVID-19 pandemic individuals suffering from severe respiratory conditions including cystic fibrosis are considered to be under very high risk (extremely vulnerable) category and to reduce the risk, those people who fell under very high-risk category were advised to cocoon at the start of the COVID-19 pandemic in Ireland in March 2020. As the pandemic continued the ability of hospitals to maintain normal services was under pressure.

AIMS AND OBJECTIVES AIM: • To determine the ways in which children with Cystic Fibrosis and their families managed their lives during COVID-19 pandemic.

OBJECTIVES: • Deferral of hospital visits during COVID-19 pandemic • Ways through which GP/consultants were approached for consultation during COVID-19 pandemic and satisfaction with outcomes.

• Precautions taken by family and the child/ person with CF (both indoor and outdoor) during the pandemic.

• How people with CF /parents of children with CF managed their disease during the pandemic, in terms of access to medication and other supports

100

METHODS

Consultation with child’s health professional during COVID-19

80 60 40

• Cross-sectional study • Internet based self- administered questionnaire • Hosted by CF Ireland and advertised via Twitter, Instagram, Facebook and CF WhatsApp groups

Study type

• Conducted between UCD and CF Ireland research teams. The study was approved by the National REC for COVID -19.

• Tick at the start of the survey • Both for data collection and processing

Informed consent

20 0

Online consultations / Telemedicine

Prescriptions via email

Online education/training

Yes, and this is new to me Yes, and it enabled me to keep in touch with my health professionals

100 80 60 40 20 0

Online exercise/physiotherapy classes

Yes, and it was already the case before COVID-19 No

Experience of consultation during COVID-19

Online consultation/telemedicine

Prescription via email Very useful

Fairly useful

Online education/training Not very useful

Online exercise/physiptherapy classes

Not useful at all

Precautionary measures taken by family during COVID-19 Minimizing activities outside your house and garden

77.2

Strict avoidance of public gatherings

70.7

Completely avoiding contact with persons showing…

64.1

All household members have cocooned since the…

43.1

Medication or food were delivered at home

37.4

Other

RESULTS

22.8

Only the PWCF has cocooned (living separately in…

0

Deferral of hospital visits

Reasons for deferral 45

45%

Yes

5 0

No

Variable Medicine availability Yes No, temporary unavailable No, had to stop it/alternative Protective equipment (masks/gloves) Available and easily accessible Difficult to find, sometimes not available

18.1

20 15 10

Hospital unit was closed

Fearful of COVID-19

How long Above 6…

42.6

3 months 2 months

8.8

1 month 0

1 month

10

2 months

13.2 20

3 months

30

40

50

60

70

80

90

n (%) 105 (86.8) 15 (12.4) 1 (0.8) 108 (87.8) 13 (10.6)

Impossible to find, not available

0 (0.0) 2 (1.6)

Not needed

CONCLUSIONS

16.2 19.1

4-6 months

20

Access to medication and protective equipment during COVID-19

41.2

40 35 30 25

55%

8.9 10

30

4-6 months

40

50

Above 6 months

Key challenge: Deferral of Hospital visit

Technology for CF care

Online consultation Prescription via email

In approximately 40% of people with CF and the parents of children with CF, all household members reportedly cocooned since the start of the COVID-19 pandemic. Mental health issues were reported by 74% of adults with CF and 71% of children with CF. These included increased stress (33.3% of children with CF; 21.3% of people with CF); excess anxiety (25.6% of children with CF; 33.7% of people with CF); difficulty sleeping; easy irritability; and feelings of insecurity. Older children reported more mental health issues than younger children.

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Spectrum / Summer 2021

New Therapies Dramatic improvements in CF treatments, including the development of cystic fibrosis transmembrane regulator (CFTR) modulator therapies and standardised multi-disciplinary patient care have increased the median predicted survival age of CF. Prof. Paul McNally, lead CF paediatric consultant at Children’s Health Ireland at Crumlin, shared research into the impact of ground-breaking new therapies for people with CF and the benefits that earlier initiation of therapy may provide.

Prof. McNally presented phase 3 study data looking at % FEV1 (a measure of lung function) changes with CFTR modulators. Ivacaftor, a highly effective modulator treatment, gave an immediate 10-12% increase in % predicted FEV1. Kaftrio showed similar results. The earlier a patient starts modulator therapy, the greater the reduction in sweat chloride levels achieved. Ivacaftor and Kaftrio significantly reduce sweat chloride levels, with Kaftrio superior to Ivacaftor. The effect was greater in those aged 6-11 compared with those aged 12+ for both Ivacaftor and Kaftrio.

The ultimate aim of medical care should be to prevent decline not just to slow it. Prof. McNally highlighted evidence from an animal model study, undertaken by Xingshen Sun and colleagues, of the impact of prenatal exposure to a modulator therapy Ivacaftor. There was no pancreatic insufficiency seen in ferrets which were treated with Ivacaftor throughout pregnancy and in the post-natal period. Although we are a long way from trials in humans, the data suggests we may one day be able to prevent organ damage in people with CF from birth.

Ivacaftor (Kalydeco) is now available for use in people with CF from four months of age with clinical trials investigating its use from birth to four months of age. Orkambi is in use from age 2-5 and Symkevi from age 6 and above. Kaftrio is available for use from 12 upwards, with recent trial data from those aged 6-11 showing its safety and efficacy in this cohort also. As trials progress the hope is that within a few years clinicians will to be able to treat over 90% of babies with CF from birth.

The great progress in modulator therapies is exciting but uneven. There are still some people with CF who have mutations which are not covered by any of the currently available modulator therapies in addition to people with more advanced disease who may not see as much of a benefit from the modulator therapies. For these people health maintenance is the focus.

