Spectrum summer2018

SPECTRUM Summer / 2018

Every Picture tells a Story Opening of CF Art Exhibition

www.cfireland.ie

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CONTENTS Latest News | 1-2 * CFI response to article on access to medications

Spotlight | 3 -9 The Travel Bug * Travelling with CF * A parent’s perspective

Hospital Hub |10

* Mater of Fact

Member Services| 11 * Noticeboard

Kids Corner | 12 Youth Reach | 13 Art Exhibition Gallery | 14-15

Research | 16 - 20

* Psuedomonas Aeruginosa * Exercise is medicine for CF * ECFS Report

CEO’s Message Welcome to the summer issue of Spectrum.

We hope you got a chance to enjoy the fantastic weather of recent weeks.

In this edition we respond to the opinion of one business school lecturer who has objected to the funding or Orkambi for people with CF.

Philip Watt Chief Executive

It is very disappointing to see such ill-judged and inequitable perspectives being put forward. As always CFI responds from a dignified and evidence based perspective that draws from our experience, research and recent reports. CFI has consistently adopted a responsible and balanced approach to drug reimbursement and we will continue to do so.

We work with many other rare disease groups who are facing similar challenges. We fully recognize the challenges faced by the high costs of these drugs for government but we have also made practical suggestions to Government as to how such high costs might be reduced and at least one of these suggestions has been adopted.

We further note and welcome the fact that the Swedish government has adopted a very similar approach to Ireland.

Sweden has approved Orkambi and future CFTR drugs in a pipeline deal that has striking similarities to Ireland.

It is disappointing that the value of such innovation [that commenced in Ireland] is not recognized or is not fully understood in some quarters and CFI will endeavor to do some more awareness raising on this issue in forthcoming weeks.

Fundraising |21 - 29 * Challenges and Events * Thank You

Philip Watt, CEO, CFI Sam Byrne & Nuala McAuley, Editors

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

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Spectrum / Summer 2018

LATEST NEWS: CFI Responds to Unfair and Inequitable Statements from Business School Lecturer

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n a recent article on RTÉ’s website, University Business School lecturer, Dr Aileen Murphy, claimed among other views, that ‘it is little consolation to those who need treatment now and to those whose access to other healthcare has been delayed owing to the opportunity costs of funding Orkambi’.

Philip Watt CEO on behalf of CFI has responded to this article on the RTÉ website, and his response is below: ‘Aileen Murphy raises some important issues in relation to the difficult decisions faced by Government, especially in relation to the reimbursement of expensive new medications such as the cystic fibrosis (CF) drug, Orkambi.

But there are also some important gaps in the information that she has provided and there are also some statements that Cystic Fibrosis Ireland would contend are both unfair and inequitable to people with CF and indeed unfair to all those with rare diseases in Ireland.

In relation to Orkambi one year after reimbursement, she contends the reviews ‘are mixed’ and that it is not a ‘miracle drug’. We would contend that from the information coming back to Cystic Fibrosis Ireland from both patients, and informally from clinicians and nurses, that the most common response to Orkambi is ‘positive’ and ‘very positive’. Yes, of course, a small minority will not gain from Orkambi, nor will stay on Orkambi for a variety of clinical reasons, but this is true of all drugs.

No one in Cystic Fibrosis Ireland ever stated that Orkambi was a ‘miracle’ drug. However, we do maintain that Orkambi is a game-changing drug, as it is the first drug to treat the underlying cause of CF in over half the CF population in Ireland. Previous drugs, important as they are, treated the symptoms.

Further, Aileen Murphy’s article does not make clear that the deal in Ireland with pharmaceutical company Vertex not only includes Orkambi, but also includes the extension of another drug, Kalydeco, and forthcoming Vertex drugs that are currently showing excellent results in advanced clinical trials and, in some cases, will likely prove even better than Orkambi.

She also ignores the fact than many countries in Europe, including the Netherlands, Germany, Italy, Austria and France, have all approved Orkambi and other countries such as the UK are looking at Ireland’s innovative CF ‘pipeline’ deal as a possible better way to secure access to these crucial drugs, even though Orkambi was turned down the first time around in England.

The main disagreement we have with Ms Murphy’s analysis is the statement that ‘it is little consolation to those who need treatment now and to those whose access to other healthcare has been delayed owing to the opportunity costs of funding Orkambi’ [It should be noted no evidence was provided to substantiate this very sweeping claim].

Apart from the fact that we have the highest incidence of CF worldwide – and we in Cystic Fibrosis Ireland make no apology for seeking the best services and medications for our patients – this is at best a very simplistic statement.

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For example, it completely ignores the current agreement between the Government and the pharmaceutical industry in Ireland (IPHA) 2016-2020 which projects savings of over â‚Ź600 million which would pay for Orkambi and many other orphan drugs.

Further, the Irish government has been rightly criticised in a series of reports, including by the ESRI, highlighting overspending or continued spending on low or no impact drugs over many years rather than focussing on new and cutting-edge drugs that are now becoming available. To be fair, this is fully recognised by the Minister for Health, Simon Harris.

Murphy is right to say that there are tough decisions ahead, but patient groups such as Cystic Fibrosis Ireland, the Medical Research Charities Group and the Irish Platform for Patient Organisations, Science & Industry, have been contributing to this discussion with a number of positive suggestions for many months, some of which have been adopted by Government.

Firstly, it was patient groups that proposed that Ireland join with a European grouping of countries (BENELUXA) to ensure that we got the best value for drugs when negotiating with large pharmaceutical companies. Ireland has recently joined with this grouping after flirting briefly with the idea of joining up with English-speaking countries which again patient groups advised from the start was a non-runner.

Secondly, most key stakeholders involved in drug reimbursement in respect of drugs for rare diseases contend that the present system is not ‘fit for purpose’ because, in part, it does not recognise the simple economic equation that if you are dealing with a small number of patients, and you have invested a lot of money into research and development for a new drug, it is inevitable that drugs for rare diseases are going to be much more expensive than drugs for more common conditions.

Thirdly, after much lobbying from patient groups the Government has agreed to set up a specialised rare disease drug therapy reimbursement committee within the National Centre for Pharmaco-Economics (NCPE), with the view to advising on drugs such as Orkambi in future. This is very positive.

We in Cystic Fibrosis Ireland make no apology for saying we have to look after the few as well as the many in our healthcare system, but this is in no way a zero-sum situation.

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Spectrum / Summer 2018

SPOTLIGHT: The Travel Bug Getting the chance to travel and visit new places is an opportunity that should not be passed up. It is important to take the time to get away from daily routines, whether it be a weekend get-away or an extended trip. A person with cystic fibrosis (CF) can travel, but they will have to take the extra precautions when planning their journey. It is important to talk to your CF team well in advance of booking a trip who can give you advice on whether you are healthy enough to travel and advise you about the practicalities of going on holiday and provide you with any health-related documentation which you may require.

It is wise to choose a destination that has a relatively good health care system, ideally with comprehensive CF care delivered via specialised centres. A full list of all of the available CF care centres worldwide can be found at the Cystic Fibrosis Worldwide website; https://www.cfww.org/ Spectrum spoke to a person with CF and a parent to get their experiences and tips on travel.

Travelling With Cystic Fibrosis Where The Sky’s Not The Limit!

