Spectrum Autumn 2016

Spectrum

Autumn / 2016

È Orkambi & Kalydeco: Progress Update È Val Weblin, The Road to Fatherhood È Luke Doherty, Transplant to Trainer È Fundraising Updates È Charity of the Year Spectrum | Autumn 2016

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Foreword Welcome to the Autumn edition of Spectrum.

As usual we hope to keep you informed about new developments around the country. Because of the dedication of our members and our active branches it is fantastic to see the continuing improvement in our CF centres. The most recent includes the official opening of the new CF Centre in Limerick which comprises a new in-patient and out-patient centre. The unit is housed in two floors of the Leben Building in University Hospital Limerick. The capital end of the project was funded by CFI/Parkinsons Association and the Hospital Foundation with very generous support from the JP McManus Pro Am Fund and the general public in the Tipperary, Limerick and Clare areas with support from the national office of CFI and the National Lottery. The increased running costs have been met by the HSE/and UHL. Congratulations again to the Tipperary Limerick and Clare branches (TLC4CF).

The new Minister for health also had a tour of the Cavan Hospital and was very impressed by the new CF paediatric inpatient rooms under construction and the related reconfiguration of paediatric services.

As always there are major challenges. Not least, the wait to see if Orkambi has been approved and Kalydeco extended. We have called on the Minister to approve these two important medicines as soon as possible. The issue of understaffing also remains a major problem, as does the need to open 7 idle rooms in the Mater Hospital for pre and post-transplant care and to staff a recently built operating theatre to sustain the lung transplant programme.

Apologies to people with CF who received a direct mail request for a donation! The donation request should have gone with a cover note saying it was information purposes only. PWCF will benefit from this initiative when it is up and running.

Philip Watt (CEO) Samantha Byrne (Editor)

Front Cover: Emma Quinlan, Ambassador for One in 1,000

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CONTENTS Latest News | 2Ñ3

Dad's Corner | 7-8

È Orkambi and Kalydeco; progress to date È Hospital Update

È Val Weblin - His Road to Fatherhood

Research | 4

Spotlight | 9-10 È Luke Doherty - Transplant to Trainer

È EUPATI

Articles | 11-13 Information | 5-6 È Medical ID Cards

È Best Will Week È Charity of the Year

È 2017 Conference

Fundraising | 14-22 È Challenges and Events È Thank You È Christmas Cards

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

Spectrum | Autumn 2016

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Latest News Orkambi and Kalydeco: Progress to date CFI has recently written to the Minister for Health to urge once again that the negotiations on Orkambi and the extension of Kalydeco are concluded in a positive way for our members as soon as possible and to remind him and the government of the importance of these drugs to our members.

Cystic Fibrosis Ireland has undertaken significant lobbying on this issue including: • Two meetings with the Minister for Health and Senior Officials • Meeting with 56 TDs from all political parties • A comprehensive survey and submission to the National Centre for

Pharmacoeconomics (NCPE) • Meetings with the NCPE • Media statements and coverage on both national TV, local and

national radio and other advocacy at a local and national level.

Latest: CFI understands there have been three rounds of negotiations on Orkambi and that a final decision is imminent. We have made clear that it is crucial that our patients gain access to Orkambi as soon as possible. It is also crucial that a fair price is paid for Orkambi, not least because there are further CF drugs in the pipeline.

Beaumont Hospital Good news- the Registrar (non-consultant doctor) funded by CFI and CF Hopesource has recently commenced work in Beaumont.

We had a productive meeting with the new CEO of Beaumont Hospital and we hope to update you within the next few weeks on the progress towards building the 20 ensuite room inpatient ward that was included in the programme for government and which will be in the 2017 health estimates (Thanks again to Minister Finian McGrath TD for his particular support on this).

We also pressed the hospital to ensure that a new CF/Respiratory Consultant is recruited as soon as possible.

Mater Hospital CFI understands that a post-transplant Clinical Nurse Specialist nursing post will be advertised by the hospital in the very near future. This post is funded by CFI for 2 years and will provide crucial pre and post-transplant support for CF patients. A part-time Psychologist for transplant patients is also now in place, again funded by Cystic Fibrosis Ireland.

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Cavan Hospital The CEO of CFI and senior representatives from Cavan Branch had an on-site meeting in Cavan General Hospital in July to review the progress on the two CF paediatric inpatient rooms and associated relocation works that will benefit all children in the hospital. Progress is going very well and the building should be completed by Xmas. CFI and the National Lottery have provided a total of â‚Ź450,000. â‚Ź350,000 of this has been raised locally in a fantastic fundraising effort by the Cavan Branch and its many supporters.

Crumlin Hospital A very positive meeting was held with the management of Crumlin Hospital in September. Issues under discussion included progress on the recruitment of a new permanent CF consultant (underway); the repainting of the St Michael's ward (almost completed); access to schooling (funding sought) and the need for greater resources for the clinical genetic services in the hospital.

Limerick Parents' night will be held on25th November 2015 in partnership with CFI/ TLC4CF. The official opening of the new Leben building will take place on the 7th of October with the guest of honour being the Minister for Health, Mr. Simon Harris TD.

