Spectrum Winter 2017

Spectrum

Winter / 2016

È Orkambi & Kalydeco: Update È Lee Harnett, Race of Life È Story of Daniel Diskin, PWCF È Fundraising Updates È Calendar of Events 2017

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Foreword As we head towards the close of 2016, it is welcome news that the HSE and Vertex have re-entered negotiations on Orkambi. Well done on all who contributed to campaigning on this issue in recent weeks - it is a fantastic joint effort. We will be watching developments closely and will keep our members fully informed. Don't forget to check the news section of our website for regular updates.

CFI notes that Orkambi has recently received the 'Drug Discovery of the Year Award' award from the British Pharmacological Society and the French 'Prix Galien' award for the most promising rare disease medicine in 2016. We further note that on the 19th of December, Germany approved Orkambi for the 2000 patients with CF who stand to benefit from this drug. CFI calls again on Vertex to significantly reduce the cost of Orkambi and likewise for the HSE to make significant additional efforts to reach an agreement that is fair to all, in particular people with CF. 'We further call on the HSE to approve the extension of Kalydeco to 2-5 year olds as soon as possible'

The formal opening and the celebration of the new CF inpatient and outpatient floors in University Hospital Limerick are matter of great pride to CFI, particularly the three CFI branches (TLC4CF) that have been at the heart of this project. The capital costs of the project (â‚Ź5.2m) was raised by charitable donation, including from the JP McManus Pro Am Fund, which demonstrates once again that we are 'willing to do our bit' in a very constructive way to contribute to better CF services throughout the country.

The most pressing problem other than access to new therapies remains the shortages of clinical staff across many major CF centres. If this issue is not resolved it may in part undermine the advances we have made in terms of new facilities and it will increase the risk factor in delivering CF services by already overloaded and overworked CF clinicians and their teams. CF will continue to focus on this challenge in 2017.

Merry Christmas and season's greetings!

Philip Watt (CEO) Samantha Byrne (Editor)

Front Cover: Protest outside Leinster House on 7th December for Orkambi with Jillian McNulty speaking to a crowd of around 3000 people.

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CONTENTS Latest News | 2Ñ3

Spotlight | 6-10

È Orkambi and Kalydeco; progress to date È Hospital Update

È Lee Harnett, Race of Life È Daniel Diskin, Perseverance, Positivity & Progress

Information | 4-5 È Exercise Grant 2017 È Opening of Limerick Unit

Fundraising | 11-24 È Challenges and Events È Thank You È Report of Portugal Walk 2016

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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Latest News Orkambi and Kalydeco: Progress to date The battle for Orkambi and Kalydeco.

Where are we at now?

Orkambi: Following sustained pressure from the CF community, including CFI, the HSE and Vertex agreed to enter into new negotiations on the 7th of December. The first of what is likely to be a series of meetings took place on the 14th of December and a further meeting is likely on the week beginning the 19th of December. As of 15th December, no decisions have yet been reached. It is estimated around 550 CF patients in Ireland stand to benefit from Orkambi. These are people with CF 12 years and over that have the relevant genotype which is 2 copies of the F508del gene alteration (the most common CF gene alteration in Ireland and worldwide).

Extension of Kalydeco to 2-5 year olds: It has been further agreed that negotiations will begin on the reimbursement price of the extension of Kalydeco to 2-5 year olds, which impacts on 18 children with CF in Ireland.

This is part of the ongoing negotiations with Vertex and as of the 15th of December, no decisions have yet been reached.

How long will the negotiations last?

We don't know yet. CFI are urging both the HSE and Vertex to conclude the negotiations as soon as possible. It is important to find a balance between urgency and getting a workable and sustainable agreement. As with all negotiations, there needs to be give and take and CFI have urged that negotiations should not be undertaken over the airwaves.

Is the HSE right in saying Orkambi only impacts on 25% of the eligible group of patients?

No: The HSE has persisted in stating over the past 2 weeks that only those who have experienced a 10% increase in lung function are those really benefitting from Orkambi (which they estimate at about 25% of the eligible CF population). CF is a multi-organ and multi-dimensional disease and as well as lung function, other issues such as exacerbations, slowing the progression of the disease, weight; general health gain and improvement in life quality should also be taken into account. Further, a 3-4% increase in lung function can make a significant difference in terms of health gain, especially over time and compared with someone not on Orkambi.

Is CFI right to emphasise the importance of exacerbations in measuring the impact of Orkambi?

Yes: Exacerbations are the worsening of CF resulting in hospitalisation.

Orkambi has shown a 40% decrease in exacerbations. Our view is backed up by hard scientific evidence. For example Dr DB Sanders et al have demonstrated in a widely respected research article that 25% of CF patients do not recover their baseline lung function once they have had an Spectrum |Winter 2016

exacerbation. CFI has urged the HSE to take these issues into account.

Why are drugs for rarer diseases so expensive and why do they get turned down?

Innovative and effective drugs for rare disease (usually referred to as orphan drugs) are often expensive to produce and, by definition, will benefit only small numbers of patients. After assessment, few orphan drugs get close to meeting the cost effectiveness criteria for funding that healthcare providers (such as the HSE/NCPE) use for general drugs. This is a problem that is not confined to Ireland.

What about the expensive salaries to CEOs of pharma companies?

Our members will not be surprised when we tell them CFI can't sort out world pharma-economics, including the outrageous salaries of the CEOs of most major pharma companies. We are, at the end of the day, a patient group trying to get important new therapies for our patients and their families. CFI have been and will remain very critical of such salaries as highlighted again by CFI ambassador Joe Brolly on the recent Claire Byrne Show and in a Sunday Independent article. Note for information: The following bio-pharma companies pay their CEOs more than $20m per annum: Regeneron: Vertex: Allergan; Bristol Myers Squibb; Merck; Celgene; Pfizer and Abvie. In short the issue of high CEO salaries is a systemic problem in the bio-pharma industry.

