Published by Cystic Fibrosis Ireland
IN THIS ISSUE:
• CFI Annual Conference 2014 & 65 Roses National Awareness Week • TLC4CF Buys Life Changing CF Equipment • CFI Strives for Highest Standards in Fundraising and Governance • 'Concentrate on the Good Days', Spotlight By Aileen Henderson • Be One in 1000 for CF Ireland • Becky's Ball Cheque Presentation Issue 38: Mar/Apr 2014 Mar/Apr 2014
Dear All, The theme of this year's 65 Roses National Awareness Week and conference is 'Better Together'. It is only by working together that we can improve CF services in Ireland. In recent weeks CFI has met with the senior management teams in St Vincent's University Hospital and University Hospital Limerick (in partnership with TLC4CF). We have further forthcoming meetings with Waterford Regional Hospital and the Mater University Hospital on a wide range of CF-related issues. On 13th March a CFI delegation met with Minister James Reilly TD to highlight continuing challenges in CF facilities in Ireland, including in particular in Beaumont Hospital where 13 inpatient rooms are badly needed for adult patients with CF. We hope that you will be able to join us for our annual conference in Salthill, Galway and this issue of Spectrum provides an up-to-date agenda. The conference is free for those who just want to attend the lectures and discussion, and if you can't make it why not join us through our webcast Ă‘ details available on our website. The conference fee is subsidised through sponsorship and we wish to acknowledge the support of industry, in particular, Novartis, Cheisi and Vertex in this context. During the conference we will be publishing an impact report that seeks to highlight how we have made a difference in the last two years, by working together. Kind regards, Philip Watt (CEO) Alica May (Editor) Front Cover: Bevin Murphy (PWCF, age 19) who you may spot on billboards around the country shortly as part of our awareness campaign. DISCLAIMER: The views of contributors, when expressed in this publication, do not necessarily reflect the position or policy of Cystic Fibrosis Ireland.
Spectrum / Issue 38
CFI Annual Conference 2014 Ñ Conference Agenda
Concentrate on the Good Days, By Aileen Henderson, PWCF Age 17 from Co Galway
65 Roses National Awareness Week 2014
Galway Building Update TLC4CF Buys Life Changing CF Equipment for the Mid-West CUH Funding Resolved Meeting with St Vincent's University Hospital Cystic Fibrosis Ireland Strives for Highest Standards in Fundraising and Governance New Children's Hospital Ñ An Update
EVENT FOCUS: Page 15Ñ16
65 Roses National Awareness Week 2014, 28th March Ñ 4th April --
Rare Diseases in Ireland
CFI Meets with Minister on Beaumont Hospital
Page 17Ñ20 1 in 1000
INFORMATION/ SUPPORTS: Page 11Ñ12
Challenges and Events
Diet Supplement Discontinued For New Claimants
Tuscany Walk 2013 Ñ Walk Committee Report
New Resources for Children with CF
Community Events Thank You --
FINAL NOTICE Ă‘ CFI Annual Conference 2014 Final Chance to Register! Final preparations are being made to the CFI 2014 Conference Program taking place in the Galway Bay Hotel, Salthill, Galway on the 28th-30th March 2014. As with previous years, there are numerous educational and informative seminars that will be beneficial to our members as well as a sociable weekend break to catch up with friends old and new. Closing dates for registration is Monday the 24th of March. For program and registration information, please visit www.cfireland.ie, contact the office directly at 01 4962433 or email firstname.lastname@example.org. Accommodation We already have over 120 people registered for the conference and hotel accommodation for the Friday evening is now fully book. There are a limited number of rooms available in the hotel for Saturday night only so hurry and book soon to avoid disappointment! Rooms are allocated on a first come, first served basis. The conference program is available for download from the CFI website: www.cfireland.ie or for further information, please contact Joanne/ Helen at 01 4962433. The CFI Galway Branch and staff of CF house look forward to welcoming you to Galway.
