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Spectrum

Summer / 2016

È Orkambi: Progress Update È Review of ECFS 2016 È Introducing Rory Tallon, CF Advocate È New Chairperson of the NEC È Photos of CFI Conference 2016 Spectrum | Summer 2016

Foreword Hope you are enjoying the summer and have recovered from the amazing journey of Ireland in the Euro 2016 in France. They certainly did us proud! It is an anxious period for about half of the people with CF in Ireland and their families as we await the outcome of negotiations between the HSE and Vertex in respect of the reimbursement of the important CF drug Orkambi. We have called on the HSE to enter into meaningful negotiations and to adopt a creative approach and we have called on the same from Vertex, with the strong additional message that they seek to significantly reduce the cost of Orkambi. On Thursday 30th June we met with Minister for Health, Simon Harris to urge a rapid and fair resolution that will result in access to Orkambi for all with 2 sets of the Del F 508 gene alteration.

Readers of Spectrum will know that understaffing in CF centres is a major problem. We have highlighted this issue to Minister Harris at our recent meeting.

Measures also need to be taken to sustain the success of the lung transplant programme in the Mater. It is completely unacceptable that 7 badly needed pre and post-transplant rooms in the Mater Hospital lie idle because of lack of staff. We welcome the commitment to bring in soft opt out organ donation in the Programme for Government. This needs to be enacted as soon as possible.

Finally, many thanks to Minister Finian McGrath TD and his efforts to secure badly needed additional CF inpatient rooms in Beaumont Hospital which is also in the Programme for Government and many congratulations to Professor Gerry McElvaney who has been appointed Professor of Medicine in the Mater Hospital, which opens up the potential of greater synergies on CF care between Beaumont and the Mater.

Philip Watt CEO Philip Watt (CEO) Samantha Byrne (Editor) Front Cover: Nuala Carey promoting One in 1,000 Women's Mini Marathon for CFI

CONTENTS Information | 7 - 10 Latest News | 2Ñ3 È Orkambi: Progress to date È Hospital Developments

Research | 4Ñ6 È ECFS 2016 - Review by Christina Kenny

È What is Salt and why do we need it? È Rory Tallon - New CF Advocate È Community Cross Infection

Spotlight | 11 È Patricia Duffy-Barber, Chairperson

Photos | 12 - 15 Fundraising | 16Ñ29 È Challenges and Events È Fundraising calendar

DISCLAIMER: The views of contributors, when expressed in this publication, do not necessarily reflect the position or policy of Cystic Fibrosis Ireland. Spectrum | Summer 2016

Latest News Orkambi: Progress to date We met the Minister for Health, Simon Harris TD on Thursday 30th June to discuss a range of issues including access to Orkambi and other CFTR drugs; the continuing critical shortages in staffing levels for CF care and the need for further resources to sustain progress in the CF lung transplant programme. The HSE is presently in negotiations with Vertex on price to see if a compromise can be reached following the soft 'no' decision to Orkambi by the Irish government at the end of May. There is a significant gap between the price that Vertex is seeking for Orkambi (which is even more than the UK) and the value that Orkambi has been assessed by the NCPE. We have urged both sides to find a compromise on price to make this important drug available to our members as soon as possible. It should be noted to date that across Europe, no EU country has agreed a reimbursement price for Orkambi. In France and Germany, patients have access to Orkambi for one year until the health authorities negotiate a price, but other than this automatic temporary access, the only patients on Orkambi across Europe are those who took part in the clinical trials and those small number of patients who have been prescribed the drug on compassionate grounds. The key sticking point is around price as all EU governments have recognised the clinical benefits of Orkambi (including in Ireland). Dr Ed McKone from SVUH is one of the main authors of recent research that demonstrates 'Evidence for Reduced Rate of Lung Function Decline and Sustained Benefit With Combination Lumacaftor and Ivacaftor [Orkambi] Therapy in Patients (pts) â‰Ľ12 Years of Age With Cystic Fibrosis (CF) Homozygous for the F508del-CFTR Mutation'. This was not available at the time Vertex submitted their application to the NCPE but it has been brought to their attention. http://www.rare-diseases.eu/wp-content/uploads/2013/08/UVRTX3766_ Konstan_105_ECRD-2016_052516d1_26May_Final.pdf CFI notes that Ireland has among the highest percentages of people with CF in Europe with the genotype that can benefit from Orkambi. Over 50% of the CF population in Ireland have the F508 del Homozygous (2 sets) gene mutation compared with an average of 42% across the rest of Europe (European CF Registry).

YesOrkambi Many congratulations to Bernie Martin and all involved in the YesOrkambi campaign. This is an independent initiative by parents. 2

CFI support for key clinical positions in Cork University Hospital and Mater Hospital The board of CFI has agreed to a 2 year support for critical posts of national importance in Cork University Hospital (0.5 WTE Consultant for the adult programme) and the Mater Hospital (1.0 WTE specialised post-transplant CF care nurse and 0.2 WTE Psychologist). This funding is a reflection of the critical nature of understaffing in our many centres which we are highlighting to government. Both hospitals are submitting business plans to government to seek to ensure that these and other posts are mainstreamed (government funded).

Cavan and Waterford Projects The Waterford and Cavan paediatric gym and in-patient projects are proceeding well and should be completed on time. Many thanks to the work of the Cavan branch of CFI and the branches in the South East, in particular the Waterford Branch for their support for this project.

Governance and Transparency: CFI Making a Difference

Financial Report 2015

Please note that the CFI Audit and annual report for 2015 are now available on our website. We have also published an impact report for the years 2014 and 2015 which provides an 'easy guide' as to how CFI has 'made a difference', in partnership with key stakeholders including our excellent and hardworking clinical teams; our branches and all our many friends and supporters. https://www.cfireland.ie/latest-news-feed/334-latest-annual-impactand-financial-reports

1 in 1,000 Many congratulations and thanks to all that took part in the Women's Mini Marathon in June of this year and to all those involved in recent fundraising (see final section of Spectrum). We more than reached our target of 1000 runners. Thanks to the CFI fundraising unit and to all the branches for their support and coordination!