Surely there has to be a better way of dealing with CF and other rarer disease drugs?

The Rare Disease Taskforce that brings together many key nongovernment stakeholders, in particular the members of MRCG; IPPOSI and GRDO. We work together with many other patient groups to seek to implement the Government's National Rare Disease Plan.

Recommendation 30 of the Plan acknowledges the problem of accessing rare disease (orphan) drugs and proposes the review of the existing and the consideration of a new process. We will continue to press for this recommendation to be implemented as soon as possible.

CFI will continue to keep our members informed about further developments including further concerted action if necessary.

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Information Exercise Grant Scheme 2017 Round 1 of the Exercise Grant Scheme will open for applications from 16th January to 10th February.

• Application Form: The Application Form must be completed, signed and returned to CFI by the deadline stated. The Parent/Guardian must sign on behalf of individuals under 16 years of age. The Exercise Grant 2017 Policy & Guidelines should be read thoroughly before completing the Application Form. The Application Form and Policy & Guidelines are available for download under the 'Grants and Support Services' section of www.cfireland. ie, or can be requested directly by contacting the National Office from from 3rd January • We aim to issue successful applicants with the grant within 3 weeks. Should you wish to find out whether you have been successful in securing the grant before this period, please call us in the National Office.

Unsuccessful applicants will also be contacted within two weeks of receipt of an application.

Full terms and conditions are available on www.cfireland.ie Any questions, please call Sam Byrne on 1890 311 211

Special Reception marks the opening of the new adult CF inpatient and outpatient units in Limerick In 2008, the CF branches in Tipperary, Limerick and Clare set out on a journey to improve services for people with CF in the mid-west region and this partnership became known as TLC4CF. Formed at a time when CF services in Limerick can only be described as far less that adequate, TLC4CF set out to develop adequate facilities and specialist services for CF within University Hospital Limerick.

Since then TLC4CF, with the whole-hearted support of Cystic Fibrosis Ireland, have raised over €6 million euro to invest in the construction of a new specialist adult CF inpatient and outpatient unit in University Hospital Limerick. Investment has also been made in equipping the Paediatric unit, improving psychology services and stimulating research.

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The Minister for Health Mr. Simon Harris officially opened the Leben building (which houses the new CF floors), earlier this month. To celebrate this achievement, CF Ireland and TLC4CF hosted a special reception to thank local CF branches and supporters who have worked tirelessly on this project. The event was attended by around 200 family representatives of people with CF in the region, along with a huge number of dedicated volunteers and fundraisers.

Philip Watt, CEO of Cystic Fibrosis Ireland spoke movingly at the event about the "sheer energy and determination of the volunteers who helped to push this project over the line".

A special 11 minute video was produced for the occasion which features images from the unit plus the uplifting testimony of PWCF Luke Bolland and Carol Brady, who are both Limerick service users.

The Chairperson of TLC4CF Owen Kirby, ended the formal presentations by encouraging people to get involved in their local branch and TLC4CF. He said "A concerted effort, a clear goal and a partnership approach can lead to significant healthcare rewards. We want to leave a wonderful legacy for people with CF who continue to inspire us".

Pictured at the Launch were: (left to right) Philip Watt CEO CF Ireland, Marcella Clancy, Owen Kirby Chairperson TLC4CF, Dr Michael J Mahony, Liam O'Kelly, Siobhan Mc Nulty, David Fitzgerald CF Ireland, Caitriona Hayes.

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Race of Life

By Lee Harnett, PWCF From as early as I can remember I was always treated as a normal child by my parents and never restricted in what I could do by Cystic Fibrosis. As a young kid, I always thought everyone had the same routine of physio and medications in the morning before going to school. It was only as I grew a little older I noticed that my close friends did none of the regular treatments I did. From the very young age of four, I questioned why my friends didn't have to take the same tablets as me when they ate their lunch in pre-school. I always knew I was different but I was too young to fully understand what made me different and whether it was a bad thing or not and to be totally honest I liked being different.

I had quite an adventurous childhood trying out different clubs and sports.

Firstly, I joined the local GAA team and I played and trained with them every week for about two years however I didn't feel that was really for me so after a while I joined the Balbriggan scout group to give something new a shot and to this day I will never forget the trips and experiences I had with the Scouts.

During my time in the Scouts with my interest in the outdoors I decided to try raise funds for Cystic Fibrosis by climbing Carrauntoohil, the highest mountain in Ireland. Joining the Scouts was one of the best things I decided to do even to this day but given the phase I was going through things became boring for me very quickly so I took up skateboarding which I stuck with for a good few years. The skateboarding gave me a sense of

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uniqueness and it was brilliant for the Cystic Fibrosis as it was extremely physical I would come exhausted from a day out on the skateboard but always feeling great. In a way, I always liked being different so the CF never really bothered me in a sense of being different to others. Skateboarding is a unique and odd sport and I was comfortable with that. I qualified for the all-Ireland skate finals in Cork in 2013 and after that I turned my attention to what I do now and that is Motorcycle racing.

I spent 2013 and 2014 in and out of hospital so I took time over the 2 years to learn how to ride a bike which wasn't easy but I had my dad Stephen Harnett there from North Dublin Motorcycles, one of the countries best technicians and mechanics when it comes to racing and understanding motorbikes. He was by my side every single step of the way. I always found it difficult racing against the other competitors as they all came from a racing background. I was the outcast coming from a history of skateboarding, not even remotely close to racing motorbikes but I gave it a shot and I turned out to be not too bad at it, as I proved in the following years. The higher the competitiveness got the more it tested my level of fitness and ability. One thing about motorbike racing not a lot of people know is you must be extremely fit and healthy to perform well and wrestle the bike around the track constantly for 20-30 mins at any one time. Preparing for racing also complemented my treatment for CF as I was motivated to train harder so I could improve on my racing, this came with improved health and me feeling better however it didn't last forever.

hospital. I was happy with the time of 59 minutes as it was my first ever 10k run and I had done no preparation or training. My first race on the new bike went well as it was my first time at the track in question and we came home with the 'Rider of the Day' award which I was over the moon about. It was amazing to be selected for something like that on the first run out. As the year went on the racing got tougher but we got to travel the length and breadth of the UK visiting new tracks and making new memories.

