Spectrum
Autumn / 2017
È New form of Organ Donation consent È Exercise & Physiotherapy ÈTransplants & Cars È Knitters 4 Life, Sara Cross È Caroline's Malin 2 Mizen Journey
Spectrum |Autumn 2017
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Foreword Orkambi and Kalydeco roll out going to plan CFI understands that the roll out of Orkambi is going to plan and some 300 people with CF are now on this important drug in Ireland since it was approved in April 2017. We have had many lovely emails and calls from those who have experienced a good/very good response from taking Orkambi. Of course the impact of Orkambi has not been uniform and some have experienced better results than others. Let us know your experience through Sam Byrne sbyrne@cfireland.ie. It is great that other CFTR drugs 'in the pipeline' are showing very positive outcomes. All four of the major Vertex clinical trials, with different combinations, are showing very exciting results. CFI estimates that these drugs will be available in around three years, which is very good news. Meanwhile the HSE (in its public statements) appears to be undecided about the Orkambi and Kalydeco deal. One minute they are grumbling about how much of the drugs budget it is taken up by Orkambi and the next minute they are saying that other drugs companies should follow the Orkambi example and enter into pipeline and other deals to make their drugs more affordable. It's quite clear we need a new national policy on accessing and funding new and innovative drugs in Ireland (google: 'Steering the Course to avoid the drugs iceberg' for more information.) Organ Donor Consent Many congratulations to Minister Simon Harris TD on his decision to bring in a 'soft opt out approach' to organ donor consent in Ireland as part of the Human Tissue Bill. See the article in this issue of Spectrum. CFI along with CF Hopesource met with Minister Harris on the pressing need to progress the inpatient rooms in Beaumont Hospital recently. We anticipate that this commitment which is in the programme for Government, will be reflected in the capital spending estimates for 2018
Philip Watt (CEO) Samantha Byrne (Editor)
Front Cover: Enda Greehy, Teddy Otto and Michael Martin who took up the challenge of cycling from Paris to Nice from 16th to 21st September for CFI.
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CONTENTS Latest News | 2-5
Information | 7-8
È Beaumont Progress È Orkambi & Kalydeco extension È The rare disease plan in Ireland È IVF support in Ireland È New form of Organ Donation consenr
È Exercise and Physiotherapy È New Staff & CFI È Exercise and Physiotherapy
Empolyment/Disability | 6
È Justin G. Reynolds È Sara Cross
È Valuable - Employment & Disability
Spotlight | 9-12
Fundraising | 13-25 È Challenges and Events È Thank You È Story - Malin 2 Mizen Caroline Heffernan
DISCLAIMER: The views of contributors, when expressed in this publication, do not necessarily reflect the position or policy of Cystic Fibrosis Ireland. Spectrum | Autumn 2017
Latest News Beaumont Progress Philip Watt (CFI); Maeve Mullin (CF Hopesource); Professor Gerry McElvaney and Dr Cedric Gunaratnam met with Minister Simon Harris TD and Professor Charles Gallagher, Lead of the National Clinical Programme for CF, on Wednesday 30 August to discuss the government's commitment to build the inpatient rooms in Beaumont promised in the programme for government. The meeting was very positive and Minister Harris promised to meet up with HSE Estates and Beaumont hospital management to discuss the details of the project. We are expecting the estimates for the CF Unit to be included in the 2018 Capital plan and included in the next budget process as it is in the Programme for government.
Orkambi and Kalydeco Extension We understand that the roll out of Orkambi and Kalydeco extension is going smoothly with those most in need being targeted first and there are now over 300 patients with CF on Orkambi. We have had some very moving emails in on the benefit of these CFTR drugs. As predicted by the trials, some people will benefit more than others, but the overall sense coming back is that it has been a very positive beginning. CFI will keep our members up to date on research related to Orkambi and Kalydeco and the 'pipeline drugs' for those who already benefit from a CFTR drug.
Increasing the availability of organs for transplantation CFI has been active in supporting the Human Tissue Bill and its commitment to soft opt out organ donation, in line with CFI policy. CFI coordinates the Irish Donor Network (IDN) which brings together 7 patient groups on this issue. The IDN will be meeting Minister Harris to offer our support to Government on this important initiative.
Reforming the access to drugs system in Ireland CFI has been active in working with other patient groups, academics and pharma on seeking to identify gaps and weaknesses in the present access to drug system. A joint MRCG and IPPOSI paper on this issue was published and received good coverage in the Sunday Business Post.
The rare disease plan in Ireland CFI is active in implementing the National Rare Disease Plan through the Rare Disease Task Group. Key recent successes are the recent HSE commitment to establish a rare disease drug technical review group, similar to that for cancer drugs. The National Rare Disease Office and the Clinical Programme for rare diseases were established in 2015. Through such networking CFI works together with other groups on common interests. Spectrum Autumn 2017
Independent Living Report Significant progress has been made in relation to the Independent Living Report by CFI. We are presently comparing results with earlier IL report to draw key conclusions. Draft to be circulated before next board meeting to be considered by the IL Sub group.
Fundraising for 2017 going well The CFI fundraising for 2017 is well on target. Thanks to fundraising team led by Fergal Smyth and our branches and to the general public and supporters.
New CFI Treasurer and Secretary Many congratulations to Keith McCabe and to Mary McCarroll who were elected as Treasurer and Hon. Secretary at the CFI board meeting of 30 September. A huge thanks to John Coleman and Caitriona Hayes who are stepping down from these roles. We are delighted that John and Caitriona will continue on as CFI Board members.
Cystic Fibrosis Ireland welcomes IVF support but we seek more information on what will be provided Cystic Fibrosis Ireland broadly welcomes the intention by Government to subsidise IVF treatment for couples unable to conceive from 2019 onwards. This is a key issue for people with CF who often need fertility treatment in order to start their own families. Infertility is a lesser known symptom of CF for both males and females, though it affects some people more than others. Ireland is one of the few countries in Europe where people with CF do not have access to subsidised or fully supported IVF treatment. CFI would like to see further detail on this proposal and asks: What will be the level of subsidy? Who will be entitled to the subsidy? Will the subsidy cover more than one cycle of IVF treatment? (â‚Ź6k is the usual price of 1 IVF cycle) Will PGD be covered by the scheme? Preimplantation genetic diagnosis (PGD) is a procedure used prior to implantation in conjunction with IVF to help identify genetic defects within embryos. This serves to prevent certain genetic diseases or disorders from being passed on to the child. Many couples with 1 child with CF opt for PGD to ensure that further children are not born with CF. There are 2 clinics that provide PGD treatment in Ireland. It costs a further â‚Ź10k for PGD treatment at present on top of 6k for IVF. It is completely unacceptable that people with CF have to pay for IVF and for parents with a CF child to pay 10K for PGD. Spectrum |Autumn 2017
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'Fight to Breathe' cinema awareness initiative Following competition, CFI was selected for an awareness initiative and will shortly be shown in cinemas throughout Ireland. 'Fight to Breathe' is produced by Wide Eye Media and is funded by the Institute of Advertising Practitioners in Ireland (IAPI). CFI wishes to say many thanks to IAPI and to Wide Eye Media and to all in CFI who have been involved in the consultation around this initiative. The approach of the awareness initiative is to 'not gloss over the reality of CF' but also to be positive and forward looking as the title suggests. The initiative is part of the 'young lions' programme that provides an opportunity to two young professionals, under the age of 30 to make such a short film - almost akin to an advert. For people with CF or parents who have a very sensitive disposition, you may want to check with the cinema in advance if you are planning to see a film in November or to wait outside until the adverts are over.