Spectrum | Summer 2016

Research Review of ECFS 2016 in Basel, Switzerland by Christina Kenny The atmosphere at this year's ECFS could be described in one word: hopeful. After many gruelling years of poor outcomes and pain-staking research the CF community could finally say things are changing for the better. Amidst the growing worry about antibiotic resistance there was real optimism for the upcoming CFTR-modulating drugs. These are drugs that work on the specific defects caused by the mutation on the CFTR gene. It seemed like a miracle of sorts when Vertex developed Kalydeco and Orkambi but now things are already moving on from that. Vertex are already working on new potentiators and correctors. The difference between 'potentiators' and 'correctors' is that correctors overcome the defect in the protein. This means they stop the misfolding of the CFTR. This correction allows for increased tranferring of CFTR to its destination. Potentiators on the other hand increase the activity of the defective CFTR. The conference included talk of the pharmaceutical company Galapagos, a biotechnology company founded in 1999. There was lots of chatter about the interesting drugs Galapagos are working on. With four new potentiators in the research phase and correctors also being trialled the company name was muttered endlessly during the conference. Another company to watch is CoNCERT. A drug development company founded in 2006 that is currently working on new potentiators and correctors. The future of CFTR-modulating drugs is bright, this is good news for future generations of CF patients. Aside from the excitement of new drugs in the works 4

many researchers were presenting new and novel ways of testing these new drugs, which was innovative in itself. Some researchers are using stem-cell (basic, undifferentiated cells from a patient's body) structures called 'organoids' to look at how effective a drug is for an individual patient. Magarida D Amaral gave a fascinating talk on her use of these structures. The organoid is made of the patient's own stem cells which means it is specific to the patient. This is all in an effort to move towards patient specific therapy instead of a 'one size fits all' approach in which all CF patients, regardless of the gene they had, were given the same therapy. Now, we are moving towards a more specific treatment regime for each patient. This is more effective as each patient will be receiving a treatment specific to them. This was a common theme throughout the conference. An ongoing and obvious theme to the conference was the emergence of patient specific therapy, an almost futuristic idea, but, not very many years ago the idea of CFTRmodulating drugs seemed very out of reach and somewhat futuristic. And yet we have numerous patients now enrolled in trials and benefitting from the life-altering medications. I imagine too that in very little time the idea that patient specific therapy being futuristic, will be just a memory. There were many talks discussing innovative new research studies delving into the mechanisms that various bacteria use in order to better survive in the lungs. Studies like these are vital in order for us to better comprehend exactly what is going on in the

lungs. By knowing how bacteria survive and thrive we can then work on treating them. This, of course, in turn improves patient outcomes. There were interesting presentations given on the topic of exacerbations. Professor Harm Tiddens, ECFS board member and Paediatric Consultant of Respiratory Medicine and Allergology presented on the topic of CF exacerbations and spoke of the lack of studies to improve exacerbation treatment with only 15 occurring since the 1990s. Prof. Tiddens shared his opinion that inhaled antibiotic therapy should be used more aggressively. Professor Stuart Elborn, former ECFS president presented on biomarkers currently used to measure exacerbation in CF. A biomarker is a biological or natural molecule which in this case can be used as a marker for infection or inflammation. CRP- C-reactive protein, an inflammation biomarker is still a widely employed marker. NE: Neutrophil elastase is becoming more widely used. NE is a protein produced during inflammation. Another biomarker, known as C-SLPI is also used as a measure of NE. C-SLPI is generally higher during an exacerbation and comes down after successful treatment. Calprotectin is also a measure of inflammation commonly employed nowadays. Urine biomarkers were also discussed. Normally in hospital a sputum sample is taken and sent to the lab for testing. This can also be done with urine instead of sputum. Urine desmosine also changes during exacerbation and hence is another current biomarker. Urine desmosine is used as a measure of short-term lung injury. This lets the doctor know if there is ongoing injury to the lung.

Interestingly, Ernst Rietschel of the University of Cologne discussed the effect of exacerbations at a young age. He stated that children who have more exacerbations before 5 years of age will typically have a lower FEV1 at age 5. Hence, prevention is key. Another stimulating talk was given on the topic of the gut and the lungs: is there correlation? Despite there being no anatomical relationship between the lung and the gut, one is thought to influence the other. Gut bacteria can lead to inflammation which affects immune responses. The intestinal mucosa is an area in the intestines that is a meeting point of gut bacteria and endocrine, neural and immune systems. Hence, the bacteria here have an effect elsewhere. There was an emphasis on probiotics and prebiotics at this year's conference. Many factors influence the bacteria of the CF gut including diet, hospitalisation, genetics, antibiotics and therapies and the acidic environment of the lungs. Probiotics and prebiotics can be effective in controlling inflammation and somewhat restoring the balance of bacteria in the gut. In CF, studies have shown that there is less of two groups of bacteria. Group 1: Firmicutes. This consists of Veillonella, enterococci and staphylococci and Group 2: Bacteroidetes which includes Bacteroides-Prevotella. As well as having lower levels of the above bacteria, the CF gut has shown to have higher levels of disease causing bacteria. Studies have shown the higher your lung function the closer you are to having a more 'normal' gut microbial environment. So, if you haven't heard of probiotics, have a chat with your dietician or doctor and they will shed more light on the area. Despite the new, exciting research presented, many old reliables were also mentioned. There were talks on the major problem of patient adherence (patients sticking to the medication regime decided by their doctor) both within studies and also in general. An example of this would be not finishing an antibiotic course. This can lead to antibiotic resistance as explained by Prof John Moore at the CF Ireland conference this year. Despite attempts to overcome the lack of adherence it still appears to be a major issue for doctors and clinicians all over Europe and beyond. There was an interesting symposium debating the pros and cons of home versus hospital treatment. Some points in favour of home treatment included less disruption to family life,