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or those of you not familiar with my travel and Cystic Fibrosis blogs website, let me introduce myself. My name is Declan, 36 years of age diagnosed with Cystic Fibrosis at the late age of 17. I enjoy many hobbies but it is fair to say that travel is the pastime I am most passionate about. To be honest I don’t call it a hobby, it’s more of a lifestyle choice, and I dare say a calling, if that makes sense! Nowadays with budget flights, the internet and more opportunities, people can transport themselves to almost anywhere in the world with just a few clicks of a button. Money and ample time off work possibly the biggest obstacles getting in the way of an escape. It is easy to spot disabled passengers getting assistance when boarding an aeroplane but what about those illnesses which are harder to notice? What if you look perfectly healthy but inside are dealing with a litany of physical issues? What if something like not getting travel insurance can be the difference between that trip of a lifetime or staying at home?

Presently I can say that I have visited 86 countries around the world from Australia to Wales....haven’t quite made it to Z yet! No, I am not wealthy or getting paid to travel, I just prioritise trips abroad over expensive cars, designer labels and the latest ‘must-have’ technology. Since I was a little child I dreamed of visiting differing nations as I stared at the globe by my bedside. What’s life like in Panama City? What types of vehicles do they drive in Bolivia and how hot is it really in the Australian Outback? As a young child I never thought about how, and if, I would get there, I just took for granted that I would get there someday. As a teenager those dreams still shined brightly until that day back in June 1999 when I was diagnosed with Cystic Fibrosis shortly after my 17th birthday. To be honest I took the diagnosis in my stride and just wanted to move on and take the tablets which could help me feel better as my persistent cough was driving me crazy! Not for one moment did I think it would affect my life in an overly negative way.

Fast forward a few years later, I am working full-time with those dreams of travelling still floating around my head.

I took short city breaks away in Europe alongside the traditional “lad’s” summer holidays in Greece and Cyprus where alcohol, late nights and no sleep were standard. Never at those times did Cystic Fibrosis stop me, the only inconvenience being the tablets I had to carry in my luggage or take with my meals! www.cfireland.ie

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Never for a second was I told travel was something I would not be able to do; besides I don’t like being told what I can or can’t do anyway so in my mid-twenties it was full steam ahead planning my year away in Australia, with some round the world stops thrown in for good measure. To be honest I booked the flights before consulting my medical team in St. Vincent’s Hospital, such was my lack of concern about the illness.

I requested a supply of my tablets, as much as the pharmacist could possibly allow, and it would be then a game of Tetris packing them into a sports bag which was to become my hand luggage. This was important as the medication would be with me at all times on planes, trains and buses instead of being hidden away in an out of sight compartment. A few letters from the hospital and pharmacist explaining what I was carrying and I was off! The medical team didn’t seem too concerned either as I was keeping well and the toughest part was saying goodbye to family and friends!

Looking back on the year away I was ultimately very fortunate. I had no serious health problems, besides a chest infection in New Zealand, but that was cleared up with oral antibiotics and rest. The biggest issue with my medication was an over-enthusiastic border security guard at Sydney airport who felt like she had just apprehended an international drug smuggler, but it was all cleared up when I produced my relevant documentation. In the end I got to visit the USA, Fiji, New Zealand by camper van for 6 weeks, and each state in Australia by car, sea and plane.

I worked as a deck hand on a pearl boat for a month and then in an investment bank in Brisbane until my return home via Thailand, Laos, Cambodia, Vietnam and Hong Kong. It truly was the trip of a lifetime but soon upon my return I was planning the second trip of a lifetime! By now I was entering my late twenties, a time when many may be planning on moving up the career ladder, getting the mortgage or even planning a family. Some of these ‘adult’ things did cross my mind but the travel bug was well and truly imbedded in my psyche by then. When I met my now wife, who had the same travel dreams as myself, it was always on the cards to take flight again. As the grey hairs started to appear then so did more symptoms of the illness. My lung function slowly declining, frequent issues with my sinuses and generally feeling a little less energetic than years previously. Still this didn’t deter me from reaching my goal, on the contrary, if anything it motivated me to eat healthier and push myself further with regular exercise to keep fit enough for a travel schedule. Who knows how long we have on this earth? You can’t take for granted that your health will allow you do all those things you dream of. Is reaching retirement age a given? Even if I was a fit, healthy, pension paying member of society. In today’s world most of us will be working until we are 80 before we might be able to retire anyway!

“I am very fortunate to have my wife who looks out for me. As a PWCF, you do become used to your body, but it helps when you have somebody looking out for you.”

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Spectrum / Summer 2018

With advancing years and a condition like Cystic Fibrosis comes the obvious difficulties but it is also a period of hope. In the time since my first trip abroad I have been benefitting from ivacaftor treatment which has been a game changer. My lung function improved almost overnight along with many other symptoms of the illness. By the time I was planning my next round the world trip in 2014 my biggest worry was getting an ample supply of the medication, as it costs about 18,000 euros per month covered by the tax payer. In the end my medical team and pharmacist arrived at a solution and I was free to leave Ireland again at the age of 32. I still felt the same as I did when I left home at 24 but I respected the fact that I wouldn’t be able to be as carefree as years previously. You learn important lessons when travelling with Cystic Fibrosis. Firstly, you have to stop looking at others and concentrate on yourself. If you meet fellow young backpackers who stay up until 6am drinking you better be sure you rest up the next day and don’t burn out by planning a hike up a mountain a few hours later, trust me you will regret it!

Simple things like booking a private room in a hostel or hotel, even if it is a few dollars more, will help with infection control, getting an undisturbed nights’ sleep and privacy to take medications and perform breathing exercises.

Take your favoured snacks with you at all times and salt tablets if you are in a hot country. (I must admit my wife and her handbag looks after this for me).

Purchase a box of surgical masks and hand sanitiser, perfect for flying or long trips via bus or train which I found particularly useful on the dusty streets of Phnom Penh Cambodia and New Delhi, India. Let’s face it not everyone is as hygiene conscious as us in the CF community so eliminating risk is your priority.

Sleepless nights caught up quicker on me much more and skipping meals was a no-no this time around as I felt it would have a negative impact on my body more than before. Quality over quantity is important when replenishing your body, try not to stock up on grub just for the sake of it.

Seek out nourishing food which your body will thank you for. The cheap fast food is fine occasionally but not all of the time, spend a little extra time and money seeking out healthier dining options. In the past I could survive on two meals a day and still keep going but now that just won’t do. When I did skip meals not only did my body lag but also my brain. I would walk on autopilot thinking solely of food, when I would arrive at a restaurant the meal would disappear in a matter of seconds, such was my deep hunger and voracious appetite.

Despite these issues I can look back now at another successful trip, Boston, New York, Mexico, Cuba, Central America, South America and Asia after another year spent living in Australia. This time I was able to visit a CF unit in Perth every three months for blood tests and lung function tests to enable me to continue receiving more ivacaftor, so do some research before leaving home to find a centre which can help. This was only a slight inconvenience with everything working out as family members from Ireland took a supply with them when visiting. I loved life in Australia, so much so that I wished to stay permanently. The first time I lived there I tried to obtain a permanent visa but I quickly realised I didn’t suit the skills requirement needed. This time around there was an opportunity to stay but for the first time Cystic Fibrosis provided a major stumbling block. Put simply I was told by an immigration agent that due to the condition I would be seen as a transplant risk to the Australian tax payer which could mean costs in excess of a quarter of a million dollars. I could get around it by paying over $10,000 a year in insurance costs but I couldn’t justify paying that sort of money. In the end I enjoyed my time there but it was time to move on, I just didn’t know where to next!!

