Spectrum - Autumn 2022

SPECTRUM

CEO’s Message

for Kaftrio| 3-7

* Campaign FAQs

* A reflection on the Campaign for KaftrioSharon Deignan, CF/Respiratory Clinical Nurse Manager

Member Services | 8-15

* The Energy Crisis: A Winter of Discontent

* Budget 2023 - Key Measures

* MyMind Free Counselling

| 16-21

* Keeping The Wheels Turning: Lucy O'Hanlon

* Edel Bible: My first year of parenthood

Protest in Pictures| 22-23

Kid Heroes | 25

CFRI | 26-27

Research News| 28 - 35

* Oral Health and CF

* Pathways to Improving Transition to Adult Services and Enhancing Self Management in Adolescents with CF

* ECFS - Clinical Trial Network

Hub

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Supporting the Kaftrio 35

Many thanks to everyone who took part in the protest to support the ‘Kaftrio 35’ that took place on Wednesday 14th of September as TD’s and Senators reconvened after the summer recess. Around 600 took part and the protest concluded with 35 purple roses being presented to the Head Usher from the Office of the Ceann Comhairle.

CFI looks forward to raising the issues set out on our detailed submission to politicians that we launched on the day of the protest, but also to contribute to finding solutions when we meet with the Minister for Health.

FAQ’s on this dispute are included in this issue of Spectrum. In the absence of a rapid resolution, CFI proposes the appointment of an independent arbitrator to resolve this dispute.

CFI welcomes the priority being given to the Human Tissue Bill in the Autumn legislative Programme, including provisions for Soft Opt Out organ donation consent. CFI further welcomes the committments to support IVF in the 2022 budget but is concerned that a full state supported scheme may still be years away.

Also in this issue of Spectrum we take a look at the Budget 2023, what it means for you and how to be energy efficient this winter. We hear from our member Edel Bible on her first year of parenthood, and take a look at a research study focusing on teenagers with CF and their transition to adult services.

Philip Watt, Chief Executive

Philip Watt,

LATEST NEWS

Modifying our System of Organ Donation

Will Save Lives

Cystic Fibrosis Ireland (CFI) warmly welcomes the inclusion of Soft Opt Out Organ Donation in the Government’s Autumn legislative programme as part of the Human Tissue Bill.

The present system of organ donation in Ireland requires potential donors to opt in. The new proposed system ‘Soft Opt Out’ will presume everyone wants to donate their solid organs in the event of their death, in line with most other EU countries. Up to 7 lives can be saved by 1 donor (1 heart, 2 lungs, 2 kidneys, 1 pancreas and 1 liver). The next of kin will still have final say and people will be able to opt out from organ donation through an online register. We will of course have to await the final text of the legislation which will be included the Human Tissue Bill, to be published soon.

There are many reasons for supporting Soft Opt Out Organ Donation. These include:

1. It will save more lives:

The number of people awaiting organ transplant in Ireland is far more than the operations carried out. If more organs become available, more life-saving transplants can be undertaken, including for those with Cystic Fibrosis and other lung diseases such as Alpha 1; Lung Fibrosis and COPD. A systematic review carried out in 2019, comparing the consent rates of opt-out organ donation countries versus opt-in countries, showed that the opt-out consent increased the deceased donation rate by 21–76% over 5–14 years, and deceased transplantation rate was increased by 38–83% over 11–13 years.

2. It will help bridge the gap between intention and the actual gift of organ donation: The introduction of a ‘soft’ opt-out organ donor consent system in Ireland will bridge the gap between people’s intentions and their behaviour. A survey undertaken in 2016 has shown 85% of people in Ireland

are willing to donate organs but only just over one third of us carry an organ donor card and many of us do not inform our next of kin of our intentions to donate or otherwise. This results in fewer organs than possible being donated.

3. It will help improve organ donor rates in Ireland: The countries with the best rates of organ donation in Europe have some form of soft opt-out system combined with sufficient infrastructure. Ireland was only in 18th place out of 28 EU countries for transplants in 2020 (slipping from 14th place in 2019).

4. It will modernise our organ donor system: Organ donor cards and similar ad hoc initiatives such as phone apps or use of a code on the driver license are very worthy and useful initiatives. But how many of us have lost and not replaced our donor cards for example? How many of us have not informed our next of kin of our organ donation intentions? The introduction of an online register for opting out of organ donation will bring Ireland into the modern age.

5. Organ donation will continue to be a ‘gift of life’.

The new system will continue to embrace the concept of organ donation being a ‘gift of life’. The only difference is that potentially more organs will be donated and as a result more families will benefit from the gift of life. Next of kin will continue to be consulted so no family will be forced to donate the organs of a loved one.

6. Ireland needs sufficient resources to make soft opt-out succeed.

We will always need more resources for our health system than those that are available. However, additional resources are needed to ensure that soft opt out is fully implemented.

CFI will keep you updated on the progress of the Human Tissue Bill.

Sources:

A Systematic Review of Opt-out Versus Opt-in Consent on Deceased Organ Donation and Transplantation (2006–2016)August 2019World Journal of Surgery 43(Suppl 5)

ODTI Research undertaken in 2016 and published with the ODTI 2015 Annual Report

CFI analysis of Council of Europe data https://www.cfireland.ie/about-cf/latest-news/irish-donor-network-expresses-concern-at-significantdecline-in-transplantation-and-organ-donation-rates

CFI welcomes support for IVF

CFI has taken a leading role to advocate for state supports for IVF. It costs more than €6000 per round of IVF and it often takes multiple rounds before there is a successful pregnancy. PGD is also dependent on IVF. In the September 2022 budget €10 million is being provided for IVF services for the final 4 months of September 2023 with funding set to increase by in 2024. Ireland is the only country in the EU that does not provide state funded IVF. IVF will continue to be provided privately with the Minister stating it ‘is going to take several years to build up the full public system’. There will be consultation with key stakeholders including patient groups on the detail. CFI will of course seek to engage in this consultation.

The Kaftrio Dispute

Frequently asked Questions (FAQ’s)

1. What is cystic fibrosis?

Cystic fibrosis (CF) is a progressive, genetic, long-term disease that affects the lungs, digestive system, including the solid organs of the pancreas and liver and other organs. In people with CF, mutations in the CFTR gene cause its protein to become dysfunctional leading to mucus in various organs to become thick and sticky. In the lungs, this sticky mucus clogs the airways and traps germs like bacteria, leading to infections, inflammation, respiratory failure and other complications.

2. How many people are affected by cystic fibrosis in Ireland?

Ireland has the highest rate of CF per capita in the world, with approximately 1,400 children and adults in Ireland living with the condition.

3. What is Kaftrio®?

Kaftrio® is the newest of four CFTR modulator therapies. It is a triple therapy combining the drugs Elexacaftorwith Tezacaftor and Ivacaftor. These modulator therapies are designed to correct the malfunctioning protein made by the CFTR gene. Because different mutations cause different defects in the proteins, these medications are effective only in people with relevant mutations. These modulator therapies work to make mucus in the lungs and other organs less thick, thereby helping to relieve symptoms of the disease.

4. What have studies shown about how Kaftrio® helps people with cystic fibrosis?

In one of the original clinical trials for Kaftrio®, 403 people with CF age 12 and over, who had one copy of the F508del CFTR mutation and another defined mutation, participated in a 24-week study. Approximately half the group took Kaftrio® and the other half took a placebo. In the group which took Kaftrio®, their lung function improved significantly. They experienced fewer pulmonary exacerbations, including 71% fewer pulmonary exacerbations that led to hospitalisations, and 78% fewer pulmonary exacerbations that led to intravenous antibiotics. They had a significant improvement in their CF respiratory symptoms. The symptoms measured included: waking up from coughing, congestion, wheezing, cough, mucus production and difficulty breathing. They also had a significant increase in their body mass index (BMI) compared to those taking placebo.

5. What has the EMA decided in relation to Kaftrio®?

The EMA has found Kaftrio® to be an effective treatment for patients with CF who have at least one F508del mutation in the CFTR gene. These patients have a high unmet medical need. In terms of safety, Kaftrio was well tolerated. Therefore, the EMA has decided that Kaftrio’s benefits are greater than its potential risks and so it can be authorised for use in the European Union.

6. Who has it licensed Kaftrio® for?

The EMA has licensed Kaftrio® for use in people with cystic fibrosis age 6 years and above who have at least one copy of the F508del mutation in their CFTR gene.

7. If Kaftrio® has been approved for 6-11-years-olds, why are some children getting it In Ireland and others not?

Kaftrio® has been licensed in Europe for use in people with cystic fibrosis age 6 years and above who have at least one copy of the F508del mutation in their CFTR gene. A 10-year portfolio agreement was signed by the HSE and Vertex in 2017 to bring access to a suite of Vertex-developed CF treatments. In Ireland, Kaftrio® is currently only reimbursed for people with CF who are:

• age 12 and older and have at least one copy of the F508del mutation

• age 6 and older and have two copies of the F508del mutation

• age 6 and over and have one copy of the F508del mutation and a second listed mutation. This list excludes a subset of patients who have one copy of the F508del mutation and a genotype with an unclassified or minimal function

8. The National Centre for Pharmacoeconomics (NCPE) says that the 35 children age 6-11 were approved in the initial deal with the HSE and that the pharmaceutical company has already been paid?

The HSE and Vertex would seem to disagree on this point. Cystic Fibrosis Ireland has not seen the details of the original agreement, and so has no information on this.