CFI supports new form of organ donor consent The Irish Donor Network (IDN) welcomes the introduction of opt-out consent as part of the forthcoming Human Tissue Bill (2017). The IDN represents seven patient groups concerned with organ donation and transplantation in Ireland who agree that a soft opt-out system of consent as opposed to the opt-in policy, currently in operation in Ireland, will be better because: 1. It will save more lives: The number of people awaiting organ transplants in Ireland is more than double the operations carried out. 587 people are currently waiting for potentially life changing organ transplants in Ireland in 2017. If more organs become available, more life-saving transplants can be undertaken. 2. It will bridge the gap between intention and the actual gift of organ donation: The introduction of a 'soft' opt-out organ donor consent system in Ireland will bridge the gap between people's intentions and their behaviour. 85% of people in Ireland are willing to donate organs but only one third of us carry an organ donor card and many of us do not inform our next of kin Spectrum Autumn 2017
of our intentions to donate or otherwise. This results in fewer organs than possible being donated. 3. It will improve organ donor rates in Ireland: Ireland is in only 15th place out of the 28 European Union countries when it comes to organ donation, despite our very high support for organ donation. International evidence has confirmed the positive impact of opt-out consent on deceased organ donor rates. Over a three year period, after making the change to an opt-out system, Belgium saw its rate of organ donation increase by 100%. The recent experience in Wales with soft opt-out has also been very positive. The countries with the best rates of organ donation in Europe have some form of soft opt-out system combined with sufficient infrastructure. 4. It will modernise our organ donor system: Organ donor cards and similar ad hoc initiatives such as phone apps or use of the driver license have had their day. They were useful and worthy in the past, but how many of us have lost and not replaced our donor cards? How many of us have not informed our next of kin of our organ donation intentions? The introduction of an online register for opting out of organ donation will bring Ireland into the modern age. 5. Organ donation will continue to be a 'gift of life'. The new system will continue to embrace the concept of organ donation being a 'gift of life'. The only difference is that potentially more organs will be donated and as a result more families will benefit from the gift of life. Next of kin will continue to be consulted so no family will be forced to donate the organs of a loved one. 6. Ireland has sufficient resources to make soft opt-out succeed. We will always need more resources for our health system, but in this case it should be noted that in Budget 2014 an additional â‚Ź2.92m was granted specifically for the introduction of soft optout. 7. 'Let us get on with it'. This proposed policy has been included in the last two programme for governments with no significant advances until the recent decision to implement the Human Tissue Bill (2017). Meanwhile, people continue to die waiting for a life-saving organ transplant in Ireland. Sufficient resources are in place, though more could always be provided (for example the opening of additional pre and post-transplant rooms) but this is not a reason to further delay this vital legislation.
In Ireland, an opt-in consent system for organ donation Many thanks to Daniel Costigan, CFI Research and is currently in operation. It requires donors to explicitly Policy Officer, who drafted the submission for the Irish consent to leaving their organs for donation. This Donor Network is achieved through carrying an organ donor card. Alternatively, individuals can note their intention to donate on the organ donor e-card smartphone app or on their driver's license. Willing donors are asked to inform their family of their decision, as it is next of kin whose consent is currently required to authorize the donation of the deceased's organs. If no next of kin is available, or if they are indecisive, no consent is provided and organ donation does not proceed. The new system will bring Ireland into the modern age. Instead of opting in, people will be asked to opt out if they don't want their organs donated. An important protection, the 'soft' part of organ donation is that next of kin will still have the final say. The IDN is comprised of the following 7 patient groups: • Alpha One (Antitrypsin) Foundation: The Alpha One Foundation was founded in 2001 to raise awareness, increase diagnosis, promote research and improve the treatment of Antitrypsin Deficiency (Alpha-1). www.alpha1.ie • Cystic Fibrosis Ireland (CFI): CFI was founded in 1963 to support people and families living with Cystic Fibrosis (CF). Many people with CF will need a double lung transplant because of the damage caused to lungs by CF. www.cfiireland.ie • Chronic Obstructive Pulmonary Disease Support Ireland (COPDSI): COPDSI provides support for people with COPD in Ireland. www.copd.ie • Cystinosis Ireland: Cystinosis is a rare, degenerative, inherited disease which frequently requires the need for kidney and sometimes other organ transplants. www.cystinosis.ie • The Irish Heart and Lung Transplant Association (IHLTA): The IHLTA is a voluntary organisation which includes heart, lung(s), heart and lung transplant recipients, family and supporters. www.ihlta.com • The Irish Lung Fibrosis Association (ILFA): The ILFA was set up in 2002 to support patients and families living with Idiopathic pulmonary fibrosis (IPF). www.ilfa.ie • The Pulmonary Hypertension Association Ireland: PHA Ireland was established in 2005 to raise the profile of Pulmonary Hypertension (PH) and to support patients who are diagnosed and living with this disease in Ireland. Persons with PH may require lifesaving lung and liver transplants
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'Valuable' - Employment and disability On Monday 21st of August 2017, four prominent disability campaigners launched a campaign - 'valuable' - calling on businesses across the globe to recognise the value of the one billion people living with disability around the world. The group of four is being led by Caroline Casey, blind campaigner and activist, who is embarking on a 1000km horse ride through Columbia, USA to draw attention to the fact that disabled people around the world are: •
50% less likely to have a job
•
Two times more likely to be living in poverty
In February 2015, they had a controlled trial of switching from an eight-hour to a six-hour working day at the Svartedalens retirement home. This change lead to a 10% drop in sick leave, a 50% improvement in the perceived health of carers and an increase in the time spent on valuable 'social activity' with patients. Given the large amount of overtime already worked by the Swedes, with Stockholmers working on average 6.6 hours overtime per week, the change proved ultimately too costly to roll out.