Research Developments Dr Martina Hayes, University College Cork, discussed her team’s research into oral health and dental care in CF. Dr. Hayes is Principal Investigator on a collaboration between the dental hospital in UCC, the adult CF team in CUH and CFI. The main aim of the study is to look at oral health of PWCF and the implication of CF for those providing oral health care to PWCF. A third of people with CF will develop osteoporosis and may begin bisphosphonate therapy for osteoporosis in their 20s and 30s. The avoidance of extractions is recommended in those who have used bisphosphonates for more than three years due to the impaired bone healing and increased risk of osteonecrosis associated with their use.

In advanced CF, people with CF may require transplant of the lung, heart, liver, kidney, or pancreas and must be certified as dentally fit for surgery. If dentists are approached late in the process there is an urgency to complete dental treatment for timely placement on the transplant waiting list. This urgency means the choice of treatment may be limited to extractions as protracted courses of gum disease treatment or root canal are not possible.

Targetted oral disease prevention strategies are really important for people with CF and the aim should be to achieve little or no dental disease in people living with the condition. www.cfireland.ie

15

Dr Audrey Tierney, University of Limerick, discussed the emergence of overnutrition in people with CF as a result of the impact of the CF “Legacy Diet” which focussed on high-fat, low-nutrient diets with individuals encouraged to achieve large calorie intakes in any way feasible in order to meet weight goals. CF populations in many countries live in the same “obesogenic” environment as the general population. The effect of the CFTR modulator therapies on anthropometric parameters depends on the genetic mutation and the type of modulation therapy used, for example significant weight gain was seen with ivacaftor use in children and adults who had at least 1 copy of the G551D mutation. In adults with at least one copy of the R117H mutation, the effect of ivacaftor on BMI was not significant.

The current environment, with the addition of current therapies for CF may be negating the need for the traditional high energy diet in many people with CF. Continuing with this traditional approach to diet may be contributing to excessive weight gain in some people with CF. This continues to exist alongside malnutrition. There is a need to look at diet quality in CF. Dr Tierney is currently undertaking a systematic review of what adults with CF typically eat.

The reported energy intakes for PWCF identified in this review are typically 91-141% of the averages for the healthy population. Micronutrients were inadequate in most studies from diet alone and essential levels can and were achieved with supplementation. Dr Tierney is Principal Investigator on a Health Research Board / Health Research Charities Ireland and CFI joint-funded project which aims to examine the nutrient intakes, dietary patterns and the overall quality of the average diet consumed by adults with CF living in Ireland.

CF & Pregnancy One of the signs of hope for people with CF is that more people with the condition are feeling well enough to start a family. The Independent Living and Cystic Fibrosis report, published by CFI, reported that 26% of respondents with CF aged 21 years or more were parents in 2017. This question was not asked in a 1998 report as it was unlikely that any people with CF were parents.

Unfortunately, many people with CF, as a result of their condition, cannot conceive naturally and may require extremely costly fertility treatment. CFI is urging the government, as part of new legislation on assisted human reproduction, to put the necessary funding in place to support people with CF who need fertility treatment supports.

At the conference, two people with CF spoke eloquently, honestly and openly as they shared their experiences of fertility struggles, pregnancy complications and life as parents with CF, including the impact of their CF on family life.

Dr Jennifer Donnelly, Consultant in Obstetrics and Gynaecology, Rotunda Hospital, Dublin, updated people with CF on the options available for those wishing to start a family, the obstetric care of a woman with CF through her pregnancy, and pregnancy outcomes for women with CF. Pregnancy should not be considered a medical complication but as a part of life, a key psychosocial transition point, which requires increased support for fertility related issues, as well as parenthood.

Women with CF in pregnancy should have access to a co-ordinated multi-disciplinary obstetric and CF medical clinic, avoiding the need to attend multiple appointments and poor communication between senior specialists responsible for all aspects of their care.

Successful pregnancy rates in people with CF continue to rise despite fertility issues. Fetal and maternal outcomes have improved dramatically. For women with CF who become pregnant and who have well-preserved lung function, stable and adequate nutritional status, and well-controlled diabetes, the long-term outcomes for their disease appear to equal those who have never experienced pregnancy.

Recordings from the conference are available to view on www.cfireland.ie

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Spectrum / Summer 2021

Exploring Diet Quality in CF Enablers and barriers to eating a healthy diet in CF

D

r Audrey Tierney, a Senior Lecturer in Nutrition and Dietetics at the University of Limerick was awarded a grant by the Health Research Board (HRB) and the Health Research Charities of Ireland (HRCI) with Cystic Fibrosis Ireland for a project called ‘Exploring diet quality in Cystic Fibrosis – enablers and barriers to eating a healthy diet in CF’.

We know that a diet high in energy and fat has typically been advised to people with CF to reach weight or body mass index (BMI) goals because of the relationship between BMI and lung function. Often times these diets tend to be higher in saturated fat, sugar and salt and lack essential nutrients. Whilst studies in this area have documented nutrient intakes (e.g. energy, fat, carbohydrates, protein), there is a lack of data on overall diet quality, especially in adults with CF (i.e. meeting food groups, getting sufficient vitamin intakes etc). In addition, no study has addressed the drivers and barriers to eating a healthy diet for people with CF. Audrey and the team at University of Limerick are aiming to explore more about the diets that people with CF living in Ireland consume on a day-to-day basis, look at the overall quality of the diets and investigate the impact that the diet has on CF and on quality of life.

Any person with CF (older than 18 years) can participate in the study What will the study involve: • Completing a food diary and some questionnaires (can be completed online or paper-based, whatever suits best)

UNIVERSITY OF LIMERICK AND CYSTIC FIBROSIS IRELAND

EXPLORING DIET QUALITY IN CYSTIC FIBROSIS (CF) What do adults with CF eat and drink?

Does diet impact on symptoms and quality of life?

What are the barriers in CF to eating a healthy diet?

• Online focus groups will be run to talk about what influences people with CF with their eating habits or their diets and food practices. This is an optional component of the study.