In 2015 I had a rough year in and out of hospital. At this stage racing was in my blood and it was like an infection I couldn't shake. Racing motorbikes was my motivation to get better and get out of hospital, I got to the stage where all I did was eat sleep and breathe (when I could) bikes. With construction work happening in my school at the time, the high levels of dust aggravated my lungs and sinuses and caused numerous infections. This was my leaving cert year so I couldn't afford to miss school.

Even though I missed quite a lot of time in school I still sat my exams, even sitting the first bit in the hospital as I was in at the time for an admission.

After finishing my exams in June, it was time to go racing again and I was ready to go as I had been held back all year because my parents and I had an agreement - no racing until exams were done! I started the year off to a storming start and finished my first race in 2nd place. 2015 summed up to be an extremely successful year for me as I achieved my first ever win and then a 3rd place finish racing in the extremely competitive Thundersport championship in the UK. I cannot express how happy we were as a team to have achieved that in our last race that year.

2016 was a new year and a new challenge, with the move onto a bigger bike and racing full time in the UK. The year ahead was going to be extremely challenging for myself and my team. My first race of this year had no engines included as I part took in a 10k run for Cystic Fibrosis in Duleek in April only one week out of the Spectrum |Winter 2016

Although with all its good things, racing comes with its occupational hazard of falling off and it seemed to be my time only a short while after I came out of hospital from an admission which wasn't ideal. As I like to describe it 'I didn't crash, I ran out of talent' however, this resulted in another admission shortly after I returned home as I had bruised my ribs and back and could not do proper physio and clearance. I had been asked numerous times would I not consider stopping or give it a break for a while but I don't see a life without bikes. At the moment I am sitting here thinking about going racing as we are now in the off season and don't start again until March. It's always a long tough Winter of waiting and everybody I know hates it so I like to try get my fix on mountain bikes or anything dangerous with two wheels really. Now in my off season after taking a year out of studies I am back studying in college in Dublin and I'm loving every minute of it. It's a new experience and something different.

I know not one single trophy or medal would be in my cabinet at home if it wasn't for the support and guidance of my Dad. He keeps the wheels turning every weekend and now that my brother has started racing it has turned into a family affair. My Dad looks after the bikes, my Mam looks after everybody and their appetites and my girlfriend Katie looks after me, helping me with anything that needs to be done and most of all listens to my crap all weekend. We are extremely lucky to have support from friends and personal sponsors because this is an expensive sport to part take in and none of it would be possible without their help. Also, whether they realise it or not the CF unit in St. Vincent's hospital are probably one of the most important parts of our team because they're my biological mechanics they make sure my body is in good working order before letting me out on a bike of any sort.

I've learned that we're not here forever but we might as well make the most of what we've got and right now I am living the dream!

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Perseverance, Positivity and Progress

By Daniel Diskin My name is Daniel Diskin and I've had Cystic Fibrosis for the last 22 years. I'm a third year physics and applied physics student in NUI Galway and I'm from a small village in Connemara called Cornamona.

I was diagnosed with CF at three months old (judging by the looks of the baby picture, I didn't seem to mind at all!). The early diagnosis meant that I had minimal health problems and had a great chance at remaining healthy. In the beginning I had very little healthrelated issues, apart from taking enzymes while eating. Primary school and secondary school were fairly normal apart from having 2 surgeries for chronic sinusitis that was affecting my lung function. It wasn't until I was second year in college that my health started to become a bigger problem. As it stands, I've been in hospital for IVs four times in my entire life.

Currently I'm repeating third year due to me contracting a severe chest infection along with the flu resulting in a two and half month stint in hospital in February. I lost over a stone in weight and I was around 55kg in weight. I had to go on a lot of meds and IVs to help my system fight the infection. I was then put on a nebulised med for pseudomonas which thankfully was cleared after a month. Due to further cautionary measures my friends and family were prevented from visiting. I was then released from hospital at the end of March and decided that the best way to keep my health in check was to set about establishing a good health routine and build college and work around it. So I decided to defer the second semester of college and go back and repeat the year come September, therefore Spectrum |Winter 2016

establishing a stable foundation for my health.

Ten months of hard work and strict routine later, I'm 70kg in weight, the heaviest I've ever been, with a lung function of 84% and re-sitting my third year exams at the moment. I barely cough at all anymore and I have the energy to go to college and work a part time job.

Of course, my routine wouldn't have been effective without the help of my CF team in UCHG, Dr. Michael O Mahony, CF nurse Orla Fox, Physio Irene Maguire, Dietician Fiona Curley, not to mention the Cystic Fibrosis Ireland and the head of the western CF branch Mary Lane Heneghan. Without their fantastic support, I wouldn't be where I am today in terms of my health.

The amazing fundraising done by the CF hospital project in Galway paved the wayfor the establishment of a three-room CF unit in UCHG. At the moment, the future of many CFs and their battle with their bodies seems under threat in Ireland due to the ongoing negotiations on the funding of Orkambi, the lifesaving drug for people with the most common genotype of CF. I, myself am a carrier of the gene and this drug would make my CF easier to handle. I can't begin to think of the dramatic improvement this drug would make on someone currently in hospital on IVs or on a transplant list waiting to be called. The stats speak for themselves, less hospital admissions, improved lung function, improved weight gain and an overall better quality of life for CFs all around the country be they going to work, college, in hospital or otherwise. While I know negotiations are ongoing and have been for the last few months, I'm positive that Vertex, Minister Simon Harris and the HSE will come to some agreement to the pricing of this life-saving drug and I'm sure they won't leave it on the shelf, where it'll do neither side any good.