However, this has not stopped private companies from adopting more flexible and innovative working methods • Three times more likely to have no qualifications and it should not stop us from similarly looking at than a person without disability. innovative and imaginative methods of ensuring that PWCF are employed at various levels of education, skills Her ambition is "to recruit and galvanize a group and expertise. of dangerous dreamers: a small, ferocious tribe of committed pioneers, influencers and inventors to create Daniel Costigan the new world order where people with a disability in employment are valued equally." Research & Policy, CFI While many with Cystic Fibrosis do not have 'visible impairments' and may not identify as being 'disabled', there are parallels with others who similarly object to the medicalisation of their lives and experience on the basis of their impairments. Historically PWCF have not always been encouraged to see themselves as having valuable roles to play and this can be seen in the results of a CFI survey of members carried out at the end of 2015 which confirmed that 30% of PWCF adults are unemployed as opposed to the national average of 9.7%. Employment supports, like the Irish wage subsidy scheme, while extremely useful can also frame PWCF solely in terms of lost hours and productivity. It can be taken for granted that an ability to work more hours automatically translates to greater productivity when this is simply not the case. Workforces across many countries, including Ireland, are seeking reduced hours and increased flexibility. Some countries like Sweden are going as far as experimenting with the introduction of a six hour working day. Spectrum Autumn 2017
Exercise & Physiotherapy By Clare Reilly, Physiotherapist Firstly I would like to thank CFI for the contribution towards my registration that facilitated my attendance at this year's ECFC in Seville. I was fortunate to have a piece of research on 'Muscle Strength and Disease Severity' accepted for poster presentation and my colleague Ronan Buckley had our research on "The effect of Orkambi on exercise capacity and muscle function" accepted for oral presentation, so we were delighted with the ability to attend. The European Conference is a fantastic opportunity to see what other centres of excellence are doing in their clinical work, the challenges they are facing with care in the environment of cutbacks and indeed the new research this is coming out in the area of Physiotherapy. I felt this year in particular there was a strong emphasis on Exercise testing and with that in mind the first session I attended was 'Highlights on exercise' - the highlight of this session (apart from hearing Ronan speak on the outcomes of our research in Orkambi) was an excellent piece of research looking at Lung Clearance Index and CPET in predicting the presence of airway abnormalities, which suggested that exercise capacity in this group of patients was more likely to be limited by non-pulmonary factors. Other research presented at this session looked at the immediate effects of autogenic drainage on ventilator mechanics and concluded that since doing AD improved inspiratory resistance in all airways and a clinical improvement in FEV1 and FVC in Adult patients with Cystic Fibrosis.
your response to an exercise programme? Here is the link to the publication for those enthusiastic enough to give it a go! http://www.cysticfibrosisjournal.com/ article/S1569-1993(15)00202-7/fulltext Aside from the presentations highlighted above, there was a session dedicated to the concept of 'personalised medicine and its implications for physiotherapy'. While it aimed to deliver on a novel or new approach to assessment & treatment of patient, based on disease severity, I came away feeling that perhaps we already do this? All our exercise prescriptions and airway clearance techniques are tailored for the individual already, we work with the patient to attempt to incorporate their treatments into the busy schedule and are always cognisant, that while we do increase burden of care undoubtedly with our treatment prescription, we should always do this based in scientific evidence and tailored to the individual. The Brompton blazed a trail, with a presentation on 'innovative approaches to service delivery' which has had to come about through NHS service delivery cut backs, as yet I don't see us heading towards teleconferencing our assessments, and in some way I think we are very lucky that we can still have this contact with our patient groups on a 1 to 1 basis and we should endeavour to protect this in as far as possible. Finally my parting feeling from the conference was one of contentment. It was a great conference, with some fantastic research presented, but mostly it was one of reassurance, that we do deliver a cutting edge, firmly based in research service that is up there with the best in Europe and it's one we are very grateful to be part of.
The next 'Physio specific' session I attended was 'Assessments in Physiotherapy' at this session I was most taken by a presentation from Germany on the 1 minute sit to stand (STS) test in Cystic Fibrosis my eyes light up! How easy would this be to test exercise capacity in clinics? The conclusions from the presentation that it is a valid outcome measure of functional capacity and the STS repetitions are clinically more practical. With this in mind, watch out at your next clinical appointment as the physio may now reliably measure your exercise capacity without all the fancy equipment - perhaps even a measure that could be used at home, on a monthly basis to measure Spectrum |Autumn 2017
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Spectrum Autumn 2017
Back to the Future: Transplants and Cars! By Justin G. Reynolds The Irish government is proposing a new, improved transplant consent system that is supported by CFI and the Irish Donor Network and many others. If more organs become available people like Justin Reynolds would benefit. Justin is 52 years old and has CF and had a double-lung transplant in 2017 in the Mater Hospital. Hi, my name is Justin. I'm a 52 year old PWCF. I was fortunate enough to receive a double-lung transplant (Tx) in the Mater Hospital, Dublin on the 3rd March 2017 and with that, the gift of life by my donor and their next of kin. I am alive purely through their kindness and generosity and am forever grateful for their gift to me. This article is to help others who are considering Tx, going for assessment or waiting for Tx. I should warn you I remember everything through the medium of cars (I'm obsessed with them), including people, numbers, and events, hence the references and analogies throughout this article. As I understand them, there are 4 criteria for assessment for Tx; 1.
FEV1 =<30% for 6 months
2.
Pneumothorax (perforation of lungs)
3.
Haemoptysis (Coughing Blood)
4. Administration of IVs continuously as maintenance therapy I was @18% FEV1 when I got my Tx and had been on IVs continuously for 14 months pre-Tx. Pre Assessment & Assessment: Disciplined, Motivated, Compliant (or Delorean Motor Co.): This is the key to pre and post-Tx. The greater your commitment to staying well pre-Tx the fitter you are on all levels (physical, mental etc.) should Tx occur and Spectrum |Autumn 2017
hopefully a quick bounce-back post-Tx. You will also be more positively disposed to the Tx Team, there is a supply deficiency with viable donor lungs. There are 4 universal ways of looking at most challenges in life from a personal perspective and most if not all PWCFs will most likely be familiar with them from dealing with CF. Physical, Mental, Emotional & Spiritual. The physical demands of CF on a PWCFs body are onerous, whether one has active infection or is trying to prevent infection, that's a given. Also the effects of continuous infections on your body pre-Tx and coupled with Tx surgery is quite dramatic, however, long-term ensuing damage can be minimised no-end with a rigorous exercise routine. This can be the most difficult part of the run-up to Tx of PWCFs but when transplanted, the effort will have paid off in your ability to bounce-back post surgery. I have two dream cars one of which is a Mercedes-Benz 450 SEL 6.9 (V116). I used my love of cars - models or engine sizes as a benchmark for speed on the treadmill, so 6.9 km/h was always my walking speed target on the treadmill up to 21 months pre-Tx, then it had to be downgraded to 6.3 (another M-B), then 5.3 (after a JaGuaR - which nicely has my initials) and so on.......the point being get something that works for you as a motivator. Treadmill every 4 out of 5 days was the norm for me, in my last 10 months pre-Tx I was on Bi-pap (after a stint on lifesupport in ICU) on the treadmill which was utter mental torture (with claustrophobia as a result).....but it was part of commitment to self!! Leg exercises like lunges and squats and balance exercises were hugely important as the legs are the largest O2 muscle users in the body, keeping them exercised reduces chaotic energy sourcing (CES) as SPO2 drops. CES can occur when your body diverts O2 from the legs to 'feed' other organs which 9