W E A R E A I DIET M I N G TQUALITY O E X P L O R E IN THE SE EXPLORING CYSTIC Q U E S T I O N SFIBROSIS T O B E T T E R(CF) INFORM THIS

This baseline information will then inform future interventions to assess the effects of a ‘healthier’ type diet in CF (for example, a Mediterranean-type diet) on some measures like BMI, lung function, inflammatory markers and quality of life to assess if energy and nutrient requirements can be met in a way that the quality of the diet is also achieved.

if Wyou E want A RtoE find A Iout M more I N GorTtoOcheck E Xyour P Leligibility O R E Tyou H Ecan SE email Q U EAudrey S T I OTierney, N S TDietitian OcallB or E and T TPrinciple E R I NInvestigator FORM THIS A R Eaudrey.tierney@ul.ie A OF PRACTICE

UNIVERSITY OF LIMERICK AND CYSTIC FIBROSIS IRELAND

AREA OF PRACTICE What do adults with CF eat and drink?

IF YOU ARE 18 YEARS OR OLDER WITH Does diet impact on symptoms and quality of life?

CYSTIC FIBROSIS AND INTERESTED IN toDeating healthy P AWhat R T I Care I P Ithe N G barriers I N T H Iin S CF STU Y W EaW OULD L O V E T O H Ediet?

AR FROM YOU

086 8652977

IF YOU ARE 18 YEARS OR OLDER WITH CYSTIC FIBROSIS AND INTERESTED IN PARTICIPING IN THIS STUDY WE WOULD LOVE TO HEAR FROM YOU

If you wish to get involved, or would like more information, please contact Audrey:

if you want to find out more or to check your eligibility you can

Email:

audrey.tierney@ul.ie

call or email Phone /Audrey Text: Tierney,086 865 2977 Dietitian and Principle Investigator

Twitter:

@AudreyTierney

Instagram:

audrey.tierney@ul.ie

086 8652977 @audreytierney

Details of the study are also available on the CFI website

www.cfireland.ie

17

65 Roses Day - You Thank you to everyone who

18

Spectrum / Summer 2021

u did it your way! supported 65 Roses Day!

www.cfireland.ie

19

CF Registry of Ireland Turning Data into Information

T

he Cystic Fibrosis Registry of Ireland (CFRI) was established in 2002. A patient registry is a secure, centralised database, containing health data on people with a specific diagnosis or condition.

The role of the CF Registry is to collect and record information on the health status of people with cystic fibrosis (CF) who agree to participate. By collecting and analysing information on all people with CF in Ireland, the Registry can better understand their health and wellbeing, and the treatments they receive.

Information collected allows the CFRI to; • Identify, record, analyse, and store information relating to the prevalence, incidence, and treatment of existing and newly diagnosed people with cystic fibrosis • Provide data on long-term prognosis for CF patients in Ireland and compare this with international data • Collect and analyse health information to help assess and plan health services for people with CF • Monitor the safety and effectiveness of CF treatments • Compare the health of people with CF in Ireland to the health of those in other countries • Compare CF management and treatment within Ireland and with best international practice standards • Initiate research into the causes, distribution, treatment and outcome of PWCF, and to participate in similar research initiated by others; and to publish the findings • Assist in the evaluation of novel treatments and screening programmes • Assist in the planning and management of health services and essential resources for PWCF Approved researchers use the registry to study cystic fibrosis treatments and outcomes.

The information is also used to: • Provide information to the public on the number of people with CF in Ireland and their health status • Produce publicly available reports each year that summarise registry information on the health status of people with CF in Ireland • Provide a CF information service to governmental agencies, health boards, hospitals, health care professionals, approved researchers and patient advocacy organisations • Contribute to CF research at home and abroad CFRI also provide consultation services on patient registry development, governance and operation, registry research project management and statistical analysis services to researchers, research bodies and patient organisations.

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Spectrum / Summer 2021

The CF Registry of Ireland is made up of four staff, who we would like to introduce you to below:

Godfrey Fletcher Godfrey Fletcher has been the Chief Executive Officer of CFRI since 2009.

He has a master’s degree in Business Administration, an honours degree in Natural Sciences, as well as a qualification as a European Certified Data Protection Officer.

Godfrey plays an active role in the development of registries, both in Ireland and internationally. His international business experience, as well as management experience for not-for-profit patient and research organisations brings a unique perspective to the development of patient registries.

Laura Kirwan Laura Kirwan is the Head of Research at the Cystic Fibrosis Registry of Ireland.

She holds a PhD in Statistics and worked as the CFRI Research Statistician before commencing her role as Head of Research in September 2020. She has had a varied career as a statistician, holding roles in environmental science, health and nutrition, before moving to the CFRI in 2016. Laura also lectures in Statistical Programming and Research Methods in UCD. Sumesh Babu Sumesh Babu, Senior Research Associate, has a master’s degree in Nursing from the University of Limerick, as well as having a background education in Microbiology and Clinical Research. Prior to joining the registry, Sumesh worked as a research coordinator, splitting his time between UCD and the Mater Hospital.

Sumesh is actively involved in the data collection process and works very closely with hospital-based data collection teams ensuring that data quality and accuracy is maintained.

Huw Rees Huw Rees is a Postdoctoral Research Fellow and Data Analyst who has been working with the Cystic Fibrosis Registry of Ireland since June 2020.

He was recently awarded a PhD from the School of Public Health, Physiotherapy and Sport Science in UCD, following the defence of his thesis investigating injury trends in field hockey athletes. Huw also holds a bachelor’s degree in Physiotherapy and is currently undertaking projects within the registry in this area.

The work of the registry not only helps to shape and improve CF care in Ireland, but it also allows CFI to better support the needs of the CF Community.

Participating in the registry has indirect benefits in terms of having better information that can help improve planning and delivery of care and services that a person with CF receives. The more people that participate, the better the quality of the information that can come out of the registry.