Spectrum | Summer 2016

improved sleeping patterns and of course, a decreased risk of infection (providing nobody in your home is sick!) However, home treatment relies heavily on patient adherence to treatment. Treatment adherence is less of an issue during hospitalisation. Patients treated in a hospital reported less fatigue. Hospital treatment is more thorough in that microbiological and biochemical testing can be employed routinely throughout the hospital stay. Also, patients with CFRD also benefit from hospital care during this time. Research Economics. The conference opened with a talk on the huge cost of research, pharmaceutical profit margins and the cost of orphan drugs. An orphan drug is a pharmaceutical product that is intended to treat rare diseases, like CF. Henk Jan Out founder of Reach Out Pharma Consulting opened with an informative talk on the profits made by Pharmaceutical companies, putting them on a par with banks versus other businesses such as car manufacturers making less profit. The seminar moved onto the shelf-life of a patent which currently stands at twenty years, after which a drug loses its patent and another pharmaceutical company can swoop in and begin to make the same drug but without the pain-staking years of research and huge costs of development. The Food and Drug Administration, known as the FDA approved 45 drugs in 2015. 36%-40% of those were first in class. This means they are the first of their kind and in this sense are unique. 22% of all those approved were considered 'real breakthroughs'. A

massive 45% of those were orphan drugs which is good news for rare diseases. One of the more costly parts of research and development is the clinical study phase of a trial. There are more patients than ever included in these phases now with an average of 2300 people in each study in the 1980s versus 5600 included now. With this increasing number comes an increase in the complexity 6

of protocol. How does all of this relate to Orphan drugs? Some points to consider regarding research and development of orphan drugs included the limited numbers of patients worldwide and because of this clinical trial programmes will often be smaller. There is a small market so the cost of the drug will typically be higher than that of more commonly used drugs. The profitability for companies isn't always obvious. For example, Vertex have only made a profit in one year since they began operations. All of these things have to be considered before a company decides to pursue an orphan drug as the financial benefits are not always as obvious as the health benefits. An interesting point that was noted was that smaller pharmaceutical companies often tend to take more risks than the bigger ones. Are the overall high profits of pharmaceutical companies justified? With a general profit margin on a par with banks is there room for improvement? An important consideration is that investors will often be put off by lower profit margins, which means that if profits get lower companies will lose investors, they will simply invest in other industries instead. Fewer investors mean less money available to fund research, therefore fewer new drugs coming available. So, in the world of drug development there are many considerations, not just the visible profits. Perhaps the system currently in place needs to be changed completely.

The conference, as a whole was fascinating. There was a symposium for everyone. From microbiologists to physiotherapists and dieticians, the ECFS had it covered. The thing that really stuck with me was the chit-chat that went on in the lobbies and foyers, not the conference halls. The sheer determination and compassion that everyone had for CF. Everyone has the same end goal. I spoke to researchers, psychologists, nurses, doctors, professors and they all spoke with such dedication and devotion to CF. This is what truly inspired me. Finally, I would like to mention how in awe the professionals are at the incredible strength constantly demonstrated by the CF patients. It is obvious that the future of CF is a bright one and the ECFS conference only made that more clear.

Christina Kenny.

Information

What is salt and why do I need it? Sodium and chloride are minerals, together they are known as salt. The body cannot make them so they are called essential nutrients and must be supplied by your diet. Salt helps maintain the body's fluid balance and helps muscles contract. Not enough salt can cause pain, weakness, nausea and headaches. People with CF lose extra salt in their sweat. To make up for this, it is important to eat enough salt and salty foods every day. Along with salt, a good fluid intake is required to ensure hydration. Times when extra salt and fluid maybe needed: Children with CF in Ireland usually do not need any additional salt supplements other than the salt from the diet. Hot Weather During hot weather, increased sweating and therefore increased salt loss can result in a negative salt balance associated with vomiting, leg cramps and poor appetite. In these circumstances it is usually necessary for a salt supplement. If you know you are going on holiday to a warm climate, it is better to let your CF team know who can arrange this for you before you travel. Infants Babies and younger children have a higher need for salt. Breast milk and infant formulas are low in sodium therefore infants with CF may need salt added to their spoon feeds. Salt should never be added to expressed breast milk or infant formulas without advice and monitoring from your CF team. Exercise The body cools itself down by sweating where salt and water is lost. Ensure enough salt and fluids are taken to prevent dehydration.

Spectrum | Summer 2016

How to Increase Salt intake

• • • • • • • • • • • • •

Add table salt to meals and snacks Canned foods e.g. Tinned meat, fish, veg Olives Crisps Salted crackers Pretzels Popcorn Salted nuts (ensure child >5yrs) Salted butter Canned/packet soup Processed meats e.g. sausages, rashers, salami, hams, chorizo Gravies, soy or oyster sauce Remember to ensure a good fluid intake

Stuffed Chicken Wrapped in Pancetta (Serves 4) Ingredients 4 chicken breasts 4 tbsp cranberry sauce 300g gorgonzola cheese 24 slices pancetta Olive oil salt pepper

Preheat oven 200C. Bash the chicken breast to 0.5cm using a meat mallet. Spread cranberry sauce 1 tbsp per breast; place cheese in the middle, season and roll the chicken. Place 6 pieces pancetta side by side, placing the chicken breast on the pancetta and tightly wrap. Place on baking tray and drizzle with olive oil and cook in the oven for 25 mins. Serve with potatoes and vegetables

This article was reproduced with kind permission from Fiona Curley, Department of Nutrition and Dietectics, UHG, Newcastle Road, Galway

