Spectrum
Winter / 2017
È Review of 2017 È Allowing children to become our teachers È Hold on to Your Kite È Fundraising Updates È Calendar of Events 2018 Spectrum |Winter 2017
i
Foreword On behalf of everyone, including the Chairperson of our association Patricia Duffy-Barber, the board and the branches and staff of Cystic Fibrosis Ireland (CFI), we wish you a very happy 2018. We had another very busy and productive year in 2017 and we wish to extend a huge 'thank-you' to all who worked to improve CF services and to ensure access to ground-breaking medications (in particular Orkambi and the extension of Kalydeco). We note that 2018 marks the 30th anniversary of the first ever CF double lung transplant and there is a short summary of progress over the past 3 decades in this issue of Spectrum. We hope that 2018 will also be the year in which the Government introduces the new form of organ donor consent 'soft opt out' which has been promised as part of the Human Tissue Bill. We understand that the Mater Hospital Transplant programme had another successful year and over one third of the 34 double lung transplants undertaken in 2017 were for patients with CF. We have sent our love and best wishes to Orla Tinsley and to her family, including her parents Patricia and Brian. Orla received the best Christmas present possible with a double lung transplant that took place at New York- Presbyterian/Columbia University Medical Centre in December. We take this opportunity to thank all our CF Centres including specialised doctors and their dedicated multi-disciplinary teams for their continuing hard work, including commitment to health research. Many challenges remain despite recent progress. Some CF centres continue to have significant gaps in their teams due to continuing cut-backs. This is unacceptable and will be a priority for CFI in 2018, as will be the fulfilment of the Government's promise to build an inpatient facility in Beaumont Hospital in Dublin. Date for your Diary: Whether you are a new or existing member, we hope that you will be able to join us for our annual conference which will be in Dundalk this year on the weekend of 6th-8th of April 2018.
Philip Watt (CEO) Samantha Byrne (Editor)
Front Cover: Jillian McNulty and Rosanna Davison at the launch of the Spar Ireland Twitter Tree
ii
CONTENTS Latest News | 2-4
Spotlight | 12 - 13
È Review of 2017 È Ongoing challenges È 30th anniversary of CF tranplantation
È Allowing children to become our teachers È Hold on to Your Kite
Information | 5-7 È An Iconic Gift Rises
"Minister Simon Harris TD and the Cavan Branch of CFI, including Ray Dunne and Robert Dunne, at the opening of the Cavan Hospital CF paediatric in patient unit"
Fundraising | 13-25 È Challenges and Events È Thank You È Story - International Walk by Ben McCarthy
"Ronnie McDermott (HSE); Patricia Duffy-Barber (CFI), Dr Anne Leahy (Cavan hospital) and Dr Alan Finan (Cavan Hospital) in one of the new CF rooms.
DISCLAIMER: The views of contributors, when expressed in this publication, do not necessarily reflect the position or policy of Cystic Fibrosis Ireland. Spectrum |Winter 2017
1
Latest News We have had a very busy year in 2017 Thanks to all who played a role and supported us in the following major developments in 2017
•
The approval of Orkambi and the extension of Kalydeco in April 2017 after a 2-year advocacy process
•
The staffing, equipping and opening of the adult CF inpatient and outpatient units in University Hospital Limerick (UHL)
•
The opening of the 2 new CF paediatric inpatient rooms in Cavan General Hospital
•
The opening of 4 new paediatric inpatient rooms in Waterford Hospital (not yet formally opened)
•
The completion of the CFI Independent Living Report, which will be published in April 2018
•
A successful annual conference and 65 Roses week in Killarney, County Kerry
•
A successful year for fundraising, including major community events and corporate fundraising
•
The support for CF Clinical posts in the Mater (3) Beaumont (1) Sligo (1)
•
Funding of major CF research projects
• The wider recognition of the work of CFI including by President Higgins •
New public awareness initiatives including the well received 'just breathe' cinema initiative
• The ongoing support for our patients through grants and personal advocacy
Spectrum Winter 2017
Ongoing challenges CFI continues to focus on a wide range of challenges to improve CF care including for example:
Clinical staff shortages: Shortages remain for example in Cork University Hospital and Tallaght Hospital (consultant Posts); University Hospital Limerick (Nurse specialist) and posts that CFI funds for example in the Mater Hospital (Nurse specialist); Data entry clerk and psychologist and in Beaumont Hospital (CF Registrar) and Sligo Hospital (Physiotherapist)
CF Hospital Infrastructure: The inpatient unit in Beaumont Hospital has not yet been commenced, despite the specific promise in the present Programme for Government and further work is needed to commence the new children's hospital in Cork University hospital that will also benefit children with CF.
Independent Living: The CFI Independent living report will be published to coincide with the annual conference in Dundalk in April 2018 and will inform the forthcoming strategic plan 2018-2020
Post transplant care and organ donation: To ensure coordination and delivery of CF post transplant care is improved and 'soft opt out' organ donation is introduced by the Government.
Branches: A review of branches will be completed early in 2018 and will seek to enhance our branch structure.
We very much look forward to working with you in 2018 and a huge thanks for everyone's support!
A huge thanks to all the volunteers of 'Second Thoughts' who have just presented a cheque for â‚Ź7,000 to CF West, the Mayo Branch of CFI
Spectrum |Winter 2017
3
The 30th Anniversary of CF Double Lung Transplantation (2018) 2018 will mark the 30th anniversary of the first successful CF double lung transplant in the world. It may surprise many to learn that the first successful double lung transplant for any patient took place only as recently as 1986 in Toronto, Canada undertaken by pioneering surgeon Mr. Joel Cooper.
The same surgeon also performed the first successful double lung transplant for Cystic Fibrosis in 1988. This was made possible by the emergence of immunosuppressive drugs that organs such as the lungs could be transplanted with a reasonable chance of patient recovery.
appointment of specialised lung transplant surgeons in the Mater Hospital and the establishment of the Office for Organ Donation and Transplantation Ireland (ODTI) led by Professor Jim Egan.
Despite the great progress in the Irish lung transplant programme in recent years, there remains significantly more potential recipients than there are donors.
One of the factors that retards the programme is the availability of organs. We very much hope that Minister Harris will proceed with 'soft opt out' organ donation. CFI made a submission on this issue that is available on our website as part of our participation in the Irish Donor Network (IDN)
The first patients from Ireland with CF were transplanted in 1994 in Harefield Hospital, England. After a period of lobbying, in particular by the Cystic Fibrosis Association of Ireland, the Irish Government agreed to establish a dedicated lung transplant centre in Ireland.