Research The CEO of CFI is also the Chairperson of the Medical Research Charities Group which brings together 35 patient groups and charities on the issue of health research. An MRCG conference held on 27th September featured an inspired input from Mark Pollock who lost his sight when he was 14 years old and who was further severely disabled because of an accident. Mark was truly inspiring and a podcast of his speech will be available on the MRCG website in the near future www.mrcg.ie

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Research

by Katie Murphy, Senior Research & Policy Coordinator CFI The second intensive training week at The European Patients'Academy (EUPATI) took place this September and it was an insightful experience, filled with information and education focussing on topics involved in medicines Research & Development.

I am delighted to have been accepted to take part in this pan-European Innovative Medicines Initiative, which is led by the European Patients' Forum, with partners from patient organisations (the European Genetic Alliance, the European AIDS Treatment Group, and EURORDIS), universities and not-for-profit organisations, along with a number of European pharmaceutical companies.

The Course is a mixture of independent e-learning coursework and face-to-face training events over a 14-month period.

The EUPATI training programme is primarily online based, with six core modules covered; Module 1 - Discovery of medicines and planning of medicines development Module 2 - Non-clinical testing and pharmaceutical development Module 3 - Exploratory and confirmatory clinical development Module 4 - Clinical trials Module 5 - Regulatory affairs, medicinal product safety and pharmacovigilance Module 6 - HTA principles and practises For the second Face-to-face training event the topics primarily covered were from module 5 & 6, primarily looking at these topics from a European perspective.

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One of my highlights of the week was hearing the insights from Karen Facey, who is an Evidence Based Health Policy Consultant - who specialises in patient and public involvement in the Health Technology Assessment (HTA), something which we at CF Ireland have been working towards for a number of years now.

Highlighting the importance of ensuring representative, evidence-based patient submissions to support the HTA, it is very positive to learn that the work we carried out and the inputs received from our members through the 'Treatment & CF - what matters to you', survey is very much in line with the recommendations within HTA agencies who are leading the way in patient involvement.

As the EUPATI project now prepares for the graduation and closing ceremony, which takes place in Brussels in December it is increasingly important to ensure that the information which has been compiled from this course does not sit on the shelf, gathering dust. One measure taken to avoid this was the development of the EUPATI toolbox. The toolbox is a brilliant resource for anyone who has an interest in Medicines Research & Development - it is easy to navigate and all of the information is reliable and objective. The toolbox is free to access and can be found at the following link; https://www.eupati.eu/ .

We are also fortunate to have a very active Irish National Platform, where we will now work to ensure that we use the expertise gained through this course (8 Irish people will have completed the training by the end of 2016) and apply it at a national level. There is a growing demand for the inclusion of patient representation and perspective in many areas of research, regulation and policy - this is a positive opportunity to continue to ensure involvement in decision making activities, that impact on patient communities.

Spectrum | Autumn 2016

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Spectrum | Autumn 2016

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Information Medical ID Cards

Cystic Fibrosis Irela

Medical ID Cards are available from CFI. Simply call the office to request an application form, return it, and we will get the card back to you within 2 weeks. You may find one useful in the following situations:

Medical Identificat

nd

ion Card

Name: A N Other DOB: 01/01/2000 Address: 1, Park Roa d Dublin Tel: 086 1002000 This individual has Cystic Fib

rosis.

24 Lower Rathmines Road, Rathmines, Dub lin 6 t: +353 1 496 2433 | f: +353 1 496 2201 | w: www.cfireland.ie

• Travel Abroad • Backpacking for extended periods • In emergencies • To have parent contact details available • When needing disability access Please contact Sam @ 1890 311211 or sbyrne@cfireland.ie

Hospital Informati on Our Lady's Hospital , Crumlin Hospital phone: 01 1002003 Doctor: Dr. Smith Doctor phone: 01 1002002 Medical Information Allergies: Medications: Ventolin, Flixotide, Aquadek, Vitamin D, Hypertonic Saline, Creon.

Other Conditions: Hay fever

In case of eme rgency, please contact: Name: Mum/Dad Tel: 086 1002000 / 086 100

2001

HAVE YOUR SAY...

An Independent Living survey will be emailed to all PWCF 16+ in the next couple of weeks. To update your contact details with us, please email info@cfireland.ie

PWCF Rosie FitzGerald and her husband Andy Lake, arriving at their wedding reception in September 2016. It was a double celebration year as it was the 10th anniversary of her lung transplant which took place in 2006.

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Dad's Corner

By Val Weblin, PWCF So having kids seems just like an everyday occurrence for most people, but for people with CF it can be a huge challenge. This is our story, it's a bit unusual and it certainly was not easy. I was born with CF and always hoped I would get married and be able to adopt or foster a child. Life took its usual twists and turns and I was very fortunate to get a lung transplant in July 2000. Shortly after that I met the perfect woman for me and I married Julie in December 2005.

We always wanted to have kids but we thought it could never happen, we were under that impression until a doctor suggested trying IVF. We did three rounds but unfortunately it didn't take.

Following on from that we said we would go down the adoption route. This was a very long and gruelling process and ultimately ended in rejection due to me having CF. We don't have regrets in relation to this however; they had all my medical information and could have told us at the start instead of dragging it out for eight years. It was heartbreaking and so frustrating, we had jumped through hoops for them and still no joy.

We then tried to go down the fostering route.

We went through all the paper work but again we were turned down on medical grounds! They thought us not fit to look after a child even for one night! You could not imagine the anger and hurt we felt, after all the time and effort we put into this. We appealed and met a committee, we knew straight away it was just a formality and as suspected we were rejected once again.