Introducing Rory Tallon CF Patient Advocate I am delighted to join CFI as PWCF Patient Advocate. Before joining CFI I worked in the pharmaceutical sector. I graduated with a primary degree in Science from UCD and a Masters in Biological Sciences from DCU and I was lucky to secure a job in a pharmaceutical research company where I worked fulltime for 20 years in the clinical trials data management sector. Throughout these years I have also been involved in the adult PWCF group and have previously represented PWCF on the St Vincent's University Hospital patient liaison group and CFI board of directors where I had opportunity to influence CFI direction and priorities in line with PWCF group's requirements. I attended numerous CFI conferences over these years some of which I spoke at on behalf of the PWCF group. I also worked as part of the magazine committee of the PWCF group to help prepare and publish the previous Future Force magazine. It was great to see the PWCF group so active over these years with direct influence on the goals and aims of CFI. The exercise grant in particular has been widely appreciated by PWCF and reiterates the importance of exercise to help maintain your health with cystic fibrosis. I grew up in Wicklow and was always quite active as a child. Swimming, cycling, hurling and gaelic football were my favourites but I enjoyed additional sports such as badminton and volleyball during my college years. Though active as a child I was not without regular bouts of infections, flu and colds and crippling stomach cramps and I often missed weeks at school and college. Juggling CF, its complications and the time consuming treatment regime remain a constant challenge no matter what stage in your life or your health. I was also diagnosed with cystic fibrosis related diabetes over 10 years ago and I find this takes Spectrum | Summer 2016

careful management balancing my food supplement intake without sending by blood sugars soaring into space. I live now in Dublin now and am married with 2 young children who keep my wife and I smiling every day and we count ourselves blessed that the technology of IVF enabled us to have our family. As a father I now have additional 'normal' responsibilities to factor along with my CF - exorbitantly expensive childcare and the sleepless nights. I also have a duty to educate and mentor our two little angels through their journeys in life. I really appreciate that CFI have established an Independent Living working group and are developing an independent living survey to roll out as soon as possible. There is much to learn and much to re-learn since a previous CF Independent Living survey in 1998. Your experiences and how your CF impacts your day to day living can help us determine and understand the broad spectrum of challenges you face across the different age groups and we hope that the knowledge gained will enable us to shape the next CFI priorities. As CF patient advocate I am here to help you in whatever capacity CFI can. Please don't be shy about contacting either myself or Caroline Heffernan if you need anything or even if you just need to chat. We are here for you. You can contact CF Patient Advocates: Rory Tallon tel 087 9323930 or email rtallon@cfireland.ie Caroline Heffernan tel 087 9323933 or email cheffernan@cfireland.ie You can also contact Sam Byrne, Member Services Senior Coordinator in the office on 014962433/1890 311 211 or email sbyrne@cfireland.ie 9

We have produced a leaflet on Community Cross Infection, which should be of interest to all. It outlines the crossinfection guidelines in many different scenarios, including travel, socialising and education. It is available on our website to view and download. Please call one of the CF advocates or contact a member of your CF team if you have any further questions on Community Cross Infection. www.cfireland.ie

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Patricia Duffy-Barber Chairperson of the NEC I would like to introduce myself to you, I'm stepping into the role of Chairperson of the National Executive Committee (NEC) - the Board of the Association. As a person with CF and a member of the PWCF 'virtual' branch, I have represented adults with CF at the NEC for several years and I have previously held the role of Secretary and recently Vice Chair of the Association. I would like to thank Philip for suggesting I take on this role and for his patience while I took some time to reflect on achieving 'a good fit' with my various roles and responsibilities as a working mum. I am fortunate that my tenure commences at a time when the Association has grown from strength to strength since 2009 under Philip's leadership as CEO; and there is a clear vision of how CFI is moving the expectations forward towards improved standards of care nationally. I'm a firm believer that the strength of our organisation lies with our network of branches, and it is clear that with staunch support from Branch members tirelessly volunteering to fundraise and to lobby locally that many of our hopes and dreams for better care have materialised into buildings, beds and services for our CF community. Families and people with CF reaching out and supporting each other is also a core value at the foundation of our Association; and it is my belief that by reaching out and continuously supporting each other in whatever way we can that we will face the inevitable challenges living with CF will throw at us. Keeping the lines of communication open between families in our branches and between the local Branch and the National Office is a constant priority; thankfully the latter is made possible by Branch members volunteering their time to sit as NEC directors. I would see one key aspect of the role of Chair at the NEC is to ensure local issues are continuously brought by directors to the NEC so that Board discussions are relevant and that members know their needs are represented.

like to thank David and the other members of the Staff and Finance Committee John Coleman Treasurer, Caitriona Hayes Secretary and Christine Drummond for their continued support and time commitment to the committee as it provides an invaluable forum for navigating important issues central to the governance of the Association. I would also invite as many families as possible to come along to the local Information Evenings initiated by David Fitzgerald and Philip Watt, which will continue this year. I look forward to the opportunity to meet families and I know from previous meetings they have been an opportunity for members to reconnect with their Branch, hear from a CF Health Professional, and to hear more about how the Association is working on local issues on your behalf. A key piece of work is being undertaken this year by a sub group of the NEC- the Independent Living Group, and as the Chair of that group I am happy to report that work continues on the development of a 'CF Census', which will be an online survey asking people living with CF (over 16), about their aspirations and the challenges they face when it comes to education, housing, employment and other aspects of living independently. The findings of this CF Census, will help identify future directions for CFI in supporting our CF Adults across the country. Please check the CF Ireland website regularly for the launch over the coming months. Over the coming months I look forward to representing you and the Association to the best of my ability. CFI will continue to actively lobby on issues that affect a broad spectrum of people with CF of all ages and at various stages of living with CF, from fertility issues, to education about cross infection, maintaining staff in hospital, access to post transplant services, to access to crucial treatments. I am conscious that as a charity we are often vulnerable to the changing winds of public opinion, but I am confident as we continue to be an organisation which is well governed and fully compliant with the many voluntary and regulations governing how we operate, we have every reason to be proud of our achievements and the improvements in care that CFI has secured for our CF community. Ar aghaigh linn.