The first double lung transplant in Ireland took place in the Mater Hospital in 2007 (Paul Minchin from Carlow) and there is no doubt the operation prolonged Paul's life, Paul sadly passed away in May 2011.
The longest surviving CF lung transplant patient in Ireland is Brendan McLoughlin from Donegal who received his transplant in 1992, so 2017 marks the 25th anniversary of his transplant, which took place in the Freeman's Hospital in Newcastle. Since 1992 Brendan has been cared for in Blanchardstown Hospital and latterly in the Mater Hospital. In addition to CF the Mater also performs transplants for patients with Pulmonary Fibrosis with Chronic Obstructive Pulmonary Disease (COPD); Pulmonary Hypertension and Alpha 1-antitrypsin deficiency
By 2011 the lung transplant programme was working at an optimum level, to such an extent that there was no longer further need for adults from Ireland to be transplanted in the UK. This came about through the Spectrum Winter 2017
Mary Lane Heneghan (CF Galway); Professor Charles Gallagher (SVUH); Philip Watt (CFI); Mayor of Galway Cllr Pearce Flannery and transplant recipient Stephen Flaherty (PWCF) from Knocknacarra Galway at the Circle of Life Park to thank organ donors, Salthill Galway, 30th November
An iconic gift rises Valentine's night closes and dawnlight warmly caresses Spring shoots at Cavan General as Murnaghan Brothers Ltd open site; shafts of stanchions soar through horizon to buttress phase two of a CF suite that branch advocated, Tanya researched, Rita and Bernie championed, doctors James, Ann and Alan endorsed, Philip encouraged, Paul and Gerry from Estates co-ordinated, Brigid, Evelyn, Damien, Tom and Ronnie planned and synchronised. New imprint quietly inhales first breaths. Parents, with hearts on sleeves, alone in the silent solitude of memory, sigh with deep relief; flushed with hope, tears of joy and thanks well up abreast infection free expectations; parental delight radiates from the realisation that their bold self-belief and energy will calibrate a sanctuary, a cherised centre for their children living with CF. Humble, grateful hearts and spirits rise as rib cage is craned above hoardings; imaginings of isolation chambers to safely enfold and cradle children with cystic fibrosis begin to be contoured. A monument rises, founded, funded and anchored in a murmuration of love and generosity of spirit. A quadrangular wrap of lobes pulsed symbiotically: the double helix of branch vision and passion in partnership with HSE goodwill and expertise, CFI head office guidance with Drogheda and Mayo encouragement flanked by leadership and organisiational skills of treasured and faithful friends from branch genepool, who collaboratively resourced, in austere times, all the required funds by voluntarily weaving a tapestry of events, embroidered by entwined threads spun, stitched and crafted from sales of Rosaleen's Christmas cards, a draw of Tess's annual Easter raffles, palpitations on Lorainne's blistering Run DMC 4 CF, the huffs and puffs to the summit on Richard Coeur de Lion Lions' Cuilcagh Challenges, pirouettes of swings from Kathy's Golf classics and a panting of mini and Ladies' Marathons alongside a whirlwind of gales in Michael's Rossa; woven from a superb octavian pelaton of Skoda Cycle Challenges, an enchantment of serenades from the Daniel & Mel's Ballinagh concerts, a panaroma of ascents to Fleming's Folly, buckets of asks at Church gates, a lycra-clad pedal from Croagh Patrick to Ballinagh, a contribution of anonymous donations, an exhaustion of a Kilimanjaro summit climb, Spectrum |Winter 2017
5
a toot of a whistle of Stephen's Days' football games, gruelling mudbaths in Hell and Back Challenges, a stroll of Charity walks, a moisturiser of aloe vera lotions, and saunters at Bruskey and Aughaloora Festival; braided, too, with a chord of St Patrick's College Concerts, a bolt of a Cavan Christmas Dash sprint, a groove of corrugated cardboard from Cavan Box, a tented festival at Robert's Redhills Carnival on the Green, a slope of a golf ball race, an innovation of Enterprise Ireland and Royal School initiatives, a run of the Athletic Club and cheques from Ballyhaise GFC and Farnham, Bruskey, Bawnboy, Granard and Aughnacliff Schools' presentations; whorled by a may-fly of a Sheelin Run, a birdie of a Quinn golf pro-am, a dashboard of a quarry rally and a spread of Keenan jams; a nimble hoof of Equestrian Centre Eventers, a constellation of Jimmy's All-Stars, a stall of a Crossdoney Fair Day and pull of tractors; an endurance of triathlons, a clutch of Motor Club rallies, an arkle steeplechase of a Drumlin Harrier hunt, a recyclable shredded scrap of Felix's used metal sales, a palette of Mel's paintings, a keg of gigs in Cillian's Blessing's, Kitty's, Ballyhaise Brady's, Meadow View and The Widow's Bars; plaited by a sponge of cake sales, an answer of Gallonray quizzes, a whiskey jar from Alan's Thin Lizzy a scrummage from the Rugby Male Voice Choir and a trumpet of Cavan Big Band shows; stringed with a Summer Proms by Cavan Singers, a Bismarck pension of retirement parties, an elegant gem of a charity golf classic, a clatter of white collar boxing fisticuffs, a boomerang of bungee jumps, a slipstream of Breffni Wheelers, and a scalp of fleeces from Niamh & Noelle; entwined by a prescription of health promotion from Cavan Institute, an eddy of rapid kayaking and a paddle of canoe sculls, a gillette of beard, head shaves and a tint of dyes; an overnight of Brenda's Run Home, a GAA Co. Board's flipping toss of heads and tails, an observation scan of a car treasure hunt, a thespian cast of Sliabh Glah Players, a legacy of wills, an inheritance from Nicholas Blumè and a roulette of a HSE lottery grant.