Spectrum / Issue 38
Friday 28th March Evening Reception, Opening Address & Presentations 5.00pm: Conference Registration 7.00pm: Opening Reception Conference Welcome John Coleman, Chairperson, CFI, Mary Lane Heneghan, Galway Branch Special Guests An Taoiseach, Enda Kenny TD TBC Joe Brolly, CF Ireland Ambassador Presentation of CFI Special Recognition Awards for 2014 8.00pm: BBQ and drinks reception
Saturday 29th March Conference | Morning Session 9.00am: Conference Registration 9.15am: Tea/Coffee Chairperson, Dr Mary Herzig, UHG 9.30am: Welcome Note from Bill Maher ,CEO, Galway & Roscommon Hospital Group 9.45am: CFI Progress Report, Philip Watt 10.00am: Progress on Lung Transplantation Prof Jim Egan, MMUH 10.20am: The PWCF Journey through Lung Transplantation, Pat Dempsey (PWCF) and Annette Hassett 10:40am: Update on New Therapies Dr Barry Linnane, Paediatric Respiratory Consultant, UHL The Patient Experience, Donnacha Gutteridge (PWCF) 11.15am: Questions & Answers Session 11.45am: Parallel Seminars Deal with the Difficult Questions (Dr Alistair Duff) Airway Clearance Techniques and Exercise Tips (Irene Maguire) Infection Control in the Community (Prof Philip Murphy and the Community cross-infection group) 1.00pm: Lunch / Poster Session Mar/Apr 2014
Saturday 29th March contd. Conference | Afternoon Session Chairperson, Dr Michael O'Mahony, UHG 2.00pm: What a Difference a Year Makes Ă‘ Life Post-Transplant & Parenthood Paul (PWCF) & Ciara Wynne 2.30pm: Balancing Life and CF James Devaney (PWCF) 3.00pm: Clinical Standards in CF, a UK Perspective Jo Osmond, Patient Advocate and Project Manager, Pharmaxis Pharmaceuticals 3:20pm: The Importance of Exercise in CF Ben Mudge (PWCF), Fitness Expert and Personal Trainer 3.45pm: Parallel Seminars Compliance & Adherence in CF (Dr Alistair Duff, St James University Hospital, Leeds) New Parent Discussion Group (Dr Mary Herzig, UHG & Caroline Heffernan, CFI) Transition from Paediatric to Adult Care (Prof. Imelda Coyne, TCD) Guide to Running your Branch (Maria Caldwell, Jolyn Mulvey, CFI) 5.00pm: Close 7.30pm: Gala Dinner & Dance
Sunday 30th March AGM & Conference Closing 11.15am: Tea and Coffee 11.30am: Annual General Meeting (everyone invited) 12.30pm: Light Lunch
65 Roses National Awareness Week 2014 A reminder of what will be happening during 65 Roses National Awareness Week: Date Friday 28th March Friday 28th March Ñ Sunday 30th March Friday 28th March Ñ Friday 4th April Friday 4th April
What's On Launch of 65 Roses National Awareness Week at our Annual Conference in Galway CFI Annual Conference Selling of 65 Roses Emblems throughout the Country National Awareness Week Events organised locally 65 Roses National Flag Day
See 'Event Focus section for more information on National Awareness Week 2014
IT’S NOT EASY BEING CHEEKY No one works harder to stay well than someone with Cystic Fibrosis. With your help, they can. cfireland.ie
100% of text cost goes to charity across most network providers. Some providers apply VAT which means a minimum of €1.63 will go to CF Ireland. Service provided by LikeCharity 01 4433778.
Text HelpCF to 50300 to donate €2. Ross Farrell, PWCF age 6, who appears on our National Awareness Billboards this year Ñ keep an eye out for him! O32742 CY 48 sheets V15 BG.indd 1
Galway Building Update Building work for the new paediatric outpatient unit in University Hospital Galway (UHG) is well underway. The unit, which will cost Û590,000, is being funded by the CF Galway hospital fund, and the UHG/HSE. Mary Lane Heneghan, Chair of the Galway Branch, CFI, commented "I would like to acknowledge the hard work and commitment of all the people who helped us raise the funds for our contribution to the project." "In particular, I would like to thank Marian Keane, who is donating the proceeds from the sale of a house that was bequeathed to her family. This is an incredible donation and one that will have a meaningful and long term impact on the treatment of children with Cystic Fibrosis." The new unit will include four examination rooms, a treatment room for procedures and a gym for assessment and physiotherapy. It will be located behind the existing Paediatric Outpatient Department on the grounds of University Hospital Galway. 4
Spectrum / Issue 38
TLC4CF Buys Life Changing CF Equipment for the Mid-West Monday 10th February marks the launch of two new pieces of state of the art equipment in the University Hospital Limerick. This life changing equipment was purchased after a mammoth fundraising drive by TLC4CF (Tipperary, Limerick & Clare regional Branches of Cystic Fibrosis Ireland), which raised over Û205,000 to provide the much needed equipment for the hospital. According to Owen Kirby, Chairperson of TLC4CF, "Local CF Branches, Children's Light of Hope and the Soroptimists Club were largely responsible for raising the necessary funds to purchase these new machines." A Bronchoscope suite costing Û160,000 was purchased and will be used to carry out internal examinations on the lungs and airways of children with Cystic Fibrosis. Paediatric CF Consultant Barry Linnane welcomed the launch of the new equipment and stated "The Bronchoscope suite allows us to visualise the internal structure of the lungs, and to obtain samples from the lower airways of children with CF. With this approach infection and inflammation can be detected even before the patient develops symptoms, facilitating early, targeted treatment." In addition, University Hospital Limerick is the first hospital in Ireland to acquire the new Exhalyzer D which cost Û44,000. This piece of high-tech equipment has just been installed in the Paediatric CF unit and provides a unique system of measuring and monitoring pulmonary function in children and adults. Dr Barry Linnane commented that "The Exhalyzer D represents the cutting edge of lung function technology and has the ability to detect some of the earliest changes in the lungs of people with CF. It will significantly enhance our ability to detect and monitor lung disease before it is apparent using conventional techniques. This will facilitate early treatment tailored to each individual patient with a view to maintaining, rather than recovering, good lung health. Thanks to TLC4CF, Limerick is the first Hospital in Ireland with this technology."
Dr Barry Linnane Paediatric CF Consultant University Hospital Limerick with Eabha O'Brien age 7yrs and her mother Theresa O'Brien. Photo Courtesy of Keith Wiseman Photography.
CUH Funding Resolved In a welcome piece of news, the stand-off between Cork University Hospital and local charity Build4Life appears to have been resolved following the drawing up of an agreement facilitated by Minister Kathleen Lynch TD. CFI had proposed the drawing up of such an agreement to resolve the issue and hopes that the inpatient unit will be completed as soon as possible.