9. The pharmaceutical company disagrees that it has already been paid and has said it is now happy to offer the drug for the same price for which the other children receive it –what is CFI’s view?

This this not really a question Cystic Fibrosis Ireland can answer as we do not know the details of the original deal and whether an overall price was agreed for the therapies for the entire CF community, irrespective of the number of patients accessing same, or if it was on the basis of an agreed cost per person and/or a specific genotype. CFI calls on Vertex to make Kaftrio® as affordable as possible. Cystic Fibrosis Ireland strongly believes that anyone who stands to benefit from the life-changing drug Kaftrio® should have access. The HSE and Vertex have a moral duty to get around the table and hammer out their differences, and not delay a resolution of this matter any further.

10. Where do you think fault most lies?

The responsibility for making sure that all children who could benefit from Kaftrio® and have access to the treatment lies with both the HSE and Vertex and we implore both of them to redouble their efforts to find a solution as soon as possible. The HSE’s vision is “a healthier Ireland, with the right care, at the right time and in the right place”. Vertex Pharmaceuticals declares among its values that “patients are at the centre of all that we do… every decision we make is driven by the patients we serve”. Both organisations need to reflect on these commitments.

11. Would you call on the HSE and the pharmaceutical company to publish the deal so we can all see it?

Confidential pricing agreements can provide the opportunity for better deals to be agreed between the State and industry. Equally, as is apparent here, they can hamper transparency in ensuring equality of access to essential medicines such as Kaftrio. Cystic Fibrosis Ireland believes that independent arbitration, conducted quickly and efficiently, presents a way forward in a situation of continuing disagreement among the parties over the content of the deal.

12. What do you say to the NCPE argument that “the price doesn’t match the benefit at this point in time” and that “we’re overpaying for these drugs”?

The HSE has previously accepted the benefits of Kaftrio® and agreed a price with the company for the 690 people with CF who are already receiving it – people who can testify to its value in the real world. The benefits have been clearly demonstrated in clinical trials showing improvement in lung function, reduced exacerbations, reduced hospitalisation, reduced need for intravenous antibiotics, etc. There are 11 other European countries that provide Kaftrio® to all 6-11 year olds included in the EMA recommendation, presumably these deals are not greatly dissimilar to Ireland’s pipeline deal of 2017?

13. You say that there will be a gain for the HSE in other areas of care – what are these?

In one of the original clinical trials for Kaftrio®, in the group which took Kaftrio®, lung function improved significantly. They experienced fewer pulmonary exacerbations, including 71% fewer pulmonary exacerbations that led to hospitalisations, and 78% fewer pulmonary exacerbations that led to intravenous antibiotics. These clearly demonstrate savings to a health service.

14. Do we know how much this is costing the health of these excluded children while they wait provision of the therapy, or until they reach 12 years of age where they would be offered treatment?

Every person with cystic fibrosis is different and will have a different response to the condition. We can say that in a progressive condition like cystic fibrosis, delayed treatment will mean the disease will continue to diminish the body’s organs. While we cannot be specific about the pace or extent of this deterioration, or whether it can be reversed, it is clear that it is morally wrong to withhold treatment from patients when we know that they could benefit from it. Healthcare delayed is healthcare denied.

15. Would referring Kaftrio® to the NCPE for a Health Technology Assessment be a good idea?

No. In May 2022, after a rapid review, the NCPE recommended that a full Health Technology Assessment (HTA) be carried out to assess the clinical effectiveness and cost-effectiveness of Kaftrio®. This seems bizarre in the extreme, given that the therapy is already being provided to significant numbers of people with Cystic Fibrosis in Ireland. We would be very concerned that parents would perceive this as a negotiating ploy or a delaying tactic, that can take up to 90 days to complete, but in which a “stop-clock” process applies where further information can be sought, meaning further delay. Given the NCPE’s position on Kaftrio®, in which it has already stated its concerns about its cost-effectiveness, we are only going to end up right back where we are now with a recommendation from the NCPE that it be approved but not at the price on the table. Back to square one, but months of delay later.

16. There is a private members’ Bill before the Dáil at the moment to change how orphan/ rare disease drugs are assessed and reimbursed – how would this work, would this make the assessment of such drugs fairer?

Yes. The Health (Pricing and Supply of Medical Goods) (Amendment) Bill 2021, aims to establish more meaningful criteria in deciding on reimbursement for orphan/rare disease medicinal products. This Bill is at present supported by Government.

Under the existing legislation, there is no differentiation between orphan/rare disease medicinal products and other more broadly applicable products in Ireland. All new medicines must undergo the same HTA. Right now, the HTA assesses cost-effectiveness using a willingness-to-pay threshold of up to €45,000 per quality-adjusted life year gained. This means that a medicine is considered cost-effective if it costs up to €45,000 or less to achieve one additional year of a perfect quality of life.

We know that the market opportunities for drug companies to make profits from orphan/rare disease drugs are lower given smaller population sizes for rare diseases. This can lead to higher pricing of orphan drugs. These higher prices, limited data from clinical trials, and often lack of a comparator drug, push orphan drugs out of the threshold of €45,000 per quality-adjusted life year gained and so these medicines continually struggle to secure reimbursement. The odds are stacked against them. In short, drug therapies for rare/orphan diseases in Ireland are not treated fairly at present.

17. Are drug pipeline deals a good Idea?

Yes. The innovative pipeline deal agreed between the HSE and Vertex meant that access to new therapies, or extensions to current therapies, would be provided once they were approved by the EMA. To date this innovative approach negotiated by the HSE has avoided disputes such as this one. Similar pipeline deals have provided access to Kaftrio® in the UK and Denmark (for example). Ireland though, was the first country in the world to develop a pipeline approach for any suite of drug therapies and this has been lauded and adapted by other countries. The NCPE has recently stated that it is not in favour of pipeline deals. This is very disappointing and an outmoded position, in our view, and is at odds with the HSE/Vertex agreement of 2017.

18. What do you say to people who say this is taxpayers’ money that is going to line the pockets of pharma companies, that could be better spent on other cheaper medicines for greater numbers of people?

It is not equitable to deny access to a lifesaving drug based on the rarity of a person’s condition. If you compare someone with a severe, but common condition, and someone with a severe, but rare, condition, our current system disadvantages those with rare conditions. The research and development costs of a drug are shared among more people in the common group, resulting in a lower cost per drug than in the rare group, where research and development costs are shared among a smaller patient pool. While the costs may be higher for an orphan drug, the medical needs of both patients, and potential lifesaving benefits of the drug are the same. Cystic Fibrosis Ireland does not believe it is fair or equitable to provide access to medicines to one person with one severe, more common, disease but not to another equally severe, but less common, disease.

Cystic Fibrosis Ireland fully supports the HSE in seeking value for money and a fair and accurate price for drugs. The current system, however, is not fit for purpose when it comes to rare disease drugs.

19. What does Cystic Fibrosis Ireland want to happen now?

Cystic Fibrosis Ireland has always campaigned on the principle “no child with CF left behind”, that all those who stand to benefit from therapies such as Kaftrio® should gain access. The responsibility for making sure that all children will benefit lies with both the HSE and Vertex and we implore both of them to redouble their efforts to find a solution as soon as possible. If the parties cannot agree, then a swift independent arbitration process should be undertaken to review the deal previously agreed to determine whether the deal already covers the “Kaftrio 35”. If it does, then the company should honour that. If it doesn’t, then both parties need to agree a new deal without further rancour or delay.

A reflection by Sharon Deignan, CF/ Respiratory Clinical Nurse Manager Childrens University Hospital Temple Street

A nurse stopped me on the corridor a few weeks ago and said “Do you ever think about Katie*?” I replied “I think about her all the time”. Her eyes filled with tears, as did mine. “Do you remember everything about her?”

We actually held hands and spent a few moments laughing and smiling and crying remembering our beautiful patient Katie, who had Cystic Fibrosis. This beautiful, wonderful girl was born before newborn screening, before the advent of CF specialist centres and before modulator therapies. Despite this, she like many patients with CF had a strength of character, personality, courage and resilience, which allowed her to live a life full of promise and determination. I loved her humour, her wittiness, her smile, her ability to lift and lower your heart all in the same moment.

It was 2007. I just started my job as a nurse specialist in the CF unit in Temple Street Children’s hospital. Katie rocked out of the lift on floor 2 and took one look at me and said “Where’s Mary?” Katie knew fine well that if she was looking at my face, Mary was on a day off, as we job shared! I may have completed an interview to get the job, but the real interview began that day! Katie did not suffer fools and could analyse your abilities quickly. Honesty was your best friend and then slowly but surely when trust was established, she would open her heart and allow you in. This approach she perfected during hospitalizations. This approach of earning her trust was unanimous with all members of the CF team, and indeed all staff within the hospital. I remember Claire our physiotherapist, discovered that Katie loved a good foot massage. So that’s exactly where she started. The day could go very well if Claire started with her feet and slowly but surely made her way up to her lungs to complete chest physiotherapy.

Medical and nursing students went through the same vigorous process. Katie was very quick to point them in the right direction (which was out the door!) if she wasn’t in form for questions or interruptions. Mostly, she loved the medical and nursing students, as they passed the time for her. She had an inquisitive and curious mind and was always interested in what part of the world they travelled from, particularly the students from Royal College of Surgeons. By the end of their learning placements she had them sponsoring her school raffles, readathons and clearing out all the trick or treat badges for Temple Street. Sadly, Katie lost her battle with CF at the tender age of the 16. Always loved and never forgotten.