In the future, I hope to pursue a career in biomedical engineering and research and develop medical devices and applications to help improve those suffering with ailments, CF included. Growing up around and in the hospital has shown me how difficult illness can be to deal with and what needs to be done to help those suffering which is why I chose to pursue a career that will make a difference to those in need. My uncle 9

Michael Coyne also suffered from CF and died in 2002 due to cepacia. While he was to have a lung transplant over in Newcastle a few years before he passed away, he was unable to receive it due to his white blood cell count being raised the night before. While he suffered more than me with his CF, he was full of life and had a fantastic sense of humour that would leave you breathless from laughter (pun intended)! He was a great mentor to me in terms of teaching me how to deal with my condition and to this day I still take his teachings to heart.

However due to cross-infection, I was unable to be around Michael and the closest I got to seeing him before he passed away was a thumbs up and a smile through a hospital window. Since Michael's passing, his words of wisdom and determination to live life to the fullest still rings true in my mind and further drives me to maintain a healthy routine. The drive to get up every morning be it sun, rain or snow (let's be fair, it's mostly rain) and do physio, nebulisers, take meds, focus on weight gain, exercise, all the while juggling all of

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life's challenges that it decides to throw at you that day. Every CF has their vices, their challenges, their drive and while it seems easy just to leave that extra session physio in the evening or forego that nebuliser in the morning, you're only kidding yourself if you think it's not going to impact you down the road.

Like many with CF, my mind is cast towards the future a lot, in terms of where I'm going and what I'm doing.

The best way to look at it is, it's only going to get better from here. We've a lifesaving drugs within grasp, CF's quality of life has improved hugely over the last few years and it's only going to keep going up and we've fantastic support all around the world. To anyone that reads this, be they a CF patient, a parent with a CF child or someone that knows about CF through friend or family, the future is bright for people with Cystic Fibrosis and it's seen in every CFs fighting spirit and our stubbornness to continue fighting no matter what, to live our lives.

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 April 13th: 65 Roses Day - National Fundraising Day for Cystic Fibrosis Ireland Cystic Fibrosis National Awareness Week takes place from Monday 10th April to Sunday 16th April 2017. We are looking for support to help raise funds and increase awareness of Cystic Fibrosis throughout the country.

There are 3 ways you can help support PWCF during CFI National Awareness Week.

1)

65 Roses Day - Thursday 13th April

65 Roses Day is our National Flag Day and our emblem, the CF Purple Rose will be on sale across the country for just €2. We are looking for volunteers to help sell our purple roses in every county. If you can help us, please get in touch by e-mailing fundraising@cfireland.ie. We will be working closely with our CF branches to ensure everyone can buy a rose on 65 Roses Day, with the campaign supported on TV, Radio, Press and Social Media.

2)

65 Roses Challenge

You can organise your own fundraising challenge to help raise funds and support PWCF during National Awareness Week. The challenge can be any kind of fundraising event with a 65 theme. Previous examples include a 65 Roses Tea Party, 65 exercises in 65 minutes, staff walking 65 laps of the office or even schools holding a 'Purple Day' in school. It can be as simple or as challenging as you wish. If you need any help or support with your fundraising event then please email our fundraising team at fundraising@ cfireland.ie. Further details available on www.cfireland.ie 3)

65 Roses Text Donate

Support our 65 Roses Text Donate campaign and Text 65 Roses to 50300 to donate €2 to Cystic Fibrosis Ireland or donate online at www.cfireland.

Please SHARE with your friends and work colleagues.

100% of your donation goes to CFI across most network operators. Some operators apply VAT which means that a minimum of €1.63 will go to CFI. Service provider: LIKECHARITY. Helpline 0766805278.

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April 14th: 65 Roses Skydive Challenge CFI are delighted to announce that we will be holding our 65 Roses Skydive Challenge on Friday 14th April in The Irish Parachute Club, Clonbullogue, Co. Offaly. Our aim is to get 65 people to take to the sky and jump for CF as part of this 65 Roses Challenge.

The cost of registration is €20 with a fundraising target of €500 due by Friday 31st March. Registration forms can be downloaded from our website www.cfireland.ie or contact our office on 01 496 2433 or e-mail Peter at pminchin@cfireland.ie Family and friends are encouraged to come along on the day to show their support.

April 14th: The Michael Collins Walking Tour Following the success of the 1916 Walking Tour in 2016, CFI are delighted to announce another Walking Tour fundraiser in collaboration with historian Lorcan Collins. The Michael Collins Walking Tour will take place on Good Friday, April 14th.

Michael Collins Walking tour will begin at Trinity College and visit numerous sites associated with Michael Collins, taking approximately two hours at a gentle to moderate pace.

The tour will cost €25 and places ware limited to 60 participants.

Registration for the Michael Collins Walking Tour is now open online or you can book through the office by phoning Nuala on 01 496 2433 to request a booking form.

Places will be allocated on a first come first served basis, so book now to ensure you do not miss out on this unique event.

April 23rd: Virgin Money London Marathon There are a limited number of guaranteed places left for the Virgin Money London Marathon 2017. If you are interested, you need to sign up now to secure your place. The marathon will take place on Sunday 23rd April 2017 and is one of the world's greatest sporting events.

If you would like to book a place then please contact our fundraising team on 01 496 2433 or e-mail Peter at pminchin@cfireland.ie.