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Fast forward to today, I am currently living in Spain as the climate in Ireland both meteorological and economic does not suit my needs. I have just returned from a quick break in Iceland and in the coming years have more travel plans. Through my website and social media groups I regularly get asked many questions about how I manage with the condition when travelling, how do I get past the minefield that can be travel insurance and how do I transport my medications? All very valid questions, which I try to answer personally, but honestly, I don’t even worry too much about these issues. I don’t know if it is because I am naturally laid back or is it that if I can handle living with CF I can certainly handle a trip abroad! After all it’s only sitting in a seat for the maximum of 17 hours with people serving you food, drink and entertainment a push of a button away! After that it is your time, no boss telling you what to do and nowhere in particular to be, unless you are sticking to a schedule. I am also in the very fortunate position to have my wife who looks out for me when we are together and can spot the early warning signs of sickness. As a Cystic Fibrosis patient, you do become used to your body, but it helps when you have somebody looking out for you.

Taking in the sights; to date, I have visited 86 countries.

Ultimately, I don’t take for granted anymore the fact I can travel. I have been touched and humbled by the many personal stories I have read through my interactions with other patients and their families. The fact that some patients require portable oxygen and the logistical issues involved with its transportation. Issues with perishable medications and post-transplant obstacles. It is these stories which can put fear in you about the future but for me it drives me on even further. It drives me to keep planning and keep dreaming about where I could be next year. I could be on an African Safari or Antarctic adventure!

Planning is vital when it comes to travelling with a serious medical condition like Cystic Fibrosis. Liaise with your medical team, pharmacist and family but ultimately it is up to you, the individual, to make things happen.

Finally, one piece of advice for those of you who aren’t up for taking trips abroad, “Sometimes it’s ok if the only thing you do today is breathe”, we are all fighting our own battles and have our own goals. Happy Travels to you all, Let the World take your breath away.

You can check out my travel blogs and information website at www.continentchasers.com Social Media Outlets, www.facebook.com/ContinentChasers/ www.twitter.com/ContinentChaser www.instagram.com/continentchasers/ Cystic Fibrosis Travel Group www.facebook.com/groups/CysticFibrosisTravel/

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Spectrum / Summer 2018

Travelling as a family with a child with CF My name is Claire Merrigan, I live in Wexford with my husband Stephen and our two children Holly, aged 9 and Mason aged 6. Mason has cystic fibrosis.

In June 2018, we travelled to Lanzarote for a family holiday. It was our first time in Lanzarote and we stayed in a 5 Star all-inclusive family hotel. Here are just some tips and handy hints for travelling with a child with CF. Travelling always worries me, but I didn’t want to let my fears prevent us from having family holidays. The key is to prepare, prepare, prepare!

Mason has a feeding tube and has overnight feeds every night so this in itself means a lot of extra weight when travelling. Luckily, Nutricia, the company who supply Mason’s milk, do a fantastic service by which they transport all his feed, containers, giving sets and even spare buttons (his feeding tube).They can also transport the feeding machine, but we needed to transport that ourselves as Mason needed a feed the night before we flew out.

All of Mason’s feed and equipment was safely in the hotel two weeks before we arrived, which was a huge relief and weight off my mind.

As part of the service, the delivery company collect everything from you and transport it all to your hotel.

Before travelling, I contacted Ryanair with a list of all Mason’s medications and machines, his nebs and feed machine.

We also had to give dimensions of the suitcase and weight in which these would be in as we had to take it on board.

Ryanair then sent me out a letter with all the information I provided them with and which stated we could bring this medical bag on board.

In addition to the letter from the airline, we also had letters from our hospital to state that Mason had cystic fibrosis and listed the medications he required and what the purpose of the machine was.

Two weeks before travelling, we always send up a swab to our hospital, which is Tallaght, in case we need to bring a certain antibiotic. We would always bring a dry broad spectrum antibiotic with us on holiday just in case.

For the first time, on this trip, I contacted Ryanair’s Special Needs Airport Assistant. This service provides you with a member of staff to assist you with check-in and security.

I highly recommend the service and will be using it again for future travel with Mason.

Before travelling, an important thing to do is to ensure you have your up to date EU travel medical cards and extra medical insurance.

Coming from Wexford, we drive to the airport as we find it easier with the kids and luggage, especially depending on the flight time it can be hard to rely on public transport. It also reduces chances of cross infection.

We arrived at the airport three hours before our flight was due to depart and went straight to special needs assistance.

From there we were brought through check-in and security. At security, be prepared for them to test some of the meds that are fluids over 100ml, they also swabbed our bags.

Handy hint; Try to pack medicines together to help speed up the process.

Once this was done our assistant left us, by our choice, so we could get something to eat as we had travelled from Wexford.

This was our third family holiday. On the previous two occasions, boarding has always caused us trouble and I had some anxiety as we made our way to the boarding gate. www.cfireland.ie

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When we arrived, an air stewardess approached us straight away to say we couldn’t bring Mason’s medical bag on board that is was too big. I explained that Mason had CF and that the bag contained his medicines and feeding machine. I showed her the letter from Ryanair as well as the letter from the hospital, but she said the bag was too big to bring on the flight.

With my anxiety levels already elevated, at this stage I began to panic. I was stressing out, but tried to remain calm for the children. While I tried my best, unfortunately Holly heard the air stewardess speaking to her manager about the bag while pointing at us and this caused her to get nervous. Another member of staff approached us again stating we couldn’t board the flight with Mason’s medical bag. However, I explained the situation again and produced the letters.

Finally, after speaking to another member of staff we were allowed to board with the bag. It can be frustrating to go through all the procedures, but still be questioned. However, I cannot fault the staff as they were not fully aware of the process and once they received clarification they were very helpful. On board, the flight attendant found us space in the overhead compartments and showed us how best to store the bag.

Ready for take off!

All aboard, we were ready for take off and I could finally start to relax.

Both Mason and Holly did so well on the 4 hour flight and enjoyed the flight, except for some pain in their ears coming to landing. I will say, on shorter flights we have been on such as Paris, Mason has worn his protective mask, but we felt that this flight was too long and we couldn’t expect him to wear it for the duration.

We got a private transfer to our hotel by coach which gave us a fantastic opportunity to see parts of the Island on our way.

Our Hotel was fabulous and so accommodating to Mason’s needs. His milk was ready for us and whenever we needed extra water for making up meds they were only too happy to supply.

We had our own fridge which is also a must. So when booking your hotel, enquire if this could be arranged. Most hotels can accommodate if you request in advance.

The dietician prescribed Mason a salt tablet to take while on holidays. I think it’s important to check if that is needed.

Mason and Holly loved the pools and entertainment and we continued Mason’s CF routine with a few little changes.

We spent most of the day at the different pools Mason doesn’t do too well in extreme heat so we went at the right time of year and when it got too hot he would get shade from an umbrella.

It was such a relaxing holiday and it was so good to recharge the batteries as a family unit. Such a good holiday in fact, we are planning to go on holiday again next year.

Making memories in the Sun!

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Spectrum / Summer 2018

Yes, travelling with someone with CF can be challenging, but once you plan in advance and have everything prepared it really should run smoothly.

The benefits and adventures make it all worth it.

Make sure to bring plenty of socket / plug adapters for all the equipment and most of all just remember to relax and enjoy.

You will make sure precious memories that’s the most important thing.

Claire Holiday Greetings

from the Merrig

ans!

Meet your Travel Guides!

n a l c e

D

Clair

e

First holiday abroad: Tenerife, Canary Islands 1995 with parents

First holiday abroad: For me, Tenerife. For Mason, Disneyland!