If you would like to participate in the registry, please contact your CF Centre of the CF Registry at info@cfri.ie. As outlined in the Winter 2020 edition of Spectrum, due to changes in GDPR, CFRI need to ask you to re-confirm your consent for them to collect this information. If you have not re-confirmed your consent, please contact your CF Centre or the Registry.

Participation is entirely voluntary. You are free to revoke your consent and withdraw from the registry at any time. www.cfireland.ie

21

Hospital Hub: Spotlight Q&A with Siobhan Hatten, CF-related Diabetes Nurse Specialist, SVUH

CF

Ireland were lucky to have a virtual Q&A with nurse Siobhan Hatton from St Vincent’s University Hospital (SVUH). Siobhan is the only CF-related Diabetes nurse specialist working in Ireland.

Liz Jacques, Regional Development Officer, had a virtual ‘sit down’ with Siobhan to ask her more about her role and her insights into this specialist area of nursing.

Tell us a little about your educational and professional background and how you came into your current role?

I graduated from University College Dublin (UCD) with a BSc in Nursing in 2007 and during my nursing training in St. Vincent’s University Hospital I worked on the cystic fibrosis ward. I thoroughly enjoyed my experience there. When I started my nursing career in St. Vincent’s University Hospital I requested to work on the CF ward.

From here I gained an interest in diabetes and its effects on people with CF, both physically and emotionally. In 2009 I was offered a position within the SVUH Diabetes Centre and completed my Higher Diploma in Diabetes while working here. During my time working in the Diabetes Centre, the complexity of Cystic Fibrosis related diabetes was noted. In 2015, I was appointed the first dedicated Cystic Fibrosis Related Diabetes Clinical Nurse Specialist (CFRD CNS) in Ireland.

How long have you been in your post?

Five years CFRD is a unique form of diabetes, different to type 1 and type 2 DM. How would you explain this difference and what does this mean for people living with CFRD in terms of health outcomes?

CFRD is a unique form of diabetes specific to people with Cystic Fibrosis. Type 1 Diabetes is an autoimmune condition where the immune system attacks the cells in the pancreas that make insulin. People with Type 1 Diabetes are dependent on insulin injections. Usually people are diagnosed with Type 1 Diabetes when they are younger.

People with Type 2 Diabetes may not make enough insulin and/or may have some insulin resistance, where the cells do not allow the insulin to work effectively. Often Type 2 Diabetes occurs in older people or adults who are overweight.

CFRD can share certain aspects of both Type 1 and Type 2 Diabetes. In CF, sticky mucus can cause scarring to the pancreas which creates a lack of insulin being produced or released. Insulin resistance can also occur during illness, steroid use or pregnancy in CF.

CFRD

CFRD can be complicated due to the high calorie, high protein and high fat diet that is required in order to maintain weight in CF. This is very different to the advice given to people with Type 1 and Type 2 diabetes, which can lead to confusion for some people.

22

Spectrum / Summer 2021

Some people with CF need to have high energy supplement drinks or overnight enteral feeds, which can further complicate insulin requirements. Individualised dietary advice should be provided by a dietitian with experience in CF and diabetes.

Untreated CFRD is known to have a negative impact on the body mass index and lung function. People with CFRD are also at risk of microvascular and macrovascular complications as well, however the occurrence of these appear to be less than in Type 1 or Type 2 diabetes. Due to this risk, it is recommended that all people with CFRD attend a specialised diabetes clinic regularly for review.

What has been the most challenging part of doing a unique nursing role, considering there is no one else in the country working as a CFRD nurse?

The most challenging part was to develop a service for people with CFRD which is entirely different to other forms of diabetes. I have had to adjust my skill set to the unpredictability of CFRD and think outside of the usual approach to treatment of diabetes. I am fortunate to have worked with incredible, inspirational nurses throughout my time in the SVUH diabetes centre. They have a wealth of knowledge that they were willing to share with me. I also have very supportive consultants, dietitians and medical doctors to help guide me. Without their help I feel the service would not have developed as it is today.

How has the COVID-19 pandemic impacted your patient cohort?

Unfortunately at the beginning of the Covid-19 pandemic the diabetes nurses were redeployed to assist the nurses on the wards. All of our clinics were moved to virtual clinics. The virtual clinics worked quite well for diabetes due to technology where patients could upload their data to a secure online platform. We also offered video calls, as well as phone calls. Through this it has allowed people with CFRD to stay connected with the diabetes team.

What is the most rewarding aspect of your nursing role?

The most rewarding part is definitely getting to know people with CFRD and their life experiences. It is a huge privilege to be in a position where I can help to improve their lives.

What advice would you give to someone who has recently been diagnosed with CFRD? I always feel it is good to acknowledge that it is normal to have times where you have negative emotions towards your diabetes. The most important thing to do when you feel like this is to speak to your healthcare worker.

Together you can work towards a suitable solution to help you.

What is the most common question your patients ask?

The most common question is usually related to the long-term use of insulin and if at some stage this can be stopped. In CFRD this question can be very difficult to answer as it is a very unique type of diabetes and dependent on the reasons for commencing insulin. Generally however, most CF people with diabetes would remain on insulin after starting it. It would be unusual to discontinue it.

How do new technologies help you in your role, for example virtual clinic technologies or remote monitoring?

The emerging technologies in diabetes have been a huge help in tailoring insulin regimens to the individual. A lot of the newer glucose monitors have apps that you can connect your meter to your phone. Some of these apps can alert the user to developing trends and allows you to email reports to your healthcare worker.

Siobhan recently spoke at the CFI Annual Conference on the topic of CF-Related Diabetes, alongside Dr. Eoin Noctor and Dietitian Lynda O'Shaughnessy. You can watch back the session on www.cfireland.ie www.cfireland.ie

23

The People of CFI ALL ABOARD

It

is fair to say we have all adapted to a new way of life over the past year, delving into the world of zoom meetings, swapping gym sessions for online classes and changing how we interact with friends and family.