Spectrum | Autumn 2016

From all their reports they should have known we wouldn't give up that easy! My wife is an amazing woman, she was attending a CBT to help her cope with a tough period in her life including the death of close family members as well as being told she would not be able to be a mom. They discussed surrogacy and that evening my wife and I had a conversation about it; to be honest I was starting to give up but my wife did research and we watched a TV program about it so decided to go for it. That was February 2015.

It all began with an email to a clinic in India, we chose India because we wanted to adopt from there and we also knew of a couple that had gone through the process. We emailed the clinic and detailed our medical history, if they said no then that would be fair enough.

We waited for two weeks and had no answer so we sent them another quick mail, then it happened; the reply we were praying for "Surely we can help you in April".

We were like "Oh my God", we couldn't believe it.

We had to use a donor egg as Julie could not go through IVF again as she hyper stimulated the last time we tried it. We were given the option of different egg donors, and we chose one of Indian background. As it so happened the donor we chose would not be ready until May 2015, so that was it.

The plan was to head over have a fantastic holiday and try it out, at worst we'd have a great holiday and at best we'd have a baby! We didn't tell anyone we were going not even our families, we told people we were going to Lanzarote for a few weeks.

The reason for this was simple, they had gone through all the previous disappointments with us and it is very difficult to tell people you love bad news.

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We went on a plane to Dubai and stayed with cousins there and of course they told nobody about our little adventure. We stayed with them for a weekend, what an amazing place to stay. We then went to the next part of our trip and had a three hour flight to India.

We were on the West coast in a place called Anand.

It's a small town, a dry state and people are mostly vegetarian. We stayed in an amazing resort, it was a paradise something you couldn't even dream up if you tried. We attended the hospital on the Tuesday morning and it was arranged for me to have sperm extracted that evening. The hospital was tiny, just the size of a ward in one of our hospitals. I got a good feeling when we met everyone, it was like these people know what they are doing and they will get it right. We also met the surrogate on that morning, it was strange but in a good way. She was shy and we were excited and we had a chat (through a translator). The eggs were then fertilised as it would be with IVF and they were transferred into the surrogate a few days later. That was it, we said our goodbyes and hopped on a plane home.

The wait was excruciating, we waited two weeks for an email; one that we will never forget. The Tuesday morning, I opened my laptop and logged into to my email; Julie was like oh no I don't want to know and there it was "Congratulations it's positive" nothing else that's it. They are simple straight forward people. We were on cloud nine. We waited for every check up, every scan with baited breath.

In January of this year we went back to India, this time we stayed in much more humble dwellings! There was a new state of the art hospital built and that's where we went. On Monday the 18th of January our son Thomas Donal Weblin was born, he was three weeks early and weighed 6lb 14oz's. He had pneumonia when he was born and was in NICU for a week and then we moved into the hospital for five days, we had Thomas in our room and were able to looking after him full time. It was a bit of work to get home we had to provide DNA test results (to prove I was the father) to get him an Emergency Travel Cert so he could come home with us. The Irish embassy in India helped us and we will be forever grateful. We have had a lot of help from friends and family and made very good friends in India, all of these people have helped make our dreams come true.

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Transplant to Trainer

By Luke Doherty My name is Luke Doherty. I have had Cystic Fibrosis for nearly 26 years now. I am a trained personal trainer, sports therapist, S&C coach and Pilates instructor. On the 23th August, I got the call for a new set of Lungs!

Now I am on a journey to get back to Personal Training.

I was diagnosed as a baby, which helped me get the treatment I needed early. I was always interested in sports growing up. I played football for my local club and school. The amount of exercise that I did kept me healthy and kept the lung function up. During secondary school I started to need IV antibiotics every 3-6 months but through determination and regular exercise I ended up pulling myself out of needing IV treatment for a couple of years.

I chose to do a personal trainer and sports therapy course once I left school. The teachers on the course were exceptional when it came to my health and me. They made sure that I was ok throughout the years and made it easy on me if I needed time off due to health. I started to have a decline in my health when I came out of college. I just started to get into the industry and train with some of the best trainers in the industry when I had to take a step back. My lung function was all over the place. It was constantly up and down. My team wanted me to have a chat with the transplant consultant. He was happy that it was most likely Asthma that was playing havoc and that he would see me in 6 months to a year. Over that year, I started to come in with infections every two or so months, not being able to breathe. Every time I got out I would start building my body back up and getting my baseline fitness and build my muscles up, then suddenly I would be back in hospital again with an infection. I Spectrum | Autumn 2016

started to need oxygen more and more. Generally, just during exercise I would need oxygen. I lost 15kg over the year. Luckily, when I came out of the gym I had the knowledge to design a home program to help me get fitter. If doing exercise was enough to stop this Cystic Fibrosis from getting worse then I would never be sick but this is unfortunately not the case. Although exercise will help to slow the disease down by keeping the body strong/healthy.

I decided then to get my Pilates certificate. With CF, your posture is not the greatest due to the overuse of the breathing muscles and all the coughing. I wanted to get the Pilates on board both to fix my postural imbalances and I thought it would be great for when I work with clients. Having the light exercises could also help me when I'm in hospital as the amount of sitting around made my muscles extremely weak. With doing a Pilates session daily in hospital it would not take me as long to get back to my exercise baseline when I get out.