I'm keen to continue the sterling work of our outgoing Chair, David Fitzgerald who has kept the NEC meetings on task and ensured that sensible decision making ruled. I would

Spectrum | Summer 2016

CFI Annual Co Sligo

onference 2016

Spectrum | Summer 2016

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 August 27th & 28th: Achill Ultra Marathon Cystic Fibrosis Ireland and Achill Ultra Marathon are teaming up this year to raise funds for CFI as part of the Achill Ultra annual marathon event. Now in its fourth year, Achill Ultra is held on the 27th and 28th of August and is a two day, three race event featuring a half (21km), full (42km) and ultra (63km) marathon. Race Director Donna Mc Loughlin said she aims to use the event to help raise funds to assist all those living with Cystic Fibrosis. Ms Mc Loughlin said she first became aware of how prevalent the issue was when she was running beside long-time advocate and fundraiser Gerard Fay as part of his 200 Marathons fundraising endeavour for CFI. "Meeting Gerard and learning about Cystic Fibrosis was an eye opener. After learning all I could about Cystic Fibrosis I decided that I wanted to use Achill Ultra not only as a platform to fundraise but also to educate people about the disease."

Mr. Fay said he was pleased to have Ms Mc Loughlin and Achill Ultra as a new supporter for CFI and plans to return to Achill to take part in the backto-back marathon next August. "Cystic Fibrosis and running have been my life for the past 30 years and the marathons are my way of giving back. I'm proud of being an advocate and fundraiser for Cystic Fibrosis Ireland and look forward to using Achill Ultra as another step toward achieving my goals for 2016." Ms Mc Loughlin says 25% of each registration fee will go towards helping Cystic Fibrosis Ireland improve the lives of the sufferers who live with the disease. "Whether you are a seasoned marathon runner or ready to simply explore the drama of the Wild Atlantic coastline, Achill has something for everyone. We are encouraging as many people to take part as possible and support this worthy cause." For more information or to register for the event visit www.achillultra.com 16

September: Paris2Nice CF Ireland would like to thank the cyclists who have registered to take part in Paris2Nice 2016 on behalf of CF Ireland. Our cyclists are currently training and looking forward to September when they will cycle over 600km in 6 days through the beautiful French countryside. Regular training spins take place each weekend with participants also taking part in sportives around the country as part of their preparation.

This really is a once in a lifetime experience. To quote a previous cyclist: "This is a life changing event. The challenge is an incredible experience knowing that the money you raise will change the lives of so many others." There are still a few places left on the trip but anyone thinking of taking part should contact us as soon as possible in order to register. Please email Peter on pminchin@cfireland.ie or call 01 496 2433 for information on how to sign up. More information can be found on www. paris2nice.com.

October 1st to 8th: CFI International Walk 2016 in memory of Ita Minogue The 22nd Annual CFI International Walk will take in the Wonders of Portugal from October 1st to 8th 2016. Departing from Dublin on October 1st, the eight day trip will take in the various landscapes and landmarks that Portugal has to offer including Jeronimos Monastery, the Belem Tower and the Mafra Forest. Walks will take place every day and will cater to various levels of fitness so that everyone can enjoy the scenery at a pace they are comfortable with. We are delighted to have singer Mary Duff take part again as Ambassador for our International Walk. The CFI International Walk is not only a fantastic fundraiser, but also a great opportunity to make new friends, take in new sights and challenge yourself. The 2016 CFI International Walk is in memory of Ita Minogue, a past walker and person with cystic fibrosis who sadly passed away in 2015. The cost of the walk is â‚Ź2,980 and this covers flights, bed & breakfast accommodation (single room accommodation is available at an additional cost of â‚Ź290), dinners and guides. However, you also get so much more friendships, memories, experiences and the knowledge that you have made a difference for PWCF in Ireland.

If you are interested in our International Walk, please email Nuala on nmcauley@cfireland.ie or phone 01 496 2433 for information. Further details available on www.cfireland.ie.

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October 30th: SSE Airtricity Dublin Marathon Are you up for the Marathon Challenge?

Put your lungs to good use and run for Cystic Fibrosis Ireland in the 2016 SSE Airtricity Dublin Marathon, which this year will take place on Sunday October 30th allowing you to take part and still enjoy your Bank Holiday Monday!

Whether you are 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! Everybody taking part in this year's marathon will receive a medal not only to recognise your accomplishment, but also as a great memento in this the centenary year of the 1916 Rising. There will never be a better year, a better time or a better place to take part in a Marathon than Dublin 2016. Registration costs â‚Ź70 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 Nuala on nmcauley@cfireland.ie, phone 01 4962433 or visit our website on www.cfireland.ie

November 6th: New York City Marathon Last Call! If you are thinking of taking part in this year's TCS New York City Marathon on Sunday 6th November, please get in touch with us as soon as possible. There are a limited number of places remaining. Don't miss out on what is one of the world's greatest participatory events where a great time is guaranteed. Non-running partners, family and friends are also welcome to attend. A booking deposit of â‚Ź675 is required to secure your place and the final payment is due by July 11th. Sign up today and join Team CF for the NYC Marathon 2016.

We advise immediate booking in order to access our highly sought after guaranteed places. Please e-mail Peter at pminchin@cfireland.ie or call our office on 01 496 2433 to book your place. 18

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. 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! Spectrum | Summer 2016

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 will be 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.

HEAD2HEAD Walk The annual Head2Head walk will take place again this year with the event planned to take place on Sunday September 25th with all proceeds going to Cystic Fibrosis Ireland.

The walk will again begin at Howth Head and finish at Bray Head covering a distance of over 24 miles. For those who feel the full distance is a bit too strenuous there will be the option of starting at Howth Head and finishing at Sandymount or joining the walk at Sandymount and finishing at Bray. The walk will be well supervised with marshals on all junctions, water and snacks provided for all walkers and medical back up. Refreshments will be served at the finish in Bray.