CF Ireland understands that this has been an isolating and lonely time for many within our community and would like to reassure members that we are here for support. It can be tough to reach out, so to make it easier we thought we would reintroduce ourselves.

Cystic Fibrosis Ireland is run by a National Executive Committee made up of volunteers with a direct connection to cystic fibrosis. The board of CFI continue to meet virtually to discuss the direction of the organisation and issues facing the CF Community.

Keith McCabe, Chairperson Eastern Branch, joined board in 2017 Business Executive “I got involved with CFI originally because my son, Senan (age 7), has CF. I reached out a few years after he was born and it ultimately resulted in my joining the board.

There have been multiple highlights of my time with CFI. On a personal note, it has been the numerous fundraising initiatives that I have been involved in, most recently completing 65km run over 65 Roses Day. On a broader level, being a parents' voice through the “Orkambi campaign” and ultimately joining the board was memorable and a decision I have never regretted.”

Patricia Duffy Barber, Vice-chairperson Adult PWCF branch, joined CFI board approx. 2012 Speech and Language Therapist for HSE “I got involved with CFI as I have CF myself. I became involved with the Adult CF group in my late teens, it was a great way to meet other people my age who just 'got it'; who knew what it was like and had been in hospital and knew how I was feeling.

I have enjoyed seeing the association evolve from CFAI to CFI, during that time I've loved the social aspect of meeting people and been privileged to represent the members in meeting many Ministers for Health and An t-Uachtarán Michael D Higgins. The dedication and enthusiasm of branches fundraising annually has amazed me. I've been so encouraged to see the result of advocacy for better services, more staff and better treatment including the new drugs which have amazing potential for both us oldies in our 40s and our youngest members!”

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Spectrum / Summer 2021

John Coleman, Treasurer Eastern Branch, joined board in 2005 Tax Consultant “Firstly I am a parent of a young Adult with CF. As a Fellow of the Chartered Certified Association of Accountants, Registered Auditor and Associate of the Institute of Taxation, I feel that my financial experience and reputation would be of value to CFI. I believe in strong corporate governance and developing a forwardthinking Association, remembering the past struggles and achievements.

I believe each member's views should always be heard and that each board member should strive to make the Association the best it can be.”

Mary Mc Carroll, Secretary Eastern Branch, joined 1980’s Homemaker “I became involved with CFI as my daughter and son both have CF. My highlights include representing CFI at the European Conference in The Hague in the 1990s, where I first heard about neonatal screening and Eastern branch hosting our 50th Anniversary.

It was particularly monumental to see the first person with CF become CFI Chairperson too.”

Cyril Gillen Drogheda Branch, joined approx. 2005 Retired secondary school teacher “I have a son with CF. I joined to get help and support and to be a tiny part of getting the help and support to others. I have gotten more from the organisation than I ever contributed. I find the people involved to be inspirational.

I had the honour of being chairman of "the best little branch in the country" when we opened the Paddy Kieran's CF Clinic in Drogheda - a tribute to Paddy and so many others.”

Marion Barrett Southern Branch, joined CFI 20+ years ago Homemaker "I got involved with CFI as my daughter was born with CF and I wanted to get involved to improve facilities for all CF patients.

An absolute highlight has been the introduction and success of the new drug Kaftrio."

www.cfireland.ie

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Brendan Lonergan Adult PWCF branch, joined CFI board approx. 2007 Early Years Practitioner/Educator “I am a 39 year old PWCF, and my good friend Nathan Swan (a fellow PWCF, sadly no longer with us) many years ago talked me into joining him by getting involved in the organisation.

I have enjoyed seeing the amazing and positive changes that have occurred over the years due to the hard work of so many amazing and dedicated people: PWCF, members, volunteers, the incredible staff and my fellow Executive Board members.

I look forward to hopefully seeing even more positivity in the coming years.”

Catriona Hayes Tipperary Branch, joined 2005 Retired Army Officer “I’m the Mother of a young adult with CF. I joined CF Ireland to help make a change to the lives of PWCF in the mid-west region.

The highlights include being a founding member of TLC4CF and the opening of the new adult CF unit at UHL in 2016. The unit was the result of the tremendous hard work of all the people in Tipperary, Limerick and Clare.”

Tess Brady Cavan Branch Homemaker “I got involved years ago as a neighbour’s child had CF and I helped with fundraising. But since then the first of 2 grandchildren with CF were born 21 years and 13 years ago. I have seen many changes over the years in treatments and therapies.

The highlight has been meeting so many people, parents, staff at Head Office and attending conferences!”

Claire Merrigan Wexford Branch, joined 2019 Full-time carer / Camogie Manager and player “I have a son with CF and have always loved being involved in CF Ireland. They are so supportive and we love to try fundraise and help and support other families. I have also been very lucky in that I am an Ambassador for CF Ireland.

The Mini Marathon was our first ever event and since then we have skydived, organised Wedding Dress Balls, held White Collar Boxing Events and taken part in so many other wonderful events throughout the years. It's an absolute pleasure to be part of the Board of CF Ireland.”

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Iris Murphy Sligo Branch, joined 2010 Sports Injury Therapist & Farmer “Almost 22 years ago my daughter Shania was diagnosed with cystic fibrosis as a baby. It has been wonderful seeing my daughter grow up overcoming daily obstacles with her health and well-being.

Being involved with CFI has given me a front row seat to all the advances made in this country in relation to Cystic Fibrosis such as newborn screening and new drug therapies as they become available for people with CF.”

Billy O'Toole Mayo Branch, joined CFI in 2017 Sales Executive “I have CF and was transplanted in 2010. I want to give back and help in any way I can. Giving a patient's point of view can help make decisions. I really enjoy the team ethic in CFI and how nothing is ever too big of a problem.