Meeting with St Vincent's University Hospital As part of our regular quarterly meetings required by the joint agreement signed last year, Cystic Fibrosis Ireland (CFI) represented by Philip Watt CEO and Toms Thompson, Patient advocate and PWCF, met with the manager of SVUH; a senior representative from the HSE and the lead CF clinician and other members of the management team in SVUH on Monday 10th of March. The meeting allowed discussion of some of the issues highlighted in our recent survey on CF inpatients who were admitted at least once in 2013. The survey was undertaken to gauge the views of our members 12 months after the introduction of new agreed operational procedures. While the overall response to how the admission agreement is satisfactory, there are still aspects of the policy that need to be improved and the experience of some patients, in particular, but not exclusively, those with Cepacia has been less positive because they are more likely to be accommodated outside the Nutley Wing for cross-infection reasons. The survey covered almost one quarter of those admitted as an inpatient in SVUH in 2013 Ñ many of whom were admitted 3 or 4 times during the year. Following the meeting the hospital have agreed to work harder to ensure that the former private hospital will be used as little as possible for CF care while recognising that when there are very high CF patient numbers or if there are cross infection issues the Herbert Wing (former private hospital) may still have to be used in times of pressure. The hospital has also agreed to strive to ensure that exercise equipment (bikes) are made more readily available for those admitted as inpatients, where they do not already exist in the room. CFI understands that the number of inpatients with CF peaked in January and February 2014, but that numbers fell again in March, reflecting a seasonal trend already reported on. This confirms the sense of the Agreement signed last year of having a flexible approach to inpatient rooms, whereby 20 are ring-fenced, but this can be increased to 34 when needed. In January and February 2014 there were actually more than 34 CF inpatients accommodated in SVUH. Once again, if CFI had insisted in ring-fencing all 34 rooms for only CF use, many of the rooms in the Nutley wing would now be lying idle Ñ a position that would have likely attracted major public criticism, especially if it resulted in other high need patients being accommodated on trolleys or refused admission. As part of the SVUH agreement, CFI has a direct hotline to the hospital on admission issues, so please do not hesitate to call us if you are experiencing a significant problem.
Spectrum / Issue 38
Cystic Fibrosis Ireland Strives for Highest Standards in Fundraising and Governance In the wake of the controversies in CRC and Rehab it is important to reassure all our members and supporters that Cystic Fibrosis Ireland strives for the highest standards in fundraising and governance. We would urge our members to insist that whatever charities they support Ñ CFI or otherwise Ñ should be compliant with accepted good practice. 1. Cystic Fibrosis Ireland is fully signed up to the Statement of Guiding Principles for Fundraising www.ictr.ie The Statement exists to: • Improve fundraising practice • Promote high levels of accountability and transparency by organisations fundraising from the public • Provide clarity and assurances to donors and prospective donors about the organisations they support On our website we have a Donor Charter, Fundraising Complaints Procedure & Public Disclosure Statement. 2. Cystic Fibrosis Ireland's accounts are audited annually by independent qualified auditors (Farrell Grant Sparks) which are appointed at our AGM. Every member on our database is sent a copy of our audited accounts with a financial report. CFI publishes an impact report every two years to highlight the outcomes from our work, this builds on the annual report that was previously published. 3. Cystic Fibrosis Ireland has a Board that meets around 6 times a year which is comprised of 20 people representing all our Branches and the Medical and Scientific Council. Almost all the members of our Board are parents or people with CF. 4. Cystic Fibrosis Ireland is signed up to the Governance Code for Community, Voluntary and Charitable Organisations. 5. The CEOs salary is a matter of public record and is outlined in the Financial report of the Association. It is considerably less than many other CEOs in equivalent charities. 6. Cystic Fibrosis Ireland won the prestigious 'Outstanding Contribution to Healthcare' award for 2013. We can never be complacent about standards in fundraising or governance and we welcome comments or complaints to ensure that we maintain the high standards we have set ourselves.
New Children's Hospital Ñ An Update CFI attended a briefing in February for an update on the development of the New Children's Hospital. As you probably know by now, the NCH will be tri-located on one campus with St James's Hospital and a planned maternity hospital. Tri-location of paediatric, adult and maternity services has benefits for children and young people, for neonates and for mothers. It allows specialist expertise to be shared across all three hospitals, along with a campus-wide approach to sharing non-clinical services and infrastructure. The Children's Hospital Group Board will oversee the integration of the three children's hospitals in advance of the move to the new children's hospital. It is chaired by Dr Jim Browne and led by CEO Eilísh Hardiman. Particulars: • Building height will be up to 28 metres (approx. 8 floors). There have
• • • • • •
been positive meetings with Dublin City Council and the site is suitable for institutional and health use (Zoning Z15) The NCH site itself will take up 12 acres 469 beds (384 inpatient and 85 daycare), all ensuite single rooms with parent accommodation (fold out beds) Child-centred design with colourful play areas, gardens, courtyard, focus on art and music Resource centre for families who travel long distances There will be a hospital school on site Adequate underground parking facilities with 1,000 spaces
Project timeline Target Design Team *Planning Submission to An Bord Pleanla Planning Approval Start Construction Satellite Centres Commence transfer of services to NCH FINISH 2019
Timescale Spring 2014 Autumn 2014 Spring 2015 Spring 2015 Complete mid 2016 End 2018
*Planning permission with regards to the NCH only.