The concentration on the breathing and learning how to breathe properly helped me in many ways. It also helped me to zone out and just relax. I was more in tune with my body, which helped wonders with my anxiety.

In January 2016, I collapsed one of my lungs and was started on an emergency route to get onto the transplant list. Unfortunately, the lung did not reexpand but weirdly I was better on only one lung.

My right lung had taken over and the fact that the body was not struggling to keep the left lung alive meant that I improved. My O2 sats improved and I was able to exercise harder and better than I had in the previous year.

At this stage, I was started on Orkambi and took to it well. The reason my team put me on Orkambi was to try to reduce the amount of admissions. The next three months saw me go from strength to strength and started to bulk up nicely. I had to exercise at a lower intensity due to being on only one lung. The picture above is me a week before I came into hospital. One day I suddenly just felt short of breath. I needed to be admitted again.

The evening before I was meant to be discharged my nurse came in and said that the Mater were trying to ring me. They had a potential match! This was my first call so I just took it as a dry run (to get a call but the transplant does not go ahead). At 6am, they came in to 11

tell me that the lungs were mine! My main aim was to stay as relaxed as possible. To be honest I was so tired from being up until then and doing all the prep that I was ready for sleep. The surgery was a huge

success and I was walking around the ward within the next couple of days. Due to my training my body was strong enough and although a little wobbly, I was strong on my feet. The recovery was tough, with getting used to the new lungs, some complications and recovering from the surgery in general. I finally got to go home after just over 2 weeks. Over the next 3 months, I am especially susceptible to infections so I am not allowed around crowds, drive or have takeaway food. This is hard for me especially when my sister was getting married the week after I got out. This was one day I was not going to miss but I took precautions like not hugging people and trying to stay away from the crowds as much as I could. It was going to be a once off!

Once I am allowed back to work I hope to get back into Personal Training and start doing strength & conditioning work with athletes. Another thing I cannot wait to get back to is football. The unfortunate aspect about being a personal trainer is that it will take a bit longer to get back to work in terms of what I can do but I plan on doing this right the first time!

If you want to follow my journey from transplant back to personal training, I have a blog out of Transplant2trainer, which you can find through Facebook, on my twitter (@lukedotsey) and Instagram (dotsey3) I will have regular updates about journey. I hope that this blog story will help to raise awareness for both Cystic Fibrosis and organ donation.

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It's worth noting that, even leaving aside the fact that you may want to bequeath some of your money to charity, writing a will is a prudent thing to do. If you die without one, your assets will be distributed according to Irish law rather than according to your own wishes. Just a few of the other reasons to take the time to write a will include: • Reducing the inheritance tax incurred - leaving money to charity allows for this.

• Making provision for your children e.g. choosing who will take care of them and setting aside funds for this.

• Making any other necessary provisions, such as for your pets, or your business, or other responsibilities that you have.

• Specifying what sort of funeral you would like, taking the pressure off your family from having to make these decisions.

• Declaring that you would like your organs donated. Be sure to tell your next of kin about this in case it comes up unexpectedly.

• Naming your executors (family members are a standard choice).

Step One: Decide how much you want to leave to charity The main choice here is whether you want to bequeath a fixed amount to your chosen charities, or else first make provision for your family and then leave the remainder.

Step Two: Pick a method for writing your will One of the reasons why so many people die without having written a will every year is that they don't realise how easy writing a will really is, unless your financial affairs or wishes are unusually complex. It is possible to do it yourself by using a template, although using a Solicitor is the safest option as it will ensure that your will is valid.

Step Three: Consider inheritance tax Leaving money to charity will reduce the inheritance tax payable. Talk to your Solicitor and they will advise you on the best way approach to take.

Step Four: Pick your charities and find out how to leave money to them You'll need to specify your chosen charity or charities after you have ensured you have taken care of your family, friends and other responsibilities first.

Step Five: Make your will Now that you've made the key decisions you can make your will via the method you picked in step two.

Why not take the opportunity of Best Will Week which will be hosted by MyCharity.ie from the 31 October, 2016 to visit your Solicitor and put your will in place. It is a straight forward process and will give you the peace of mind that your family, friends, other responsibilities and charities of your choice will benefit as per your wishes when you are gone.

For further details visit the Legacy Giving Page on our website www.cfireland.ie or contact Cystic Fibrosis Ireland on (01) 4962433 or email info@cfireland.ie 13 Spectrum | Autumn 2016

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

As companies look at who they are going to select as their Charity of The Year for 2017, why not ask your company to consider Cystic Fibrosis Ireland? We can provide you with a copy of our Impact Report which outlines the 10 key ways Cystic Fibrosis Ireland have used the funds raised in 2014 / 2015 to help improve CF services leading to a better quality of life for people with CF in Ireland.

Ways your company and workplace can support CFI...

Charity Of The Year

Permanent TSB

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

Cystic Fibrosis Ireland was chosen as one of the two charity partners along with the Cork Children's Hospital for Permanent TSB from July 2015 to June 2016. For Permanent TSB this was an opportunity for them to use their resources to make a positive contribution to society. The charity committee organised two major events including a Charity Gala Ball in September 2015 and Strictly Come Dancing in May 2016. We would like to thank everyone involved in Permanent TSB in terms of their efforts to raise funds to help Cystic Fibrosis Ireland across the year and look forward to the cheque presentation which is due to take place in October.