The remaining places will be allocated on a first some first served basis!

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May 11th to 14th: Malin2Mizen Cycle4CF CFI are delighted to announce details of the 2017 Malin2Mizen Cycle4CF, a national fundraising event for CFI, to raise funds to help people with Cystic Fibrosis, which will take place from Thursday May 11th to Sunday May 14th.

Registration for Malin2Mizen Cycle4CF 2017 is now open. The fundraising target to take part in the cycle is €2,000, which covers your entry in the cycle, accommodation and food over the four days. To secure your place you must pay a registration fee of €250 before Friday 27th January and the balance payment of €1,750 is due by Friday 05th May. Please note accommodation is on a shared basis in twin rooms. There will be limited availability of single rooms. A single room supplement of €30 per night will apply. Below are details of the route for 2017.

Day 1: Malin Head - Bundoran Day 2: Bundoran - Oranmore Day 3: Oranmore - Charleville Day 4: Charleville - Mizen Head You can register online at www.cfireland.ie or alternatively call our office on 01 496 2433 for a registration form to be posted out to you or email Peter at pminchin@cfireland.ie.

June 5th: One in 1000 - VHI Women's Mini Marathon New Year, New Challenge!

Cystic Fibrosis Ireland are looking for 1,000 people to take part in the VHI Women's Mini Marathon on Bank Holiday Monday, June 5th. Although registration for the Mini Marathon is not open yet, it is never too early to save the date or indeed put your team together.

The 10km route is suited to all levels of fitness so whether you are a running rebel or a walking wonderwoman you can take part. Open to females aged 14 and over, the event attracts over 40,000 participants annually.

The One in 1,000 Campaign is the largest National Fundraising Event for Cystic Fibrosis Ireland. The core idea behind the campaign is that One Person can make a difference. If one person could recruit 10 participants to join them in the Mini Marathon, and those 10 participants in turn recruited 10 more people = 100 participants. If those 100 then recruited 10 people = 1,000 people participating for Cystic Fibrosis Ireland. The Campaign has been hugely successful with over €900,000 raised since it began in 2010. Help us make this €1 million in 2017!

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However, One in 1,000 is much more than a fundraising event, it is a community event that brings together supporters of PWCF from across the country. As past participants will tell you, the atmosphere on the day is fantastic and with a great team surrounding you, you don't feel the time or the kilometres go by. CFI provide the best of facilities for participants on the day including a cloakroom, refreshments and a base to come to before and after the 10km to soak up the atmosphere and celebrate your achievement.

We would love to have you take part! Individuals are always welcome to the One in 1,000, but it is always great to have some familiar faces with you so why not round up your friends, family or colleagues and ensure you bring a team of 10 people with you? In 2016 we saw an increase in the number of branch, corporate, family and memorial teams taking part. If you are interested in registering a team or would like more information on how to start a team, please contact Nuala on (01) 496 2433 or email nmcauley@cfireland.ie So, the question is - Will you be One in 1,000 for CFI in 2017?

Remember One person can make a difference, you can be that One for Cystic Fibrosis.

For further information on the VHI Women's Mini Marathon and the One in 1,000 Campaign visit www.cfireland.ie, contact Nuala by email at nmcauley@ cfireland.ie or phone our office (01) 4962433

June 29th: Riverdance Dance A Thon CFI are delighted to have been chosen as the Charity Partner for Riverdance 2017.

The 2017 Riverdance show will run at the Gaiety Theatre from June 21st to September 3rd 2017.

As part of the Charity Partnership we are delighted to announce a Dancea-thon will take place with the Riverdance Team on Thursday June 29th on South King Street, Dublin. If you are part of a dance school and would be interested in taking part in the dance-a-thon or if you would like to volunteer at the event, we would love to hear from you - (01) 496 2433 or email Nuala on nmcauley@cfireland.ie More details of this exciting partnership will be available shortly. Keep up to date and check out www.cfireland.ie for more information.

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Sept 16th to 21st: Paris2Nice Cycle CFI are currently recruiting cyclists for the Paris2Nice Cycle 2017. This event always proves to be an incredibly enjoyable and rewarding challenge.

Cyclists will fly to Paris on Friday September 15th and begin cycling on Saturday 16th September. You will pass through many beautiful villages and towns on quite country roads as you make your way southwards towards Nice. The cycle will finish on the Promenade Des Anglais on Thursday 21st September where you will be greeted by the welcoming team followed by a celebration dinner that night.

Information evenings for this event will take place in early 2017 and we would encourage anyone interested to try to get along to one of these.

CFI will announce details of these information evenings in due course.

We would also encourage potential cyclists to register you details on the Paris2Nice website paris2nice.com where you can receive information updates.

For further information please contact Peter on 01 496 2433 or email Peter at pminchin@cfireland.ie

Sept 22nd to 29th: Paddy Kieran's International Walk The 2017 Paddy Kierans International Walk will take in the Charms of Croatia. CFI are urging people to dust off their walking shoes and sign up to take part in the 23rd International Walk and raise funds for Cystic Fibrosis.

Departing from Dublin Airport on September 22nd the 2017 Walk will start in Dubrovnik.

Croatia offers a breath-taking landscape, from spectacular mountains, to lush woodlands, to shimmering lakes. There really is something for everyone. With the help of trusted guides, this walk offers a great opportunity for people to explore one of Europe's most beautiful countries, taking in such sights as Medjugorje, Korcula Island, and the historical town of Ston. The Walk will finish in Orebic and return to Dublin on September 29th.

Dr Eddie Murphy well know TV psychologist has joined Cystic Fibrosis Ireland as ambassador for the walk in Croatia.