The Children's Hospital Group and Design Board are currently developing a design and engagement plan which will be implemented and ongoing once the hospital opens. Engagement will be with families, patients, advocacy groups and stakeholders. The next meeting CFI has been invited to attend as part of this process is scheduled for summer 2014. 8
Spectrum / Issue 38
Rare Diseases in Ireland People living with rare diseases have long been marginalised and sometimes forgotten in the health care system. This can be because of the small patient populations, a lack of knowledge/expertise/awareness of a particular rare disease. Cystic Fibrosis (CF) is considered to be a rare disease, although it is one of the most common rare diseases in Ireland. We have seen a great number of advances over the past 50 years, driven by the voice of patients, parents, CFI and national representatives. Advances in treatment and services have resulted in improvements in quality of life for PWCF Ñ although we still have a way to go. Many rare disease groups are starting out on the journey to ensure the best care is available for their disease group. The Department of Health have been very supportive of Rare Diseases which is evident as the Minister for Health established a National Steering Group that has been tasked with developing a five year national plan for Rare Diseases and which will deal with the diagnosis, prevention, management, treatment and research of rare diseases in Ireland. The key principals governing the plan will be: patient-centeredness, quality, care and equity of access to treatment. The plan is nearing completion and is due to be published in May 2014. Another very positive development in the area of Rare Diseases is the establishment of a National Clinical Programme for Rare Diseases (note: CF will have its own Clinical Programme being led by Prof Charles Gallagher). Prof Eileen Treacy has been appointed as the Clinical Lead for the HSE/ RCPI clinical programme. A programme manager has also been appointed Ñ which is a crucial advancement in commencing a clinical programme. There has clearly been a lot of work done by the Rare Diseases Taskforce (Chaired by Philip Watt, CFI) since its' formation in 2011. Rare Disease Day 2014 Rare Diseases Day took place on the 28th of February in a Joint North South Rare Disease Day Event; 'Join Together for Better Care'. In the run up to the main event which took place in the beautiful Riddell Hall in Belfast, the Rare Diseases Taskforce for Ireland held a Rare Diseases Day briefing at the Dublin Mansion House. The briefing event was organised to provide an update on the progress on the National Plan for Rare Diseases and the Clinical Care Programme. The event was very well attended and provided very informative presentations which were delivered by Dr John Devlin, Deputy Chief Medical Officer in the Department of Health, Prof Eileen Treacy, clinical lead for Rare Disease and Philip Watt, Chair of the Rare Disease Task Force. One of the clear objectives of the working Rare Disease plan and recommendation from the Taskforce was the need to establish a National Rare Disease Office and the need for patient registries. The Joint Committee on Health and Children also met with a number of groups dealing with rare diseases. The main event was organised with a view to looking at rare diseases on an all island basis Ñ with North and South working together and sharing experiences. Minister Alex White (Ireland) and Minister Edwin Poots (Northern Ireland) both spoke at the conference around respective national Mar/Apr 2014
plans. It was very promising to hear Minister White's commitment to the Irish Rare Disease plan and to support the establishment of a National Rare Disease Office. Patients, patient representatives, parents and clinicians spoke at the conference, which was attended by approx. 250 people. Although there are differences in the health care systems between each country, patients are bringing about the same message Ă‘ a need for research, expertise, support, information and clear care pathways. The publishing of a National Rare Disease Plan, establishment of a Rare Disease National Office and development of a National Clinical Care Programme for Rare Diseases in Ireland will go a long way to improving the care and support available for people living with rare diseases in Ireland.
CFI Meets with Minister on Beaumont Hospital Cystic Fibrosis Ireland representatives met with Minster James Reilly TD on Thursday 13th of March on a range of issues related to CF care. Top of the list is the need for 13 inpatient rooms in Beaumont Hospital. Professor Gerry McElvaney, the lead clinician in BUH also attended the meeting. CFI have urged the Department of Health and Beaumont Hospital to prioritise the building of a 13 room inpatient centre in Beaumont Hospital. At present there are only 4 inpatient rooms, which is entirely insufficient for the 160 adult CF patients currently attending the Hospital.
Minister for Health, Dr James Reilly TD, with Katie Murphy, PWCF, and Philip Watt, CEO CFI, at a recent meeting where facilities at Beaumont were raised.
Spectrum / Issue 38
Diet Supplement Discontinued For New Claimants The Department of Social Protection (DSP) has announced that it is to discontinue the diet supplement for new applicants from 1 February 2014. Under the Supplementary Welfare Allowance Scheme, weekly diet supplements may be paid to assist a PWCF for additional dietary needs such as high-protein high-calorie diet. An amount equivalent to one-third of the individual's social welfare payment is subtracted from this set cost to calculate the weekly figure. However, the supplement will now only be paid to those in receipt of it prior to 31 January 2014. The Department of Social Protection used a report it commissioned from the Irish Nutrition and Dietetic Institute (INDI) in 2013 as the basis to discontinue the supplement from the 1te of February 2014. The report, which examines the cost of healthy eating and specialised diets for a single individual in Ireland, states that all social welfare recipients, including those with special dietary needs, should be able to purchase an appropriate diet at a cost of no more than one-third of their weekly income if they have access to low-cost supermarkets or discount stores. However, many people with CF who are in receipt of the Diet Supplement receive disability payments and are on low-income. As stated in the INDI report, such households are twice as likely as the general population to experience food poverty; almost 50% of lone-parent households and 36% of unemployed people experience some sort of food deprivation. Living in a low-income household or socioeconomically deprived area may influence dietary behaviours, through limited access to supermarkets, decreased transport services, and higher access to convenience