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

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

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

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Central Bank Employees of the Central Bank selected their Charity of the Year Partners for 2016 / 2017 and Cystic Fibrosis Ireland were delighted to be chosen as one of their partners. We presented to their staff in August to show how funds provided as part of the COTY partnership are being used to support CF services in Ireland. Staff were also encouraged to take part in events such as the Dublin City Marathon on behalf of Cystic Fibrosis Ireland for which the Central Bank will match the funds raised by their employees.

The Charity Committee in the Central Bank confirmed that "the Central Bank of Ireland are delighted to support Cystic Fibrosis Ireland as one of their chosen partner charities over the next two years. We hope that our support and the support of our staff members will be of direct benefit to CFI and enable them to continue to carry out such important functions to the lives of PWCF and their families."

Thank you to everyone at the Central Bank for your ongoing support.

PWCF in Ireland need your support!

Cystic Fibrosis Ireland - Sporting Events You can support CFI with your colleagues by participating in a range of Sporting Events in 2017 either as part of a COTY programme where you work or by simply putting a team together and participating in our events with your colleagues. Full details of all events will be available on our website at www.cfireland.ie and once your enter, contact the CFI Fundraising Team and we will organise your Fundraising Pack. 2017 events will include; London Marathon (April), Malin2Mizen Cycle4CF (May), One in 1000 VHI Women's Mini Marathon (June), Paris2Nice Cycle, Head2Head Walk (Sept), Paddy Kieran's International Walk, Dublin City Marathon (Oct), New York City Marathon (Nov), Skydives, Kilimanjaro and other Overseas Challenges (All Year).

You can have great fun with your work colleagues while raising much needed funds to help support provision of services to help PWCF in Ireland. Why not check also if your employer is willing to provide match funding for monies raised by their employers to support CFI?

65 Roses Day - Thursday 13th April Our National Flag Day for 2017 (65 Roses Day) takes place on Thursday 13th April.

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

Corporate Sponsorship Another way your employer could help support PWCF in 2017 would be to sponsor one of the major events hosted by CFI. This could include our National Conference which takes place in Killarney in April, 65 Roses Day also in April, the Malin2Mizen Cycle4CF in May, One in 1000 VHI Women's Mini Marathon in June or the Head2Head Walk in October.

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

For more information...

For support with any discussions with your employer or a potential Corporate Sponsor, please do not hesitate to contact the CFI Fundraising Team (01) 4962433 or email fundraising@cfireland.ie Spectrum | Autumn 2016

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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 October 1st to 8th: CFI International Walk Paddy Kierans Memorial Walk 2016 in memory of Ita Minogue Meeting at 4am in Dublin Airport on Sunday October 1st, it was an early start for the 40 walkers participating in the 2016 CFI International Walk in Portugal. This year's International Walk was held In Memory of Ita Minogue, a PWCF and former walker who sadly passed away in 2015. We were delighted to have several of Ita's family and friends take part in the walk and join up with the Walk Community that Ita knew and loved so well.

Some of the highlights of the 2016 CFI International Walk were a walk from Lagos de Pena to Sintra, a walking tour of Lisbon including St. George's Castle and Macas beach. We were delighted to have walk Ambassador Mary Duff join the walk for her 3rd year in a row. This was Mary's last year in her role as Ambassador and we would like to take this opportunity to thank Mary for all her support over the past three years. We look forward to working with her on future projects for Cystic Fibrosis Ireland.

Despite walking the equivalent of two marathons in 7 days in the Portuguese heat, the group returned to Dublin in high spirits and with great memories of a fantastic fundraising trip. A huge 'thank you' to everyone who participated in the Walk and helped raise over â‚Ź115,000. The CFI International Walk is now in its 22nd year. The success of the Walk is testament to the hard work of the participants and the Walk Committee.

Details of the 2017 Paddy Kierans International Walk will be announced later this year. If you would like to receive information on how to join the walk, please contact Nuala on 01 496 2433 or email nmcauley@cfireland.ie.

There is really no better way to see a country than to walk its most scenic sites, so why not join the 2017 International Walk while raising funds to support people with cystic fibrosis. It provides an opportunity for some life-changing experiences and to make a whole bunch of new friends. Get in touch now for more information!

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October 30th: SSE Airtricity Dublin Marathon The saying is true, "not all super heroes wear capes!".

A team of over 35 super heroes will take to the streets on Sunday October 30th to 'Run for CF' in the SSE Airtricity Dublin Marathon.

For the first time in the history of the Marathon, this year's event was a sell out with registration closing in August due to the race reaching maximum capacity! If you were not lucky enough to secure a place in this year's Dublin Marathon, don't worry you can still support CFI on the day by coming out to cheer on Team CFI. However, if you are itching to lace up those runners and take on a marathon challenge we do have places available for the various International Marathons that CFI provide places for in 2017!

Good luck to Team CFI taking part in the Dublin Marathon on Sunday October 30th and 'Running for CF'.

November 6th: New York City Marathon The 2016 TCS New York City Marathon takes place on November 6th and we would like to wish all those taking part on behalf of CFI the very best of luck. Registration will open in January for the 2017 marathon. This is a really popular event and it is almost impossible to secure a place due to its popularity. With 2 million spectators and a carnival atmosphere, the New York City Marathon is an unforgettable experience.