Getting the recognition from President Michael D. Higgins was a proud moment.”

Kieran McCarthy Clare Branch, joined in 2016 Purchasing Manager “My daughter Aoibheann is a PWCF. My wife and I joined our local branch to help make sure her needs and the needs of all PWCF were fully understood and met both at a local and national level.

The past few years has seen so many advances in CF care, from a medical point and infrastructure being put in place. My highlights would be CF Ireland's involvement in the campaign to gain access to Orkambi and the opening of the adult CF unit in UHL.” Denise O'Brien Eastern Branch, joined 1990’s Special Needs Assistant “I am the mother of two children Céire and Séan who sadly passed away from CF. I wanted to help other people in similar situations and raise awareness and improve conditions and especially living standards for people with CF. It was such a highlight when the Kalydeco / Orkambi drugs became available and most recently the Kaftrio drug. Also climbing the Julien Alps in lovely Slovenia as part of the fundraising walk.” www.cfireland.ie

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Mary Lane Heneghan Galway Branch, joined approx. 2005 Retired Teacher “I have been involved with the world of CF since my son was born in the Royal Victoria Hospital Belfast in 1984. The family returned to Galway two years later and I became active in the Galway Branch since 1986. I'm the current chairperson.

I have met some amazing people in the world of CF. PWCF and their families and dedicated teams in hospitals. I was honoured to be National Chairperson in 2008/9.

I have seen great positive changes from finding the missing gene in 1989 to the opening of dedicated CF Units across the country including the Transplant Unit in the Mater; improvement in care and treatment and the welcome recent CFTR modulator therapies.”

Marie Duffy Dublin West Branch, joined 2019 Business Owner “My daughter Grace was diagnosed with Cystic Fibrosis in 2011 at only 2 weeks of age. Shortly after her diagnosis I attended the CFI conference and was inspired by all the families that fundraised and devoted their time and energy into helping families with Cystic Fibrosis and I knew that I wanted to be part of that community. I also set up the Dublin West Branch with a couple of other CF Mums and it's been growing from strength to strength.

Highlights include being part of a wonderful team on the CF board - meeting like-minded parents who know exactly what we go through and having that support. The Dublin West branch has raised a lot of money through its annual balls, local running challenges, etc. which is very rewarding and it's been a lot of fun along the way. I was involved with setting up the private group and am one of the admins to "CF Mammies" on Facebook - where only Mammies living in Ireland can join this group - this has been an amazing (non-judgemental) support to all our members and I know all the Mammies find it a wealth of knowledge.”

The National Executive Committee of Cystic Fibrosis Ireland is made up of 16 representatives from CFI branches nationwide.

The board meet several times throughout the year, and during COVID-19 have been meeting regularly via Zoom.

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

June 6th: One in 1,000 / Virtual Women’s Mini Marathon One person can make a difference! You can be that one person for Cystic Fibrosis Ireland by signing up to our One in 1,000 campaign to recruit 1,000 women to take part in our Virtual Women’s Mini Marathon which will take place on Sunday 6th June. We are encouraging people to participate by completing a 10k walk or run, virtually in a venue of your choice anywhere across the world, in aid of Cystic Fibrosis Ireland.

You can complete the 10k as a run or walk and take part any time you like! Just be sure to take plenty of pictures and share them and your route on your social channels with #Onein1000 so that we can celebrate your wonderful achievement with you!

Sign up to our One in 1,000 campaign for our Virtual Women’s Mini Marathon and get your exclusive One in 1,000 shirt and medal when you finish at cfireland.ie. Once you’ve clicked ‘Submit’, your digital fundraising page on iDonate.ie will be automatically set up for you – don’t forget to share it on your social channels and with your friends and family! www.cfireland.ie

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September 5th: Head2Head Walk Thanks to the amazing support from walkers across Ireland and Overseas our Virtual Head2Head walk in 2020 raised over €30,000 for Cystic Fibrosis Ireland! We are delighted to confirm we are returning to our actual Head2Head walk this year and encourage everyone that can to join us on Sunday 5th September and help raise vital funds for Cystic Fibrosis Ireland.

The walk will begin at Howth Dart station at 9.00am and finish in Bray. Walkers have the option of completing the full walk from Howth Head to Bray Head or completing half the walk, either the first half from Howth Head to Sandymount Strand or Sandymount Strand to Bray Head.

With your walk registration you will receive your registration pack including your stylish Head2Head Walk Shirt and everyone who completes the walk will receive an exclusive Head2Head Walk medal.

Register now to secure your place and avail of our early bird registration fee of just €15, available until July 31st at cfireland.ie

September 10th to 16th: Paris2Nice Cycle This 700km charity cycle always proves to be an enjoyable and rewarding challenge! This is a wonderful way to make new friends, get fit and have a holiday of a lifetime all the while raising much needed funds for Cystic Fibrosis Ireland.

The cycle will pass through amazing scenery as it makes its way from Paris along the quiet country roads towards Nice. The 2021 event is now fully booked!

For further information or to register your interest for the Paris2Nice Cycle 2022 log on to cfireland.ie or contact fundraising@cfireland.ie

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September 16th to 19th: Malin2Mizen Cycle4CF Our annual Malin2Mizen Cycle4CF will take place on Thursday 16th to Sunday 19th of September 2021. We would like to thank everyone who has signed up and fundraised so far!

Malin2Mizen Cycle4CF will begin at Malin Head in Co. Donegal on Thursday 16th September and will finish in Mizen Head in Co. Cork on Sunday 19th, September. The event requires plenty of training as we will be covering an incredible 640km in four days!

Registration for our 2021 event has now closed, but if you are looking for a rewarding fitness challenge and are a keen cyclist then this is the event for you! You can register your interest for our 2022 cycle which will take place from Thursday 5th to Sunday 8th May by contacting us on 01 496 2433 or emailing fundraising@cfireland.ie.