stores. On top of this, as the INDI study notes, foods used in larger quantities in the high-protein high-calorie diet for instance, such as full-fat milk, cream spreads and sugar, are significantly more expensive in a convenience store. More generally, the report also finds that the cost of the healthy eating diet is now 35% of the social welfare allowance if you only have access to a convenience store, the location now used by most lowincome families. The discontinuation of the Diet Supplement for new applicants marks the further erosion of the supports available to people with Cystic Fibrosis. This allowance is extremely important to many people with CF on low incomes Ñ not following specialised diets can exacerbate an individual's condition, leading to poorer quality of life and a need to access medical care more frequently. People want to be able to live a healthy life, but a cut like this could force people to make decisions they don't want to make regarding their health, and could also act as a barrier for people with disabilities returning to work as they will lose the allowance if they ever have to return to social welfare. CFI will be raising this issue with the Department of Social Protection and the Minister directly seeking a reversal of the cut to the diet supplement to new claimants. Irish Nutrition and Dietetic Institute, (2013), 'Examination of the cost of healthy eating and specialised diets for a single individual in Ireland: 2013 Update' 2 Healthy Food for All, (2009), 'The affordability of healthy eating for low -income households', Dublin, HFfA 3 Morland K, Diez Roux AV, Wing S., (2006), 'Supermarkets, other food stores, and obesity: the atherosclerosis risk in communities study', American Journal of Preventative Medicine 2006; 30: 333Ñ339 1
New Resources for Children with CF Ann-Marie Kavanagh has three children with Cystic Fibrosis (CF), who attend Temple Street Children's University Hospital, Dublin. When their children were younger, Ann-Marie and her husband discovered that there was little information available in a story format that explained CF treatment in an age-appropriate way. 'Catherine's Time to Shine' is an exciting and easy-to-read book that cleverly puts Catherine at the centre of the story and at the same time explains in a child-friendly manner why she needs to take her Creon and have regular physiotherapy. 'Matthew O'Brien: The Big Match' is Anne-Marie's first book. It covers the same treatment for CF but the central character is male. Anne-Marie intends to cover other CF treatments in subsequent books in the series.
Matthew O'Brien: The Big Match is now available!
These books are recommended for children under the age of ten: Dr Zai Edworthy, Senior Clinical Psychologist, Dublin The books are now available at the following links: Amazon (US) Matthew Link: http://amzn.com/B00I328PCW Catherine Link: http://amzn.com/B00I2Y6N6G Google Play Store Matthew Link: https://play.google.com/store/books/details/ Ann_marie_Kavanagh_Matthew_O_Brien_The_Big_ Match?id=3by4AgAAQBAJ Catherine Link: https://play.google.com/store/books/details/Ann_ marie_Kavanagh_Catherine_s_Time_to_Shine?id=0YnBAgAAQBAJ
The second of Anne-Marie's books is called 'Catherine's Time to Shine'.
Apple iBooks Store Matthew Link: https://itunes.apple.com/ie/book/matthew-obrienthe-big-match/id806813693?mt=11&ls=1 Apple iBooks Store Catherine Link: https://itunes.apple.com/ie/book/ catherines-time-to-shine%21/id806807821?mt=11&ls=1
Exercise Grant 2014 Ă‘ Round 1 Now Closed Round 1 of the Exercise Grant closed on Friday 7th March. The next opportunity members will have to apply again is in September. Keep an eye on our website nearer this time for more information. We hope all of you that received exercise grants in this round will really embrace the challenge of getting fitter over the coming months.
Spectrum / Issue 38
Concentrate on the Good Days By Aileen Henderson, PWCF Age 17 from Co Galway My name is Aileen Henderson. I'm 17 years old and I live in Galway with my two brothers and my Mum and Dad. I was born in Scotland and was diagnosed with CF when I moved to Galway at three years of age. Currently I am a 5th year student in Salerno Secondary School in Salthill. At the moment I am still in paediatric care in University Hospital Galway where I am very well looked after by Dr. Mary Herzig and the CF team. As I have CF related liver disease I was also under the care of Prof. Billy Bourke in Crumlin and have just transferred from there to the Liver unit in St. Vincents. On a daily basis I take nebulised antibiotics, pulmozyme, pancreatic enzymes, vitamin supplements and do physio with a pep mask. I'm sure other teenagers out there will agree that this can be a real inconvenience at times but I know it is important and that it will benefit me in the long run! That said, I have seen a huge improvement in these treatments from when I was younger. Taking my nebuliser a few years ago involved sitting in front of the TV for half an hour, (even though you could never hear the TV because of the noise coming from the machine!). Now it takes me 5 minutes through a silent 'eflow' nebuliser. I believe there is great hope for the future of CF especially with all the new treatments available and trials that are ongoing at the moment. I always found it hard to gain weight and still do when I'm sick and don't feel like eating. I found the high calorie supplements difficult to take but I have now managed to improve this (thanks to my Mum's mars bar cake) and also for anyone else with the same problem I recommend a drink called 'Fortisip yoghurt style', which I find easy to take and works very well. I have borderline CF-related diabetes so I have to make sure my sugars don't go too low. I tried insulin but it didn't work well for me and made my sugars go too low. Now I just keep high glucose tablets in my bag or pencil case at school and make sure I don't go for long periods without eating. I don't hide the fact that I have CF and my friends like taking guesses about how many Creon I should take with my food, and they're getting quite good at it! I'm in 5th year in school and it can be hard to stay on top of all the work as I can miss up to 40 days a year with chest infections or just normal colds which make me really tired and take a long time to get rid of. So far I have been lucky enough to only have been admitted twice for IV antibiotics but I may need to go in more regularly as I get older to 'keep on top of things'. The last time I was an inpatient it was a big battle to make sure I got out in time for my school Grads. Thankfully I did, two days beforehand, and had a great time. During my stay there I managed to solve my fake tan mystery! I discovered that the reason fake tan wouldn't stay on was because of my salty skin and most fake tans wash off in salt water. Mar/Apr 2014
Aileen is in 5th year in school.