We are pleased to announce that we have a limited number of Guaranteed Places for this event. There is huge interest in the event so if you are thinking of taking part, we would encourage you to register your interest with us and we will provide you with details of the marathon package.

Please e-mail Peter at pminchin@cfireland.ie or call us on 01 496 2433 for more information and to secure your place.

April 23rd: Virgin Money London Marathon CFI are pleased to announce details of the 2017 London Marathon package where we can guarantee you a much sought after race entry to one of the world's greatest sporting events.

The marathon starts at 9.30am on Sunday 23rd April from Blackheath, near Greenwich and runs past many London landmarks, including the Tower of London, the Houses of Parliament, Big Ben and Buckingham Palace. The package includes: •

Choice of flights from selected airport

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2 nights twin or double sharing with full buffet breakfast

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Guaranteed Race Entry

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Private Coach Transfer to Race start from hotel

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Services of your Sports Travel guides

To find out more or to book your place please call our office on 01 496 2433 or email fundraising@cfireland.ie Spectrum | Autumn 2016

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May 11th to 14th: Malin2Mizen Cycle4CF Following on from the huge success of our 2016 event, CFI are delighted to announce that Malin2Mizen Cycle4CF 2017 will take place from Thursday 11th May to Sunday 14th May.

This event proved to be a tremendous success in 2016 and a very enjoyable event for all those who took part. We are once again recruiting cyclists for 2017, so if you have a cycle from Malin to Mizen on your bucket list, please get in touch with us to find out more.

The fundraising target for this year's event is â‚Ź2,000 with a deposit of â‚Ź250 payable when registering to secure your place. Included in your fundraising amount will be 4 nights accommodation and your breakfast and dinner for the duration of the event. Registration forms can be downloaded from our website at www.cfireland.ie or you can contact our office on 01 496 2433 or alternatively email Peter at pminchin@cfireland.

We would encourage anyone thinking of taking part to sign up early. Don't miss out on what will be a great few days cycling from one end of the country to the other with an amazing team of cyclists all fully committed to helping raise funds to help PWCF!

All Year: Kilimanjaro CF Ireland facilitate treks to Kilimanjaro each year and there are a number of treks running during 2016. Spaces on these treks fill up quickly so if you are thinking of taking part in a trek, we advise that you book your place now.

Kilimanjaro is not only Africa's highest point but also the highest free standing mountain in the world. The 12 day itinerary includes 7 days of walking on the Machame trail, the most scenic route to the summit.

The climb incorporates seven days on the mountain which allows for acclimatisation and maximises chances of a successful summit attempt.

The route provides spectacular scenery and a wide variety of different landscapes. The sense of achievement after climbing Kilimanjaro and the view from the roof of Africa makes all the hard work and effort well worth it.

For more details and a full list of tour dates, please see our website www. cfireland.ie or contact Peter - email at pminchin@cfireland.ie, or by phone on 01 496 2433.

All Year: Skydives Will you jump for CF? A skydive has to be one of the most exciting things you will ever do in your life. Now is the chance to tick this off your bucket list, while raising much needed funds for CF Ireland. You could jump from 10,000 feet, free fall for 30 seconds before the parachute opens and take in the views like you've never seen them before.

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To get started, follow the link below to our website which contains all the details you need to make this dream become a reality. https://www.cfireland.ie/get-involved1/eventschallenges/item/178skydiveforcf Step 1: Choose your preferred location from the 3 options on our website and contact the skydive centre to book your place.

Step 2: Contact our fundraising department on 01 496 2433 or e-mail pminchin@cfireland.ie so that we can issue you with your authorisation letter and you can begin fundraising.

Step 3: Ready, Steady, Jump Step 4: Celebrate your achievement and fundraising efforts by sending us some photos or video footage of your jump for us to share with our supporters.

Both individuals and teams are welcome to take part so encourage your friends or colleagues to join in and make a day of it, the memories will last a lifetime!

ChariTY for CF Following the success of the Schools Fundraising Pack last year, CFI are delighted to announce details of the 2016 / 2017 ChariTY for CF Campaign.

The ChariTY for CF Campaign will see CFI work directly with Transition Year students nationwide, educating them about Cystic Fibrosis, informing them of how they can support CFI and providing them with advice and support on how to set up charity projects and undertake fundraising events. The ChariTY for CF Campaign was officially launched at the Transition Year Expo in September and our Fundraising Pack is available for download on our website at www. cfireland.ie.

If you are involved in or know of a school who would be interested in the ChariTY for CF Campaign, please contact Nuala on 01 496 2433 or email nmcauley@cfireland.ie for more information.

Christmas Draw Card In the run up to Christmas, CFI through our agent Adsales will be distributing draw cards to outlets that have our collection boxes. The card will have lines on sale for â‚Ź2 with a prize of a large cuddly toy for the winner. Please support if you see the draw card in shops!

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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 CF and please keep up the great work. Here is a short summary of some of the remarkable efforts of our Volunteers.

Achill Ultra Marathon CFI would like to thank Race Director, Donna McLoughlin, for all the hard work she has put in to organising the Achill Ultra Marathon and for choosing CFI as charity partner for the event. Thank you also to Gerard Fay for nominating us as a charity partner and for working with Donna around promotion of the event. The event which took place on Achill Island over 2 days on 27th and 28th August raised â‚Ź1,000 for CF Ireland.