"Walking creates a great opportunity for lifelong wellness and friendships. Most importantly, of course, they will be helping to raise much-needed funds for supports for people with Cystic Fibrosis and their families. We know how challenging life can be for people with Cystic Fibrosis. This is your chance to do something really special to show your solidarity to the CF Community. The walk is suited to all levels of fitness, with participants walking an average of 10 kilometres each day on the week-long adventure. Come and join us in Croatia, with Cystic Fibrosis Ireland, you will never walk alone!"

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The fundraising target for the Walk is €2,980 and this will cover all costs including flights, accommodations and meals.

For more information on the Cystic Fibrosis International Walk 2017, visit www.cfireland.ie, contact Nuala McAuley on LoCall 1890 311 211 or email fundraising@cfireland.ie

Sept 24th: Head2Head Walk - Howth Head to Bray Head The Head2Head Walk 2016 was once again a great success and we hope you are already looking forward to next year's event. The Head2Head Walk 2017 will take place on Sunday 24th September. Make sure to join us on what always proves to be a fantastic day out.

The walk will begin at Howth Head at 9.00am and finish in Bray later that evening where well deserved refreshments will be available to all walkers.

You also have the option to walk half the route starting at Howth Head and finishing at Sandymount or starting at Sandymount and finishing at Bray Head.

Registration for the walk costs just €10 so please keep an eye on our website and Facebook page for registration details later in 2017. Walkers are encouraged to take a sponsor card and to fundraise whatever they can with all proceeds going to CFI to help us continue to provide services and support to PWCF and their families.

For further information please contact Peter on 01 496 2433 or email pminchin@cfireland.ie

Oct 29th: SSE Airtricity Dublin City Marathon Are you up for the Marathon Challenge?

Put your lungs to good use and run for Cystic Fibrosis Ireland in the 2017 SSE Airtricity Dublin Marathon on Sunday October 29th!

Whether you a regular runner, hoping to add another medal to your collection or a novice looking to complete your first marathon, we would like you to run for Cystic Fibrosis Ireland!

The SSE Airtricity Dublin Marathon is now the 4th Largest Marathon in Europe and is known as the 'Friendly Marathon' due to the number of supporters lining out the streets of Dublin to cheer on our participants.

Registration costs €70 and race entry is guaranteed upon payment. The 26.2 mile route is mostly flat and is a single lap which starts and finishes near Dublin city centre.

The SSE Airtricity Series includes a number of racing challenges to help you prepare for the Marathon. For further information on the Race Series, the Marathon or for top tips on training and nutrition visit www. sseairtricitydublinmarathon.ie

For further information on participating on behalf of CFI, you can email Spectrum |Winter 2016

Nuala on nmcauley@cfireland.ie, phone 01 4962433 or visit our website on www.cfireland.ie

Nov 5th: TCS New York City Marathon Registration will open in January for the TCS New York City Marathon 2016 which will take place on Sunday 5th November. This is the most popular marathon in the world and very difficult to secure a place for, so we are delighted to announce we have GUARANTEED PLACES for this event. We have a lot of interest in this event, so we encourage anyone who is thinking of taking part to let us know as soon as you can and we will provide you with full details of the Marathon package.

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

All Year: Kilimanjaro CFI facilitate treks to Kilimanjaro each year and there will be a number of treks during 2017. 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 early.

Kilimanjaro is not only Africa's highest point but also the highest freestanding 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 great 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 in 2017 please see our website www.cfireland.ie or contact Peter on email at pminchin@cfireland.ie

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 CFI. 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.

To get started, follow the link below to our website which contains all the details you need to make this dream become a reality.

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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 The ChariTY for CF pack for Schools was launched at the Schools Expo as the start of the School Year. Several schools have signed up to volunteer and fundraise for CFI in the 2016 / 2017 school year. We are also delighted to have some students join CFI on work experience.

The aim of the ChariTY for CF Programme is to increase awareness and knowledge of CF and life with the condition while also allowing students to develop and strengthen their involvement in community and charity work.

There are several ways schools can get involved from fundraising and volunteering to developing an awareness campaign as part of their Transition Year programme. Although ChariTY for CF was developed for transition year students, the pack can also be used for any level in Secondary or Primary Schools.

If you are a student or teacher who would like more information on ChariTY for CF, please contact Nuala on 01 496 2433 or email nmcauley@cfireland.ie

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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.

CFI International Walk 2016 in memory of Ita Minogue A huge thank you to everyone who took part in the 2016 CFI International Walk In Memory of Ita Minogue.

Forty people took part in the seven day trip to Portugal and raised over â‚Ź115,000 for Cystic Fibrosis Ireland. Despite walking the equivalent of two marathons in the Portuguese heat, the group returned to Dublin in high spirits and with great memories of a fantastic fundraising trip.

The Walk saw the group visit numerous sites of interest including a walk from Lagos de Pena to Sintra, a walking tour of Lisbon including St. George's Castle and Macas beach. However, the highlight of the trip was Fatima, where Ambassador Mary Duff sang and walker Monsignor Denis Reidy concelebrated Mass.

The CFI International Walk is entering its 23rd year. The success of the Walk is testament to the hard work of the participants and the Walk Committee who work tirelessly year in, year out to continue to raise funds and awareness of Cystic Fibrosis. This year saw 12 new Walkers join the group.

New walkers are always welcome and give new energy to the group. If you are interested in joining the 2017 International Walk or would like some more information, a full report of the 2016 CFI International Walk can be found on page 24 and details of the 2017 Paddy Kieran's International Walk can be found on page 15.

SSE Airtricity Dublin Marathon Sunday October 30th was a day of firsts - it was the first time the SSE Airtricity Dublin Marathon took place on a Sunday, as opposed to the Bank Holiday Monday, it was the first time the SSE Airtricity Dublin Marathon reached its capacity for participants and it was the first marathon for many of those taking part.