Registration for the walk will open shortly so please keep an eye out for further details on our website www.cfireland.ie and our Facebook page. For any queries please email Peter at pminchin@cfireland.ie or phone 01 496 2433

Journeymen Adventures - I2I Cycle On May 28th Darragh Grace, Sean Cheasty and Chris Breheny flew from Dublin to Istanbul to start the Istanbul to Ireland Cycle in aid of Cystic Fibrosis Ireland, The Irish Cancer Society and Pieta House. The crosscontinent cycle will take six weeks and see the three students take in 11 countries and 8 capital cities.

Chris chose Cystic Fibrosis Ireland as his nominated charity for the cycle as CF has had a massive impact on his family, with his sister Laura and brother Hugh passing away from CF in 2009 and 2011 respectively.

To follow and support Chris, Darragh and Sean on their adventure follow them on Facebook www.facebook.com/i2iAdventure/

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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 National Awareness Week We would like to thank all our supporters who organised a 65 Roses Challenge during CFI National Awareness Week or took part in our National Fundraising Day - 65 Roses Day on Friday 15th April. This year saw us build on the success of previous years with great media coverage in the lead up to 65 Roses Day helping to make the day a great success. Fundraising on the day was possible due to the tremendous support of the CF Branch network and volunteers across the country who came out to sell our Purple Roses.

We would like to say a special thanks to our 65 Roses Ambassadors Keelin Shanley, Bryan Dobson, Jenny Dixon and Joe Brolly who helped us promote the day and to the families who took part in the photoshoots for 65 Roses Day. We would also like to say a special thank you to Malone Engineering who sponsored our radio advert which helped increase awareness of CF and 65 Roses Day.

65 Roses Challenges Thank you all the individuals, schools and workplaces who organised events as part of our 65 Roses Challenge. It would be impossible to list all the events but to give you a flavour we had a team climb Irelands highest 7 peaks in 7 days, we had a group do 65 exercises in 65 minutes, we had table quizzes, coffee mornings, bake sales and jumble sales to name just a few. If anyone has any outstanding funds from these events that they need to lodge you can do so using the bank details below:

Fundraising Account: IBAN IE59 AIBK 9310 7108 5785 93 BIC: AIBKIE2D

CF Ireland would also like to say a special thank you to Drogheda man Gerard Fay. Gerard is a long term supporter of CFI and in the past has raised more than €100,000 to help people with CF. In March, Gerard completed his 200th marathon in Tralee in what can only be described as an unbelievable achievement and Gerard continues to raise funds with his target to raise another €50,000 for CFI. Gerard also took part in our 65 Roses Challenge at our annual conference in Sligo this year. On Saturday 9th April Gerard ran 65km on a treadmill in the Clarion Hotel Sligo which was a great way to kick off the 65 Roses Challenge.

Rebel654CF Thank you to Nick and Colette Roche who organised the Rebel654CF in Mitchelstown Leisure Centre as part of the 65 Roses Challenge and raised €11,558.14. They got huge support from everyone in the local area and even had former Irish rugby players Alan Quinlan and Denis Leamy help out on the day. Pictured at the cheque presentation were: L to R: Ben Lynch (Mitchelstown Leisure Centre), Nick Roche, Colette Roche, Oisin Roche, Marian Roche, Teaghan Roche, Billy Roche and Justin Fleming.

Mount Sackville School Thank you to Sophie Slavin and her fellow students in Mount Sackville Secondary School, Chapelizod who organised a bake sale during National Awareness Week and raised €250 for CFI. Also, thank you to Mrs. Sheehan, the year head who helped facilitate this.

Scoil Naomh Eoin, Navan Thank you to Scoil Naomh Eoin in Navan for supporting 65 Roses Day by holding a 65 Roses Cake sale that raised €1,650 for CFI. Pictured at the cheque presentation are from L to R: Enda Lydon (Principal), Peter Minchin (CFI), Ciara O'Hare, Sadbh O' Hare McDonald, Alyson Erke and Lisa Berigan.

Riverstown National School, Glanmire, Co. Cork Special thanks to the 6th class children of Riverstown National School in Glanmire, Co. Cork who donated a portion of their Confirmation money to CF Ireland as part of National Awareness Week and raised €960. Ava Barry (PWCF) presented the cheque to Peter Minchin from CFI.

Shanballymore National School, Mallow, Co. Cork Well done and a big thank you to the staff and pupils of Shanballymore National School who held a bric a brac sale and sold our CF Purple roses on 65 Roses Day and raised €600 for CFI. Photo: Principal John Walsh and pupils presenting the cheque to Peter Minchin (CF Ireland) Front L to R: Lorcan Murray, Leah Relihan, Nathan Murray, Danni Sweeney Mullane Back: L to R: John Walsh (Principal), Peter Minchin (CFI)

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Annual Conference Raffle A huge thank you to everyone who supported the CFI Grand Raffle 2016 by purchasing and selling tickets. The raffle draw took place at the Gala Dinner of the CFI Annual Conference in The Clarion Hotel Sligo on Saturday April 9th. The winners were as follows: 1st Prize - Ipad Air

Sinead Farrell

2nd Prize - 2 Nights B&B in The Clarion Hotel Sligo

William O'Callaghan

3rd Prize - â‚Ź200 Sunway Holidays Voucher

Conor Lynch

4th Prize - Asus Transform Pad

Luke Barry

5th Prize - Kindle Fire

Ciaran Barber

6th Prize - Amazon Fire Tablet

John Fitzgerald

7th Prize - Amazon Fire Tablet

Lorraine Fenelon

8th Prize - Tickets to Bulmers Live at Leopardstown

Evelyn Barnes

Cystic Fibrosis Ireland would like to thank everyone who supported the raffle by donating prizes including; Adlantic.ie, Sunway Holidays, Clarion Hotel Sligo, PC Peripherals, Grange Print, Fergal Smyth.