For the mental/emotional aspect of Tx I found high resilience even when it seemed futile was needed to do all the treatments and physio routines to stay as healthy as possible. Staying resilient and motivated as I became more 'disabled' was incredibly challenging, but I had a Clear Focus on the end game (eyes on the prize).... Tx. When I struggled I drew heavily on the Psychologist in my CF centre for both mental and emotional support and coping strategies. The spiritual aspect of Tx is a deeply personal matter and so, be it trusting in life or a God of your own understanding can give hope and faith when there may otherwise be none. Meeting the Tx Team with a view to full assessment/ screening It's ideal to be in an optimum frame of mind when meeting the Tx team. I continuously had a rolling list of all IVs taken, 6 minute walk test results and FEV1s so the Tx team would have an instant snapshot of my decline. I was put forward for transplant assessment in September 2015. Assessment is a lengthy process and took 2 months. Part 1 of the assessment involved numerous (circa 20) tests undertaken for assessment from weight to perfusion scan, it was rigorous but it determined suitability. Part 2 of the assessment process was meeting two Tx Surgeons at the Mater, a Psychiatrist and Social worker as they wanted to make a suitability assessment from physical, psychological and post-op. care stance. I was deemed suitable, notified that i was suitable and placed on the active waiting list. Tx Co-ordinators 'checked-in' every Tuesday once on the active list. I continued to meet Professor Egan over the 16.5 month wait on the list before getting transplanted. Bloods were taken every 4 weeks to determine up to date Cytotoxin levels (Antibodies). Some recipients are lucky and get 'The Call' and a viable set of lungs within weeks of going on Tx list. For others they can wait months or years and some patients sadly die waiting. It can be very challenging to keep up spirits and exercise levels whilst on Tx waiting list, though usually the last hurdle is the most difficult. A good support network is highly advised and I was very lucky fortunate as I had 7 friends who went the mile for me not sure I could have done it without them. Spectrum Autumn 2017
'The Call' I got two calls for Tx, first outing the donor lungs weren't viable, but I got transplanted on the second. I was contacted by a Tx co-ordinator, collected by ambulance and brought to the Mater Hopsital. Upon arrival, a series of bloods were taken (20+). I was prepared for surgery. I was advised my donor lungs were viable and waited a few hours prior to being transferred to anaesthesiology pre-surgery. My surgery was 8.25 hours which is typical. Intensive Care Unit / High Dependency Unit / Heart Lungs Transplant Ward After surgery I was transferred to ICU where I spent 3 days. Day 1 post surgery I was asked just to sit up by the physio and then to sit in a chair for a few hours. Day 2 was when I first went walking. Every day after this your physio exercise routine becomes more intense. Day 3, I was transferred to HDU, a step-down ward from ICU. I was there for 3 days and then transferred to HLTW for the duration of my stay - 18 days in total. After surgery the recovery was quite challenging within the first 3 months, this is the 'high danger' period as your body is in shock from the surgery and your immune system is severely compromised. Severe restrictions apply to your social life and things in general with many, many visits for the first 13 weeks post discharge which is normal. I had to be driven and accompanied for each visit in the initial 11 week period (keep an overnight bag in car when going to OPD appointment in case I was admitted which happened twice). FEV1 @ time of writing is 95.5%. Life after transplant, even though I'm just circa 7 months post-op. has been FUNtastic, back at the car shows, dating and socialising. I am looking forward to returning to work in the future..... I have a future, that's the difference in a nutshell, with a total refund on my misery..... it's the ultimate lottery win!! Very best of luck on your own transplant journey! Contact details for Justin are available via Sam in CF House.
Knitters 4 Life By Sara Cross, PWCF
healthier life. Every experience is a chance to grow, to learn, to evolve back into what you truly are; a creature of power and beauty. I love art in all its many forms. Painting, drawing, video, paper, yarn, science, sewing, writing - this is a neverending list. It has been the way humanity has been able to communicate since the very beginning, an outlet for expression. When I view the world as we know it around me I see art everywhere, even when it's accidental. Most may not even consider it art. They forget that it had to be a thought first, an idea that had to be put together. People have a tendency to limit themselves in this way. They can trap their minds in a world with fences and the gate is firmly locking them safely inside, the ability of expression lost. Art in itself may even be humanity's best quality, because what other creature in the universe can express itself as we do. I decided that the best way for me to share what I now know, is to help others, no matter what walk of life they might follow, help them to find the power and beauty they have hidden within themselves. I had to think on this for awhile to figure out how to achieve such a goal, but the answer was simple enough. I only need to apply my own strength.
Hello. My name is Sara Cross. I have two copies of the Delta F-508 + R1175 + 5T Intronic Polymorphism. That is fancy-talk for Cystic Fibrosis. However, this is not the most important thing about me. I am a daughter, a wife, a sister and a mother. These are the things that are a part of who I am because these are the things that have showed me the path I should follow. I am very lucky. I have had the type of life that has allowed me to undergo a vast range of experiences. I have met people from all over the world and traveled to new places. The lessons and experiences I have walked through are more than I could express in one article, but to sum it all up it has been an amazing journey. The most important thing I have ever learned, and really the most important thing to share with you, is that love and kindness will allow you to move into a happier and Spectrum |Autumn 2017
Then the Universe provided. I met a woman named Kim. Although an experienced knitter, she had always wanted to learn how to crochet. She worked at a location called CB1 (Central Buildings) located at 51a O'Connell Street, Limerick City Centre. She told me it is a community space and an art gallery. I went to check it out. I noticed it really is so much more than that; it is a place where all are welcome to come and have a cup of tea or coffee and experience some beautiful local art. And so, Knitters 4 Life was born. This group has grown in numbers and experience. We meet new people everyday. We teach knitting and crochet for free. We give people back something of themselves, the confidence they may have lost. I have met some amazing people in the last year who are all equally inspiring and all have contributed to keeping Knitters 4 Life alive. Even though Knitters 4 Life is mainly about knitting and crochet we have other members of the group who 11
will dabble in other media, including paper-craft and quilting. I was inspired by this to try my own hand at quilting to see what might happen. After all, limits are a fictional concept. I had never really done any quilting despite my years of sewing. So I made my way to my public library and discovered a beautiful selection of books about quilting and sewing techniques. My mind took over. Within a few days Rose came to life. She is my Comfort Bear. Rose gave way to a new idea, one that showed me that she needed to be shared with the world. I knew that so many could benefit from a Comfort Bear of their own that is unique. They allow one to send away all the fear, pain and sadness and trade it for the most important gift one can receive. Love. I would like to live in a future that sees a better way of life. With the support of all the amazing people around me I have been able to reinvent myself. In the past I have come up against obstacles in my path that seemed impossible to overcome yet here I am proving even myself wrong. I have been able to be active in my community and to help others with tasks they thought they could not achieve. I have been able to complete goals that I thought would always be out of my reach due to having Cystic Fibrosis. So, as I said, it has been an amazing journey. I am currently setting up an art & craft class service to all who would like to participate. These will show how to craft and create art with most media. I hope to express how all of us are creative by nature and how we all have the ability to express. There is no such thing as 'untalented', only those who have not found their stride just yet. Let us grow together as artists and see what kind of beauty we can find in the world.