We are pleased to say that CFI have also been chosen to be charity partner in 2017.

The event consisted of a 13 mile loop , running along the 'Wild Atlantic Way' which participants could complete once, twice or three times. The Atlantic provides a beautiful backdrop along with the islands of Clew Bay, Clare Island and the dramatic coastline of Achill.

For more information about this event check out www.achillultra.com

Paris2Nice CFI would like to say well done and a big thank you to our Paris2Nice cycling team who recently returned home after cycling over 700km from Paris2Nice.

The team began their cycle on Saturday 17th Sept and finished on Thursday 22nd September. It was a very enjoyable experience for all involved having passed through many beautiful villages and towns on quiet country roads with lovely scenery to admire along the way.

The cycle culminated with a finish along the Promenade Des Anglais where the participants were welcomed by the welcoming team and enjoyed a celebration dinner that night where they could relax and rest after a week of cycling through the stunning French countryside.

So far the team have raised an amazing total of over â‚Ź19,000 to help CFI continue to provide support and services for PWCF in Ireland. The team was made up of Enda Greehy, Neil Ryan, Brian Murphy and Art O' Hagan.

If this event is something you would like to take part in or you would like to find out more make sure to contact our fundraising team on 01 496 2433 or email Peter at pminchin@cfireland.ie 20

H2H Walk CFI would like to thank all those who registered to take part in our annual Head2Head Walk from Howth to Bray which once again proved to be a great event. Over 200 walkers left Howth at 9.00am on Sunday 25th September and made their way first to Sandymount for a well-deserved break and finally to The Royal Hotel in Bray where they could rest their weary legs.

There was great fun along the way with the walkers taking in the lovely views of Dublin Bay and its surroundings. CFI would like to give a special mention to Mary McCarroll and Jem Downes who organised this unique event and also thank you to their team of helpers.

We would also like to thank the St. John Ambulance, An Garda Siochana from Crumlin, Fyffes for providing bananas and Musgraves in Finglas for providing water.

We would like to remind anyone who has sponsorship money to lodge from the event that they can do so using the bank account details below. Please remember to add your name and 'H2H' as a reference so we can receipt it accordingly.

Cystic Fibrosis Ireland Fundraising Account IBAN: IE59 AIBK 9310 7108 5785 93 BIC: AIBKIE2D We look forward to seeing you all again next year!

Liffey Swim CFI would like to say a big thank you to Robert Clarke and fellow organisers of the annual Liffey Swim in aid of CFI. This event sees participants take the plunge from O' Connell Bridge into the waters of the river Liffey and each year they raise a fantastic amount of money for CFI. Well done to all involved for your ongoing support!

Cycle4CF - Waterford CFI would like to say a massive thanks to the organisers of the Cycle4CF event which took place on 3rd April and raised a fantastic â‚Ź9,185.45. The event was an 80km cycle which rolled out from Butlerstown GAA club on the Cork Road in Waterford with over 120 cyclists taking part. People travelled from far and wide to take part.

Although the weather made cycling difficult the participants enjoyed plenty of tasty food baked by family and friends. The organisers would like to thank all those who helped out in marshalling the event and supported it in any way, making sure it was a tremendous success.

Special thanks to the main organisers Jason and Louise O Brien and the Tipper family, Paul, Elmarie, TJ (aged 5, PWCF) and Annarose (aged 3).

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Cycle to Fanad for CF On Saturday 28th May a group of cyclists, plus support drivers and crew, cycled 160km from Derry through various parts of Donegal to Fanad Lighthouse in aid of CFI. The group was made up of Donegal men from far and wide, some travelling from overseas to join the cycle. The tired men were greeted by family and friends on their arrival back to Fanad Lighthouse.

A fantastic total of €4,723.61 was raised to support PWCF. Taking part in the cycle were: Paddy Callaghan, Declan Alcorn, Trevor Alcorn, Eamon Callaghan, Kevin Doherty, Seamie Friel, Mickey Kelly, Kevin McCafferty, Paddy McConigley, Columba McVeigh, JP O' Donnell, Brian Peoples and Frankie Sweeney.

Tour de South Roscommon The South Roscommon Cycling Club held its annual charity cycle in June in aid of Cystic Fibrosis Ireland. It was their most successful cycle to date with 160 cyclists taking part. A huge thank you to Tommy O'Brien, Club Chairperson and everyone else who helped organise and took part in the event which raised an amazing €4,422 to help CFI continue to support PWCF in Ireland.

Yes Chef Cycle Congratulations to everyone who took part in the Yes Chef Cycle for CF in May and helped raise over €5,000 to support people with Cystic Fibrosis.

The three day cycle was organised by Shane Smith on behalf of Yes Chef Ireland and saw participants cycle over 300km, taking in the sights from Lisdoonvarna to Galway. Over 50 chefs took part in the cycle and not only were they all still smiling at the end of the cycle, they came away with some great stories, new friends and magnificent memories.

Well done to the cyclists and all involved in the organisation of the event and a huge thank you for supporting Cystic Fibrosis Ireland. The cycle was such a success that plans are already underway to hold the cycle again in 2017 and what started out as a fundraising idea now looks set to become an annual event.