So much has happened in the last decade. Newborn screening in 2011 has allowed the early identification of CF, and thereby facilitates early access to specialist CF care. Knowledge and education regarding the early treatment of infection, control of infection and spread of infection, have all been huge contributors to the improved outcomes for patients with CF. And of course, modulator therapies have been transformative, which brings me to the current quagmire of right vs wrong.

It is simply wrong to deny these 35 children access to a medication that we know to be highly effective. I also think about the babies, toddlers and pre-schoolers who attend our service and are also in this “HET/MIN” group, so the number is actually 35+. In this era of health economics and value related healthcare, is it not already known that prevention is better than cure? These children deserve the best chance of living a full life with CF. They deserve the opportunity to plan for a future which is full of fun, activity and promise. These children cannot and should not be left behind.

Yours, Sharon Deignan

*name has been changed

MEMBER SERVICES

A Winter of Discontent

Wrap up well its going be a very long winter.

Most household electricity and home energy costs have practically doubled since the start of the year. We also have other hyper-inflated costs, such as the weekly grocery bill, creating a perfect storm resulting in the cost of living crisis for many this year.

Anyone living with CF knows too well that CF places an extra demand on energy usage in their home; keeping extra warm when feeling unwell, doing daily CF treatments administered by nebulisers running in total for up to 1- 2 hours per day. Those with advanced CF may be dependent on additional energy-consuming machines such as home oxygen concentrators, overnight bi-pap and overnight PEG feeds. We also have high frequency snacks prescribed as part of our diet regime. All these factors combined means energy usage in the CF home is higher than in the average home.

What can you do to help manage your energy costs and reduce energy usage?

Firstly, make sure you register as a priority/vulnerable user of electricity. If you depend on medical equipment at home, such as home dialysis or oxygen machines, make sure to notify your electricity provider that you are a vulnerable user and they will instruct ESB networks to include you on the medical register.

As a registered vulnerable user, you will be notified of any planned electricity disruption at least 3 days in advance. You will also be able to call the National Customer Contact Centre at 1800 372 999 or 021 2382410 in the event of any unplanned electricity disruption and they will prioritise restoring your electricity supply.

Assistance with exceptionally high home energy bills

Additional Needs Payment (ANP)

The Additional Needs payment is available for anyone on low incomes to help with extraordinary exceptional household costs, including increased energy bills. Although you don’t need to be in receipt of a qualifying social support payment for this payment, your means will be tested to determine eligibility. There is no set payment as all applications and payments are assessed individually. To apply for this payment, you should contact your local community welfare officer.

Find out more on the Citizens Information website: www.citizensinformation.ie

Heating Supplement

You may also qualify for a heating supplement based on medical needs. Apply to your Community Welfare Office and your means will be tested. Applications are assessed individually, meaning the payment will be determined based on your information and needs.

Fuel Allowance

Again, this is means tested weekly payment of €33 per week starting from end September to April every year, and is in place to help with the cost of heating your home. The 2022/23 payment starts 26th September 2022 and runs for 28 weeks. The total payment available is €924 and you can choose to receive the payment as two lump sums with first payment in September 2022 and the second payment in January 2023.

To qualify, your household income must not be sufficient to cover your heating needs. You must be in receipt of a qualifying long-term social payment such as disability allowance. You must also live alone or only live with a dependant civil partner/cohabitant/spouse/child or person who is in receipt of a full-time carer’s allowance/benefit for either you or your dependant.

Full eligibility and details how to apply available on the Citizens Information website: www.citizensinformation.ie.

Household Benefits Package (HBP)

This scheme helps with cost of electricity, gas and TV licence. If you are over 70, this payment is not means tested and you do not need to be in receipt of a state pension.

However, if you are under 70, you must be in receipt of a qualifying social welfare payment. It is also worth noting that there are different qualifying conditions for those aged 66- 70 and for those under 66.

If under 66, you may qualify if you are in receipt of Disability Allowance or Carer’s Allowance.

Under this scheme you can receive a monthly payment of €35 towards electricity or natural gas. You may not receive both payments.

The electricity or gas bill must be in your own name and the payment will either be to your bank account, post office or to your energy provider on your behalf, depending on which provider you use. If you are renting, the electricity or gas can be in your landlord’s name but you must be in self-contained accommodation and your landlord must confirm in writing that you are a tenant and paying your own electricity or gas bills.

Contact: Department of Social Protection on tel: (071) 915 7100 or 0818 200 400 or on the website: www.gov.ie. Alternatively email householdbenefits@welfare.ie. Read more on this scheme on the Citizens Information website: www.citizensinformation.ie.

Home Improvements

If you wish to make your home more energy efficient to help reduce your energy costs, you may be eligible for local authority support or for grants from the Sustainable Energy Authority (SEAI).

Local Authority Home Improvement Loan

Firstly, check with your local authority if they provide a home improvement loan as not all will. Those that do, can provide a loan to local authority tenants or tenant purchasers who intend to purchase a private house. If you are a housing association tenant on rent subsidy scheme and want to buy a private house, or are on a registered local authority housing list, they may also provide you with a loan.

Your house must be in need of a home improvement, be over-crowded or in need of repair. You must prove to the local authority that you can not access a bank or building society loan and you must satisfy an income test to qualify. This will be based on a gross income of €40,000 or less required for single income, or a calculated gross income of €100,000 or less for two-income households. This is calculated at 2.5 times the gross income of the higher earner plus the gross income of the lower earner.

Read more on this scheme on the Citizens Information website: www.citizensinformation.ie.

Better Energy Warmer Home Scheme

SEAI provides free energy upgrades to homeowners on low incomes. The home energy upgrades include attic insulation, wall insulation (cavity, internal, external), draught proofing, lagging jackets or energy efficient lighting. If you already had some works done pre-Feb 2022 you can apply again for additional upgrades. To qualify you must be owner occupier of your own home which must have been built prior to 2006. It must have a building energy rating (BER) of C or less and you must be in receipt of a qualifying social welfare support payment such as Disability Allowance or Carers’ allowance.

The SEAI will carry out a free BER assessment of your home for you if you don’t already have a BER rating. Apply to SEAI by visiting their website: www.seai.ie, calling their LoCall number, 1800 250 204, or emailing warmerhomes@seai.ie

For more on this scheme, visit the Citizens Information website: www.citizensinformation.ie

Other Supports

If you don’t qualify for any of the means tested home energy schemes you can still look into improving the energy efficiency of your home to try increase your home’s BER rating. The SEAI offers a range of grants to help with this; from single once off measures such as attic insulation to comprehensive deep retro for combined measures such as underfloor heating with air to water heat pump, solar panels and wall and attic insulation for instance.

It is interesting to note that window and door upgrades are now also grant assisted by SEAI – see full details of all grant assisted home energy upgrades. For more information visit the National Home Energy Upgrade Scheme website: www.citizensinformation.ie

Example:

Under the National Home Energy Scheme you can get a grant of up to €3,000 for windows upgrades for a semi-detached house or end terrace house or a grant of €800 per door for up to 2 external door upgrades.

If you install a heatpump and bring your home to BER of B2 or higher, you can get an additional bonus payment of €2,000.

Contact Sustainable Energy Authority Ireland: via their website: www.seai.ie, call 01 808 2100 or email info@seai.ie.

If you do increase the BER rating of your home to B2 or higher you may also be in a position to switch your mortgage to a lower ‘green’ mortgage, which is based on the BER of your home. For example AIB offer a 5-year fixed rate green mortgage rate from 2.1% if your home achieves BER B3 or higher.

You may also apply for home energy upgrade loans from your bank or building society or credit union. For example An Post serve as a once-stop shop for your home energy upgrade and offer a competitive home

Be Proactive

we will all be watching

not leaving them

can proactively

electricity

in use, making sure to switch off at

is in a room, turn off the lights.

as the kettle or the tumble drier. If you do find you use these appliances a good deal, find ways to minimise use such as filling a flask with the spare hot water to avoid having to re-boil the kettle later.

especially mindful of high energy usage appliances

Key Measures to come out of Budget 2023

While fuel costs and the cost of living are set to increase over the coming seasons, Budget 2023 attempted to ease the burden of some of these additional expenses. This measures are detailed below:

Health

• All inpatient hospital charges to be abolished for public patients

• GP visit cards to be provided to 6 to 8 year olds and those on or below the median household income of €46,000

• Once off funding of €11.7 million to reduce backlogs in getting an assessment of need

Social Protection

• Weekly social protection payments will increase by €12 from January 2023

• Carers Allowance will now be paid at the rate of €236

• Domiciliary Care Allowance will increase by €20.50 for €330 per month

• Working Family Payment threshold to be increased by €40

• Increase of €2 in the weekly rate for each qualified child

• Once-off double week payment of all weekly social welfare payments (October)

• Once-off double payment of Child Benefit (November)

• Once-off cost of living lump sum payment of €500 for those in receipt of Carer’s Support Grant (November) – only one per carer, even if they are caring for multiple people.

• Once-off cost of living lump sum payment of €500 for those in receipt of Disability Allowance, Invalidity Pension or the Blind Pension (November)

• Once-off cost of living lump sum payment of €500 for those in receipt of Working Family Payment (November)

• Once-off lump sum payment of €400 for those in receipt of Fuel Allowance (November)

• Once-off lump sum payment of €200 for those in receipt of Living Alone Allowance (November)

• The Christmas Bonus (a double week for all weekly social welfare payments) will be paid in December

• Increase of the earning disregards on both Disability Allowance and Blind Pension by €25 (from €140 to €165 per week)

Education

• 1,190 additional SNAs and 680 additional special education teachers provided

Additional

• 3 x €200 electricity credit payments for all households (payable in November, January and March)

• €67 million to fund 12,300 grants to adapt the homes of older people and people with a disability. €25m for adaptation works to 1,800 existing social homes.