First time on a plane: 1995 aged 13

First time on a plane: I was 21, but Mason was just 3!

Favourite holiday: 2014 backpacking around South America, Rio de Janeiro, Machu Picchu being the main highlights

Favourite holiday: Disneyland

Sun or Snow: Sun Dream destination At present an African safari so Kenya or Tanzania with Madagascar a close second.

Favourite thing about travel: Freedom and experiencing differing foods, people and beliefs.

Worst part about travel: Long journeys particularly by bus.

Top tips for other PWCF: Don’t let red tape stop you from travelling abroad.

If you are feeling up to it do it.

Preparation is key and finally just enjoy every minute.

www.cfireland.ie

Sun or Snow: Sun all the way!

Dream destination New York or Lake Garda, Italy Favourite thing about travel: Experiencing different cultures.

Worst part about travel: Getting through the airport!

Top tip for other PWCF / parents of PWCF Prepare!

Use special assitance, Get your letters organised for meds and machines, Use nutricia service if you are tube feeding, Make sure your EU Medical Card and your travel insurance is up to date!

Pack liquid meds together.

Salt tablets are must if travelling to a hot destination

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HOSPITAL HUB Mater of Fact Sun safe

it has felt this year like winter would never leave it is tempting to bask in our lovely Irish sunrays While and get our fair share of Vitamin D. And whilst sunshine is great for our wellbeing its essential for you to wear a high factor sun cream every day of the year even on cloudy days.

Some medicines that you are on including immunosupressants may increase your risk of developing skin cancers. Other medicines including some antibiotics and antifungals can leave you more prone to sunburn.

The higher the SPF (sun protection factor) the better although Factor 50 containing both UVA an UVB filters is recommended as the safest option for everyone. Wide brim hats and light clothing that covers skin are advised! Parasols are ideal when outside for longer periods and top up sunscreen regularly.

Adequate hydration is very important. In Cystic Fibrosis more salt is lost therefore it is important to replace it and drink adequate amounts of water. 2 litres is recommended (unless you are on a fluid restriction). For exercising outdoors or trip to hot countries speak to the transplant team about salt supplements.

Travel Checklist: Pack double of your medications, if you need a new high-tech prescription, contact the clinic in plenty of time.

It is also a good idea to attend for review before going away, especially for a long trip, this will stop a lot of worry as well as making sure you are prepared. A good tip to pack your medicines in separate places in case of a lost bag etc.

If you require vaccinations, check with the Tropical Medicine Bureau, www.tmb.ie and then confirm if they are suitable with the staff at the transplant clinic.

Make sure you have an up-to-date travel letter to make sure that there are no issues at customs!

Bring your diary with contact details for the Transplant Clinic / ward, and someone at home.

Time zones: be aware of the change of time if abroad. Your immunosuppression always needs to be 12 hours apart, no matter where you are. Do not take too many doses or miss doses to change to local time, discuss how to safely change at clinic with the medical or nursing staff.

Talk to Susie or one of the transplant team about salt supplementation and hydration if travelling to a hot country.

Any questions just ask and of course have a fantastic trip!

Lung Transplantation Masterclass We are planning to run our first Cystic Fibrosis Masterclass in September 2018. The finalised date will be displayed in the outpatient clinic.

The aim is to bring PWCF post lung transplant together to share experiences and use it as a forum to have discussions and answer questions. There will be talks given from several members of the lung transplant team including our dietican, pharmacist, physiotherapist, social worker psychologist. If you have any ideas or suggestions on topics you would like to hear discussed please let us know!

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Spectrum / Summer 2018

MEMBER SERVICES Noticeboard Did you know?

It may be possible to get the cost of high factor SPF re-imbursed by the HSE if you have a letter from a consultant stating why you need it.

Exercise Grant Round 2 Opens 10th September Application forms available 20th August

This may be of particular interest to people on immunosuppresive medications. https://www.hse.ie/eng/services/publications/ clinical-strategy-and-programmes/mmpreimbursement-review-sunscreen.pdf

Welcome Brendán

Warmth and Wellbeing

My name is Brendán O Regan, I’m from the greatest part of Ireland! Cork, and even better West Cork in beautiful Clonakilty.

I’m 30 years young and have been living in Dublin for a year and a half. I come from a family of 9 children so I’m really enjoying the homely atmosphere here in Cystic Fibrosis Ireland. I will be working as a fundraising executive helping out in all manners of fundraising and ensuring we make the greatest amount of money possible.

If you live with or are a PWCF aged under 12 years

www.cfireland.ie

or over 55 years and live in either Dublin 8,10, 12, 22 or 24 you may be entitled to apply for this pilot scheme. https://www.seai.ie/grants/home-grants/ warmth-and-wellbeing/

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KIDS CORNER W

ashing your hands regularly is very important, especially for people with CF. Washing your hands helps to get rid of germs that cause colds, flus and tummy bugs.

Make sure to wash your hands: * Before you eat

*After going to the bathroom

* If you have been playing outside

* If you have been around someone who is sick

* After blowing your nose

* If you have touched any animals

* After you have been in the garden

* If you have touched a bin

* If you cut or scratch your hand

* Before taking your medication

Below are the steps for washing your hands. Can you put them in order from 1 to 6?

Rub hands to lather

Switch off Tap

Dry hands

Wet Hands with Water

Use Soap

Rinse off soap

Can you find your way through the maze to the tap?

Watch out for the bugs!

WORDSEARCH SOLUTION Spring 2018

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Spectrum / Summer 2018

YOUTH REACH A

ttending hospital is a part of life for people with cystic fibrosis. With clinics, appointments and in-patient stays most people with CF will develop relationships with the hospital staff on the CF Wards.

When a patient is aged 16-18, they usually move from paediatric care to adult healthcare services. This process is known as transition. It is a gradual process of introducing you to the adult healthcare services and supplying you with information so you feel comfortable in making the move.

Transition can be a difficult time, so we have put together some information to help you make the move easier:

WORD LADDER CF is a genetic condition that primarily affects the lungs.

Changing just one letter at a time can you make the connection from lunggene to lung?

GENE Left, past A skeleton piece 007 Curve Heal, repair

When will my transition start?

This is a decision that will be made with your parents and your CF team.

There is no set time for the move to happen. Usually patients transfer to adult healthcare services when they are between 16 and 18 years old.

What if I don’t feel ready to move?

It is important to remember that transition will not take place right away. The process will be managed by your CF team and the hospitals will liaise with you and your parents to ensure you are comfortable in making the move and have all the information you need.

Will my treatment / medications change?

Your treatment regime will not change because of your move. If there are any changes to your treatment, the CF team will discuss these with you.

What should I do before the transition?

Talk to your parents and your CF team. Ask any questions that you are unsure of. Run through a checklist to make sure you have all the information you need about CF, your treatment, the move etc. For more information on transition visit www.steppingup.ie or talk to your CF team.

www.cfireland.ie

Skin of fruit Call on a phone Step on a ladder

LUNG

CROSSWORD SOLUTION Spring 2018

Can my parents still attend my appointments / clinics?

This is an individual choice. It may be useful to have your parents attend your appointments with you at first while you adjust to the new surroundings and staff. Transitioning to adult CF units allows you to the opportunity to manage your own care and become more independent. Your team will discuss options and work with what best suits you.

Look after

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CF Art Exhibition

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Spectrum / Summer 2018

CB1 Gallery, Limerick

www.cfireland.ie

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RESEARCH Psuedomonas Aeruginosa and CF

Pseudomonas Aeruginosa (PA) is an important and opportunistic bacterial infection in people with cystic fibrosis (CF). It becomes established in the majority of CF patients by their late teens. It exists in two forms, a non-mucoid form and a mucoid form that, once established, is resistant to eradication.