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

October 3rd: Virgin Money London Marathon The London Marathon is known as the "Marathon of a lifetime" and is a hugely popular event! Those who have run the Marathon in the past describe it as a life changing experience.

October 24th: KBC Dublin City Marathon The Dublin City Marathon returns this year on Sunday, October 24th. Our runners will hit the streets once again to help raise funds to improve the lives of people living with CF in Ireland.

The Virgin Money London Marathon takes participants past many of the amazing landmarks in London including crossing Tower Bridge, passing the London Eye and Big Ben, and finishing in front of Buckingham Palace.

Places for the marathon are now all sold out. For those of you who were lucky enough to secure a place, now that you have signed up and started your training, why not consider fundraising for a charity as part of your marathon challenge? We would be delighted if you could fundraise for Cystic Fibrosis Ireland and join the CFI Team taking part!

There are a limited number of places still available for the Virgin London Marathon 2021!

The London Marathon is one of the world’s greatest participatory events, so we would encourage you to register your interest at cfireland.ie as soon as possible for a place in the London Marathon 2021! www.cfireland.ie

Register now at cfireland.ie and we will send you out a Cystic Fibrosis Ireland shirt so that you can join the CFI Team for the KBC Dublin City Marathon 2021.

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November 7th: TCS New York City Marathon Complete one of the world’s most exciting marathons and raise much-needed funds for Cystic Fibrosis Ireland! The TCS New York City Marathon takes place on Sunday 7th November, and takes you past towering buildings, bustling streets and world-famous iconic landmarks in the city that never sleeps!

If you are considering taking part in the TCS New York City Marathon, please register your interest at cfireland.ie to secure a much sought after ‘Guaranteed Entry Place’ for the event.

December 10th: Christmas Jumper Day 4 CF It is never too early to start thinking of Christmas! Why not put Christmas Jumper 4 CF in the diary now!

To take part, just get your friends, family or work colleagues involved, wear your Christmas Jumper on the day and donate to Cystic Fibrosis Ireland. The funds raised help to ensure we can continue to provide research, advocacy, and support to all those living with Cystic Fibrosis in Ireland.

Register your interest now at cfireland.ie!

All Year: 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 2021. Taking part in of one of Cystic Fibrosis Ireland's International Challenges could be the adventure of a lifetime, and the perfect fundraising opportunity for adventurous spirits!

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

Postponed to 2022: Paddy Kierans’ Memorial Walk CFI in conjunction with the Paddy Kierans’ Memorial Walk Committee regret to inform participants in our International Walk scheduled for September in Bulgaria that we have had to postpone the walk until 2022. The decision was taken considering the safety of everyone involved as the first priority. The Walk Committee have already started to look at plans for the Walk in 2022 and the possibility of a four day walk in Ireland in September this year.

For more information on the CFI International Walk, please register your interest on www.cfireland.ie.

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

Here is a short summary of some of the remarkable efforts of our volunteers: 65 Roses Day Cystic Fibrosis Ireland would like to say a huge THANK YOU to everyone who donated, fundraised and helped raise awareness for 65 Roses Day which took place on Friday 9th April. Please see centre pages of this edition for a selection of photos from the day.

Despite CFI being unable to hold our annual collections for the second year in a row due to COVID-19 restrictions and having to move our campaign online again this year, the support by way of online donations and 65 Roses Challenges set up to raise funds was amazing. To date we have raised an incredible total of €430,912 which will allow us to continue to fund services and support for people with Cystic Fibrosis in Ireland during 2021 as our fundraising events remain online due to the pandemic.

Thank you so much once again from everyone at Cystic Fibrosis Ireland to everyone who contributed in any way to making 65 Roses Day 2021 such a special day once again for the CF community in Ireland!

www.cfireland.ie

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Annual Conference – Raffle Congratulations to the prize winners in our Annual Raffle which took place at our Virtual Conference on April 6th: 1st Prize: 2 nights B&B for 2 at The Maldron Hotel, Oranmore, Galway Winner: Alan Shanley, Ballycullen 2nd Prize: 32GB LTE Lenovo Tablet Winner: Carol Devereux, Enfield 3rd Prize: 32GB LTE Lenovo Tablet Winner: Sinead Cannon, Tuam 4th Prize: Apple Watch SE with White Sports Band Winner: Jim & Rosemarie Fay, Mornington 5th Prize: Nespresso Vertuo Next Coffee Machine Winner: Maeve O’Dowd, Stepaside 6th Prize: €100 Sunway Voucher Winner: Mary Noone, Athenry 7th Prize: Pamper Hamper - JVC Headphones, Yankee Candle & More Winner: Julie O’Donnell, Birdhill 8th Prize: Luxury Adult Crafts & Painting Hamper Winner: Kathleen Connolly McCarthy, Ardagh Thank you once again to each of our sponsors: The Maldron Hotel – Oranmore, Evad IT Solutions, Adlantic.ie, Sunway Holidays, Jane Hogan from M&M Qualtech Ltd, and Terenure Office Supplies for all of the amazing raffle prizes!

A special thank you to everyone who bought tickets with our first virtual Annual Raffle raising an amazing €7,689!

Annual Conference – Fundraising Awards A huge congratulations to Bernie Murphy, Vinnie O’Malley and Tony Griffith (pictured above left to right) from the International Walk Committee who were presented virtually with Cystic Fibrosis Ireland Fundraising Awards at the Annual Conference on April 6th. They ensure our International Walk is such a huge success and are already working on plans for the walk in Bulgaria next year.

Also honoured on the night was Tom Cavanagh (pictured above right) who has been a great supporter of Cystic Fibrosis Ireland over many years and sponsored five walkers for our last International Walk in 2019.