Income Tax

• An increase of €3,200 in the income tax standard rate cut-off point for all earners, from €36,800 to €40,000 for single individuals and from €45,800 to €49,000 for married couples / civil partners with one earner.

• An increase of €75 in the Personal Tax Credit from €1,700 to €1,775

• An increase of €75 in the Employee Tax Credit from €1,700 to €1,775

• An increase of €75 in the Earned Income Credit from €1,700 to €1,775

• An increase of €100 in the Home Carer Tax Credit from €1,600 to €1,700 USC

• An increase of €1,625 to the 2% rate band ceiling from €21,295 to €22,920

• The reduced rate of USC concession for medical card holders is being extended for a further year.

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

Sam

Rory Tallon

Caroline Heffernan

MyMind extends Free Counselling Project

MyMind Centre for Mental Wellbeing is delighted to extend free counselling, psychotherapy and psychological support sessions to anyone in Ireland living with chronic illness, or those otherwise impacted by chronic illness, including family members and carers.

MyMind’s Free Counselling Project is funded by the Department of Health and was officially launched back in February to support a number of key priority groups, namely those impacted by chronic illness.

Designed specifically with the flexibility to extend to other groups that may be in need, the project is open to anybody over the age of 18 and living in Ireland who fits the eligibility criteria, which has since been extended to include those impacted by the ongoing crisis in Ukraine, and those impacted by defective concrete blocks. Appointments scheduled through this project will be delivered in-person, at one of MyMind’s centres in Dublin, Cork and Limerick, online via video call, or by phone, and there is no requirement for referral from a GP or medical professional.

Anyone interested in finding out more information or in booking an appointment in any one of 20 languages can simply visit www.mymind.org, or contact 0818 500 800.

MyMind is Ireland's first and largest provider of blended mental health services, providing counselling, psychotherapy, and psychological support sessions from centres in Dublin, Cork and Limerick, as well as online and over the phone.

A not-for-profit social enterprise, MyMind work towards giving every person in Ireland equal access to mental health support early, affordably, directly, without stigma or delay, with revenue generated from full fee-paying clients used to support reduced fees based on employment status.

MyMind believes that early intervention is the most effective way to prevent mental health issues such as depression, anxiety, and stress from escalating and, to date, we have engaged with over 32,000 people from communities across the country.

SPOTLIGHT

The CF Community is a far reaching community made special by the connections and relationships that exist between PWCF, their families, their friends, their support network and the CFI team. In this Spotlight we hear two unique stories from people who are part of the CF community but in very different ways. Lucy is a volunteer with CFI and best friend of Triona Priestley, who sadly passed away at 16, and Edel - a PWCF and a new Mum.

Volunteer Name: Lucy O'Hanlon

From: Dublin, Ireland

Position: Malin2Mizen Cycle4CF Committee Member

Cystic Fibrosis became a huge part of my life when I met my friend Triona Priestley who was a person with CF.

Raising funds for Cystic Fibrosis Ireland was something we always tried to do but when Triona passed away in 2014, this became even more important to myself and her friends. On the back of a successful #SongForTri campaign which resulted in Ed Sheeran singing to Triona as she passed away, we took every opportunity to fundraise for Cystic Fibrosis Ireland and still do. "Would you like to come down to Mizen Head and greet four cyclists who have just cycled the length of Ireland in honour of your friend and in aid of Cystic Fibrosis Ireland?" - we were asked back in 2015.

Little did we know that at that time, that cycle would become an annual event – Malin2Mizen Cycle4CF, that not only raises vital funds for people with Cystic Fibrosis but would also gives us a space to remember Triona each year and if I am being totally honest changed my life.

I met Triona in school when we were 12 and from that moment on, she was one of the girls. The 8 of us, as thick as thieves, were rarely seen without each other. To this day we are all still best friends and know that Triona is there with us. After the first year of the cycle, we agreed to go back, we didn’t even have to think about it really. In 2017 I agreed to take part and cycle in Malin2Mizen Cycle4CF, cycling 640km from Malin Head to Mizen Head over 4 days.

I wasn’t really sure what I was getting myself in for but I knew it would be tough. But what I didn’t expect was the one thing that kept the wheels turning, the sheer

Keeping The Wheels Turning: Lucy O'Hanlon

scale of camaraderie. I remember at one point we cycled through a large open area and there was a strong cross wind. I was starting to struggle just as I heard, "tuck in close to me and I’ll break the wind for you". That is what makes this cycle so special.

Over the four days on the bike I laughed, I cried, I listened to life stories from people from all walks of life but most importantly I achieved my goal. 4 days and 640km’s later I had successfully cycled the length of Ireland. It was a feeling I had never felt before. Sheer exhaustion masked by sheer joy and a real sense of achievement.

Since then, I have gotten involved in volunteering at the cycle. I cannot put words together that would do justice to describing the support you receive as a cyclist along the way. You are clapped into every stop and cheered on as you leave. At every moment you have someone encouraging you to keep going. The support team for Malin2Mizen Cycle4CF do such an amazing job that you don’t have to think about anything but cycling. They even leave your bag in your hotel room each night for you!! And of course, the craic the support crew bring is unbeatable!

For 2023, I am part of the Malin2Mizen Cycle4CF organising committee and I'm looking forward to helping to make next year's cycle even better, if I can. My reason for being involved in a personal connection to Cystic Fibrosis Ireland. But for others it is the personal challenge of cycling the whole length of Ireland, maybe it’s always been a lifetime dream to do something like this, maybe it is wanting four days of mighty craic. Whatever the reason, each year the cycle helps me to remember Triona in a very special way with very special people, raising funds for CFI who help so many people with CF and their families. And what could be more special than that.

Dreams can come true: The first year of parenthood

Our beautiful, little Shelby-Rose is 13 months now and the time has absolutely flown by. We are so in love with our little girl and the beautiful life we now have. ShelbyRose absolutely loves swimming. Like her Daddy, she adores the water and loves loves loves music and drums. Who would have thought dreams really do come true, I'm living the very life I prayed so hard for.

Life has been so amazing since the day we conceived Shelby-Rose. My pregnancy was a dream in every way. I sailed through it all and had an incredible labour and delivery.

When I was going through my pregnancy, my absolutely amazing obstetrician Dr. Mairead O'Riordan had a lot of concerns at the start about a natural birth for me, and would have preferred a section. But as the months of my pregnancy flew by, she was amazed and really started to believe in me that I could have the wish I wanted and have a natural birth. So we set our minds to that.

My due date was the 18th of August and Mairead wanted to induce me as soon as I felt I couldn't take anymore. Like, if Shelby was to press up on my lungs and cause me more shortness of breath, but of course Shelby-Rose didn't do that and at 39 weeks I was still flying around - not once out of breath - as was Shelby the whole pregnancy. She never ever let me feel tired or like she was taking from me and you know what, she's still the very same now to this day. She is an incredible little girl, who is so, so determined and when she has her mind set on things, just does them (Paul always says exactly like her Mammy). Pure determination.....

Anyway, at 39 weeks on the 9th of August we began induction and after one gel nothing happened. So on the 10th August, they did another gel. And not much happened. I progressed a little but on the morning of the 11th of August at 11am they decided to break my waters. And I went straight into labour, contractions were very close together almost straight away, so we started the epidural drip. Mairead made sure that the epidural would happen so that I could relax and keep strength for pushing.

After the epidural I completely relaxed and was chatting and eating tea and toast all day LOL. By 5pm I was 10cm, and I was told to relax more as Shelby was moving down

more and more, and by 9pm I was ready to push. This was the worry - that I’d push too much or too long and I would affect my energy levels and put too much pressure on my lungs. So I pushed and pushed and felt OK, but they were worried so they said they would help me a little with vacuum or forceps.

I’ll admit, that scared me, but at the same time, I was willing to do anything to make sure Shelby was out and safe. They called the doctors but they were delayed. I really do think it was all meant to be the way it was because they came into the room twenty minutes later and asked “OK are you ready for us to help you?”. I said yes and they checked but Shelby was almost out - she had done it all herself. I pushed three times and she was out! They put her straight on my chest I was in complete shock it was so amazing. Shelby was six pound 12 ounces of perfection, I never had one pain afterwards and was up walking around the next morning. It was amazing.

Our whole pregnancy, labour and birth were so amazing. Mairead made a special request for us to make sure Paul was allowed in from the second I was admitted for induction and that he was allowed to sleep in the room with us every day and night. They fed him all day, every day and made sure the three of us were well looked after and always together. The reason she put in such a special request is she felt I had so much to do with my CF regime and that Paul could look after Shelby-Rose so I could not fall under with my meds.

We stayed in the hospital for 7 days because we eagerly just wanted to have the heel prick test done. This was a scary time. We left the hospital awaiting results of the heel prick test and we were so worried, but we prayed and believed she wouldn't have cystic fibrosis.

We heard nothing so about a week later we rang and were told the amazing news. Paul knew first and rang me as I was in Cork with my Dad. I looked at my Dad and told him and he burst into tears driving. We had to pull over. It was such a special moment. My parents had carried such worry after losing my brother Seamus to CF at 10 months old and were afraid all my life wondering if it would take me. My brother and his wife had a little boy 3 weeks later, our beautiful George and he was also given the all clear. How lucky are we as a family to have our two very own miracles sent from heaven.