Sara will be creating a show for artists with CF to showcase and sell their art over the first two weeks of May next year. The exhibition/sale will take place at the CB1 Art Gallery in O'Connell Street, Limerick. CFI will host a cheese and wine reception to open the event.
Spectrum Autumn 2017
Facebook: Sara Cross ScrapNoggin Art & Craft Class Service: scrapnoggin@gmail.com Facebook Page: ScrapNoggin Comfort Bears Order Service: lovecomfortbears@gmail.com Facebook Page: Comfort Bears Knitters 4 Life Free Class Information: 085-153-3968 Facebook Page: Knitters 4 Life
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 Oct 29th: SSE Airtricity Dublin City Marathon Good luck to all those taking part in the SSE Airtricity Dublin Marathon on Sunday, October 29th in particular the 20 participants who will be donning purple and 'Running for CF'. For the second year in a row the Marathon is a sell out event having reached maximum capacity. Registraion for the 2018 Marathon opens in November so if you missed out on a place this year, don't despair - 2018 could be your year. CFI would ask members to come out on the day to cheer on the participants and Team CF as they complete their marathon fundraiser!
Nov 5th: TCS New York City Marathon CFI would like to wish all our participants the best of luck in this year's TCS New York City Marathon. There are a total of 15 runners taking part on behalf of Cystic Fibrosis Ireland which is one of the biggest groups ever running for CFI. The marathon takes place on Sunday 5th November from Staten Island and runs through all 5 city boroughs and promises to be an amazing experience for all involved. Thanks to all participants for your fundraising efforts so far, we hope you all have a great trip.
If you are considering taking part in next year's NYC Marathon then we would encourage you to let us know here in the CFI office ASAP and we can send you full details of the tour package when it becomes available next January. Please contact our office on 01 496 2433 or email pminchin@ cfireland.ie.
December : Christmas Cards It's (nearly) that time of year again. In the run up to the festive season, Cystic Fibrosis Ireland have a full range of Christmas Cards on sale. You can select from 14 different packs of Christmas Cards, all new designs from last year, with each pack containing 8 cards. This includes 2 Variety Packs includes 4 designs x 2 cards and 12 Single Packs - 1 design x 8 cards. You can purchase the cards through our website using the online order link, contact our office on 01 496 2433 or email pminchin@cfireland.ie for an Spectrum |Autumn 2017
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order form. All Cystic Fibrosis Ireland branches have been issued with a Christmas Card order form in September and we would ask that you please return this form to the CFI office no later than 3rd November with your branch order for Christmas Cards.
Christmas Hampers Cystic Fibrosis Ireland will be working with Ad Sales, who manage our Collection Boxes, again for Christmas 2017 to place Hampers nationwide. Please keep an eye out for them and buy a line if you can, you could win a lovely hamper.
Apr 13th : 65 Roses Day Cystic Fibrosis Ireland are pleased to announce that '65 Roses Day 2018' will take place on Friday 13th April 2018. Thanks again to all our branches and supporters who supported 65 Roses Day this year and made it a fantastic success. We look forward to your support again in 2018 and we hope to make 65 Roses Day 2018 even bigger and better next year. We will be writing to all CFI branches in November with more details and encourage all our members and supporters to keep an eye out in the next edition of Spectrum and our Website / FB Page for further updates. Although it's a while away yet, it is never too early to start planning for 65 Roses Day. We are looking for people out across the country to sell our Purple Roses on April 13th. We will also be looking for volunteers to take on a 65 Roses Challenge. This is where you organise a '65' themed fundraising event which can be anything from a 65 Roses Tea Party to doing 65 exercises in 65 minutes with your gym buddies. So why not get your thinking caps on and be as creative as you wish. CFI can support your event with any fundraising materials you require.
We are particularly looking for Schools and Companies to get involved on 65 Roses Day by helping to sell our purple roses and organising fundraising events as part of the 65 Roses Challenge.
If you would like to volunteer to sell purple roses or would like to discuss any fundraising ideas with our fundraising team then please contact us on 01 496 2433 or email pminchin@cfireland.ie. We are particularly looking for Schools and Companies to get involved on 65 Roses Day by helping to sell our purple roses and organising fundraising events as part of the 65 Roses Challenge. If you would like to volunteer to sell purple roses or would like to discuss any fundraising ideas with our fundraising team then please contact us on 01 496 2433 or email pminchin@cfireland.ie.
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April 22nd 2018: Virgin Money London Marathon 2018 CFI are pleased to announce details of the 2018 Virgin Money London Marathon package where we can guarantee you an entry to this highly sought after event. The marathon takes place on 22nd April 2018 and will start from Blackheath, near Greenwich and runs through many of the famous London disricts and past many iconic landmarks, including the Tower of London, the Houses of Parliament, Big Ben and Buckingham Palace. The standard tour (minimum package) includes: • Choice of flights from selected airport, including all taxes, fees and charges. •
2 nights twin or double sharing with full buffet breakfast
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GUARANTEED Race Entry to this sold out event
•
Private coach transfer to race start from the hotel (runners only)
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Services of Sports Travel Guides
To find out more or to register to book your place please call our office on 01 496 2433 or email fundraising@cfireland.ie
May 10th to 13th : Malin2Mizen Cycle4CF Malin2Mizen Cycle4CF takes place over 4 days from May 10th to 13th in 2018 to raise funds for Cystic Fibrosis Ireland. The 2018 cycle will be held in memory of Lisa Dolan, who sadly passed away earlier this year. Lisa who was a double lung transplant recipient from Athlone and it is a fitting tribute to Lisa that next year's cycle will be in her memory, as only last year she helped to launch our 2017 event and actively encouraged cyclists to take part. We have just launched the 2018 cycle in Athlone on the September 30th, with great support from the South Roscommon Cycling Club. The cycle will begin at Malin Head in Co. Donegal and make it's way down to the finish point in Mizen Head in Co. Cork. The following is an outline of the route. Day 1: Malin Head - Bundoran Day 2: Bundoran - Oranmore Day 3: Oranmore - Mallow Day 4: Mallow - Mizen Head Registration for the 2018 cycle is now open. All participants are asked to raise a target of €2,000 to take part in the cycle. This will also cover your food and accommodation for the 4 days of the cycle. All funds raised will go towards Cystic Fibrosis Ireland to help us continue to support people living with Cystic Fibrosis. Bernie Priestley who is a member of the organising committee will be contacting all CFI Branches with details of the cycle and to ask branches to Spectrum |Autumn 2017
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June 3rd : 1 in 1000 The 2018 VHI Women's Mini Marathon is undergoing a makeover as it makes the move from Bank Holiday Monday to Sunday! Sunday, June 3rd - Save the Date! A new date, but the same idea. 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. One in 1,000 is a National Fundraising Event for Cystic Fibrosis Ireland. However, it is also so much more; it is a community event that brings together supporters of PWCF from across the country. As past participants will tell you, the atmosphere on the day is fantastic and with a great team surrounding you, you don't feel the time or the 10 kilometres go by. We will be contacting branches in the November with details of the event and how you can get involved with further information available in the next issue of Spectrum. June 3rd 2018 - Make it a date to remember!