"I believe there is great hope for the future of CF especially with all the new treatments available and trials that are ongoing"
Aileen would love to continue working with music when she leaves school.
My lung function has stayed stable most of my life at 58-60% and I try my best to exercise, usually on my treadmill which is handy so that I don't have to go out in the rain. It also means there are no excuses for not exercising. Sometimes it's hard when I'm sick or when I have a sore back which happens occasionally because I developed scoliosis , and which is not CF related, but that's a whole other story in itself! My two main interests are music and animals and I would love to continue working with animals and/ or music when I leave school. I have had lots of pets throughout the years and currently have two dogs and two turtles. I spend a lot of time playing my guitar and singing. I like all kinds of music but country in particular and enjoy uploading videos on my YouTube channel. I go to singing lessons and I find it helps my lungs a lot although sometimes I can sound very hoarse depending on what nebuliser I'm on as I do alternate months of Tobi and Cayston. Because the nebulised Tobi affects my voice, when the new Tobi Podhaler came out I switched to it straight away to see if it would be any different. It was great at the start because it was really quick and easy to take but overall it wasn't a success for me as it made me feel very tight by the third week and I could hardly climb a flight of stairs. Now I'm back on what I started with and just sing songs in a lower key than normal when I'm on my Tobi month. I recently produced a CD in aid of the 'Cystic Fibrosis Galway Hospital Project' whose aim is to build a dedicated CF paediatric outpatient unit in Galway hospital. I wanted to give myself a little project and thought I would use my love of music to help out the charity which I know will benefit greatly from any money made, be it large or small. The CD is sponsored by 'Henderson Fire and Safety Ltd' and 'Print That' NUI Galway. It has 6 tracks on it including songs from artists such as Fleetwood Mac and Creedence Clearwater Revival and is available in Galway from 'OMG' shop street, 'Vina Mara' Restaurant Middle Street, 'Lohans Bar and Restaurant' in Salthill and also from myself through email on email@example.com. So far with the help of a lot of people it has been doing very well and has received extensive coverage in local and national newspapers and radio. It is also featured on the 'Cystic Fibrosis Hospital Project' facebook page and received over 8,000 views in less than a week. Because of my youtube channel I had people from other parts of the world interested in the CD and it kept me busy dealing with emails and posting copies out to countries such as Germany and America. All of this caused a lot of excitement as I didn't expect it to get so much publicity!
Dr. Mary Herzig, Consultant Paediatrician in CF at University Hospital Galway, Aileen and Mary Lane Heneghan, Galway Branch CFI, at the launch of the CD.
"I wanted to give myself a little project and thought I would use my love of music to help out the charity which I know will benefit greatly from any money made, be it large or small."
I'm just a normal teenager with a few extra things to do and I believe it is important that people with CF understand that it doesn't need to rule your life Ă‘ just concentrate on the good days!
Spectrum / Issue 38
65 Roses National Awareness Week 2014, 28th March Ñ 4th April We are delighted to report a lot has been planned to take place during our National Awareness Week and throughout the month of April. If you still haven't contacted us to request support for your upcoming fundraising event, please get in touch soon. And if you can spare a few hours during the week, and more specifically on our Flag Day on April 4th, get in touch and let us or the local Branch know if you want to help out in any of the venues listed below! Do you live locally to any of the pending venues? Please feel free to approach the Centre Management to confirm if 4th April has been allocated to Cystic Fibrosis Ireland and let us know! Business
Date Available Carlow Shopping Centre Kennedy Avenue Carlow 4th April Fairgreen Shopping Centre Barrack Street Carlow 4th April Sky Court Shopping Centre Shannon Co Clare 4th April Desmac Bandon Shopping Centre Bandon Co Cork 4th April Carrigaline Shopping Centre Main Street, Carrigaline Co Cork 4th April Blackpool Shopping Centre Blackpool Cork 4th April Paul Street Shopping Centre Paul Street Cork 12th April Wilton Shopping Centre Sarsfield Road, Wilton Cork 4th April North Main Street Shopping Centre North Main Street Cork 4th April Mahon Point Shopping Centre Mahon Link Road, Mahon Cork 4th April Douglas Village Shopping Centre Douglas Village Cork 4th April Merchants Quay Shopping Centre 1/5 Patrick Street Cork 4th April Savoy Shopping Centre Patrick Street Cork 4th Ñ 11th April Letterkenny Shopping Centre Port Road, Letterkenny Co Donegal 16th May WhiteWater Shopping Centre Main Street, Newbridge Co Kildare 4th April Drogheda Town Centre Limited West Street, Drogheda Co Louth 4th April Navan Shopping Centre Kennedy Road, Navan Co Meath 4th April The Bridge Shopping Centre Bridge Street, Tullamore Co Offaly 4th April Thurles Shopping Centre Slievenamon Road, Thurles Co Tipperary 4th April Buckley's Supervalue Mullingar Co. Westmeath 4th April Harbour Place Shopping Centre Harbour Street, Mullingar Co Westmeath 5th April Tesco Kinnegad Co Westmeath 29th March Bridgewater Centre North Quay, Arklow Co Wicklow 4th April Ashleaf Shopping Centre Cromwellsfort Road, Crumlin Dublin 12 11th April Mar/Apr 2014