Paul and I took to parenting so easily. I won't lie Paul was more maternal than me at the start. I was very nervous and I had post-natal depression - I never felt anything like it to be honest - and it made me question myself on a new level. People need to look after the Mother when baby arrives too because hormones really can really mess with your mental health. Thankfully with lots of talking, crying and meditation and prayer, that horrible feeling lifted from me.

I couldn't have picked a better husband and father to have my little baby with. I thought I knew love before but now it's even deeper. Who knew the love a child can make you feel like this. Personally, I feel like your own child opens a part of your heart and your whole being you never knew even existed within you,. Nothing is ever too much for Paul when it comes to me and Shelby-Rose. He has done every second night feed since the day Shelby was born and has supported me for weeks when I was ill with IVs.....

I’ve had to have two sets of IVs very close together in April of this year and no matter what I just couldn't get better. I had to leave them both for ten days because they had to try and add IVs in that I never had before so I had to be admitted and with Covid still happening I wasn't allowed see them or even go out to the door to them. That was tough on all of us but once again Paul took charge like he always does and was brill. Thankfully my health started to get better once I got all the drugs out of my system, but it was tough. I was allowed home to finish my IVs and found I had a drive in me that I didn’t have before to do them and everything else too.

We stayed cocooning for eight months of Shelby's life as we just didn't want Covid for any of us. After all, we had stayed in for almost two years, even though my whole pregnancy we were alone because we didn't want to risk Covid - no way no how!

After those eight months, Paul and I had a good chat about it. Paul knew how eager I was to get back out

there socially and the impact that isolation for two years had on my mental health as well as post-natal depression. So I found a job that I truly love with a lovely Manager and great girls who work there. It’s ran so well and there's no unnecessary pressure on staff. The job is in fashion and we all know how much I love clothes LOL! Shelby was only 8 months but we knew I needed it and once again Paul supported my needs and pushed me to go for it, and I am a stronger person for it.

Unfortunately Covid finally caught us and as Paul likes to tell me I brought it home LOL! I passed it on to Shelby-Rose and then Paul got it. Would you believe I had barely any symptoms! I had a sick tummy and a little few aches and pains, but Paul and Shelby-Rose started to become very ill and Shelby-Rose was admitted to UHW paediatrics for almost a week. She had febrile convulsion from her temperature and they just couldn't get it down. Her heart rate was 200 and I was terrified. I had to stay in isolation in paediatrics with her but the team there were amazing. Paul even ended up in A&E with his throat was closing but we all healed eventually about 3 weeks later. But we are all still baffled how well I breezed through it. I will say, it did hit my chest, well it inflamed my CF when Covid was gone. My chest kept filling up so I took lots of orals and a new nebuliser antibiotic and they worked a trick.

But other than that life really is amazing. We savour all the little things every day; sitting at the table eating beautiful food, laughing, loving, playing and we love the beach. To come from a life where you’ve been so ill for so many years and your life was so bad that you couldn't work and you’d have nap every day because your body was being hammered so much by CF, to now being a Mother, a wife and working, sometimes I cry with gratitude. I look up at the sky and I say "how is this my life?" I am so grateful for everything, every day with the people I love and doing the simple things that make me happy. Kaftrio has been so amazing for me and so many others. I still do get frequent Infections but I am so much stronger now when I have an infection than I was before. I haven’t been feeling great the last few weeks but I'm trying to get better.

So, CF has not gone away and I still need to keep up my treatment regime. It’s hard to fit it all in and not feel bad for Shelby waiting around for me but I'll never ever skip a neb because that is what keeps me well and healthy for her in the long run. I might be facing more treatment soon to try new orals I've never had before, and hope and pray they work. But that's life with CF and life now with CF is far different than the life I had 6 years ago. Shelby is joy, that's the best word to describe her. We walk into shopping centres or anywhere and people stop in their tracks because she has a smile from ear to ear for everyone. She is so, so social and for a child who was in isolation for so long she is just amazing in every way.

She is crawling now and pulling herself up to standing and walking when we hold her hands she is only weeks away from walking. We are so blessed and sometimes we have to pinch ourselves for all the beauty in our life

Love always Edel, Paul and Shelby-Rose

The Kaftrio Dispute: The

The Protest in Pictures

It's Flu Vaccine time of year again. Here's a reminder of what you need to know.

Why get the flu vaccine every year?

Flu Vaccine

Information for People at Risk

Each year, the circulating flu viruses change, so each year the composition of the flu vaccine changes to provide protection from the new strains of flu virus expected. The flu vaccine helps your immune system to produc anitbodies (proteins that fight infection) and protects against the 4 circulating strains of flu virus. This means that if you have had the flu vaccine and you come into contact with the flu virus, the vaccine can stop you getting sick.

What vaccines are available this flu season?

The 2022/2023 HSE seasonal flu vaccination programme will offer 3 vaccines:

• the Quadrivalent Influenza Vaccine (split virion, inactivated) manufactured by Sanofi Pasteur for

• people with long term conditions and people aged 65 years and older

• Influvac Tetra, manufactured by Mylan for people with long term conditions and people aged 65 years and older

• the Fluenz Tetra nasal spray suspension Influenza vaccine (live attenuated, nasal) manufactured by AstraZeneca AB for children aged 2-17 years

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

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

What is the Pneumoncoccal Vaccine?

If you are 65 or older or have a long-term medical condition, you should also ask your GP (Doctor) or pharmacist about the pneumococcal vaccine, which protects against pneumonia. You usually only need to get pneumococcal vaccine once. You can get this vaccine on the same day as the flu vaccine.

Will the flu vaccine protect me against COVID-19?

No. The flu vaccine doesn’t protect against COVID-19. It is important to get both the flu vaccine and the COVID-19 vaccine/booster. This is because Flu and COVID-19 are caused by different viruses. Flu and COVID-19 can both cause serious illness and if you get them you might need to be admitted to hospital. It may be difficult to tell the symptoms of flu apart from the symptoms of COVID-19. If you have had the COVID-19 vaccine you should still get the flu vaccine. You can get a COVID-19 vaccine at the same time as the flu vaccine if it is offered to you. Visit the www.hse.ie for specific information related to boosters.

Kid Heroes

Summertime Social Entrepreneurs

You may have seen CFI member and person with CF (PWCF), Robyn Kelly (7) and her sister Anna (9) in the newspapers earlier this year with Taoiseach Micheal Martin at his offices on 65 Roses Day. More recently you may have seen Robyn appear with her Mum on Ireland AM talking about the ongoing Kaftrio dispute which has denied Robyn and 34 other children in Ireland access to Kaftrio.

But what you won't see on telly or in the newspapers is the hard work that Robyn and Anna put in away from the camera lens to help CFI and PWCF, like Robyn fight CF everyday. So we would like to tell you a little bit more about these wonderful girls and what they spent their summer doing.

Like many children, the girls decided they would like to do something to raise money for charity. Luckily for us, they chose CFI! They worked with their friends, Emily, Katelyn and Grace and came up with an idea to create bookmarks to sell to their neighbours.

Filled with entrepreneurial spirit, they priced the book marks at a minimum of 10c a piece, to ensure they were accessible to everyone. A person who bought a bookmark could pay more than 10c but not less. Over the course of the summer, the young social entrepreneurs raised a staggering €178!!!

Such was the success of these bookmarks, that when Anna and Robyn learnt of the Kaftrio dispute, Anna wondered if they could do some thing similar again to help Robyn get the medi cine that she deserves.

We think that is a wonderful idea but with school and playdates, sports and afterschool activities, children these days are very busy.

So CFI would like these wonderful children to know that we are doing our very best to make sure the money raised will help Robyn and other children who fight CF every single day get all the treatment and services that they are entitled to. Well done and thank you from the bottom of our CFI hearts for all your hard work!

Anna Kelly (9), Robyn Kelly (7), Emily Aherne (7), Katelyn Aherne (9) and Grace Foy (8)

The CFRI

Who we are & what do we do?

The Cystic Fibrosis Registry of Ireland (CFRI) is the patient registry for those living with Cystic Fibrosis in Ireland. A patient registry is a secure, centralised database, containing health data on people with a specific diagnosis or condition.

The role of CFRI 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. We analyse this data for different purposes, all with the wider aims of strengthening Cystic Fibrosis research, improving CF care, and ultimately of improving the health outcomes for those living with CF.

What's new with us?

Happy birthday: celebrating 20 years of CFR

We have been reporting CFRI data for 20 years, so it’s our birthday!

To celebrate, we have lots of things in the pipeline over the next few months including a 20th anniversary report looking at the history of CFRI and the trends in CFRI data over the last 20 years. Look out for this towards the end of the year! We’ll be sure to share this on our social media channels so follow-along as we celebrate @CFRegistryIE

Rotterdam: team CFRI at ECFS

Four members of the CFRI team went to Rotterdam to attend the European Cystic Fibrosis Conference. Laura Kirwan presented at the conference – her presentation was on our data on the impact of SARS-CoV-2 on people with CF in Ireland. We also had a poster on our results too.

Our new data entry system is live

We have been investing in the upgrade of our data collection software, that is the system into which we enter all CFRI participants’ data. We are excited to announce that our new secure system is live! Our new system has improved functionality across data entry and analysis.

Ensuring quality @ CFRI

CFRI is committed to ensuring the data we report on is of highest quality. This means ensuring we record

things accurately; that data is as up-to-date as possible and consistently recorded; and that we record data across all the CFRI variables where they are available. To do this, we will be implementing a new data quality programme at the end of the year.