Spectrum Winter 2017
This transformative, kaleidoscopic quipu has been further knotted and gilded by the decades of loyalty from Tom, Tony, the two Johns, the Ballintemple Girls and Sandra, Cavan Motor Club, Tess's teams and the fabulous imperial giving by Donal & Karen, Kilmore Ross, and by New York's Mike and Connie, who have altruistically emptied pockets to fund the fight to filter out bacteria, and keep lungs infection and exacerbation free. The new skyline will echo memories of those loved and lost; and is a glinting icon, chiselled by sacrifice and big-hearted goodness, that celebrates and brightly reflects the power of humankind to love abundantly and also mirrors the beauty of the hearts and spirits of thousands of generous givers who have unstintingly gifted time, talents and energy to sculpt dreams of enhanced in-patient facilities, complementary to the CF out-patient portal, to underpin quality care and management of all children attending Cavan General, especially those living with CF. As Minister Harris unveils plaque today a trinity of forces, CFI, HSE and faithful branch friends, in unison, joyfully chorus that the awesome and wonderful Spirit of Love and Life is alive and an icon to the presence and power of goodness has been gifted. 10.11.2017 Written by the very talented Raymond Dunne to commemorate the opening of the new unit in Cavan General Hospital
Spectrum |Winter 2017
7
Allowing our children to become our teachers By Bernie Martin
As parents, we automatically think of ourselves as our children's educators. But if we allow them to, our children can actually teach US so much. When my daughter Eva was diagnosed with Cystic Fibrosis at just three weeks old, I thought our world was crumbling down around us. And while I hate the disease with every single cell in my body, our daughter has brought out the best in everyone in our family. Her bravery, resilience and determination have taught us those exact same qualities. She is stronger than anyone I've ever met and we all feed off her strength. Her spirit is completely contagious. Truthfully, I've cried more in the five years since she was born than I have done in the rest of my life combined. BUT I've also laughed more. Smiled more. And achieved more. Because she drives me to be a better version of myself.
There's no doubt that having a child with Cystic Fibrosis changes your life completely. You find yourself with entirely new goals and motivations. Things that meant everything to you before fade into insignificance. I can't do anything to change the fact that Eva has CF. I can't invent a new drug or magic away the challenging times. But in my own way, within my own capabilities and skillsets, I want to do anything I can to improve Eva's life and the lives of others living with CF.
I never thought I'd have the courage or energy to start Spectrum Winter 2017
a lobbying marketing campaign, but when CF drug Orkambi was initially refused funding, I had to help. Eva wasn't eligible for the drug but I wanted to help those who were. I wanted to support inspirational CF campaigners like Jillian McNulty, Orla Tinsley, Keith McCabe, Aisling and Terri Golden, and so many others. With the help of my employer, Rothco, YesOrkambi was born - a social media campaign designed to give the rest of the CF Community tools to lobby with. Videos, photos, weekly posts about how long we had been waiting, pre-written tweets and emails - as much inspiration as possible for people to share so they could push to have their voices heard. It was really about offering backroom support and making a statement that this issue was not going to go away. We were all in it for the long haul. Some people suggested it was selfless of me to get involved when Eva couldn't benefit; but nothing is ever truly selfless. I was looking at the bigger picture and, of course, at the Vertex pipeline. I have faith that Eva's drug will come (all eyes on the triple!) and I felt passionately about the PRINCIPLE of access to potentially life-changing medication. If we faltered here, where would that leave any of us?
While I like to think (or pretend!) that I'm quite a strong person, I've felt broken many times over the last few years; the lows usually coinciding with bumps in our CF road. To help work out those feelings and make some sense of
them, I started a blog called My Little Miss Salty (mylittlemisssalty.com). Here my goal is to raise awareness and also tackle the mental struggles that parents of children with a chronic illness deal with. While I hope it helps other parents in some small way, it's mostly a form of self-therapy! We all have our own coping mechanisms, and I guess this is mine. I never thought I'd put myself out there like that, but I'm so inspired by my daughter that I've found myself opening up and speaking up in ways that I never thought I was capable of. This month, I took it one step further and left my job with Rothco to start my own freelance writing and creative consultancy called The Salty Pen. Another example of something I never thought I would do! But Eva has taught me that we have to strike now and not allow ourselves to drown in a sea of what-ifs. If something is not working, you change it, you improve it. You have to pursue happiness and balance instead of waiting for the universe to hand it to you on a plate. Like all parents, I teach Eva lots of the basics on a daily basis - kindness, manners, the importance of doing your treatments! But she teaches me the bigger life lessons. She is, without a doubt, the greatest teacher I have ever had and I am blessed to share my life with her.
Spectrum |Winter 2017
9
Hold On To Your Kite (#BeatingCF) By Aoife Rafter, PWCF - 25 I was diagnosed at the age of 9 and for most of my childhood I was in and out of hospital or absent from school with chest infections. This pattern continued into my teens, causing me to miss several weeks of college in DIT where I was studying Tourism Marketing. This resulted in my decision to drop out of my Level 8 degree. I felt completely overwhelmed with the amount of material that I needed to catch up on in order to pass my third year exams. I really began to feel like my mental health was starting to suffer and so, this led to my decision to drop out of college and give myself a break. Once I felt ready to start tackling the road to education again, it was a long one. I knew I needed to study something that I had a real interest in. Not to sound completely corny, but from a young age, Cystic Fibrosis has really shown me how precious life is. For this reason I have always wanted to do something somewhat meaningful with my life, (so much for not sounding corny!) My new path to education started with a FETAC Level 5 course in Childcare, then on to a Diploma in Care Practice and finally, my Level 8 Degree in Social Care Practice in ITT. After seven years of seeing my younger sister and all of my close friends graduate before me, it was finally my turn on 1st November 2017. I graduated with a First Class Honours in my Level 8 Social Care degree. I'm extremely proud of this achievement. Spectrum Winter 2017
I am also very grateful to say that I am eligible for Kalydeco (Ivacaftor), and have been taking it the past four and a half years. This fantastic drug has changed my health and my entire life in so many ways. I have started to really invest in my health by taking part in personal training in my local gym in Naas, Unit 3: Health & Fitness. My trainer Gary is utterly fantastic and knows just how much to push me. Thanks to Gary's efforts, I recently built up the confidence to climb Croagh Patrick on 17th November 2017, in aid of CF Ireland with my boyfriend Rob. This was beyond difficult and challenging! There were so many times that I was unsure if I would complete it. I needed to stop 5 times for a break and to take my ventolin inhaler. When we finally reached the top, we thought all our worries were over and all we had to do was 'fly' back down. That certainly wasn't the case! The rain kept
pouring and the darkness was creeping in rapidly, needless to say, it probably wasn't the best idea to do it in November! We were literally descending on our hunkers, trying to beat the darkness, which we failed to do! I fell on my backside three times as I couldn't see as much as a foot in front of me! The whole climb took me 5 hours and 20 minutes. I can assure you that we enjoyed our dinner that night and both of us were asleep by 8:30pm! Overall, it was a fantastic, sometimes scary, but extremely worth while experience! My next adventure is to backpack the East Coast of Australia and hopefully stay on for a year with my working holiday visa. During this trip we plan to do a skydive in aid of Cystic Fibrosis Ireland, another two things to be ticked off the bucket-list! I am also in the process of creating my online blog 'Hold on to Your Kite', sharing my experiences of battling CF in relation to education, travel, employment and other aspects of my life. Until then, if anyone wants to keep up with my CF journey, feel free to follow my Instagram account @holdontoyourkite_irl
Spectrum |Winter 2017
11
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 Apr 13th: 65 Roses Day Cystic Fibrosis Ireland 65 Roses Day will take place on Friday 13th April 2018. We are looking for your support to help raise funds and increase awareness of Cystic Fibrosis across the country. There are 3 ways you can help support Cystic Fibrosis Ireland 65 Roses Day.