Congratulations to all on your awards which are so well deserved. Further details of the International Walk are available on our website at cfireland.ie or you can email fundraising@cfireland.ie

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Head2Head Walk Cystic Fibrosis Ireland would like to say a massive thank you Lorraine & Jem (pictured right with their family including new grandchild Isla May), Mary, Glen and all of the Head2Head Walk committee for organising a fantastic Head2Head Virtual Walk in 2020 which raised an incredible €30,784.82!

We would especially like thank all the walkers for your amazing fundraising and making the event such a huge success.

Why not join us for this year’s Head2Head Walk on Sunday 5th September and help raise vital funds for CFI? Early bird registration is only €15 and available until the end of July. Register now to receive your Head2Head Walk shirt and fundraising pack at www.cfireland.ie The Community Foundation For Ireland – RTÉ Comic Relief Cystic Fibrosis Ireland are delighted to be one of the beneficiaries of The RTÉ Comic Relief fund administered by The Community Foundation for Ireland.

This grant will allow us to continue to support people with Cystic Fibrosis across Ireland during the ongoing COVID-19 pandemic. Thank you to everyone involved for your fantastic support!

Loreto College, Swords A huge thank you to the pupils and staff in Loreto College Swords who raised an amazing €1,250 from Christmas Jumper Day 4 CF and presented a cheque to our Fundraising Manager, Fergal Smyth.

The students who organised the fundraiser came up with a great fundraising idea of selling purple masks to everyone in the school and so for Christmas Jumper Day 4 CF all pupils and staff wore their purple masks in support of Cystic Fibrosis Ireland.

Thank you all so much for this wonderful fundraiser which will help CFI continue to support people with Cystic Fibrosis during the COVID-19 pandemic. www.cfireland.ie

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Our Lady’s Hospital, Navan

Virginia College, Cavan

A huge thank you to Maria, Michael and all the staff at Our Lady's Hospital, Navan who raised an amazing €1,141.22 from Christmas Jumper Day 4 CF and presented a cheque to our Fundraising Manager, Fergal Smyth.

CFI would like to thank the student council and two transition year students in Virginia College, Cavan, who ran an amazing fundraiser for Christmas Jumper Day 4 CF 2020.

They raised a massive €1,019.70.

Pictured above are (left to right) Jamie Farrelly, Caitlin Hayes, Jamie Brady, Mary Daly Hayes, Charlotte Cave and Sean Lynch at the cheque presentation.

Zoe Woodard – One in 1,000 A special word of thanks to Zoe Woodard, her daughters Emily and Lana, her mother Gillian and sister Natasha who all helped make our Virtual Women’s Mini Marathon such a huge success in 2020.

The One in 1,000 campaign raised an amazing €71,398.50 as per the cheque presented by Emily and Lana. A huge thank you also to everyone who registered and fundraised to make this possible.

Zoe and her family were instrumental in setting up the One in 1,000 campaign ten years ago, to recruit 1,000 women to participate in the Women’s Mini Marathon and fundraise for Cystic Fibrosis Ireland each year.

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St. David’s Holy Faith Secondary School, Greystones THANK YOU to Mary, Carolyn and all the pupils and staff at St. David's Holy Faith Secondary School, Greystones, who raised an unbelievable €3,000 from Christmas Jumper Day. They split the money between Cystic Fibrosis Ireland and Down Syndrome Ireland.

Pictured above is Mary O'Doherty presenting a cheque for €1,500 to Cystic Fibrosis Ireland Fundraising Manager, Fergal Smyth.

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Christmas Jumper Day 4 CF We extend a huge thank you to everyone who signed up and participated in Christmas Jumper Day 4 CF 2020.

Thank you for making our third Christmas Jumper Day 4 CF such a huge success, raising an amazing €55,000.

We look forward to seeing all your Christmas Jumpers again this Christmas!

Duleek Virtual 10k The Duleek 10k took place as a virtual event for the 2nd year in a row due to COVID-19 with incredible numbers. Over 800 people registered to take part in the event on Sunday 25th April. The event remembers and celebrates the lives of cousins Cathy O'Brien and Kelley Noone sadly lost to CF and all friends and families touched by Cystic Fibrosis.

Thank you once again to everyone who supported the Duleek 10k and to Ann Noone and the organising committee who look forward to seeing you in person in Duleek in 2022!

www.cfireland.ie

Luke Scanlon Cystic Fibrosis Ireland would like to say a massive thank you to Luke Scanlon, who is just 17 years old and ran 100km over his Christmas break in support of people with CF!

Josh Webster, Global Payments

Luke raised an incredible €4,028 and did his fundraiser in support of his young cousin Sean, who was diagnosed with CF at 3 weeks old.

Josh completed 301 runs - totalling 249 hours 49 minutes of running, and an average weekly distance of 66km!!

Amazing work Luke, and thank you for your support!

Thank you so much Josh, great work!

Congratulations to Josh Webster, from Global Payments for his incredible fundraising throughout 2020, which raised an amazing €6,191!

McCrystals Pharmacy Cystic Fibrosis Ireland would like to say a huge thank you to the staff at McCrystals Pharmacy, Virginia, Cavan and Mary Daly Hayes who ran an Easter Hamper fundraiser for Cystic Fibrosis Ireland and raised €500.

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CFI Fundraising Calendar of Events Year to Go! June Sunday 6th

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

September Sunday 5th

Head2Head Walk

Friday 10th to Thursday 16th

Paris2Nice Cycle

Thursday 16th to Sunday 19th Malin2Mizen Cycle4CF October Sunday 3rd

Virgin Money London Marathon

Sunday 24th

KBC Dublin Marathon

November Sunday 7th

TCS New York City Marathon

December Friday 10th

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, Ireland

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t: +353 1 496 2433

f: +353 1 496 2201

e: info@cfireland.ie

w: www.cfireland.ie

Company Reg: 449954

Charity No: CHY6350

CRA Number: 20011376

Spectrum / Summer 2021