Nutgrove Shopping Centre Management Blanchardstown Centre Royal Hibernian Way Shopping Centre St Stephens Green Shopping Centre The Square Town Centre Citywest Shopping Centre
Nutgrove Avenue, Rathfarnham Blanchardstown Dawson Street
Date Available 4th April
Dublin 15 Dublin 2
4th April 4th April
St Stephens Green West Tallaght Citywest Business Campus, Fortunestown Merrion Road, Ballsbridge Artane Castle Phibsborough Road 44 Prussia Street
Dublin 2 Dublin 24 Dublin 24
4th April 4th April 4th April
Dublin 4 Dublin 5 Dublin 7 Dublin 7 Dublin17 Co Dublin Co Dublin Co Dublin Co Dublin
4th April 4th April 4th April
Superquinn Shopping Centre Dun Laoghaire Shopping Centre Galway Shopping Centre O'Toole Supervalu Murphy's Centra Tuam Shopping Centre
Malahide Road Naul Road, Balbriggan, Balbriggan Malahide Road, Swords Frascati Road, Blackrock Lower Georges Street, Dun Laoghaire Lower Kilmacud Road, Stillorgan Newcastle Road, Lucan Marine Road, Dun Laoghaire Headford Road Tuam Tuam Tuam
Pending 19th April 4th April 4th Ñ 11th April 2nd Ñ 3rd July 4th April
Co Dublin Co Dublin Galway Co. Galway Co. Galway Co. Galway
Fairhouse Supermarket T/A Eurospar Kilkenny Arthurs Quay Centre Parkway Shopping Centre Monaghan Shopping Centre Georges Court Shopping Centre City Square Shopping Centre Gorey Shopping Centre
Newpark Shopping Centre, Kilkenny Arthurs Quay Dublin Road Dawson Street Georges Street City Square Gorey
11th April 4th April 4th April 3rd Ñ5th April 4th April 4thÑ 5th April 4th April
Limerick Limerick Monaghan Waterford Waterford Wexford
4th April 4th April 4th April 4th April 4th April 4th April
Merrion Shopping Centre Artane Shopping Centre Phibsboro Shopping Centre The Park Shopping Centre Clare Hall Shopping Centre Millfield Shopping Centre Pavillion Shopping Centre Blackrock Shopping Centre Bloomfield Shopping Centre Stillorgan Shopping Centre
Spectrum / Issue 38
Be One in 1000 for CF Ireland Flora Women's Mini-Marathon Ñ 2nd June 2014 Thank you to all who have signed up to join the CF Ireland One in 1,000 Women's Mini-Marathon Team. Places are still available but are filling up fast! Register as an individual or with a team with us and help us reach our Goal of 1,000 participants. If you have already registered with us, your race pack will be arriving soon. Due to sponsorship by Abbott Pharmaceuticals we have new running tops this year: you will be looking good when running for CFI!
Our goal: Recruit 1,000 participants Your goal: Be One in 1000 for CF Why be Onein1000? Over the past 4 years, the CFI Onein1000 appeal has raised a whopping Û600,000 for people with Cystic Fibrosis (CF) in Ireland. These funds have allowed CFI to fund a new state of the art 4 bed ward for children in Crumlin Hospital, to provide support and services for people with CF and to fund new and additional isolation beds and treatment units nationwide. This is one of our biggest fundraising events, we need your support and dedication to continue this good work. Like previous years CF Ireland will have be hosting a party in Dublin all day with refreshments, music and prizes to reward all our participants.
L-R: Lana Woodward, Nuala Carey and Emily Woodward at the launch of the 1 in 1000 campaign this year.
Where to start? Step 1: Register for the FWMM at www. florawomensminimarathon.ie or find the official entry form in the Evening Herald every Wednesday and Saturday. Step 2: Email details of your confirmation/race registration number to firstname.lastname@example.org or Lo Call 1890 311 211 Step 3: Start training!
Lana and Emily with their mum Zoe.
What comes next? Once you have registered with us you will be provided with your fundraising pack which includes a t-shirt, sponsorship card, tips for online fundraising and race day information. Follow the Onein1000 event on Facebook and get tips and advice for the day along the way! www.facebook.com/1in1000. For more information on this event or any other please contact Suzie at email@example.com or Lo Call 1890 311 211 Mar/Apr 2014
Challenges & Events If you would like to take part in any of the challenges, please register online and contact us for your sponsorship pack.
Interested? Contact us or visit our website as we only have a limited number of spots and places are allocated on a first come first served basis.
Paris2Nice Cycle Challenge Sept 20 Ñ 25th We have a team of twelve brave cyclists who are taking on the Paris2Nice Cycle Challenge Sept London Marathon 2014 Ñ 13th April 2014 We would like to wish the Team travelling to 20 Ñ 25th. Please look out for their fundraising events over the coming months and support them London for the Marathon BEST OF LUCK!! where you can. If you can't make Paris2Nice this Western People West of Ireland Mini-Marathon year Ñ but you are interested in doing other cycle challenges for CF Ireland, please let us know! Sunday May 4th at 12 noon Join the CF West team for the 5th Annual MiniMarathon at 12 on The Mall Castlebar. Sonia O'Sullivan will join the runners/joggers/walkers again this year. Photographed at the start of last year's event with CF West participants include CF Nurse Lorna O'Connor, Physiotherapist Sara English and Minister Michael Ring.
CF West participants in 2012 included Sonia O'Sullivan, CF Nurse Lorna O'Connor, Physiotherapist Sara English and Minister Michael Ring.