1)
65 Roses Day - Friday 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 â‚Ź2. We will be looking for volunteers to help sell our purple roses in every county across Ireland. If you feel you can help us then we would love to hear from you. Please contact our office on 01 496 2433 or email fundraising@cfireland.ie. We will also be working closely with our CF branches to ensure that everyone will be able to buy a purple rose on the day. Keep an eye out for the campaign on TV, Radio, Press and Social Media in the coming weeks.
2)
65 Roses Challenge
The 65 Roses Challenge is where we ask our supporters to organise a '65' themed fundraising event as part of the 65 Roses campaign. Previous examples of challenges include a 65 Roses Tea Party, a gym doing 65 exercises in 65 minutes and schools holding a 'No Uniforms Purple Day' in school. The challenge can be as simple or as challenging as you wish, so get your thinking caps on. For more ideas, check out our 65 Roses Challenge FB Page at https://www.facebook.com/events/517925208587303/. If you would to discuss an idea or need fundraising materials then please call us on 01 496 2433 or email fundraising@cfireland.ie
3)
65 Roses Text Donate
Support 65 Roses Day by texting 65 Roses to 50300 to donate â‚Ź2 to Cystic Fibrosis Ireland or donate online at www.cfireland.ie.
Spectrum Winter 2017
April 14th: 65 Roses Skydive If a skydive has always been on your bucket list then this is your chance to tick it off while supporting a great cause. The 65 Roses Skydive will take place on Saturday 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 the 65 Roses Challenge. This will be one of the most exciting things you will ever do. You need to register with CF Ireland to take part and the cost of registration is €20 with a fundraising target of €500. Once you register with CFI you will receive a fundraising pack. The fundraising money needs to be lodged to CFI by Friday 30th March to be eligible to take part. Please note only those 16 years old or over can take part. Registration forms can be downloaded from our website www.cfireland.ie or contact our office on 01 496 2433 or email fundraising@cfireland.ie.
May 10th to 13th: Malin2Mizen Cycle4CF Registration is open for Malin2Mizen Cycle4CF and plans are well under way for our 2018 event taking place from Thursday May 10th to Sunday May 13th. Thank you to all those who have already signed up and we would encourage anyone thinking of taking part to sign up as soon as you can as there are a limited number of places available and to allow you to get started on both your training and fundraising. The fundraising target for each participant is €2,000 and this will cover your food and accommodation for the 4 days of the cycle. To secure your place you must pay a registration fee of €250 before Friday 26th January. You can register online through the CFI website at the link below, request a registration form by calling our office on 01 496 2433 or emailing pminchin@cfireland.ie. https://www.cfireland.ie/malin2mizen-cycle-for-cf
June 3rd: 1 in 1000 - VHI Women's Mini Marathon Don't forget! The 2018 VHI Women's Mini Marathon will take place on Sunday June 3rd this year. A new day, but the same great event! One person can make a difference! You can be that one person for Cystic Fibrosis Ireland by registering to take part in the Mini Marathon as part of our One in 1,000 Campaign. Registration for the VHI Women's Mini Marathon is due to open at the beginning of March. Once the VHI confirm the exact date, we will let everyone know. In the meantime you can sign up with us to be the One in 1,000 for CF on www.cfireland.ie and get your fundraising pack, or contact Rachel at rbyrne@cfireland.ie / 01 496 2433 for more information. So come on, get the girls together and walk, jog, run, or crawl (!) to support people with CF! Spectrum |Winter 2017
13
Sept 14th to 20th: Paris2Nice Cycle CFI are currently recruiting cyclists for the 2018 Paris2Nice cycle. This is a really well organised and extremely rewarding event. Cyclists will fly to Paris on Friday 14th September and begin cycling on Saturday 15th . The cycle makes its way along beautiful country roads with plenty of food stops in the scenic villages and towns along the route. The cycle will finish on the Promenades Des Anglais on Thursday 20th where you will be greeted by the welcoming team followed by a celebration dinner that night. Cyclists are free to fly home the following day or some choose to make a weekend of it in the beautiful city of Nice. We would encourage anyone thinking of taking part to let us know here in the CFI office by calling us on 01 4962433 or email fundraising@cfireland.ie. We also suggest you sign up for Paris2Nice mailing list on the website www. paris2nice.com where you can also find details of the upcoming information evenings. The first will take place on January 18th in the Hampton Hotel, Dublin 4.
Sept 28th to Oct 7th: Paddy Kieran's Memorial Walk - 'wFlavours of Romania' We are pleased to announce that this year's annual Paddy Kieran's Memorial Walk will take in 'The Flavours of Romania'. The ten day trip taking place from September 28th to October 7th will cater for various levels of fitness, so that each walker can take part at a pace they are comfortable with. 2018 marks the 24th year of Cystic Fibrosis Ireland's International Walk and promises to be an unforgettable experience. The 2018 walk, which starts in Transylvania and finishes in Bucharest, sees participants walking an average of 10km each day and taking in such sights as the incredible neorenaissance Peles Castle, the stunning Southern Carpathian Mountains, and the historical UNESCO protected Village of Viscri. We had the pleasure of launching the 2018 Walk on December 5th at the Romanian Embassy, alongside the Ambassador to Romania in Dublin, Her Excellency Mrs. Manuela Breazu, and our Walk Ambassador who will be returning again for 2018, Operation Transformation's Dr. Eddie Murphy. Interested in dusting off those walking shoes and joining the fun? Visit www.cfireland.ie or contact Rachel at rbyrne@cfireland.ie / 01 496 2433 for more information.