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
Skydives A skydive has to be one of the most exciting things you will ever do in your life. Now is the chance to tick this off your bucket list, while raising much needed funds for CFI. Jump from 10,000 feet, free fall for 30 seconds before the parachute opens and take in the views like you've never seen them before. To get started, visit our website, www.cfireland.ie which contains all the details you need to make this dream become a reality. For more details, contact Peter on email at pminchin@cfireland.ie Spectrum Autumn 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:
Malin2Mizen Cycle4CF 2017 CFI would like to say a massive thank you to everyone involved in making Malin2Mizen Cycle4CF 2017 the biggest fundraising event ever organised by CFI with a total of â‚Ź161,541.30 raised to date. It was a great effort by everyone involved, all 42 cyclists, the organising committee and all the volunteers who came along for the 4 days to support the cyclists. We would also like to thank all our sponsors who came on board to support the event and all the CFI branches for their support. This year's event was also special as we had two PWCF taking part in the event. Well done to both Caroline Heffernan and Brian McCarroll on such a wonderful achievement. Everyone thoroughly enjoyed themselves over the 4 days and it was a proud moment for all cyclists crossing the finishing line in Mizen Head. We recently held a re-union of the 2017 cyclists and a launch event for Malin2Mizen Cycle4CF 2018 in Athlone, where medals were presented to all the 2017 cyclists (courtesy of the Priestley family) and a video of the 2017 cycle was shown (courtesy of Aidan Priestley). It was a great opportunity for everyone to catch up and share their memories of what was an incredible journey in 2017 and to start the wheels turning towards next year's event. Registration is now open for Malin2Mizen Cycle4CF 2018 and details can be found on our website www.cfireland.ie or by contacting our office on 01 496 2433 or email Peter at pminchin@cfireland.ie.
One in 1000 - VHI Women's Mini Marathon One person can make a difference and that was certainly the case on Bank Holiday Monday, June 5th when 700 women and a few femininely dressed men took to the streets to take part in the VHI Women's Mini Marathon in aid of Cystic Fibrosis Ireland.
The atmosphere and energy on the day was electric! Even when the rain made an unwelcome appearance, it could not wash away the smiles on our participant's faces.
To date, the 2017 One in 1,000 Campaign has raised over â‚Ź70,000. A huge thank you to everyone who took part in the Mini Marathon and helped raise Spectrum |Autumn 2017
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awareness and funds for CFI. Any participant who raised €100 or more and returned their sponsorship money by August 31st was automatically entered into the Lucky One in 1,000 Raffle. The winners were as follows; 1st Prize - €200 Sunway Holiday Voucher; Monica Middleton C/O Midlands Team 2nd Prize - One night Stay Bed & Breakfast in the Harcourt Hotel; Emma Tyrell 3rd Prize - Lindt Chocolate Hamper; Jennifer Doyle from Wicklow 4th Prize - €50 Dunnes Stores Voucher; Mary Mc Bride from Monaghan 5th Prize - €50 Penneys Voucher; Linda Salmon from Mayo 6th Prize - €50 Penneys Voucher; Mary Mc Garry from Leitrim 7th Prize - Dream Pamper Hamper; Anne Mc Sherry from Dublin A huge congratulations to the winners, although all our participants are winners in our eyes! Once again thank you to everyone who took part on the day. We hope to see you all again for the 2018 Mini Marathon!
Riverdance Riverdance came home to the Gaiety Theatre for the Summer. Although the show ran for 12 weeks, the memories created in that time will last much longer for the CF Community. As the Chartiy Partner for Riverdance 2017, CFI beneftited from numerous fundraising and awareness camapigns. The show started on June 22nd, with a premiere opening night which saw celebrities, CF Ambassadors and members of the public walk the purple carpet, in support of CFI. Guests on the opening night were in for a special treat as PWCF - Katie Murphy took to the stage with the Riverdance troupe. On June 29th, a 12 hour Riverdanceathon took place outside the Gaiety Theatre. The Riverdance troupe started proceedings at 10am. Throughout the day, 22 dance schools featuring over 480 dancers took to the stage entertaining the crowds and tourists. Unfortunately the weather on the day was not ideal, but while the sun did not shine, the talent certainly did. A particular highlight of the day was when PWCF - Jessica Cassidy, aged 7, took to the stage for a solo performance. Performers on the day were then guests of honour at the Riverdance show that night, which again saw Katie join the Riverdance troupe. CFI would like to congratulate all the performers who took part on the day and give a special mention of thanks to the volutneers who braved the wind and rain to ensure the day was a success, we could not have done it without you. In addition to these fundraising events, Riverdance were instrumental in raising awareness of CF with displays in the Gaiety for the duration of the show. Cystic Fibrosis Ireland, on behalf of the CF Community in Ireland would like to thank Riverdance and in particular Sean O'Brien, for selecting CFI as their charity partner and for their dedicated hard work in helping to raise awareness of Cystic Fibrosis. To date, the charity partnership Spectrum Autumn 2017
has raised over â‚Ź26,000. However, the true value of this partnership is immeasureable. In particular for PWCFs Katie Murphy and Jessica Cassidy, this was a fairytale moment where dreams really did come true.
Spar Fit Live CFI would like to say well done and thank you to all those who took part in the SPAR 5k/10k FitLive Run on 15th July in The Phoenix Park. This was a fantastic event, with a huge number of people taking part, with Cystic Fibrosis Ireland highlighted as the chosen charity to benefit from funds raised from the event by our new Charity Partner, Spar.
CFI were well represented on the day with staff members Rory Tallon, Peter Minchin and Agata Adamaszek taking part and it was great to see the Spar ambassadors, Al Porter, Karl Henry and Derval O' Rourke supporting the event and encouraging all the runners on the day.
Paddy Kierans International Walk It was an early start for the 30 walkers taking part in this year's Paddy Kierans International Walk in aid of Cystic Fibrosis Ireland. Meeting at 4.30am in Dublin Airport there was an air of excitement as the group were eager to leave behind the grey skies of Ireland for the sunny charms of Croatia. The seven day trip saw the group walk nearly 10km a day visiting scenic sites such as Kravica Waterfall, Medjugorje, Dubrovnic and the Wine Region of Peljesac. A full review of the 2017 Paddy Kierans International Walk will feature in the next edition of Spectrum, but to view photos and updated from the Walk visit our Facebook page. Now in its 23rd year, the Paddy Kierans International Walk attracts upwards of 30 participants annually and raises over â‚Ź80,000 annually to help provide support and services for PWCF. The walk has become great community group with lifelong friendships made in locations such as Portugal, USA, Turkey and India. If you are interested in taking part in the 2018 Paddy Kierans International Walk, contact CFI on 01 496 2433 or visit www.cfireland.ie for more information. The journey of a lifetime starts with a single step, make that first step today and enquire about taking part in the 2018 Paddy Kierans International Walk
Head2Head Walk CFI would like to say a huge thank you to all those who took part in our Head2Head Walk on Sunday 24th September. It was the biggest Head2Head Walk to date with over 500 walkers taking part.