Huge congratulations to all who took part, in particular to all those who ran as part of Team CF. Over 55 people donned the colour purple and 'Ran for CF' travelling from all corners of the Country. To complete the 26.2 mile journey takes a marathon amount of strength and commitment and it is a fantastic achievement.

A big thanks also to the CF Cheerleaders who came out on the day to cheer on the runners at various points along the route, your support gave the participants a much needed boost.

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The date for the 2017 Dublin Marathon has been set and registration is now open so if you want to make 2017 the year of your first Marathon save the date, pop on your runners and sign up today. Every journey starts with one small step, make your next journey a marathon one!

New York City Marathon CFI would like to say a big thank to all our runners who took part in the TCS New York City Marathon in November and raised €16,985.53. This was a huge achievement for all those who took part and they really enjoyed the experience of taking part in one of the world's greatest marathon events.

The team was made up of Aishling Cawley, Jill Cullen, Darragh Mullane, Peter Logan and Joe McDermott.

Evelyn Murphy Kilimanjaro Well done to Evelyn Murphy from Kilkenny who climbed to the summit of Kilimanjaro in Africa last September. Evelyn raised €3,414.44 for CF Ireland as part of her trek. Congratulations Evelyn on a great achievement.

Paris2Nice Cycle Congratulations and well done to our Paris2Nice cycling team who completed their cycle in September. It was a fantastic event which will be remembered for a long time to come. The team was made up of Art O'Hagan, Brian Murphy, Neil Ryan and Enda Greehy. The team raised a fantastic total of €18,687 for CFI. Well done and thanks for your support.

Rummage Carlow Rummage, a pop-up high-end fashion shop, was held in Carlow town from October 19th to 29th in aid of Cystic Fibrosis Ireland and County Carlow Hospice.

The brainchild of Mary Daly and her daughter Maria, the shop was aptly named Rummage, as customers were invited to explore the range of ladies clothes, shoes, bags and accessories. The high-quality pieces, many designer or high street, were new or barely worn.

The venture involved a huge commitment by Mary, Maria and the countless volunteers who sourced, collected, priced and prepared the items for sale and indeed ran the shop over the 10 days. The location was provided by Niall McLoughlin and his wife, Elaine Curtis. It was a wonderful community effort and response from the people of Carlow town, both in the operation and support of the project.

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Rummage had previously been held in 2013 and raised over €19,000. This year, the shop was even more successful with over €26,400 raised for the two charities.

A huge thank you to Mary and Maria Daly for supporting Cystic Fibrosis Ireland in their fundraising efforts. On behalf of the Dalys and CF Ireland sincere thanks to all those who contributed and supported Rummage 2016.

Clarity CF Ireland would like to say a big thank you to the members of Clarity for presenting a cheque for €5,000 for the Beaumont Hospital Project.

Clarity are a group of students from DCU who organised a number of fundraising events throughout the year with the aim of raising funds and awareness for three charities of which CFI was one.

Pictured below are Jane Tolan, Ian Mangan, Louise Mangan, Fergus Neary and Deirdre McCarthy presenting the cheque to Peter Minchin (CFI).

Q Cafe As long standing corporate partners of CF Ireland, Q Cafe have taken part in numerous fundraising events over the past two years including 65 Roses Day and the One in 1,000 Campaign.

In addition to these events, this year they held a Q Bake Off across their stores nationwide which saw customers entering their tasty treats in a bid to win top prize! The Q Bake Off raised over €3,096.

A huge thank you to the staff and customers of Q Cafe for their fundraising efforts and continued support of Cystic Fibrosis.

Laura O'Brien, FCJ Bunclody CFI would like to say a big thank you to Laura O'Brien from FCJ Bunclody and all her fellow students and the staff in the school who recently raised €2,560.30 by holding a Purple Day in school. Everyone was encouraged to wear purple and CF wristbands were sold in the school. The staff in the school were very supportive of Laura's fundraising initiative and in particular she would like to say a special thank you to Vice-principal Brendan Daly.

Pictured in the photo below are: Frances Threadgold (Principal), Ciara Doyle, Laura O'Brien (PWCF), Keelyn Conway and Peter Minchin (CFI).

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Clearwater Pharmacy CFI would like to say a big thank you to Clearwater Allcare Pharmacy in Finglas who raised €3,853.51 for CF Ireland through a number of different fundraising events. The events included one of the staff taking part in Tough Mudder England, a Karaoke Bingo Night and also a coffee morning.

Pictured below are staff of Clearwater Allcare Pharmacy presenting Max Carberry (PWCF) and his mam Sandra with a cheque for the funds which were raised on behalf of CFI.

Rathdowney Golf Club CFI would like to thank Rathdowney Golf Club who recently presented CFI with a cheque for €1,000 as proceeds from a Golf Classic. Well done to all involved and thank you for supporting CF Ireland. Pictured in the photo: L/R Mary Harte (Hon. Secretary) Paschal Bergin (President) Peter Minchin Ed Kelly (Vice Captain) Gillian Dann (Lady Captain) Margaret Phelan (Lady Senior Captain), Yvonne Dunne (Lady Vice Captain)

Oldfield Larks Golf Society We would like to extend a huge thank you to Maureen Coughlan and the ladies at the Oldfield Larks Golf Society who recently presented a cheque to CFI for €8,750. This money was raised from a series of fundraising events during 2016 including participation by members of the Golf Society in the VHI Women's Mini Marathon. Thank you to everyone involved for a fantastic year of fundraising, which is very much appreciated and will help provide continued support for people with Cystic Fibrosis in Ireland.

Permanent TSB Cystic Fibrosis Ireland would like to say a huge thank you to Jacqueline O'Brien who nominated CFI as one of the two Charities Of The Year for Permanent TSB for 2016. Jackie not only nominated CFI but also canvassed her fellow workers to ensure we were selected as one of the chosen charities for the year.