The formation of mucoid PA biofilms appears to be encouraged by the thickened mucus in CF airways. Mucus limits the movement of bacteria and the resulting high bacterial densities are detected by the bacteria’s quorum sense mechanisms (these are the mechanisms by which bacteria regulate gene expression in accordance with population density through the use of signal molecules) which causes them to change to a biofilm form.

The hypoxic environment of mucus plugs also favours the growth of PA and switching to biofilm formation. Once the biofilm is formed, PA becomes much harder to remove and is associated with higher mortality rates. In a recent article (Fair, 2014), PA was listed in the top ten most resistant and threatening bacteria strains. In addition to PA’s ability to form a biofilm which acts as a direct line of defence from antibiotics, it also has a range of other defence mechanisms.

One technique is its ability to kill human immune cells by producing its own toxins. It also produces molecules called B-lactamases that function to inactivate many antibiotic drugs.

Although it may be difficult to fully eradicate this persistent bacteria, there have been many medical advancements to treat this harsh infection. Some of the current treatments and therapies in clinics help to suppress the infection, open the airways and relieve inflammation.

These therapies include the use of inhaled antibiotics, nutritional supplements and proper exercise, all of which are incorporated into daily routines. While it may seem cumbersome, these therapies have greatly enhanced and extended the lives of many people with CF. New and exciting research to eradicate PA infections is ongoing and includes work to increase the mucociliary action in the airways and work on developing antibiotics which counteract the formation of biofilms in PA.

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Spectrum / Summer 2018

Exercise is Medicine for CF “If exercise was a pill, it would be prescribed to EVERY patient!”

Do YOU know the beneficial effects exercise can have on the life of a person with CF? Exercise training and being physically active are well-accepted tools for use in CF care, however, the optimal exercise training program for people with cystic fibrosis (PWCF) has yet to be defined.

Evidence suggests that regular exercise training improves cardiovascular fitness (strength of your heart and lungs), which is directly associated with an increased lifespan for PWCF, meaning the higher your cardiovascular fitness, the longer your estimated survival rate will be. Not only does regular exercise improve your cardiovascular health, it also has the potential to lower your risk of developing certain cancers, cardiovascular diseases, circulation issues, diabetes and hypertension, while also slowing the annual rate of decline in lung function and serving as an important determinant in health-related quality of life.

It has been shown that both children and adults with CF have the potential to increase their cardiovascular fitness with exercise training and physical activity, regardless of disease severity. Regular exercise and physical activity can include anything from aerobic activities such as a walk in your local park or jogging to the bus stop, to strength training activities like bicep curls using tins of beans or simply body weight squats.

Cystic Fibrosis Ireland and the Mater Foundation have recently collaborated to co-fund PhD candidate Nicola Hurley from the MedEx Research Team at Dublin City University, who will carry out innovative and exciting research into the effects of exercise in the management of cystic fibrosis patients undergoing lung transplantation.

MedEx Wellness is a novel chronic illness rehabilitation programme located at Dublin City University, offering community and home-based exercise programmes for a host of chronic diseases. Since its establishment in 2006, MedEx has grown rapidly to become one of the largest centres of its kind in Europe. The programme has gained the confidence of local GPs and hospital physicians and has a strong and steady referral base. MedEx, with its unique location, offers a multi-disciplinary platform for researchers and practitioners to collaborate and study MedEx’s impact and implementation.

Our current research in MedEx, lead by Prof. Niall Moyna, Dr. Noel McCaffrey, Dr. Bróna Furlong, PhD candidate Nicola Hurley and Prof. Karen Redmond, Thoracic and Lung Transplant Surgeon at the Mater Misericordiae Hospital, aims to develop an easily accessible, state of the art, CF specific exercise programme that can be carried out in the community and/or from the comfort of your own home.

We are striving to put PWCF and their families at the heart of this new and exciting research and are determined to design the MedEx-CF programme around the existing wants and needs of the CF population of Ireland. We want to answer the questions that you are asking, in order to create a high-quality, evidence-based and CF specific exercise programme that will cater to each individual’s needs and concerns.

If you would like more information about this research or to get involved, please contact; Nicola Hurley, nicola.hurley5@mail.dcu.ie www.cfireland.ie

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ECFS Report

T

he largest European gathering of cystic fibrosis (CF) experts ended on June 9, 2018 in Belgrade, Serbia. It brought to a close four days of workshops, speeches and poster presentations which attracted 1,832 participants from 56 countries. The conference included 30 symposia, six ePoster sessions and dozens of specialised meetings on a wide range of CF-related topics including fertility, nutrition, mental health, exercise and ageing.

The conference itself took place in the ageing Sava Centar, a communist-era building constructed by Yugoslavia’s long-time dictator, Josip Broz Tito, in 1977. Its inadequate air-conditioning and deteriorating façade are symbolic of the challenges facing Serbs today - particularly those with rare conditions such as CF.

Focus on Disparities in CF Care Across Europe The intention in holding the conference for the first time in a South Eastern European country was to demonstrate the intent of the ECFS to share its knowledge and help the development of CF care in an underprivileged part of Europe (where help is needed the most).

It was felt that, in contrast to the well-articulated situation in Western Europe, Serbia and other Eastern European countries lack a basic framework of CF care and standards. As noted by Dragan Djurovic, the President of CF Serbia, the continuity of CF services in Serbia was interrupted by unfortunate historical events in the 90s.

As a result, Serbia has no formal CF centre, no newborn screening programme and no transplant programme. CF patients in Serbia have been left without elementary medications and as a consequence have substantially lower BMIs, FEV1s and a very high colonisation rate with Pseudomonas Aeruginosa (PA) compared with other European countries.

This is a situation which pertains across Eastern Europe with its lack of access to medical know-how and expertise, its marked absence of specialised CF centres, as defined by the European consensus, and its associated lack of multidisciplinary CF care teams. There are few transplantation programmes and patients are referred to other countries for transplantation (mostly to Vienna, Austria).

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Spectrum / Summer 2018

Patients also struggle to get even the most basic treatments such as nebulisers, physiotherapy and nutritional and psychological counselling. In Ukraine, for example, the president of the national CF association, Larysa Voloshyna, says that anti-corruption legislation, introduced in January 2018, has effectively blocked CF patients from receiving medicines at the regional level and the state budget covers only three CF medicines: Pulmozyme (dornase alfa), Creon (pancrelipase) and colomycin, an antibiotic. The result? A child born with CF in Ukraine today will probably die before the age of 18 as compared with their counterpart in Germany who is likely to live to 40 or 50.

This is a situation which incoming ECFS President Isabelle Fajac wants to address.

In her closing plenary address, she stated that it is of the utmost importance that ECFS members overcome their national boundaries and specific ways of thinking to work across borders and reach a high, standardised level of CF care across Europe.

She wants to bring new CF therapies and CFTR modulator drugs to all ECFS countries. This prioritisation of access to modulator drugs is particularly timely given the range of exciting modulator drugs in development which various companies presented throughout the conference:

ECFS President Isabelle Fajac speaking at the 2018 ECFS Conference in Serbia

Eloxx Pharmaceuticals presented preclinical data showing the potential of ELX-02 to reverse the effects of CFTR nonsense mutations (mutations where little or no CFTR protein is produced).