Conference Sponsors We would like to extend a huge thank you to the sponsors of the CFI Annual Conference in Sligo whose support makes this event possible on an annual basis. Our sponsors for the 2016 CFI Annual Conference were; Vertex Pharmaceutical Novartis Baxter Healthcare Raptor Pharmaceuticals Chiesi Limited

1916 Walking Tour Numerous commemorative events took place over Easter to mark the centenary of the 1916 Rising. Cystic Fibrosis Ireland teamed up with historian Lorcan Collins, who very kindly provided his time to conduct a 1916 Walking Tour which was held on Good Friday, March 25th in Dublin.

The tour which began at Trinity College, visited some of the main buildings and streets where the Easter Rising took place, including Dublin Castle, Moore Street and the GPO. 70 participants took part in the walk and each walker received a signed copy of Lorcan's book "The Easter Rising - A Guide to Dublin in 1916". The sun shone, Lorcan was a fabulous host and a fantastic day was had by all who attended. 24

Malin2Mizen Cycle for CF Cystic Fibrosis Ireland with support from CF Branches around the country and Bernie Priestly working with the Local Sports Partnerships, organised the first Malin2Mizen Cycle for CF in May. The event turned out to be a fantastic success with a group of 15 cyclists cycling from Malin Head in Donegal to Mizen Head in Cork, a distance of 640km, in just 4 days. Friends of the Priestley family started the cycle in 2015 in memory of Triona Priestley, who lost her battle with CF at just 15 years of age but her fight to raise awareness of CF continues through this event.

The cyclists represented CF branches from across the country ensuring that this was not only a national fundraising event for CF but also helped ensure it raised awareness of

CF from Donegal to Cork. The cyclists gathered on Wednesday evening 11th May and set off the following morning from Malin Head to begin their journey. CF Ambassador, Joe Brolly, led the cyclists on the first day of their journey. A well-earned pit stop at Kerman's Diner in Drumkeen, was much enjoyed thanks to the kindness of the proprietors. Day 1 also saw the cyclists joined by some supporting local cyclists from Donegal. The end of day 1 saw the cyclists arrive in to The Great Northern Hotel Bundoran after covering 160km on the bikes. On Day 2, the cyclists left Bundoran and headed for Claregalway. The Sligo CF Branch ensured the cycle got a warm reception in Sligo. Food and beverages were again kindly supplied at Mullins SPAR Service Station and then it was over to the Chamber of Commerce for a welcome reception with the Mayor, Cllr Thomas Healy. Some local cyclists from the Inisfree Wheeelers joined the cyclists to support them along the way. Later that day the cyclists were welcomed into Tuam by CF West and were again catered for at the Maxol Service Station on the Galway Road, Tuam before finally arriving to a rousing reception at the Claregalway Hotel organised by the CF Galway Branch.

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On day 3 the cyclists made their way from Claregalway to Springfort Hall in Newtwopothouse near Mallow in Co. Cork. Again it was another sunny day with the cyclists stopping in Maxol Clarecastle, Maxol Dooradoyle and Maxol Croom for refreshments where they were well looked after by both the Clare and Limerick branches of CF. Some cyclists from the Clare Ladies Cycling club joined the cyclists in Gort and cycled with the group to Clarecastle. The cyclists received a Garda escort from Gort to Clarecastle and through Limerick City helping them make good time before arriving in Springfort Hall that evening. The physio was kept busy as the bodies were now beginning to feel the exertions of 3 days long cycling.

Day 4, the final day, saw the cyclists leave Springfort Hall in good spirits knowing that Mizen Head was now only 160km away and the weather was again looking good. First stop on day 4 was Coleman's Maxol in Millstreet where the cyclists refuelled and at this stage everyone could feel the excitement growing as Mizen Head was getting closer. Although it was now day 4, the cyclists all kept up a strong pace towards the final stop before turning for Mizen Head, just outside Bantry. Thanks to Maxol in Bantry for also getting behind the event and supporting our cyclists and we also had great support from Blackwater Cycling Club, Valley Wheelers and Bandon Cycling Club who provided cyclists to guide our group towards Mizen Head.

Finally after 4 days cycling covering 640km, the cyclists wheeled into Mizen Head in glorious sunshine and were greeted with huge cheers from family, friends and supporters. It was a very emotional moment for everyone involved and a great sense of achievement was felt not only by the cyclists but by all the support crew too. It took a lot of planning to make the event happen and now it was time to relax and take it all in.

This event could not have happened without the help and support of many people and organisations to 25

whom we are extremely grateful. CFI would like to thank our sponsors for the event including Maxol Ireland, Dunnes Stores, Bradley Motors (Tuam), Frank Keenan (Cycling Ireland), Eoin Hogan (Burren Cycling Club), Phelim McCallion (Border Bikes). We would also like to extend a huge thank you to all those who made the event possible including Bernie, Sean & the Priestley Family; Brendan Quigley, John & Jess Sweeney (Clare Sports Partnership), Phelim Macken (Limerick Sports Partnership), Michael Crowley (Cork Sports Partnership), Michael Curley (Galway Sports Partnership), Myles Sweeney (Donegal Sports Partnership), An Garda Siochana, Physio and our Ambassadors Alan Brogan and Ryan Phillips.

The event would not have been possible without the support of our branches who provided cyclists including Sligo Branch (Padraic McSharry), Galway Branch (Peter Cronin), Clare Branch (Jess Buckley), TLC4CF (Owen Kirby), Cork Branch (Liam Fahy), Eastern Branch (Jonathan Nicholson), Dublin West Branch (Henry Cahill & Aidan Priestley), Cavan Branch (Donal McGoldrick), Drogheda Branch (Stephen Carroll) and our other Cyclists (Tom Ryan, Cathal Porter and Peter Minchin). Finally a huge thank you to everyone who came out and supported the cycle along the route including our CF Branches from Donegal, Sligo, Mayo, Galway, Tipperary, Limerick, Clare and Cork. We are already really looking forward to next year's cycle.

One in 1000 Bank Holiday Monday June 6th saw 1,000 participants line out for Cystic Fibrosis Ireland to take part in the VHI Women's Mini Marathon as part of the One in 1,000 Campaign.