Once we were selected, that is when the work really started for Jackie.

Leading the Staff Fundraising Committee, Jackie organised two major events during the year, The Charity Gala Ball and Strictly Come Dancing. Jackie also organised lots of smaller fundraising events from Cake Sales to selling Christmas Cards. Whenever there was an opportunity during the year, she grabbed it with both hands, to raise as much money as possible to help support people with cystic fibrosis.

We were absolutely delighted to have a cheque presented to CFI by the CEO of Permanent TSB, Jeremy Masding and staff for €121,275 on Thursday 13th October. The monies raised will be used to support areas including Spectrum |Winter 2016

Transplant support and Grants.

Thank you so much to Jackie and everyone in Permanent TSB for your amazing fundraising work over the past 12 months to help support people with CF in Ireland.

CF Stories: Cystic Fibrosis Ireland are looking for individuals to tell the stories of how CF affects your life. PWCF, Siblings, Partners, Children, and Parents - your story matters and your voice can help.

CFI carry out numerous awareness and fundraising campaigns throughout the year and require testimonials from the CF Community to ensure our message is heard. If you are interested in sharing your story of living with Cystic Fibrosis, we would love to hear from you.

Opportunities include telling your story in our Spectrum Newsletter, media interviews, press articles, photo shoots and awareness campaigns.

Fill in our testimonial application form online at www.cfireland.ie or for further information contact Nuala in CF House on 01 496 2433 or email nmcauley@cfireland.ie

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Paddy Kierans International Walk in memory of Ita Minogue Portugal 2016 Memories are made of this!

There was great excitement early at Dublin Airport on October 1st as 40 walkers checked in to depart for Portugal to walk and explore this beautiful country while raising funds for CF Ireland.

On arrival in Lisbon our tour guide Cristina met us. We realised during our week that Cristina was a wealth of information and passionate about the history of her country. Despite the early start that morning, there was no time to rest as we began our time in Portugal with a breath-taking walk along the coast arriving in Cascais and checking in to the hotel.

During our first four days our base was Cascais, a quaint fishing resort. We took in so much on these days; long nature walks on selected trails in Tapada de Mayra, visiting the Palace of Marva, a day in Sintra walking forested terrain, viewing pastel-coloured villas and palaces in downtown Sintra. We took in Quinta da Regaleira and walked to Vale dos Cavalos, visited Adraga and walked from there to Macas beach and Azenhas do Mar. It wasn't all walking though, our evenings were just as exciting and fun! We had our traditional quiz night with this year's quizmaster walker Bryan Moore and his assistant Breda Cahill. We were also delighted to visit a local Irish Bar, O'Luain's who were great supporters of the Walk and CFI providing entertainment, friendship and fundraising themselves through a sponsored Walk.

Thanks to the management of O'Luain's bar and walker Mary Barry for organising the Walk and helping to raise awareness of Cystic Fibrosis.

Our final night in Cascais was our annual awards Spectrum |Winter 2016

night. The honorary award for 2016 went to long time dedicated walker Cora McMahon. A presentation was made to Mary Duff for her support over the past three years as Walk Ambassador. The final presentation of the night was made by walkers Caroline Dunphy and Declan Flynn to Frank Minogue and Helen Lonergan, Ita Minogue's husband and mother. The 2016 Walk was held in memory of Ita following a request by the walkers. It was fantastic to have several of Ita's family and friends join the 2016 Walk to Portugal and join the Walk Community which Ita was a proud member of.

There were numerous tributes made and stories shared about Ita on the night, but perhaps the greatest tribute to her memory was the success of the Walk itself which raised over â‚Ź115,000 for Cystic Fibrosis.

On day 5 of our trip we arrived in Lisbon, following a detour to allow us to visit Obidos and then on to the highlight of the week which was Fatima. We were blessed that during our time in Fatima, Monsignor Denis Reidy, a walker in our group was invited to participate in a Mass and then to have Mary Duff, Walk Ambassador sing in the service. It was such a beautiful emotional mass, whereby as a group we took time to remember all our friends from the CF Community who passed away during the year.

We enjoyed a full day walking the city of Lisbon, visiting Saint George's castle with amazing views over this lovely city. On our final day we walked along Praca do Comercio, Cais do Sodre and along the river to Belem tower. We visited the Monastery of St Jerome which is the burial place of many including the great Portuguese explorer Vasco da Gama.

As a fitting end to a fantastic fundraising Walk, our final night was a Gala Dinner in a local restaurant.

All walkers received a momentum to remind them of this great time in Portugal. We have to mention the excellent cuisine in Portugal, it nurtured our taste buds!

Returning to Dublin on October 8th, spirits were high and excitement was high as plans were already underway for the 2017 Paddy Kieran's International Walk.

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CALENDAR OF FUNDRAISING EVENTS 2017 April 13th (Thursday) 65 Roses Day - National Fundraising day for Cystic Fibrosis

14th (Friday) 65 Roses Skydiving Challenge - 65 participants to Skydive for Cystic Fibrosis 14th (Friday) The Michael Collins walking tour

23rd (Sunday) Vigin Money London Marathon

May 11th to 14th

Malin2Mizen Cycle4CF

June 5th (Monday) One in 1000 - VHI Women's Mini Marathon (1,000 participants) 29th (Thurs)

Riverdance Dance a Thon

September 16th to 21st

Paris2Nice Cycle

22nd to 29th Paddy Kieran's International Walk 'Charms of Croatia' 24th (Sun)

Head2Head Walk - Howth Head to Bray Head

October 29th (Sun)

SSE Airtricity Dublin City Marathon

November 5th (Sun)

TCS New York Marathon

All Year

Skydives Overseas Challenges eg. Kilimanjaro ChariTY Fundraising Park - Schools

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

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 Spectrum |Winter 2016