Proteostasis Therapeutics unveiled news of PTI-801, a potential modulator in Phase I clinical trials, which its CEO says may double the effects of Orkambi if used in combination.

Vertex Pharmaceuticals presented data from three separate clinical trials in which researchers evaluated the safety and effectiveness of VX-440, VX-152 and VX-659 in combination with tezacaftor (VX-661) and Kalydeco (ivacaftor) in adult CF patients.

ECFS Consensus and Standards of Care In achieving her vision of continuing to standardise CF care across Europe, Fajac will be building upon the landmark standardisation work which began with the 2005 publication of the CF Standards of Care (rewritten in 2014) which set out what high quality CF care is and how it can be delivered throughout Europe.

This has been challenging work. The lesson learned after the publication of the 2005 Standards was that although awareness of the Standards and their dissemination in Europe was good, their implementation was quite dishomogenous. This has been the case even in countries with dedicated CF centres and adequate resources where there exists significant differences of opinion which make it difficult to apply universally suggested standards.

www.cfireland.ie

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One example of this difference of opinion, visible at the conference, was the vigorous debate from CF experts (pictured below) around which antibiotics were to be used, in what combination and for how long with infections of differing bacterial species. It was noted that we do not fully know how the bacteria PA interacts with other bacterial species. There is also no universally agreed standard eradication protocol for PA and differences of opinion of the primary site of PA colonisation.

The message which I took from the conference overall was that while there are significant differences of opinion over topics ranging from infections and antibiotics to pregnancy and CF, we still must work together to realise many new innovations in CF care.

Clinical evidence will ultimately lead to consensus and the implementation of best practice clinical standards through collaboration on projects such as the European Cystic Fibrosis Society Patient Registry (ECFSPR). Its mission is to provide a comprehensive view of CF care in Europe by measuring and comparing aspects of CF and its treatment across participating countries.

As Fajac noted, the Registry has now grown to 44,719 patients from 31 countries - with new participation from non-EU member states such as Albania, Armenia, Bosnia and Herzegovina and Georgia. The ECFSPR will be used to improve the health and wellbeing of people with CF: anonymised data will be used to better understand the condition, encourage new standards of CF care, provide data for epidemiological research (research concerning the incidence and prevalence of the condition in large populations) and post-marketing studies (which will facilitate more straightforward access to life changing CF therapies and medicines) and European public health-planning.

In addition, Fajac also noted that the ECFS Clinical Trials Network (ECFS-CTN), critical to the development of life changing CF drugs and therapies, will see a new wave of expansion - the third since the network was launched in 2008 - from 2018 to 2020. The network presently provides access to 43 large CF centres in 15 European countries.

As well as noting the many exciting developments which lay ahead the conference also recognised the considerable contributions which have already been made by individuals to the standardisation of CF care including the outstanding work of Dr Su Madge.

2018 ECFS Award Winner Dr Su Madge The ECFS bestowed its 2018 ECFS Award on Su Madge, PhD, a British CF specialist who began her 30-year career at London’s Great Ormond Street Hospital and has been with the Royal Brompton since 2002.

2018 ECFS Award Winner, Dr. Su Madge

She launched the International Nurse Specialist Group in 1998 (now the ECFS Nursing SIG) and has worked tirelessly for years to raise the profile of nursing and allied health professionals in the CF community. She in the only non-medical doctor/ scientist to have served on the ECFS board, having been elected to two four years terms in 2006 and 2010.

The next and 42nd ECFS conference has been scheduled for 5-8th of June, 2019 in Liverpool.

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FUNDRAISING: Challenges and Events For further details on any of our fundraising events, visit our website www.cfireland.ie, contact the CFI Fundraising Team on (01) 4962433 or email fundraising@cfireland.ie

September 16th: Head2Head Walk The annual Head2Head Walk from Howth Head to Bray Head takes place on Sunday 16th September. This is always a fantastic event, organised by the Eastern Branch and one not to be missed. Over ₏48,000 was raised from last year’s event with 537 people walking on the day.

The walk will begin at Howth Dart station at 9.00am and will finish in Bray. There will be plenty of food and water along the route with organised food stops at the half way point at Sandymount Strand and at the finish in Bray.

Participants have the option of completing the full walk from Howth Head to Bray Head or completing half the walk, either the first half from Howth Head to Sandymount Strand or Sandymount Strand to Bray Head.

Registration is now open on www.cfireland.ie. Once you register, Cystic Fibrosis Ireland will send you your fundraising pack including your Head2Head T-Shirt. Medals are also provided to all participants on the day.

We encourage everyone to play their part by taking a sponsorship card and raising whatever you can to continue to help support people with Cystic Fibrosis. For further information please contact the fundraising team on 01 496 2433 or email fundraising@cfireland.ie.

www.cfireland.ie

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September 14th - 20th: Paris2Nice Cycle - Last Call Registration will soon be closing for the Paris2Nice cycle 2018 so if you are interested in taking part please get in touch with our fundraising team as soon as possible.

Cyclists will fly to Paris on Friday 14th September and will begin cycling on Saturday 15th September. The cycle will pass through some areas with amazing scenery as it makes its way from Paris along quite country roads towards Nice.

The cycle will finish on the Promenade Des Anglais on Thursday 20th September where you will be greeted by the welcoming team and a celebration dinner will follow that night.

To register or find out more please contact our fundraising team on 01 496 2433 or email fundraising@cfireland. ie Details can also be found on www.paris2nice.com.

September 28th - October 7th: Paddy Kierans' Memorial Walk 'Flavours of Romania' Bernie Murphy, a member of the CFI International Walk Committee, recently went on a recce trip to Romania, the chosen destination for this year’s Paddy Kierans’ Memorial Walk. Here is a short summary of the recce and why she thinks this year’s walk is going to be one of the best yet: Romania will be a walk with a difference. Bucharest is a beautiful city and the days of been known as the “Little Paris of the East” may be long gone but I found Bucharest merging its history with a modern identity. We will have guided walks around this beautiful city. The architecture is a fascinating mix and the old town is charming.

Our hotel here is Hotel Ambassador, it is central and close to shops and Restaurants and a 20 min walk to the old town.

Poiana Brasov is surrounded by mountains and the most beautiful scenery. Quaint little villages, fortified churches, peasant fortresses and the famous Bran Castle. Oh and well deserved wine tasting…

Our hotel here is Hotel Escalade which has a spa centre and swimming pool and much more. All restaurants have a great variety of dishes and something to suit all palates. I believe weather will be 20 degrees at the time of our walk.

Romanians are very welcoming and our guide will be Mihai, pronounced Mike, he is a wealth of knowledge.

Our walks will be fun, we will have three days only where our walks will be a little challenging but we will always have our bus / car close by.

I returned from Romania feeling very satisfied and confident about our walk there in September.

The Paddy Kierans’ Memorial Walk take place from Sunday September 28th to Thursday Oct 7th. Places for this year’s walk have now been filled, but do keep an eye on our website and social media channels for updates and the announcement of the venue for the 2019 walk.

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Spectrum / Summer 2018

October 29th: SSE Airtricity Dublin City Marathon All the places for this year’s SSE Airtricity Dublin Marathon have now been taken and registration is sold out. However if you are already registered, and you haven’t chosen a charity to fundraise for yet, we would ask you to consider fundraising for Cystic Fibrosis Ireland and help support people with Cystic Fibrosis in Ireland. Or maybe you know someone who taking part and they have not chosen a charity to support yet! Perhaps you can encourage them to run for Cystic Fibrosis Ireland!

Contact Rachel on 01 496 2433 / rbyrne@cfireland.ie for more information.