Reconsenting

Due to changes in GDPR, CFRI need to ask you to re-confirm your consent for the registry to collect your information. If you have not re-confirmed your consent, please contact your CF Centre or the Registry on how to go about this.

Want to get involved?

Consent

Participating in the registry has indirect benefits in terms of having better information that can help improve planning and delivery of care and services that a person with CF receives. The more people that participate, the better the quality of the information that can come out of the registry. If you would like to participate in the registry, please contact your CF Centre of the CF Registry at info@cfri.ie. Participation is entirely voluntary. You are free to revoke your consent and withdraw from the registry at any time.

Social media

We would love if you could follow us on social media. We post updates on our work and on the exciting projects we are working on. Use the QR code to access all our social media channels.

Get in touch

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

Research News

Oral Health and CF

Contribution by: Liz Jacques, Mid-West Regional Development Officer CFI / TLC4CF

We all learn the importance of oral hygiene practices from a very young age. Brushing teeth twice per day, flossing and visiting the dentist regularly is considered essential for maintaining healthy teeth. However, these good behaviours can wane at times – we’ve all known children to refuse to brush their teeth before bed, and most adults can hold their hand up and admit to forgetting to brush their teeth in the morning rush at least once in their lifetime.

Researchers in Ireland recently examined the oral hygiene habits of adults living with CF. Dr Niamh Coffey, a Clinical Fellow in Restorative Dentistry at Cork University Dental School and Hospital, Dr Martina Hayes and team conducted a survey of adult PWCF in Ireland on dental care and hygiene practices, with the support of Cystic Fibrosis Ireland. The results of this research were published in the Special Care in Dentistry Journal in August 2022.

What did the research tell us?

Researchers surveyed 71 people living with CF (PWCF) in Ireland. The questions ranged from general re spondent information (age, gender, CF genotype), to daily oral hygiene habits, alcohol use, diet and smoking. Nearly half of respondents reported having tooth-related discomfort (or tooth-ache) in the last year, which concerned the research group. Pleasingly, smoking and alcohol consumption in the group was low, as smoking and alcohol use are considered risk factors for oral health disease and cancer.

This study highlighted that the majority of respondents consumed a high-sugar and high-fat diet, including the need for a high calorie snack when taking CFTR modulators. One-third of respondents also consumed oral nutritional supplements that may also have negative impacts on dental health. The researchers felt these unique dietary requirements for PWCF may place PWCF at higher risk of cavities and tooth decay and demonstrate the need for PWCF to maintain good oral hygiene practices.

Less than two-thirds of people surveyed did brush their teeth twice daily. It is recommended that all adults and children brush their teeth twice per day, as tooth brushing is the most effective way to control plaque build-up on your teeth. Plaque is an almost colourless sticky bacterial film, which sticks to the tooth surface. When foods containing sugars are eaten, the bacteria in this film breaks down the sugars and produces acid. This acid then dissolves the surface of the enamel underneath the plaque, causing tooth decay. Also, just

as significant, was the researcher’s finding that over half of people surveyed did not change their toothbrush regularly. It is recommended to change your toothbrush or toothbrush head every 3 months. Microbial deposits on toothbrush heads have been found to increase the older the toothbrush head is, acting as a reservoir for potentially harmful bacteria.

What’s the recommendation for people with CF?

Because of the higher risk of dental cavities and decay, it is advised that people living with cystic fibrosis ensure they follow the recommended guidelines for good oral hygiene and dental health:

• Brush twice a day, at bedtime and one other time for 2-3 mins.

• Use a soft/medium toothbrush and fluoride toothpaste

• Brushing your tongue helps reduce bad breath.

• Spit, don't rinse after brushing to keep the fluoride in your mouth.

• Floss daily. Ask your dental team for advice on technique.

• Change your toothbrush when bristles are worn (or at least every 3 months).

• Visit your dentist every 6 months for a check up

(Source: Dental health Foundation Ireland)

A diet high in fruit and vegetables, as well as avoiding smoking and limiting your alcohol consumption are also ways to maintain your physical health as well as your oral health.

Visiting the dentist:

It is recommended that people with CF should visit their dentist every 6 months for a check-up and cleaning. Unfortunately this can be a costly experience for some.

In Ireland, people who have a Medical Card can access a range of dental services and treatments under the Dental Treatment Service Scheme. For people with cystic fibrosis who hold a medical card, you are entitled to an annual examination, two fillings and extractions and cleaning. However your dentist must accept medical card patients.

Cystic Fibrosis Ireland recognise that not all dentists accept medical card patients. In fact, the number of dentists who accept new medical card patients are reportedly reducing due to increased costs in the industry. This situation certainly can make it difficult to ensure PWCF have regular visits to the dentist. The best way to find a dentist who accepts medical card patients is to visit the Irish Dental Association website (www.dentist.ie) and click on 'Find a Dentist' to search within your county. This facility allows you to determine who accepts medical card patients and contact them directly to enquire about new patient appointments. For people with sufficient PRSI contributions you may also be eligible for one annual examination and a payment of €42 towards either a scale and polish or - if clinically necessary - periodontal treatment per year. You can find out more about the Treatment Benefit Scheme by visiting citizensinformation.ie.

Discussions to have with your dentist

There are several requests you can make to your dentist as a PWCF. Prior to making your appointment, ensure your dentist is aware that you have CF. It’s a good idea to provide them with an up-to-date list of your current medications too. You can request the first appointment of the day, to avoid waiting in a busy waiting area and to limit your exposure to aerosols and infection. Explain when booking that you cannot booked on the

same day as another patient with CF to avoid opportunities for cross-infection. To be confident with infection control procedures, ask the clinical team to wipe down high-contact areas prior to you entering the room (dentist chair surface, armrests, trays, doorhandles).

If you have concerns about lying flat during treatment in regards to your airway clearance, you can make a request for the dentist to provide treatment in an upright or semi-upright position in the dental chair too. If you are worried about coughing during treatment, agree a signal with your dentist prior to beginning your appointment. For example, explain you will lift your arm if you feel the need to cough so the dentist will know to pause activity and allow you a chance to cough.

All of these asks are reasonable and evidence-based. It will not be difficult for your dentist surgery to accommodate your extra requirements due to your CF, so speak with them to ensure they understand the need for extra measures. This will ensure that your experience in the chair is a safe and comfortable one.

Transplants and oral health

If you are living with advanced CF and awaiting transplant, good oral health care is very important. Ensure you brush twice daily, and see your dentist regularly. Maintaining a healthy mouth will reduce the chance of major extractions prior to transplant.

If you are post-transplant (any organ), you need to take good care of your mouth and gums. Brush your teeth twice daily, check for bleeding gums or ulcers, and visit your dentist for professional cleaning at least twice per year.

Any mouth or tooth infection can be serious for people living with an organ transplant. It is essential your dentist knows you have had an organ transplant and understands what immunosuppressant drugs you may be taking. Talk to your transplant nurse in case you need antibiotics prior to visiting the dentist for any cleaning or treatment.

Cystic Fibrosis Ireland recently published an information booklet written by Dr Niamh Coffey and team, titled “Oral Nutritional Supplements and Oral Health in People with Cystic Fibrosis”. This booklet has tips on maintaining good dental hygiene whilst taking prescribed oral nutritional supplements and can be downloaded from the Cystic Fibrosis Ireland www.cfireland.ie

Pathways to Improving Transition to Adult services & Enhancing Self-Management in Adolescents with Cystic Fibrosis: A New Era of Treatments

Research content by: Sarah Tecklenborg, Senior Research & Policy Coordinator, CFI

The teenage years are a time of change. Being an adolescent with Cystic Fibrosis (CF) can bring additional challenges due to complex and demanding treatments. A key task for teenagers with CF is to learn the skills to manage their health, as they prepare to transition into adult-based care. The term “transition” describes the process of planning, preparing and moving from children’s health services to adult healthcare.

It is a gradual process of change which aims to achieve the best outcomes possible for people with CF in the areas of health, independence and adulthood.

In Ireland, many adolescents transition to adult services at age 17. The transition to self-care can often result in reduced adherence to treatments, which can affect health outcomes.

The availability of new modulator drugs has substantially improved clinical outcomes in CF. Consequently, young people may face a future that requires less inpatient care, more outpatient support and greater reliance on managing their CF independently. The question of how well young people will adapt to these changing circumstances is of real interest to researchers.

Health Research Charities Ireland (HRCI) is the national umbrella organisation for charities active in health research in Ireland. Together with the Health Research Board (HRB), HRCI administers the HRCI/HRB Joint Funding Scheme, an innovative, invaluable research funding scheme through which charities co-fund internationally competitive, impactful patient-focused research for their members.

In 2022, Dr Caroline Heary, Senior Lecturer, Department of Psychology University of Galway and a team of clinical staff and researchers, submitted an application to the Joint Funding Scheme titled: “Pathways to Improving Transition to Adult services & Enhancing Self-Management in Adolescents with Cystic Fibrosis: A New Era of Treatments”.

This research seeks to support adolescents with CF to successfully manage their health, as they prepare to transition to adult services. Dr Heary and team were successful in the scheme and Cystic Fibrosis Ireland and the Health Research Board will co-fund this project over the next few years.

'Taking responsibility & self-management' and 'Transition to adult services' Research Aims

Dr Heary’s research programme focuses on two key areas: ‘’Taking responsibility & self-management’ and ‘Transition to adult services’.