DCU Get Active Day Thank you to the students of the School of Health and Human Performance in Dublin City University who organised a 'Get Active Day' in aid of CFI and have raised over €340 to date. The day involved students and lecturers taking part in a number of different sporting activities and great fun was had by all. Thank you to all who took part and contributed to this event.

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Dublin City Rose Festival 65 Roses Day may have taken place in April, but the purple roses were out in force in St. Anne's Park on July 17th & 18th when CFI attended the Dublin City Rose Festival. Thankfully the sun shone brightly for the two day event which saw over 15,000 people visit the Rose Gardens in Raheny. The festival was suited to young and old with a pet farm, falconry display, gardening equipment, crafts, live music and food tasting just a few of the activities taking place.

Over €1,200 was raised at the festival to help support people with Cystic Fibrosis. A huge thank you to everyone who stopped by the CFI stand on the day to donate and show their support for people with Cystic Fibrosis. It was amazing to meet so many people in attendance with a personal connection to Cystic Fibrosis. The strength, compassion and generosity that exists towards and within the CF community was very evident at the festival.

Gowran Festival of Speed CFI would like to say a big Thank You to the committee involved in organising the Gowran Festival of Speed who recently presented a cheque for €2,337.57 to CFI from the proceeds from the day's events.

The event took place in Gowran Park and it was a fantastic day out for all who attended. There were plenty of cars, bikes and trucks on display with live demonstrations on the track. A raffle was held on the day for a chance to win a lap around the track with world rally driver Craig Breen and the lucky winner was Shane Doyle who really enjoyed the spin.

Thanks to all who were involved in organising this event and all those who supported the day.

L to R: Joe Connolly, Ellen McGrath, Mary Thompson, Glen Caulfield, Bernie Caulfield, Peter Minchin, Pat Caulfield, Rory Power, Brian Doyle, Seamus Thompson, Eddie Scally, Syl Shaughnessy

1916 Walking Tour On Good Friday, March 25th 2016 a group of 60 were lucky enough to take part in a 1916 Walking Tour led by Historian Lorcan Collins. Not only was the tour an enjoyable and educational walk, it was also a fantastic fundraiser for Cystic Fibrosis Ireland, raising over €2,800. A huge thank you to Lorcan for facilitating the Walking Tour and to everyone who took part and helped make the event a success.

CFI were delighted to welcome Lorcan to CF House during the summer and took the opportunity to present him with a 1916 Commemorative Frame in recognition of his fundraising and support for CFI.

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Tony Donoghue Memorial Moone 10k Cystic Fibrosis Ireland were honoured to be selected as one of two charity partners for the Tony Donoghue Memorial Moone 10k which took place on Saturday September 10th.

Tony Donoghue was an inspiration to many, proving that it's never too late to get fit. Having recovered from a serious illness, he took part in the first of his fourteen marathons at the age of sixty five. In 2010 he founded the Moone Kilomarathon and 10k. The Moone Kilomarathon was the first in Ireland, a 'metric marathon' of 26.2 kilometres (16.3 miles) rather than 26.2 miles. Over the past 6 years the event has raised thousands of euro for charity. Sadly Tony passed away in May 2015. To commemorate Tony, the 2016 10k was held in his memory and renamed the Tony Donoghue Memorial 10k. In keeping with Tony's generous nature, proceeds raised through the event were donated to charity.

In testament to Tony's memory, the event was a resounding success with nearly 200 people taking part. Congratulations to all who took part and to the organisers who ensured it was a fantastic event.

Journeymen Adventures - I2I Cycle On July 8th Darragh Grace, Sean Cheasty and Chris Breheny returned to a hero's welcome in Tramore following a gruelling six week cycle from Istanbul to Ireland. It was all for good causes as the students undertook the cross-continent cycle in aid of Cystic Fibrosis Ireland, The Irish Cancer Society and Pieta House.

Despite a rocky start with some bike trouble, Chris, Darragh and Sean were all smiles upon their return and shared some highlights of their trip including watching Kilkenny and Dublin battle it out in Budapest, enjoying 24 hour bakeries in Serbia, supporting Ireland in Euros in France (well-timed lads), experiencing different cultures, meeting new friends and enjoying the generosity of people who supported them on their journey with free meals, drinks and accommodation.

3,700km, 40 days, 11 Countries and 8 capital cities later, three tired students can now enjoy a well-deserved rest.

A huge thank you to Chris, Darragh & Sean for supporting Cystic Fibrosis Ireland and congratulations on the amazing trek.

Rothco - Cannes Festival Congratulations to Rothco who finished in 3rd place in the Straight8 film making competition at Cannes Film Festival in June. Part of their prize was a â‚Ź1,000 donation to a charity of their choice. CFI were delighted to be chosen by Rothco as their chosen charity to benefit from this donation.

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Spectrum | Autumn 2016

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CFI Christmas Cards 2016 Mixed Pack – 4 designs x 2 (8 Cards)

Single Design Packs - 1 design x 8 (8 Cards)

Branches: Please order via order forms sent to each branch Public: Please order via our website www.cfireland.ie

Cystic Fibrosis Ireland t: +353 1 496 2433 24 Lower Rathmines Road f: +353 1 496 2201 Dublin 6 e: info@cfireland.ie

Ireland w: www.cfireland.ie

Company Reg: 449954

Charity: CHY6350 26