November 4th: TCS New York City Marathon There are still a limited number of guaranteed places available for the 2018 TCS New York City Marathon tour which takes place on Sunday 4th November. A booking deposit of €675 is required immediately in order to secure a place and final tour balances are due by Monday 9th July.

The tour package includes: •

Guaranteed Race Entry

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Direct return flights from Dublin or Shannon to New York

•

5 or 4 nights’ accommodation

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Airport transfers in New York

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Private Coach from the hotel to the race start on Staten Island

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A celebration dinner with live music on Monday 5th November

•

Services of a Sportstravel guide

If you are interested in taking part please get in touch with us as soon as possible on 01 496 2433 or email fundraising@cfireland.ie

www.cfireland.ie

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

Here is a short summary of some of the remarkable efforts of our volunteers: 65 Roses Day – National Fundraising Day for Cystic Fibrosis Ireland Cystic Fibrosis Ireland would like to say a huge thank you to all our supporters who supported our national fundraising day - 65 Roses Day on Friday 13th April. So far, well over ₏100,000 has been raised and we would encourage anyone who still has money collected to please lodge outstanding funds as soon as possible. We are really grateful to all our volunteers who sold roses across the country in shopping centres, schools and workplaces. Also, we would like to give a special mention to all our CF Branches around the country who get behind 65 Roses Day every year and provide much needed support. 65 Roses Day continues to grow each year and this is made possible with the help of all of our volunteers and branches. We look forward to making 65 Roses Day 2019 even bigger and better again.

In addition to raising much needed funds, 65 Roses Day drives awareness of Cystic Fibrosis nationwide with lots of coverage this year across TV, Radio and in Newspapers. We would like to thank our ambassadors, Keelin Shanley, Bryan Dobson, Rosanna Davison, Joe Brolly, Blathnaid Treacy and Chef Adrian for lending their support to the campaign. We would also like to give a special mention to An Taoiseach, Leo Varadkar for also giving his time to promote 65 Roses Day. Joining the Ambassadors we also had a number of families with children with CF who took part in our photoshoots for which we are very grateful.

We ran a three week radio campaign again this year in the lead up to 65 Roses Day. We would like to thank Malone Group for sponsoring the radio advert and Keelin Shanley for doing the voiceover.

A major new element to driving awareness this year was the support of our Corporate Partners with Roses on sale in Spar Stores, Smiths Pharmacy Chemists and Sam McCauley Chemists nationwide. This was outstanding support both in terms of raising funds but also raising awareness of 65 Roses Day and Cystic Fibrosis in every village and town across the country. Thank you to everyone involved for this amazing support!

65 Roses Challenges Well done and thank you to all the individuals, schools and workplaces who organised events as part of our annual 65 Roses Challenge. Due to the large number of events it would not be possible to list them all but they included gym challenges, coffee mornings, bake sales, skydives and even a 65km cycle to name just a few.

If you still have funds to lodge from either 65 Roses Day or from a 65 Roses Challenge we would ask that you lodge the funds to the below fundraising account as soon as possible: Fundraising Account: IBAN IE59 AIBK 931071 08578593 BIC: AIBKIE2D

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Spectrum / Summer 2018

65 Roses Skydive This year 42 Skydivers registered to take part in the 65 Roses Skydive. Over €23,000 was raised by the participants. Well done to all involved.

Bodynamics Gym Congratulations to Colm Kinsella and all his colleagues at Bodynamics Gym in Santry who took on the 65 Roses Challenge and raised €1,422.45. Each participant completed a 3,200 deadlift, 3,200 metre row and 320m Prowler @65kg. Very challenging but a great event!

Coláiste Íosagáin Congratulations and well done to the teachers and students of Coláiste Íosagáin in Portarlington who organised an Ice Rave Challenge and raised €1,316.50.

Well done to all involved!

www.cfireland.ie

Next Level Fitness Well done and thank you to Charlene Keegan and everyone in Next Level Fitness in Finglas who took part in the 65 Roses Challenge and raised a total of €2,295 for CFI.

Malone Group Cycle Thank you to Malone Group for once again organising their 65km cycle as part of the 65 Roses Challenge. The cycle kicked off in Blanchardstown outside the company’s offices and made its way around north Dublin before finishing in Blanchardstown. A great day’s cycling was had by all those who took part and a total of €2,833.35 was raised.

CBC Monkstown Cystic Fibrosis Ireland would like to say a huge thank you to teacher Ian O’ Herlihy and his students of CBC Monkstown who came out in force to support 65 Roses Day. The students sold CFI purple roses along with other CFI emblems around different parts of South Dublin and raised a fantastic total of €3,825.95.

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Sheena McCabe Coffee Morning CFI would like to say a big thank you to Sheena McCabe and her friends for organising coffee mornings in both Greystones and Foxrock and raised a fantastic total of €2,008 for CFI.

Ger Conroy Fitness A big well done and thank you to the staff and members of Ger Conroy Fitness in Dublin who raised a whopping €5,345 as part of their gym’s 65 Roses Challenge.

Liffey Swim Cystic Fibrosis Ireland would like to say a big thank you to Robert Clarke for organising the annual Liffey Swim which took place on Saturday 19th May. The event saw a number of experienced swimmers jump from O’Connell Bridge in Dublin and they raised funds as part of their swim with the final income still to be confirmed. Luckily for the swimmers the sun was shining on the day!

1 in 1000 – VHI Women’s Mini Marathon Cystic Fibrosis Ireland would like to say a HUGE thank you to all of the ladies, both in teams and as individuals, who walked, jog, and ran the VHI Women’s Mini Marathon for CFI on Sunday 3rd of June. We had a wonderful day with the sun shining bright on all the ladies who wore their purple t-shirts with pride, while taking around the streets of Dublin! Our after party in Dtwo Harcourt Street was great fun, with face painters, our DJ, food and refreshments, goodies and two raffles, with loads of great prizes.

We’re looking forward to next year already!

We had a total of 560 participants running for Cystic Fibrosis Ireland in excess of €20,000 has been raised to date.

If you took part in the VHI Women’s Mini Marathon for CFI, we would ask you to please lodge funds raised as soon as you can. If you have any queries in relation to how you can return your fundraising money, please contact Rachel at the office on 01 496 2433 or email rbyrne@cfireland.ie. We will have another raffle for the ladies who have raised €100 or over and return their fundraising money by August 31st.

Thanks once again for being One in 1,000!

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Malin2Mizen Cycle4CF Malin2Mizen Cycle4CF once again proved to be a hugely popular event with 40 cyclists signing up to take part in the 640km cycle from Malin Head to Mizen Head. The event took place over 4 days from May 10th to 13th. Each cyclist was asked to raise a total of €2,000 in order to participate and the event has raised and amazing total of over €100,000 this year so far, with the final amount still to be confirmed. The cycle this year was in memory of Lisa Dolan (RIP) from Athlone. Lisa had cystic fibrosis and received a double lung transplant in 2016. She helped to launch the Malin2Mizen Cycle4CF 2017 in Athlone in November 2016. Sadly Lisa passed away in May 2017. It was a fitting tribute that Lisa’s Mam and Dad, Rosie and Seán Dolan, along with other friends, took part in this year’s cycle and did an amazing job fundraising for the event!

To get the cycle underway, everyone made their way to the Inishowen Gateway Hotel in Buncrana on Wednesday 9th May where a briefing meeting was held with all the cyclists and support crew to give an overview of what to expect over the 4 days of cycling. Day 1 saw the cyclists cover a distance of 160km from Malin Head to Bundoran.