The walk began at 9.00am in Howth where the walkers made their way to Sandymount for a well deserved break before continuing the walk, finishing Spectrum |Autumn 2017
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in The Royal Hotel in Bray. Well done to James Downes and Mary McCarroll and their team of volunteers who put a huge amount of work into organising this event and ensuring it ran smoothly on the day. We would also like to thank our walk sponsor SPAR for all their support in helping us make this the biggest and best Head2Head walk to date, Thanks also to Fyffes for providing bananas for all the walkers, our charity partners TopOil and QuintilesIMS for entering teams in the walk, St. John Ambulance and An Garda Siochana for their support on the day and everyone who helped out in any way to make this walk such a huge success. Thanks in particular to everyone who participated in the walk and helped raise funds to support people with Cystic Fibrosis. We would like to remind anyone who has sponsorship money to lodge from the event that they can do so using the bank account details below. Please remember to include your name and 'H2H' as a reference so we can receipt it accordingly. CFI Fundraising Account IBAN: IE59 AIBK 931071 08578593 BIC: AIBKIE2D We look forward to seeing you all again next year.
Paris2Nice Cycle Cystic Fibrosis Ireland would like to say well done to our team of cyclists who took on the challenge of cycling from Paris2Nice from 16th to 21st September. The team was made up of Enda Greehy, Teddy Otto and Michael Martin. Unfortunately Brian Geoghegan who had fundraised for the event was unable to travel, but will take part in the 2018 cycle. The cycle started out from Paris and made it's way along a lovely scenic route all the way down to the finish point on the Promenade Des Anglais in Nice where the cyclists were greeted by a large crowd followed by a celebration dinner that night. The total amount raised has yet to be finalised but so far it has been a fantastic fundraising effort by all the team with over â‚Ź16,000 raised to date. Well done Enda, Brian, Teddy and Michael! We will confirm details of Paris2Nice 2018 in our next issue of Spectrum and on our website page as soon as they are announced.
Spar COTY Cystic Fibrosis Ireland are delighted to have been selected as the Official Charity Partner of Spar and would like to thank Gerard Farrelly, Aisling & Barry Jones and everybody else who helped us secure the nomination plus Spar Store votes to secure this partnership. Spar & Cystic Fibrosis Ireland Launch Of Charity Partnership Philip Watt, CEO Cystic Fibrosis Ireland; Jillian McNulty, CF Ambassador; Willie O'Brien, Managing Director, BWG Foods
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We are looking forward to a close working relationship with Spar over the next two years. The partnership includes raising funds 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.
BodyWorx Gym CFI would like to say a massive thanks to everyone at BodyWorx Gym in Carrick on Suir who recently held a charity 'Lip Sync Battle' fundraising night and raised a fantastic total of €5,210. Special thanks to Dermot Keyes and all his friends who helped to organise the event and to those who bought tickets and attended on the night.
Tony Donoghue Memorial Moone 10k Well Done to all those who took part in the Tony Donoghue Memorial Moone 10k Run/Walk on Saturday 9th September. There was a fantastic turnout for what is always a very popular and well-organised event. Proceeds from the event will be split between Cystic Fibrosis Ireland and Moone National School. CFI are very grateful to the organisers of this event for choosing us as their charity partner again this year.
Kilcormac Vocational School While thousands of students enjoyed the Summer Holidays and subsequent break from school, the 1997 class of Kilcormac Vocational School Class took the opportunity to take a trip down memory lane and held a school reunion. Proceeds from the Big Reunion were donated to Cystic Fibrosis Ireland in memory of their former classmate Colm Daly. Jackie McIntyre presented a cheque to Cystic Fibrosis Ireland on behalf of her classmates. A great night was had by all and the reunion raised over €312.25.
Harrington Golf Academy CFI would like to say a big thank you to Rebecca Codd and Tadhg Harrington from Harrington Golf Academy who recently held a charity golf scramble in aid of Cystic Fibrosis Ireland. The event was held in Killerig Golf Club in Carlow and raised €2,000. The day also included a golf clinic and a raffle with multiple prizes. Well done to all involved. Pictured are Tadhg Harrington and Rebecca Codd presenting the cheque to Peter Minchin from CFI.
Skydive4CF Congratulations to Darren Dunne, Tony Whelan, Keith Nichool, David Dunne, Liam Dunne, Paul Moran and Johnathan Long who completed a Skydive4CF and raised over €2,200 for Cystic Fibrosis Ireland. The skydive was not only a fantastic fundraiser, but a fulfillment of a promise - Darren promised his cousin, Jennifer that he would take part in a skydive. The promise which was sealed with a handshake and framed for evidence. On July 23rd, the group completed the skydive in memory of Jennifer, supporting Cystic Fibrosis Ireland through their participation. A huge thank you to all those who took part.
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Swords Golf Club CFI would like to extend a big thank you to Swords Golf Club, Roganstown who recently held a Golf Classic in aid of Cystic Fibrosis Ireland and raised €3,340. Special thanks to Frank Murray for all his work in organising this event and making it so successful. Pictured at the cheque presentation are Orla McGuinnes, Lady Captain, Rory Tallon, CF Advocate and Derek Carmody, Captain.
Byrne Casey & Associates CFI would like to say a big thank you to everyone in Byrne Casey & Associates in Tullamore, Co. Offaly who recently organised a charity race night. The night was a great success with the proceeds split between Cystic Fibrosis Ireland and Dochas Offaly. CFI were delighted to receive a cheque for €6,376.60 which was presented to Sadie Kerrigan recently on behalf of CFI. Well done to all involved and to those who supported the night.
Colourtrend Paints CFI would like to say a big thank you to everyone in the Colourtrend Paints store in Celbridge who recently held a coffee morning in aid of CFI and raised a total of €700. The morning was very well supported by the local community and local companies who donated spot prizes and treats for the event. Well done to all involved. If your company would like to organise a fundraising event then please don't hesitate to contact our fundraising team on 01 496 2433 or email fundraising@cfireland.ie.
BBAM Hell & Back CFI would like to say a big well done and thank you to the team from BBAM Aviation in Dublin who recently took on the 'Hell & Back' Challenge and passed with 'flying' colours. They raised over €2,000 in the process. The team was made up of Conor, James, Eoghan, Robbie, Laura and Emer. Well done guys and thanks for your support!