The research aims to:

1. Explore the experiences of young people on Kaftrio (investigating the impact of the therapy on self-care; identity and view of the future).

2. Identify ways of supporting young people as they manage their health and prepare to move to adult services

3. Conduct a nationwide survey of teenagers with CF to identify what factors are associated with transition readiness.

4. Adapt an international peer mentoring programme called iPeer2Peer so that it is suitable for teenagers with CF. This online programme connects teenagers with young adults who have lived experience of CF, to mentor and support teenagers as they prepare to move to adult services

This programme of research seeks to improve the quality of young people’s lives. The voice of young people with CF has been central to this project. In developing their research application Dr Heary and team consulted with a youth advisory group from Cystic Fibrosis Ireland to hear their view of the research question and proposed project. The team took on board the preferences of this advisory panel and amended the project plan. The advisory group stated a preference for a peer mentoring element to the work and this was added following the consultation. The team will continue to collaborate with a youth advisory panel throughout the lifecycle of this project to ensure it continues to meet their needs.

“The aim of this programme of research is to learn more about how we can support adolescents living with CF to successfully manage their health, as they transition to adult services. New treatment options have changed the clinical landscape for many young people living with CF. This research provides us with the opportunity to engage with & learn from young people living with CF with a view to identifying optimal supports for young people during key transitions.” Dr Caroline Heary, Principle Investigator

CF Ireland are excited at the prospects of this research programme. Researchers hope to develop evidencebased approaches to support young people at critical junctures in their youth: namely self-management during the adolescent years and transition to adult services. The ultimate goal is to identify the best ways that young people can be supported in their transition to self-management of their CF in adulthood.

“The transition to adult services can be a challenging experience for young people with CF. CFI is delighted to support Dr Caroline Heary and her research to identify ways in which this transition can be made as manageable as possible, drawing from the direct experience of young people with CF. We further know the outcomes of this research will be of wider interest to people living with other long term, non-CF, conditions who can face similar challenges to transition.” Philip Watt CEO CFI

Cystic Fibrosis Ireland will bring you regular updates on this project over the coming years, the research is due to begin in November 2022. For more information, please visit www.cfireland.ie

European Cystic Fibrosis Society – Clinical Trial Network

The European Cystic Fibrosis Society (ECFS) is an international community of scientific and clinical professionals committed to improving survival and quality of life for people with CF by promoting high quality research, education and care. For a rare disease such as CF, it is important that countries work together as much as possible. There is also a need for close cooperation between patients, patient organisations, pharmaceutical industry and academic research institutions.

When trying to standardise new or existing working methods (for example to measure lung function or to perform a sweat test), it is important to have an international dialogue. If everybody works the same way, there is less variation in results, which means that less patients have to participate in a clinical trial to prove the same effect.

To promote such cooperation, the European Cystic Fibrosis Society, took the initiative to setup a “Clinical Trials Network” (CTN). Currently the network combines CF specialists from 57 centres in 17 countries and a coordinating centre in Leuven, Belgium.

The aim of the European Cystic Fibrosis Clinical Trial Network is to intensify clinical research in the area of cystic fibrosis and to bring new medicines to the patients as quickly as possible. This is done by:

• Sharing expertise among dedicated CF researchers

• Involving and cooperating with patient organisations

• Centralising review of clinical trial protocols in cooperation with the pharmaceutical industry

• Supporting the study conduct in the clinical trial sites that are part of the network

• Standardising research procedures and outcome parameters and

• Providing training to the site’s staff.

An important task of the ECFS-CTN, is the review of new study protocols by a team of experts. They look at the scientific quality, feasibility for the patient and the therapeutic importance of the tested drug. Centres that are part of the CTN will only conduct trials that have been approved by this review system. In 2021, the ECFS-CTN reviewed and approved 10 commercial protocols from 4 different companies.

Why is it important that the protocol is reviewed by a family member or person living with CF?

“

While a family member/CF patient may not be the perfect medical expert, we are experts when it comes to living with CF. I am convinced that our insights can help to make study designs more practical and easier to integrate. Sometimes researchers are not aware of other CF factors – so we can bring in that perspective and make sure it is not overlooked." Anne, PWCF, Germany

Apart from study design, motivating patients to take part in research and promoting safety of participants in clinical trials are of great importance. Between November 2020 and November 2021, ECFS-CTN sites enrolled 529 people with CF into clinical trials. Three quarters of these were adults. Twenty-eight studies were undertaken in 2021, mostly assessing CFTR modulators. Studies were mostly phase 3 trials, these are trials that compare new treatments with the best currently available treatment, or standard treatment.

CAR-CF

CAR-CF, the Covid Antibody Response in CF study, is an investigator-initiated trial supported by ECFS-CTN which collects blood samples from people with CF across Europe to detect whether they have had Covid-19 or not. CAR-CF will also look at how well people with CF develop immunity to COVID-19 after vaccination and how this immunity changes over time. The trial is being conducted across 14 countries in Europe plus Canada and the USA. The first results from this study are expected in 2024.

Vincent, a person with CF explains why he is taking part in CAR-CF:

“Fantastic that a study like the CAR-CF study was initiated! The Covid-19 pandemic affected us all very much – with a special threat to all patients with chronic lung diseases like CF. So gaining scientific knowledge out of this trial is essential. And to hear that this trial is performed as a huge European study is great as we need this unification especially in these currently very difficult times. I am proud to be a part of it.”

PRO-CF Patient Reported Outcomes in CF

There are many ways of measuring whether a person’s CF is stable, getting better or getting worse. One deceptively simple way is just to ask the person – after all nobody knows CF better than those living with it. However, turning the question “how are you feeling?” into something that doctors and researcher can track, measure and compare is an altogether bigger task.

And this task is becoming more and more important, since the agencies in charge of approving, licensing and reimbursement of new medicines take into account changes in “quality of life”. Agencies such as the European Medicines Agency, will only accept quality of life data if it was collected using an agreed questionnaire, also called a patient-reported outcome measure (PROM). These questionnaires are developed and tailored to the condition itself and the age of the patient group taking part in the study.

In CF, the most common quality of life measure, which many PWCF will be familiar with, is a questionnaire called the “Cystic Fibrosis Questionnaire-Revised” or the CFQ-R for short. This questionnaire has been used for many years and has featured in many clinical trials. However, some of the questions are a bit old-

fashioned. People with CF have been asking for a questionnaire that’s more adapted to modern day life. In 2019, the ECFS-CTN started working with CF Europe and a group of people with CF to create a new quality of life questionnaire called PRO-CF (Patient Reported Outcomes in CF). This questionnaire aims to more accurately assess people with CF’s quality of life and allow them to report their symptoms, including areas not previously captured in existing tools. The questionnaire is now undergoing validation, an important step which will make sure that the PRO-CF questionnaire can be used to support the development and licensing of new medicines.

To learn more about the work of the ECFS-CTN, the trials that are ongoing, and to read the experiences of some of the people with CF who participated in trials, please visit https://www.ecfs.eu/ctn. You can read the most recent annual report from the ECFS-CTN here: https://www.ecfs.eu/ecfs-ctn-annual-reports.

HOSPITAL HUB

Transplant Alert Wallet Cards

Did you Know?

The Mater Hospital have designed new Transplant Alert wallet cards. The cards have been designed for people who have had an organ transplant in the past. They include a list of medicines you must never be prescribed and also have the list of the Transplant Nurse Team contact details. The cards are wallet size and available at the Transplant clinic at The Mater Hospital.

University Hospital Limerick

The Adult Cystic Fibrosis MDT team at UHL collaborate closely with all patients living with Cystic Fibrosis who require support to manage their condition. All reviews are continuing in the hospital as required. Clinical trials are also continuing to develop with new modulators for the future. We endeavour to advocate for all our patients in our service – Caitriona McGrath, Adults CF Clinical Nurse Specialist

Children's Univeristy Hospital, Temple Street

Sending our best wishes and warm thanks to our longstanding colleague, Joan Maye, CF Clinical Nurse Specialist, who has recently retired. Joan spent 41 years in service at Temple Street, with the last 15 of those working in CF. She will be sorely missed by all of her colleagues at Temple Street.

Joan would like to take this opportunity to acknowledge her appreciation and gratitude for all the gifts and cards so generously given by the parents and children who attend the CF unit in Temple Street. Sharon Deignan, CF Clinical Nurse Manager

(Image 1, L-R: Dr. Fiona Healy, Dr. Michael Williamson, Joan Maye CF Specialist Nurse, Prof. Dubhfeasa Slattery)

Mater Misericordae Hospital

We are delighted to have Sandra our CF dietitan back from maternity leave and would love to officially congratulate her on the birth of her beautiful daughter Aoibhinn.

We would also love more pictures of people living their lives or doing something they love to add to our picture wall, whether that be spending time with family, playing sport, attending college/graduating, or working… whatever picture you feel expresses your life living post-transplant!”- Susan Talbot Towell, Lung Transplant/Cystic Fibrosis Clinical Nurse Specialist Mater Misericordae Hospital

Congratulations go to Professor Barry Linnane

Our congratulations go to Prof Barry Linnane, Paediatric Respiratory Consultant at University Hospital Limerick, for receiving the “Limerick Person of the Month” award in April of this year. Prof Linnane, along with two other members of the public, delivered CPR to a man who had collapsed and saved his life. Congratulations on your heroic efforts Barry!

Image

Brendan Gleeson

My Legacy

My Legacy Month – September 2022

Making your Will and thinking about making a bequest to a charity you care about, like Cystic Fibrosis Ireland, are both things to consider during September which is - My Legacy Month.