Spectrum Winter 2017
Oct 29th: SSE Airtricity Dublin City Marathon Are you up for the Marathon Challenge? 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 €73 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. Once you are registered to take part in the SSE Airtricity Dublin Marathon, contact Rachel at rbyrne@cfireland.ie / call 01 496 2433, and she will send you out your fundraising pack and let you know how to get started on your fundraising. What are you waiting for? Sign up now as the 2017 marathon was sold out within weeks of registration. Don't miss out, sign up now and let's get running!
Nov 4th: TCS New York City Marathon Registration will open at the end of January for the TCS New York City Marathon. This is a hugely popular event and is one of the world's greatest participatory events. For anyone who takes part it is always an unforgettable experience. The marathon starts on Sunday 4th November 2018 and runs through all 5 city boroughs (Staten Island, Brooklyn, Queens, The Bronx and Manhattan).
You can sign up with CFI to take part and the package includes: •
Direct return flights from either Dublin or Shannon to New York
•
4 or 5 nights accommodation
•
Return airport transfers
•
Private coach from the hotel to race start on Staten Island
•
Guaranteed race entry
•
Services of Sports Travel guides
If you would like to sign up or find out more then please contact the fundraising team on 01 496 2433 or email fundraising@cfireland.ie
Spectrum |Winter 2017
15
All Year: Schools Fundraising Resource Pack CFI have issued our 'ChariTY for CF' school fundraising pack to all Secondary Schools, with a focus on Transition Year students. Through ChariTY for CF, we hope to partner with schools to raise awareness of cystic fibrosis and help schools to organise fundraising events to raise funds to support people living with CF. By getting involved, not only will ChariTY for CF help schools raise awareness of cystic fibrosis and help raise much needed funds to help support people with CF, it will also help students to develop and strengthen their involvement in community and charity work. To request a pack or to find out more please contact our office on 01 496 2433 or email fundraising@cfireland.ie.
Kilimanjaro CFI facilitate treks to Kilimanjaro, so if you are thinking of taking part in a trek, we advise that you book your place early. For more details and a full list of tour dates, please see our website www.cfireland.ie or contact Peter on email at pminchin@cfireland.ie
Spectrum Winter 2017
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:
SSE Airtricity Dublin City Marathon We would like to say a big congratulations to everyone who ran the SSE Airtricity Dublin Marathon for Cystic Fibrosis Ireland in October. An incredible total of €20,704 has been raised so far to help people with CF by the dedicated runners. We hope that you enjoyed the race and achieved some PBs! We would also like to give a special mention to Evan Scully (PWCF), who broke the European record of fastest person with CF to run a marathon, with an incredible time of 3.09.02. A fantastic achievement.
Paddy Kieran's Memorial Walk We would like to congratulate all the Walkers from the Paddy Kieran's Memorial Walk 2017 on their fantastic fundraising, raising €85,327 as per the cheque presentation to Cystic Fibrosis Ireland by the Walk Committee. Our walkers do an incredible job, each raising around €3,000 on an annual basis to support people with Cystic Fibrosis in Ireland A special word of thanks to the Walk Committee - Bernie Murphy, Vinnie O'Malley and Tony Griffith for their ongoing work to maintain this as one of the longest running and most successful International Charity Walks in Ireland. Finally thanks to our new ambassador Dr. Eddie Murphy and his great support for the walk. Check out the details on our website www. cfireland.ie for the 2018 Walk in Romania, it promises to be another lifechanging experience for all involved.
TCS New York City Marathon CFI would like to say a huge thank you to our team of 14 runners who took part in the TCS New York City Marathon 2017. This was one of the largest teams that has ever taken part in this event on behalf of CFI. We would like to give a special mention to David Crosby, a double lung transplant recipient who was part of the team and completed the marathon in just over six hours. David was diagnosed with Idiopathic Pulmonary Fibrosis in 2015 and underwent the double lung transplant in 2016. Running alongside him was his wife Katie, his mother Kathleen, his fitness instructor Andy O'Brien, cousins, friends, as well as his Consultant Cardiothoracic Spectrum |Winter 2017
17
surgeon, Professor David Healy. David and his fellow runners teamed up with CFI and the Irish Lung Fibrosis Association to raise funds for the Transplant Unit at the Mater Hospital with the final total raised to be announced in January. Well done to all involved!
Head2Head Walk The 2017 Head2Head Walk was the biggest and best yet with over 500 walkers taking part. There was a great buzz and excitement in Howth on the morning of the walk as the sea of purple t-shirts departed to make their way along the 26 mile route towards Bray. A lot of planning and organisation goes into organising this event and CFI would like to say a special thank you to Mary McCarroll and Jem Downes along with their team of volunteers who make this event a great success each year. We would also like to thank the St. John Ambulance and the Gardai for their support and Fyffes for providing bananas for all the walkers. We were also delighted to have our charity partner Spar on board as a sponsor of the walk this year. Not only did they provide snacks, drinks, signage and goodie bags but they were also out in force with their own team of walkers taking part. The support of Spar was greatly welcomed and was a great addition to this fantastic event. Thank you to all those who took part and fundraised with almost â‚Ź40k raised to date from this year's event. Make sure to put the 2018 Head2Head Walk in your diary with the walk taking place on Sunday 16th September.
Riverdance Cystic Fibrosis Ireland were delighted to be chosen as the 2017 Charity Partner of Riverdance. A huge total of â‚Ź29,404.37 was raised during the year by Riverdance. The money was raised through collections, proceeds from the opening night at the Gaiety Theatre and mainly from the Riverdanceathon, with dancing schools from all over Ireland taking part on the day and raising funds to support people with CF! We would like to say a huge thank you to the Riverdance staff and performers as well as to all the dance schools who helped raise such an incredible amount of money. This was a hugely rewarding initiative for CFI, which was made possible by Riverdance and helped raise lots of awareness of cystic fibrosis whilst also giving two PWCF, Katie Murphy & Jessica Cassidy, the opportunity to join the Riverdance troupe. Congratulations to everyone involved and thank you once again to Riverdance for selecting Cystic Fibrosis Ireland and supporting the CF Community in Ireland.
Spectrum Winter 2017
Paris2Nice Cycle CFI would like to say a huge well done and thank you to our team of cyclists who took part in the Paris2Nice cycle 2017. The team was made up of Enda Greehy, Teddy Otto and Michael Martin. The team raised a fantastic total of â‚Ź23,390.40. The guys started cycling from Paris on Saturday 16th September and made their way down through some lovely towns and villages before arriving in Nice on Thursday 21st. All the cyclists were greeted by the welcoming team at the finish line along The Promenades des Anglais in Nice before enjoying a celebratory meal that night. A great time was had by all who took part and they would highly recommend this cycle to anyone thinking of taking part.