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Section 3: Stories Malin2Mizen Cycle4CF Caroline Heffernan, CF Advocate CFI My journey began in 2015 when 6 cyclists passed through Tuam cycling M2M in memory of Triona Priestly. As they passed through Tuam myself and friends met them with a few supplies (water, fig rolls etc...). The seed was planted and I wondered would I be able for this challenge or was I completely off my rocker? As it happened the following 18months was fought hard as CF took hold in a way I had only ever experience once before after my second pregnancy (2002) when lung functions dropped into their 40's. At this time I said I will do whatever it takes to get back into good health, I was optimistic about gaining back my lung function as pregnancy is hard on the body for most people. Thankfully with the support of family, friends and CF team I concentrated on getting my lung functions back into the high 70's. 2015/16 was different though, apart from getting older there was no evident reason why I was struggling with lower lung function. Every test was done, every medication combination was tried. I was 99% compliant to treatments and physiotherapy. I exercised even though I was extremely breathless and a lot slower and still no improvement. At this stage I was a sick person with CF worrying about what was around the corner. I sat with my doctor in Castlebar and asked what was next for me knowing I didn't want to hear the answer. Then a small light showed at the end of what was a very dark tunnel when he said he would talk to Dr Ed Mc Kone in St. Vincent's about getting me on a trial for Kalydeco (extended use for r117h). Dr O'Neil did say it was a long shot but we had nothing to lose. To cut a long story short, all the dots fell into place with just a couple of hic-ups. I was given access to Kalydeco in November 2016 and within an hour and a half of taking the tablet, I could walk upstairs without being breathless and coughing for a few minutes (this hadn't Spectrum |Autumn 2017
happened in over a year). I really couldn't believe my luck. However, the trial was only for a year and I feared as we protested for Orkambi, extended use of Kalydeco and future drugs that my improved health would come to an abrupt halt after a year. My mind was made up. I'd attempt the cycle with my new-found energy. I couldn't let a good year go to waste without doing something to prove to myself that I could. However, I'm not completely off my rocker. I did ask friends to do it with me on a tandem so I had both physical and emotional support throughout the training and on the journey that is M2M. The week before the cycle the butterflies started dancing a jig in my stomach and I wondered about my sanity but my saying in life is "no point being daft without showing it". With last minute changes, answering text messages and emails we were on the road before I realised, and surprisingly I slept like a log on Wednesday night. On Thursday morning standing in a group at Malin Head with strangers about to take on this mammoth journey is an amazing feeling. Those strangers became friends very quickly as we cycled down the first hill and out onto the open road. Our first day brought us to Bundoran, we actually managed to get slightly lost going to the hotel (adding a km as if we needed too) but the sun shone all day and we had great fun even getting a good farmer's tan with a few going bright red. We had a dip in the sea to cool down the legs before sitting down to enjoy a lovely dinner. Brian McCunniffe in the Great Northern was the perfect host coming around to us all asking if we had everything we needed. Friday morning saw us Tuam Shams heading towards home. Leaving Donegal behind we were soon cruising into Mayo for our lunch stop at Charlestown. At this stage our club mates from TriLakes Triathlon Club joined us, having cycled from Tuam that morning. All along the route more friends from TriLakes and Tuam cycling club joined us on our journey. In Milltown, just 23
13km from Tuam the local gardai arrived to give us a garda escort. From the outskirts of Tuam, through The Square and out to our food stop at Maxol, people were shouting, cheering and clapping us on. The town was turned purple with CF balloons. To say I'm a proud Tuam woman is an understatement. The weather turned on us a little on our final 30km to Oranmore but spirits were high after the reception we received in Tuam. We were greeted in true Galway fashion with bubbly at the doors of the Maldron Hotel which was our resting place for the night. Saturday morning and we are off on the road again heading towards Limerick and then onto Charleville. The weather wasn't as good to us, we had a typical Irish day; four seasons in one. Sunshine, wind rain and for a while I thought we had hailstones. With the banter and craic we were having it was head down and pedal like mad as we circled into Limerick where I was never so delighted to see Erin, with a warm (purple) jumper for me to throw on while we fuelled up for
found with each km closer to the finish I was getting more and more emotional to the stage of tears for the last 30km. I had physically trained as hard as my body would allow the months coming up to the event but I never in a million years thought I'd be such an emotional wreck. The last 30km my mind drifted to memories of my CF friends that are no longer with us. I wondered why I was getting the chance at life when so many other wonderful people didn't. At times it makes you feel guilty, but the realisation that if any one of my CF friends who are no longer with us heard my thoughts I'd be in trouble. On more than one occasion I've been told "live for both of us Caroline, never give up!". I never met Triona but I know we would have had the same bond as all my other friends with CF. There is a quiet 'knowing' between us, and a look is all it takes. The resilience of a PWCF is second to none. The support we as PWCF receive from our family and friends is amazing. We are the luckiest people and unluckiest genetically but CF does make us who we are. For me, I push myself to the limits. I can't sit and watch life pass me by. I'm over the moon to add Malin 2 Mizen Cycle for CF to my list of achievements. The group gave Brian and I the honour of leading the group over the finish line. Never in my life have I felt such emotion and pride during a sporting event. What's next I wonder? Any ideas? I'm taking suggestions !
the last leg of the day. We arrived in Charleville Park Hotel like drowned rats but the high spirits continued. Dinner on Saturday night was special as it was to be our last official night together before the long cycle through Cork. Bernie read a lovely piece written by Triona which will forever remain in my mind as I think the thoughts are similar for most if not all PWCF. It made each and every person sitting around take stock of what life is really about. Sunday morning sees us all excited to be on our final leg, we have aches and pains in areas that cannot go into print but there was also the knowledge that we as a group would be parting soon. Cork is a hard cycle lots of hills to go up and thankfully come down but I Spectrum Autumn 2017
My Legacy Week 2017 30th October to 4th November My Legacy Week is as good a time as any to make your will and consider leaving a legacy gift to a cause you care about such as Cystic Fibrosis Ireland. Having a will is very important for so many good reasons and particularly during My Legacy Week, when you are encouraged to take that first step in writing your will by making an appointment with a solicitor. Cystic Fibrosis Ireland are a member of My Legacy.ie who have the support of hundreds of solicitor firms all around the country who can offer expert guidance and advice about making a will at any time of the year. It is usually a much more straightforward and cost effective process than you might think and your solicitor will discuss any fee for drawing up this important personal document when you make your appointment. Once family and friends have been looked after and all other important personal decisions have been made, deciding to leave a legacy gift to a charity is a wonderful way to support a favourite cause such as Cystic Fibrosis Ireland in the future. Large or small, every legacy is a generous gift of hope and trust for the future. 1. Make An Appointment Avail of expert advice and support. Take the first step to discuss your wishes and decisions for the future. 2. Look After Loved Ones First Why a will is important. A will provides for loved ones, assigns guardians, protects your assets and helps reduce inheritance tax. 3. Consider A Legacy To Charity Your gift may be big or small and is tax free. If you have a cause close to your heart such as Cystic Fibrosis Ireland, please consider leaving a gift to that charity in your will. For more information on leaving a gift in your will, please see the enclosed leaflet "Your Legacy Could By Life Changing", visit our website at www. cfireland.ie/get-involved1/legacy or the My Legacy website www.mylegacy.ie. Alternatively you can contact Cystic Fibrosis Ireland on 01 4962433 for more information.
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CFI Christmas Cards 2017
Branches: Please order via order forms sent to each branch Public : Please order via our website www.cfireland.ie Single design packs and multi-packs available - 8 cards each Cystic Fibrosis Ireland t: +353 1 4962433 24 Lower Rathmines Road f: +353 1 4962201 Dublin 6 e: info@cfireland.ie Ireland w: www.cfireland.ie DO6 A9p3 Company Reg: 449954 Charity: CHY 6350
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