Weather conditions were quite good and the cyclists got a great welcome at their main food stop in Kernan’s Diner in Drumkeen.

Day 2 saw the cyclists make their way from Bundoran to Oranmore. It was a good day’s cycling with a distance of approximately 170km covered. The cyclists were well looked after throughout the day with food stops at Mullins SPAR service station in Sligo, the SPAR service station in Charlestown and SPAR Ballindine.

Day 3 saw the cyclists leave Oranmore and continue to make their way southwards towards Mallow. The first water stop of the day was at the SPAR Express in Gort before moving on to stops at Maxol Clarecastle and Maxol Dooradoyle. The cyclists covered 170km on Day 3 with everyone eagerly looking forward to their final day.

Day 4 saw the cyclists get on the road early leaving Mallow and making their way to the first stop at Coleman’s Maxol station in Millstreet. The cyclists then made their way towards Macroom and Drimoleague and then on to Durrus with Mizen Head now within touching distance. A sense of excitement could now be felt among the group as they knew they were nearing the end of their 4 day adventure from one end of the country to the other. Everyone regrouped a few kilometre’s out from Mizen Head and then proceeded to finish as one group crossing the finish line to a rapturous welcome in Mizen. It was a very emotional moment for everyone involved and a sense of joy and relief could be felt knowing that everyone had arrived safely.

This event takes a lot of planning and organising and could not happen without the help and generous support of so many people and our sponsors. Cystic Fibrosis Ireland would like to thank our sponsors SPAR, TLC Nursing Homes, Maxol Ireland, Dunnes Stores, Bradley Motors Tuam and Cycling Ireland for their generous support.

We would also like to extend a huge thank you to Bernie, Sean and the Priestley family, Brendan Quigley, John Sweeney, Phelim Macken, Phelim McCallion, Myles www.cfireland.ie

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Sweeney, Caroline Heffernan, Claire Dunleavy, Anne McCarthy, An Garda Siochana, Motorbikemarshals.ie, the Dolan family, our CF Branches, the Physios, all the Local Sports Partnerships and our ambassadors Alan Brogan and Michael Carruth. Thank you also to all the volunteers who joined us to provide extra support with luggage, food, lead cars/ back cars etc. They were Marguerite O’Flaherty, Tony McHugh, Ann O’Carroll, Teresa McDermott, Kathleen Carthy, Brian McCarthy, Tim McCaffrey and Fran Heffernan.

We would like thank our cycle leaders who supported the cyclists. They were John Sweeney, Phelim Macken, Ollie Hayes, Samantha McCarthy and Izabel Tomaszewicz. We would also like to say a huge thank you to everyone who came out along the route to cheer on and offer your support to the cyclists, this gave them a great boost each day!

Finally a huge thank you to our 40 cyclists including the Teams from our Corporate Partners from Spar and Sigmar Recruitment. This event would not have been possible without your commitment to preparing for the cycle and your amazing fundraising efforts! Everyone is already looking forward to Malin2Mizen Cycle4CF 2019!

Spar Ireland The charity partnership between Cystic Fibrosis Ireland and Spar continues to grow from strength to strength with €255,000 raised by Spar to support people with Cystic Fibrosis in Ireland by the end of April. These monies have been raised through a contribution from sales of Spar’s Own Brand product in stores, Collection Boxes in stores across the country and support of Cystic Fibrosis Ireland fundraising events.

This has included support by Spar stores across the country of 65 Roses Day with Cystic Fibrosis Ireland Roses and Rose Bags on sale, raising funds and awareness nationwide. In addition a team of 8 cyclists from Spar took part in the Malin2Mizen Cycle4CF in May, with Spar provided support at their stores all along the route.

The next major focus will be on the Head2Head Walk where Spar have come on board as the main sponsor as well as strong support from Spar participants in the event. We are absolutely delighted with the amazing support provided

by Spar in the first year of our Charity Partnership with them and if you get the opportunity, say thank you to your local Spar Store for their ongoing support for people with Cystic Fibrosis in Ireland.

Sigmar Recruitment Cystic Fibrosis Ireland would like to say a huge thank you to our Charity Partner – Sigmar Recruitment who supported our recent fundraisers including 65 Roses Day, Malin2Mizen Cycle4CF and our 1 in 1000 campaign for the VHI Women’s Mini Marathon.

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Eve Coogan Paris Marathon Well done to Eve Coogan from Dublin who completed the 2018 Paris Marathon in aid of Cystic Fibrosis Ireland and raised €500. The marathon took place on 8th April in Paris and Eve was delighted as it had been a goal of hers for a long time to complete this marathon.

Sam McCauley Chemist Group Thank you also to the Sam McCauley Chemist Group who supported Cystic Fibrosis Ireland across their stores on 65 Roses Day raising a total of €1838.26 to date.

Spectrum / Summer 2018

Haul de Naul Thank you to David Masterson and Shane Graham for organising the very successful Haul D’Naul Cycle which took place on Sunday 11th March. There were two routes to choose from, a 45km cycle and a 70km cycle. A large number of people signed up to take part and a brilliant total of €6,820 was raised. Well done to all the organisers, volunteers and cyclists who took part.

London Marathon CFI would like to say a big thank you and well done to our team of three runners who took part in the 2018 London Marathon. They were Ger O’Shaughnessy, Raymond Mulligan and Tony Griffin. The team really enjoyed this world famous marathon and would highly recommend this tour to anyone interested in taking part.

If you would like to participate the 2019 London Marathon then please get in touch on 01 496 2433 or email fundraising@cfireland.ie and remember, we can guarantee your race entry for this much sought after Marathon!

Confey College, Leixlip Huge thanks to the pupils of Confey College in Leixlip, who raised €1,165 to help people with Cystic Fibrosis and presented the cheque to our Fundraising Manager, Fergal Smyth at the end of May.

Smith’s Pharmacy Group Cystic Fibrosis Ireland would like to say a huge thank you to our Charity Partner – Smith’s Pharmacy, who supported us across their stores on 65 Roses Day raising a total of €2,260 and for entering a team in the VHI Women’s Mini Marathon on June 3rd.

Colaiste Aindriu, Bagenalstown Thank you to the staff of Colaiste Aindriu in Bagenalstown who recently presented a cheque for €860 to Cystic Fibrosis Ireland as proceeds from their show, a modern version of Cinderella. Special thank you to the principal Mr. Jimmy Dermody for organising the cheque presentation.

Duleek 10k Fun Run/Walk The Annual Duleek 10K Remembrance Run took place this year on 29th April and as always was a huge success. The Run began in 2013 as a remembrance run for first cousins Kelley Noone and Cathy O’Brien and of all our CF loved ones. It gives people an opportunity to celebrate and pay tribute to their courage and love of life. We are always inspired by them! However, the run also celebrates the exciting times and hopes for our young people with Cystic Fibrosis and how important it is to increase public awareness about CF. There were a record 598 registered walkers/joggers & runners and €19,001.37 was raised for the CF Drogheda Branch / Cystic Fibrosis Ireland. This event is so much more than a run, It is a gathering of old friends and family and a real community spirit is felt throughout the whole village and surrounding area.

The organisers would like to take this opportunity to thank everyone involved in making the Duleek CF 10K one of the best in the country! www.cfireland.ie

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

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t: +353 1 496 2433

f: +353 1 496 2201

e: info@cfireland.ie

w: www.cfireland.ie

Company Reg: 449954

Charity: CHY6350

Spectrum / Summer 2018