Spar COTY Cystic Fibrosis Ireland were delighted to have been chosen by Spar Ireland as their Official Charity Partner in May, a partnership which will run for the next two years. So far it is a partnership that has got off to a great start with Spar Collection Boxes for Cystic Fibrosis Ireland in Spar and Spar Express Stores across the country. Spar are also providing a donation on sales of selected Spar Own Brand products to Cystic Fibrosis Ireland and supporting a number of fundraising events. The latest of these was our Head2Head Walk in September where Spar were out in force both in terms of participation in the walk itself and supporting the walkers through the day. They provided refreshments at the start, along the route and at the finish in Bray, where Spar staff handed out Spar Goody Bags to all the walkers. It helped enhance what is already a fantastic day hosted by Jem Downes and Mary McCarroll and all of their support team in the Eastern Branch of CFI.
For Christmas, Spar launched their Spar Twitter Tree Campaign, as per the photo on the front cover. Spar called on the public to help them to raise funds for Cystic Fibrosis Ireland by tweeting #underthetree at Christmas! By simply sending a tweet, people were able to light up a bulb on the tree and Spar agreed to donate â‚Ź20,000 to CFI once all the bulbs have been lit. A huge thank you to Spar for this fantastic campaign raising funds to help people with Cystic Fibrosis and raising awareness of CF. Thanks also to Jillian McNulty (PWCF and CF Advocate) for her support launching the campaign, including starring in an amazing video covering the challenges Jillian faces each day and also to Rosanna Davidson (Model and CFI Ambassador) for her support with the launch. We are looking forward to another great year working with Spar in 2018!
Cinema Advert Cystic Fibrosis Ireland were delighted to be chosen as the Charity Partner for the Institute of Advertising Practitioners in Ireland (IAPI) Cannes Young Lions Spectrum |Winter 2017
19
competition, which included a cinema advert that was shown in cinemas throughout Ireland in Oct / Nov. 'Fight to Breathe' was created by Rothco, filmed by Pull the Trigger and screened in cinemas nationwide by Wide Eye Media as a follow on from the IAPI competition. CFI wishes to say many thanks to IAPI, Rothco, Pull the Trigger, Wide Eye Media, Edelle Collins whose breathing featured in this advert, Bernie Martin for her support in Rothco and everyone who helped put this advert together. The advert helped raise awareness of cystic fibrosis across the country and was made possible by Cystic Fibrosis Ireland being selected as the Charity Partner for the IAPI Cannes Young Lions competition in 2017. Thank you once again to everyone who made this amazing advert possible!
Shane O'Neill Beard Shave Thank you to Shane O'Neill from Wexford and his two friends Eoin McMahon and Paddy Murphy who organised a beard shave in aid of CF Ireland. Shane (PWCF) had been growing his beard since July 2016 and Eoin and Paddy decided to join him in January 2017. All three shaved their beards in July 2017. The guys fundraised for both CF Ireland and the Tracey Lawlor Trust with both charities receiving â‚Ź3,204.26. They would like to give a special mention to everyone in Wexford Golf Club who helped them with their fundraising and for hosting the 'Beard Shave'. Pictured in the photo are: Back Row L to R: Eoin McMahon & Paddy Murphy. Front Row L to R: Larry O'Neill, Shane O'Neill, Peter Minchin (CFI) & Derek Walsh (Wexford Golf Club)
Mizen to Malin Cycle for CFI During the summer of 2017 Eoin O'Donovan, Kevin Black and Niall McMahon cycled the length of the West Coast of Ireland beginning in Mizen Head and finishing in Malin Head. The three friends brought everything they needed with them on their bikes, camping out along the way at different sites. It was a memorable trip which they thoroughly enjoyed and they raised a total of â‚Ź1,290 for CFI through their efforts. They would like to say a special thanks to everyone in Templeogue Synge Street GAA club who were very supportive with their fundraising. Pictured at the cheque presentation from L to R are: Peter Minchin (CFI), Eoin O'Donovan, Kevin Black and Niall McMahon.
Spectrum Winter 2017
Chartered Accountants Ireland Student Society Cork CFI would like to thank Emmet Fenton-Leogue and his colleagues at the Chartered Accountants Ireland Student Society Cork for donating €1,000 to CFI as proceeds from their annual charity ball which was held in the Clayton Hotel in Cork. There were over 100 people in attendance with the proceeds coming from both ticket sales and a raffle on the night. Pictured below is Aisling O'Neill from the Cork CF Branch accepting the cheque on behalf of CF Ireland from Emmet Fenton-Leogue of the Chartered Accountants Ireland Student Society Cork.
Christmas Carol Singing Choirs We would like to say a big thank you to both the CÓRus Choir and the Park Singers Choir who recently took part in singing Christmas carols on behalf of CF Ireland. The CÓrus Choir sang on the afternoon of Sunday 10th December in Jervis Street shopping centre while The Park Singers sang in Stephens Green shopping centre on the evening of Tuesday 19th December. Their fantastically festive singing accompanied by some enthusiastic bucket shaking helped us raise a grand total of €1836.02 Well done to all those who took part!
Cake Sale in Tipperary Thanks to Isobel and Vivienne Flynn and their cousin Lisa Azoulay from Paris held a cake sale at their home in Tipperary over Hallowe'en and raised €242.14
Spectrum |Winter 2017
21
Encourage your employer to select Cystic Fibrosis Ireland as their Charity of the Year? As companies look at who they are going to select as their Charity of The Year for 2017, why not ask your company to consider Cystic Fibrosis Ireland? We can provide you with a copy of our Impact Report which outlines the 10 key ways Cystic Fibrosis Ireland have used the funds raised in 2014 / 2015 to help improve CF services leading to a better quality of life for people with CF in Ireland.