CFI were delighted to have one of the largest charity contingents taking part this year. Thank you to everyone who signed up to take part, your support is greatly appreciated. A huge thanks to the branches who supported the One in 1,000 Campaign as the National Fundraising Event for CFI. It was great to see such great support from participants from the CF community nationwide. Now in its 33rd year the Women's Mini Marathon continues to be the largest female only event globally, with over 35,000 taking part in this year's event. The day itself has a unique warm atmosphere, with an even greater bond between all participants on behalf of CFI ensuring it is not just a fundraiser, but an event to enjoy and remember.

It was great to have One in 1,000 Ambassadors Nuala Carey and Emma Quinlan join the CF Team taking part on the day. Of course they were not the only famous faces lining out for CFI on the day as Elsa, Olaf and Mrs. Brown also made appearances! We hope everyone who took part enjoyed 26

the day. It was great to see so many of you in DTwo Harcourt Hotel before and after the Mini Marathon. Just a reminder to participants that if you raise €100 or more and return your sponsorship money to CFI before August 31st, you will be entered into the Lucky One in 1,000 Raffle with great prizes to be won including a €100 Brown Thomas voucher, a Lindt Chocolate Hamper, a beauty hamper from Mc Cabes Pharmacy, two €50 Penneys vouchers, an overnight stay in The Harcourt Hotel and much more.

Again, thank you to everyone who took part in the One in 1,000 Campaign, proving that one person really can make a difference.

Yes Chef Cycle CF Ireland would like to say a huge thank you to Shane Smith for organising the Team Yes Chef Cycle 2016. The Yes Chef Cycle saw over 40 cyclists, many of whom were chefs or work in the food industry take part in a 3 day cycle challenge in the West of Ireland. Day 1 saw the team cycle from Lisdoonvarna to Galway. Day 2 saw them cycle from Galway out around beautiful Connemara and back to Galway. Day 3 saw the team finish the event by cycling from Galway to Lisdoonvarna. The entire 3 days saw the cyclists cover around 300km.

Well done to Shane and all his friends and colleagues for putting together a wonderful event and thank you to all those who took part and fundraised for event which was in aid of CF Ireland. Special mention to event sponsors Flogas and Brakes.

Duleek 10k 2016 saw the 4th annual Duleek 10k Run/Walk take place organised by the CF Drogheda Branch to remember all CF loved ones and to increase public awareness of CF and help raise much needed funds for CF Ireland. Congratulations in particular to Leigh, Malachy, Niall, Lee and all the people with CF who participated in this year's 10k. Also, a big thank you to all 439 registered runners and walkers who took part. Thank you to the sponsors who provided t-shirts, medals and signs for the event. Also thanks to all managers, stewards, bakers and anyone who helped in anyway in making the event a huge success, raising €19,400. We hope to see you all next year!

UCD C&E Society CF Ireland would like to say a huge thank you to UCD C&E Society who earlier this year held a charity day and raised €2,756.38. As part of COMM DAY the students organised a number of events including a table quiz, 5 a side soccer Spectrum | Summer 2016

and a bake sale to name just a few. Pictured above are Katie-Louise Flynn and Rachel Beggins presenting the cheque to Peter (CFI). Special mention to Michael Marren and Ruth Dargan of UCD C&E Society for their work.

Creevy Xmas Swim Thanks to Claire McCarthy and her family and friends for organising the Creevy Xmas Swim in aid of CF Ireland. They recently presented a cheque for €1118.00 to CFI.

Bundoran Golf Club Lady Captain Fashion Show Thank you to the ladies of Bundoran Golf Club who organised a Charity Fashion Show in aid of CFI and raised €415 in the process. Pictured across are Lady Captain Kathleen O Neill with Claire McCarthy and fellow members of Bundoran Golf Club.

Sinead Banfield - Mt. Toubkal Climb Congratulations and well done to Sinead Banfield who climbed Mt. Toubkal in North Africa in May and raised €533.62 for CFI. Well done Sinead.

Derry to Fanad Cycle 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 Cystic Fibrosis Ireland. The group was made up of Donegal men now scattered far and wide with many travelling from other counties and some from England to join the cycle. Among the cyclists was Kevin Doherty who along with his wife Claire are parents to three boys with CF. Huge thanks to all involved who so far have raised over €4,500.

Sean McNamara- Paris Marathon Well done to Sean McNamara who took part in the Paris Marathon earlier this year and raised €2,939.10 and had a hugely enjoyable trip.

JP O' Hanlon- Prague Marathon Thanks to JP O' Hanlon who took part in the Prague Marathon in aid of CFI and raised €3,651. JP finished the marathon in just under the 4 hour mark. Well done JP.

Comicbooks.ie - Geek Mart CFI were delighted to be chosen as the Charity Partner for the May Geek Mart hosted by Comicbooks.ie in the Central Hotel, Exchequer Street. The Geek Mart takes place each month and is a one stop shop for all things comics, manga, art, and crafts & games.

Shane Browne- Golf Classic Thank you to Shane Browne for organising a Golf Classic which took place on 1st April in Druids Glen. Shane raised a fantastic total of €5,300. Thanks to all those who took part and supported the event.

Ladbrokes Dun Laoghaire Thank you to the staff of Ladbrokes in Dun Laoghaire who earlier this year raised €1,000 for CFI through a number of different staff fundraisers. Ladbrokes in Dun Laoghaire have been loyal supporters of CFI over the last number of years, we really appreciate their support. Thank you.

Irish Club of Rome CF Ireland would like to thank the Irish Club of Rome for their donation of €800 from their Celtic Ball 2016. The Irish Club of Rome co-ordinate various Irish-Italian cultural events for the benefit of Irish people and the friends of Ireland in Rome while also raising funds for various Irish charities. Special thanks to Margaret Bissett-Olivieri and friends for their support.

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Conference 2017 Save the date

The Brehon Hotel, Killarney 31 March - 2 April

ails t e d ing he t r e Book ths ov n o w o m l l ng to fo comi