Having a will gives you the security of knowing your loved ones will be looked after when you are gone. During My Legacy Month, you are encouraged to take the first step in creating your will by scheduling an appointment with a solicitor. Cystic Fibrosis Ireland is a member of MyLegacy.ie, who have the backing of hundreds of legal companies across the Ireland and can provide expert advice and guidance on writing a will at any time of year.

It is usually a much MORE straightforward and less expensive process than you might anticipate, and when you book your appointment, your solicitor will explain rates for drafting this crucial personal document.

After providing for family and friends and making all other critical personal decisions, opting to leave a legacy contribution to a charity, such as Cystic Fibrosis Ireland, is a wonderful way to support your favourite cause. Every legacy, no matter how large or small, is an immensely generous gift of hope and confidence for the future of people with CF in Ireland.

We recognise that leaving a legacy is a very personal decision. Some people choose to notify us that they have remembered Cystic Fibrosis Ireland in their will. Others might rather keep their desires hidden, leaving it to their executor or attorney to notify us when the time comes.

1. Make an appointment

Look after your loved ones first

Consider a legacy to

1. Make An Appointment

Avail of expert advice and support

Take the initial step toward discussing your future goals and decisions.

2. Look After Loved Ones First

Why a will is important.

A will provides for loved ones, assigns guardians, protects your possessions, and aids in the reduction of inheritance tax.

3. Consider A Legacy to Charity

Your gift may be big or small and is tax free

If you have a cause close to your heart such as Cystic Fibrosis Ireland, please consider leaving a gift to that charity in your Will.

Many people can afford to give far more in their will than they ever could when they are alive. It will not cost you anything in your lifetime, but your generosity will allow us to support future generations and establish long-term plans for Cystic Fibrosis care throughout Ireland.

By leaving a legacy gift to Cystic Fibrosis Ireland you help us to;

• Support groundbreaking research so that one day, CF can stand for 'Cure Found.'

• Fund specialist Cystic Fibrosis multidisciplinary posts in hospitals throughout Ireland

• Fund Cystic Fibrosis units around the country, including in-patient, day care, and out-patient institutions.

• Directly assist people with Cystic Fibrosis through exercise, transplant, fertility counseling, and bereavement grants.

• Provide counseling, education, and advocacy services to people who have Cystic Fibrosis.

For more information on leaving a legacy gift in your Will, please see the enclosed leaflet “Your Legacy Could Be Life Changing”, visit our website at www.cfireland.ie or the My Legacy website www.mylegacy.ie. Alternatively, you can contact us on 01 496 2433 / info@cfireland.ie for more information.

Take the time to make a will and consider a legacy gift to enable Cystic Fibrosis Ireland help future generations.

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.

September 18th to 25th: International Walk

Cystic Fibrosis Ireland would like to offer huge congratulations to everyone who took part in our Annual CFI International Walk from September 18th – 25th in Madeira! Each walker does an amazing job each year fundraising to take part in this walk and funds raised are essential in terms of allowing Cystic Fibrosis Ireland continue to provide support and services for people with Cystic Fibrosis in Ireland.

We would also like to take this opportunity to say a huge thank you to volunteers Bernie Murphy and Vinnie O’Malley who work tirelessly as part of the CFI International Walk Committee to ensure the walk experience is an enjoyable experience for all walkers. Thanks also to our new partner Sunway who have provided a fantastic venue and trip for this years walk.

Keep an eye on our Social Media for the announcement of the venue for our CFI International Walk for 2023 which will be revealed at the end of the walk in Maderira. Places will fill up fast for next years walk so please register your interest on www.cfireland.ie, call us on 01 4962433 or email fundraising@cfireland.ie to secure a place.

October 2nd: TCS London Marathon

Registration is now closed for the TCS London Marathon 2022. Good luck to all our participants in the event and we look forward to getting some really nice photos from the day.

We are really excited to confirm that we have secured a limited number of guaranteed places for the TCS London Marathon 2023 which takes

place on Sunday 23rd April. To secure your place make sure to register your interest NOW on our website –www.cfireland.ie. For further details call us on 01 4962433 or email fundraising@cfireland.ie

October 30th: Irish Life Dublin Marathon

The Irish Life Dublin Marathon returns on Sunday, 30th October for the first time since 2019.

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

For further information, please contact us by email fundraising@cfireland.ie or call (01) 496 2433.

November 7th: TCS New York City Marathon

Best of luck to all of our runners who are bravely taking on the New York City Marathon in November. We look forward to seeing all the lovely photos.

We will have a limited number of guaranteed places available for the 2023 TCS New York City Marathon once registration opens.

Keep a close eye on our Social Media and make sure to register your interest on our website www.cfireland.ie as soon as details are announced to secure your place. For further details please email fundraising@cfireland.ie.

December 9th: Christmas Jumper Day 4 CF

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

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

1. Ask your work colleagues or fellow teachers and pupils to support Christmas Jumper Day 4 CF on Friday, 9th December. Encourage everyone to wear their Christmas Jumper to work in return for a €5 donation to support people with Cystic Fibrosis in Ireland!

2. Register your interest to participate at www.cfireland.ie and we will contact you and organise to send you a Christmas

Jumper Day 4 CF pack - balloons, bah humbug badges, posters, sponsorship cards and collection buckets as required.

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

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

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

Post them to our Facebook page (facebook.com/CysticFibrosisIreland), share them using the hashtag on Twitter or Instagram #to #CJD4CF2022 and tag us (@cf_ireland), or simply email them to us at fundraising@ cfireland.ie so that we can share your fun with everyone else.

After the event you can;

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

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

· Donate online at www.cfireland.ie

(Please remember to include your companies / schools name as a reference so we know who it’s from).

Don’t forget register your interest to take part in Christmas Jumper Day 4 CF at www.cfireland.ie and we will help you organise everything for your Christmas Jumper Day 4 CF 2022 – Ho Ho Ho!

December: Christmas Cards

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

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

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

September 14th to 17th, 2023: Malin2Mizen Cycle4CF

We are absolutely delighted to announce that our Annual Malin2Mizen Cycle4CF will take place on Thursday 14th to Sunday 17th of September 2023. There has been a huge interest in the event so far so please ensure to register as soon as possible on our website at www.cfireland.ie to secure your place.

Malin2Mizen Cycle4CF will begin at Malin Head in Co. Donegal on Thursday 14th September and will finish in Mizen Head in Co. Cork on Sunday 17th, September. The event requires plenty of training as we will be

covering an incredible 640km in 4 days!

You can register for our 2023 cycle on our website at www.cfireland.ie or by contacting us on (01) 496 2433 or emailing us on fundraising@cfireland.ie.

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

All Year Round: International Treks

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

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

Skydives

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

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

Thank You FUNDRAISING:

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:

10th Annual Head2Head Walk

Cystic Fibrosis Ireland would like to say a huge thank you to everyone who took part in the 10th Annual Head2Head Walk on Sunday 4th September. It was a fantastic day with 450 people taking part.

Lunch was provided at the half way point in Sandymount courtesy of Scribbles and Fyffes. The walkers then continued on their way towards the finish in Bray where they received their exclusive 10th Annual medal.

A huge thank you to James Downes, Lorri Downes, Mary McCarroll, Glen McDonnell, Denise O’Brien and Luke Kennedy and their team of volunteers who put an enormous amount of work into organising this event with CFI and ensuring it ran smoothly on the day. We would also like to say thank you to Scribbles, Fyffes, Haribo and Ballygowan who provided food & refreshments for the walkers. Special thanks also to the Gardai, St. John Ambulance, the bus drivers and cycle marshals who helped out on the day.

We would especially like to thank all our walkers for turning out yet again in huge numbers. We hope you had a great day and your fundraising makes an enormous impact on the ability of CFI to support people with CF in Ireland. If you have sponsorship money to lodge from the event, you can do so using the bank account details below. Please remember to include your name and ‘H2H’ as a reference so we can receipt accordingly.

IBAN:

We look forward to seeing you all again at the Head2Head Walk 2023! Date will be announced in the coming weeks.

Image credit: Jerry Buhna

Great North Run

Slightly further afield, we'd like to extend a massive thank you to Juan Diez, Lauren Murray, Joe Murray, Sue Murray and Daniel Diez who are pictured here having completed the Great North Run in memory of Siobhan Murray, Lauren's sister and Sue and Joe's daughter, who sadly passed away from CF in November 2021. Siobhan herself completed the Great North 5km in 2019 in memory of her donor.

The group raised an astounding €9,026 for CFI which was topped up by €1,100 by global healthcare company, Fresenius Kabi, where Joe works.

Bake Sale

A huge THANK YOU to again to everyone who organised 65 Roses Challenges for 65 Roses Day including Ashling Nolan and Sandra Samuels. They organised a bake sale in their workplaces in memory of their friend Lyndsey Harris, PWCF who sadly passed away earlier this year.

Ashling & Sandra raised an amazing total of €5,855 and visited CF House to present the cheque to our Fundraising Manager, Fergal Smyth.

Moyne Rangers

Following on from the very successful Moyne Rangers Legends match which took place in July, in honour of the late Joe Doyle PWCF, an amazing amount of €1705 was raised for Cystic Fibrosis Ireland. Thank you to everyone who made this possible!

At the cheque presentation which took place at the Moyne Rangers pitch were Aidan Browne, Deirdre Breen, Fergal Smyth CFI, Anthony Breen and Kevin Lawlor. A special mention goes to Denise and Sean Redmond who co-organised the event with Anthony Breen.