Ways your company and workplace can support CFI... Charity Of The Year The easiest and best recognised way your company can provide support to CFI whilst meeting their own Corporate Social Responsibilities would be to select Cystic Fibrosis Ireland as their COTY. Many companies allow their employees to select the COTY. If you get the opportunity please nominate CFI as your chosen charity and encourage your colleagues to vote for us! If you need any support from CFI with the process, please give the Fundraising Team a call on 01 4962433 and we will be happy to help you with supporting materials, application forms, advice, presentations etc. If your workplace does not have a COTY scheme in place, it may be something they are willing to consider and again we would be happy to support you if your employer would like more information about CFI and the work we do. The following activities would normally form part of the COTY partnership, but they can also be something you do within your workplace during the year as stand-alone activities to raise funds and awareness to help people with cystic fibrosis in Ireland. Corporate and Social Activities Many companies host a variety of sports and social activities during the year which could range from coffee morning and bake sales, to sports days, quiz nights or golf days, all of which can be occasions to raise money to support the work done by CFI. These type of activities are encouraged within business as a fun way to break down barriers and to build teamwork between employees, while providing a great opportunity to raise funds and awareness to support charities.
Spectrum Winter 2017
Spar Cystic Fibrosis Ireland was chosen as their Charity of the Year by Spar from May 2017 for the next two years. Having being nominated by their stores, we were delighted to be chosen as their COTY following a voting process involving all stores. We would like to thank Barry and Aisling Jones for their support in this process and their good friend and Spar Store Owner, Gerard Farrelly. SPAR has vowed to raise funds during 2017-2018 for Cystic Fibrosis Ireland through collection boxes in 400 SPAR stores nationwide, a donation on selected SPAR Own Brand products and through public fundraising for a number of key events. It had been an excellent partnership so far with Spar supporting Cystic Fibrosis Ireland at their Spar Fitlive and Blas na hEireann events as well as providing tremendous support for our Head2Head walk in September. We look forward to working closely with Spar over the coming 18 months including on our key campaigns including 65 Roses Day, 1 in 1000 VHI Women's Mini Marathon and Malin2Mizen Cycle4CF.
s
PWCF in Ireland need your support! GAA
Cystic Fibrosis Ireland were delighted to be announced as Official Charity Partner for the Official GAA for the year ahead in Croke Park on June 12th. The GAA will help Cystic Fibrosis Ireland raise awareness about cystic fibrosis and our work as well as champion CFI in our fundraising efforts throughout the coming year. Please take the opportunity to talk to your local GAA Club to confirm Cystic Fibrosis Ireland are an Official Charity Partner for the GAA for the coming year and to see if they can assist you with your fundraising work. Aogรกn ร Fearghail, Uachtarรกn CLG confirmed this support at the launch - "I look forward to seeing the Charity Partners benefit and prosper from their link with the GAA over the coming year, and we look forward to helping and supporting them in the extraordinary work they do". Cystic Fibrosis Ireland - Sporting Events You can support CFI with your colleagues by participating in a range of Sporting Events in 2018 either as part of a COTY programme where you work or by simply putting a team together and participating in our events with your colleagues. Full details of all events will be available on our website at www.cfireland.ie and once your enter, contact the CFI Fundraising Team and we will organise your Fundraising Pack. 2018 events will include; London Marathon (April), Malin2Mizen Cycle4CF (May), One in 1000 VHI Women's Mini Marathon (June), Paris2Nice Cycle, Head2Head Walk (Sept), Paddy Kieran's Memorial Walk, Dublin City Marathon (Oct), New York City Marathon (Nov), Skydives, Kilimanjaro and other Overseas Challenges (All Year). You can have great fun with your work colleagues while raising much needed funds to help support provision of services to help PWCF in Ireland. Why not check also if your employer is willing to provide match funding for monies raised by their employers to support CFI.
65 Roses Day - Friday 13th April 65 Roses Day 2018 (Our National Flag Day) takes place on Friday 13th April. This is the National Fundraising Day for Cystic Fibrosis in Ireland and we will have volunteers selling our emblem, the purple rose in Shopping Centres and on the streets across Ireland. If your company is looking for volunteering opportunities and perhaps allows for volunteer days to support charities, then why not ask your colleagues if they would like to volunteer to help CFI on 65 Roses Day. If you and your colleagues can help us on the day, please call the CFI Fundraising Team on 01 4962433 and we will organise to get you involved in your local or most suitable Corporate Sponsorship Another way your employer could help support PWCF in 2018 would be to sponsor one of the major events hosted by CFI. This could include our National Conference which takes place in Dundalk in April, 65 Roses Day also in April, the Malin2Mizen Cycle4CF in May, One in 1000 VHI Women's Mini Marathon in June or the Head2Head Walk in September. By sponsoring our events, we can cover the costs involved in organising events, recruit additional participants allowing us to generate more funds to support the provision of support and services for PWCF in Ireland. For support with any discussions with your employer or a potential Corporate Sponsor, please do not hesitate to contact the CFI Fundraising Team
Spectrum |Winter 2017
23
Section 3: Stories Paddy Kieran's Memorial Walk 'Charms of Croatia' - September 2017 A short and simple walk through of the 2017 Cystic Fibrosis International Walk to Croatia and Bosnia and Herzegovina by PWCF walker Ben McCarthy. Friday, the 22nd of September at 4am. While many were sleeping soundly in their beds, a group of thirty gathered in the empty halls of Terminal 2 at Dublin Airport. While still shaking off the few hours of sleep we had under our belts, we checked in and eagerly awaited for our call to board. I for one, was new to the walk experience and the friendly faces and warm smiles helped me settle in and make some new friends very quickly. As veteran and novice walkers lined up outside the check-in gate, a photo was taken by our very own Nuala to officially begin the 2017 walk.
a fairy-tale. On our way back to our lodgings, we were able to observe the local craftsmen and women who made intricate clocks out of oak wood and limestone, made liquor from local produce and sweets from the honey of the local apiaries. And so ended our second day. On our third day, we ventured around Medjugorje, visiting many wonderful and interesting places, all situated around a 10 kilometre hike. We attended the daily international English mass, held at the Medjugorje parish church and met many new people from all over the world. We visited a shrine to the holy mother inside the parish church and we left petitions, along with our personal wishes in the candle grove. Later in the evening, we fulfilled our experience in Medjugorje by hiking five kilometres up the Apparition hill, visiting the site at which Mary appeared to the six visionaries back in 1986. It was an experience to say the least, as we did it alongside groups of people from all over the world.
As we passed over the United Kingdom, Germany, The Alps and Italy, the simple fact that we were getting closer to our destination became clearer as the sea turned an elegant sapphire blue and the ground beneath began to dip and rise as we travelled over the beautiful mountainous region. After finally landing at Dubrovnik airport after three and a half hours, we were incredibly lucky to be greeted by beautiful sunshine and clear blue skies. The week ahead was looking good and like Annie, all I could hear running through my head was 'I think I'm gonna like it here'. After an hour of travelling along the beautiful Croatian countryside, we had to bid it farewell for a few days as we passed through a border checkpoint into Bosnia and Herzegovina. Stopping in the dazzling city of Trebinje, we were introduced to the Bosnian culture by our guide, Vladimir, better known as Vlado, and we found memorials for the brave soldiers who gave their lives in both the Second World War and the much more recent, Bosnian or Yugoslavian war. Finally, we reached our destination of Medjugorje. We checked in to our hotel and so ended our first day. Bosnia is a country of underestimated natural beauty and this was made clear to us as we walked ten kilometres to Kravica waterfall in a nature preserve on Saturday. Kravica is a set of waterfalls that feed into a pond and flowing stream. It was home to many different wildlife, and looked like it was almost out of Spectrum Winter 2017
Sadly, on our fourth day, we said goodbye to Bosnia and set out to travel to Croatia, stopping on the way to visit a cultural and historically rich town called Mostar. Still holding scars from the wars, the towns' culture was beautifully captured in art in vast myriads of colour painted by local artists, or in ornate plates and jewellery made of silver, or copper by the local blacksmiths. The town, unfortunately has a bloody history, which resulted in the death of fifty Franciscan priests, who have been honoured in plaques. After leaving Mostar, we also had to say goodbye to Vlado and then we travelled to Orebic, an amazing seaside town founded by families of captains and ship-owners. On the following day, we met our new guide Lidia. After a brief two kilometre walk around Orebic, we departed via boat to the island of KorÄ?ula, another town with a beautifully intricate history, including the symbol of
a lion, holding an open book, which symbolised how Korčula avoided destruction by voluntarily joining the then-growing Venetian Empire. The towns beauty was captivating for lack of a better word, and after a five kilometre walk around Korčula, we explored the towns old defence walls and travelled along the marinas before returning back to Orebic, again by boat. After returning from Korčula, we travelled up into the hills to visit a monastery, and we ate at a small restaurant that strictly served local cuisine and we were treated to a proper Croatian goulash. Once our meal was finished we hiked back down the mountain, to our hotel under the blistering sunshine. After leaving us all to our own vices for the remainder of the afternoon, we were invited to an honorary awards evening to celebrate the efforts of one of our walkers, Bryan Moore. Vincent O'Malley, a PWCF and one of the committee members, made the presentation to Bryan on the night and everyone celebrated in the recognition of their friends' efforts. We were also then joined by our walk's ambassador, Dr. Eddie Murphy, who then stayed with us for the remainder of our walk. On Wednesday, we travelled to the city of Dubrovnik, with a short stop on the way in the town of Ston. Ston was a breath-taking town built at the base of a mountain, with large stone walls built into the side of a mountain. There is an annual 26 mile marathon along the Ston town walls, which is very popular in the region. We walked around Ston, observing the town before getting back upon the bus to travel to Dubrovnik. Dubrovnik is a city split between its more historic, Old town and more modern, new portions of the city, which include a large harbour and marina that can cater huge cruise ships and also allow local fishermen and women to go about their business. For a large section of our time in Dubrovnik, we trekked around Old Town, visiting the local churches, schools, colleges and universities. We even got our group photo taken with the stunning panoramic viewing of the city in the background. After our time in Dubrovnik, we unfortunately had to say goodbye to two of our walkers, sisters Joan and Collette, who were returning home early for a wedding.
invited into the home of a local family and we were fed some of the local veal and lamb, and treated to some local crafted brandy. After an impressive meal, we hiked up some hills until we reached a local farm. The farm made wine, which we were invited to taste. The wine was only a few days old, so the flavour was still quite sweet on the palate, but it was quite an experience. After that, we went hiking again, climbing higher and higher until we came to a clearing in the woods. The view from the clearing was stunning and we were able to see for miles. Shortly after, we hiked back to our bus which returned us to our hotel. Sadly on our way, we had to say goodbye to Lidia, as she had to return home to Dubrovnik. That night we had what should have been our last dinner together and we were all presented with certificates of completion for our walk together as a group. It was an incredibly fulfilling experience for me and it is one that I wish to continue to partake in, in the many years to come. And so ended, what should have been our last day. Up out of bed and checked out at the early hours of half seven we were prepared to return home. But despite the wonderful streak we had all week, calamity had to strike at some point. Sadly, we were delayed in Dubrovnik by a staggering twenty seven hours as our plane in Dubrovnik Airport had two punctured tires. As the replacement tires had to be flown out from Ireland, Aer Lingus, paid for us all to stay in the Admiral Grand Hotel, just outside the city of Dubrovnik, in the town of Slano. We were tired, weary travellers but thankfully we were able to return home the following day. I loved the walk and I loved the company I had, making new friends and meeting old ones. I felt pride in myself and the group that we completed everything that we set out to do. All I can say is I will continue to support, fundraise and walk for Cystic Fibrosis for as long as humanly possible and I hope that anyone that reads this piece will also please help us and support us. Bring on Romania 2018!
On what was our last day of walking, we decided to indulge in some of the local culture and went hiking through local vineyards. We walked along the roads, watching farmers pick grapes and olives, so that they could be shipped off and processed. After an hour, we arrived at a monastery and a local donkey reserve. We learned some more of the local history before continuing onto the village of Kuna. In Kuna, we were Spectrum |Winter 2017
25
CALENDAR OF FUNDRAISING EVENTS 2018 April 13th (Friday)
65 Roses Day - National Fundraising day for Cystic Fibrosis
14th (Saturday) 65 Roses Skydiving Challenge - 65 participants to Skydive for CF Month April 22nd (Sunday)
65 Roses Challenge Virgin Money London Marathon
May 10th to 13th
Malin2Mizen Cycle4CF
June 3rd (Sunday)
One in 1000 - VHI Women's Mini Marathon (1,000 participants)
September 14th to 20th
Paris2Nice Cycle
16th Sept
Head2Head Walk - Howth Head to Bray Head
October 28th Sept to 7th October Paddy Kieran's Momorial Walk - 'Flavours of Romania' 28th (Sun)
SSE Airtricity Dublin City Marathon
November 4th (Sun)
TCS New York Marathon
All Year
Skydives Overseas Challenges eg. Kilimanjaro ChariTY Fundraising Pack - Schools
For further details on any of our fundraising events, visit our website www.cfireland.ie, contact the CFI Fundraising
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 2017