TCS New York Marathon 2014 Ñ 2nd Nov 2014 We are delighted to announce details for the TCS New York City Marathon 2014 have been received. Finalised info on our Team will be available in the coming days on our website.
Community Events An intimate evening with Mary Duff and Friends The Committee is delighted to invite to join Mary Duff & Guests for her upcoming concert in aid of Cystic Fibrosis.
Mary Duff will perform on May 16th at 8pm in The Venue, Ratoath, Co. Meath in aid of CF.
The event will take place on May 16th at 8pm in The Venue, Ratoath, Co, Meath. Tickets are available to purchase directly from The Venue: t: 01 6895600 email info@venuetheatre. ie w: www.venuetheatre.ie
This marathon is the most sought after event both as a challenge and as a spectator and the only way to ensure you are part of it is by joining our Team. Places are available as a Tour package only, which includes return flights, 4 nights accommodation, transfers and guaranteed entry.
Spectrum / Issue 38
Thank You Becky's Ball On the 15th of February the President's Suite of the Aviva Stadium hosted a very special Valentine's Ball Ñ Becky's Ball. The evening began with a wine reception, followed by a three course meal and dancing to a live band. Guests took part in an auction and a raffle for very enviable prizes. Almost Û22,000 was raised through the event Ñ and a BIG THANK YOU to the organiser Jill Houston and her team of volunteers, and of course to generosity of all the attendees. The Ball was held in honour of Becky Jones, a longtime friend of Jill. Becky was born with Cystic Fibrosis, and in May of 2011 she underwent a double lung transplant, being the first person suffering from a fungal infection of the lungs called aspergillosis to do so. Though the summer began with an array of optimism, the months that progressed from this saw many ups and downs. When met with further obstacles she could not overcome, Becky passed away in September of that year. Becky is most remembered for by those that knew her is her overwhelmingly positive approach and consideration for others, even more pronounced during her own personal struggles. Her compassion and cheerful spirit endeared her to all that knew her. And so, a ball bearing her name couldn't have been anything but a fun, slightly out of the ordinary, but, above all, a very classy affair.
Kate & Jill, the organisers of Beckys Ball fundraising event, who called into CF House to present us with a donation of an amazing Û21,500!
Pictured is Ann Eble (second from right) and the Ladbrokes staff in Dun Laoghaire presenting CF Ireland with the donation.
Ladbrokes Sweepstake Thank you to Ladbrokes Dun Laoghaire & Ladbrokes Ballybrack for raising Û2,000 through a sweepstake held in aid of CF Ireland. Special thanks to Ann Eble who nominated CF Ireland to be the chosen charity of the competition. Thank you to Karen, Gemma, Zoe, Ann Marie, Roslyn, David and all the Ladbrokes customers who entered the sweepstakes.
Tuscany Walk 2013 Ă‘ Walk Committee Report The excitement could be felt at Dublin Airport on October 5th 2013 as the 30 walkers gathered together in anticipation, yet well prepared for our walking adventure in Tuscany. We travelled with Aer Lingus to Bologna on a very comfortable flight where we were met by our lovely knowledgeable guide Cristiana. After a 2 hour bus journey we were just in time for a lovely dinner and our first taste of Tuscany. First thing to note that morning was the breathtaking valley below and breathed in the Tuscan air. After breakfast we took a short bus journey to start our first walk which was the Botanical Route with its lovely Cyprus trees, olive trees, deer and wild boar (but no wild boar on sight!). The smell of the flowers still lingered in the wood even though the flowering season was coming to a close. This walk was indeed a bit of a challenge as it had rained the night before so we had a few puddles to avoid. We were glad of the rest when it came to lunch time, enjoying Montecatini Alto and it local culture. Monday morning after an early breakfast, we boarded the bus for a full day walking tour of Florence. The rain came down very heavy but it didn't stop the excitement. On arrival in Florence we walked into the square to grab a cup of coffee and organise some rain protection, we then set off together with our guide. We visited many historical buildings around the city including 'The Duomo' which is the most beautiful cathedral standing gracefully over the city, named in honour of Santa Maria del Fiore. Tuesday morning we set off early to visit the Padule (Pond). The walk to the Padule, well known by bird watchers, was so refreshing and the sun shone brightly for us. Next stop of the day was Montecatini. After dinner we had our annual Honorary walker award and this year Briege Lynn took the well deserved award. This was Briege's 11th overseas walk for CF. The night was complemented by a very enjoyable table quiz. Another day, another tour, and this time we were off to Pisa. Our first stop was of course 'The Leaning Tower', the Cathedral and the Piazza dei Miracoli. Our group picture was taken with The Leaning Tower in the background. We were sad leaving this amazing city as we made our way to our new base in Castagneto Carducci. Thursday morning had a lovely surprise in store for us as we were met by local Nordic walkers who supplied all the group with Nordic walking sticks. After a 20 minute training on how to walk the Nordic way we set off for a long walk to the beach. The Nordic walking was great fun and made our walk very easy even though I am not sure if some walkers carried their Nordic sticks or actually used them to their advantage! Some walkers braved it and had a dip in the sea. On this day we also walked around the town of Bulghiri, this was an amazing little quaint town with beautiful views of the valley below. Friday took us on a walking tour surrounding the town of Castagne to Carducci. On this day once again we used the Nordic walking sticks. We found these great as we had an uphill walk which was approx 7km. When we got to the top we had a lovely surprise of snacks, fruit and water in a little hut at the top. After a rest here we made our way back down to the town for a well deserved rest again and some lunch. After lunch a nice surprise of wine tasting in the local vineyard was a tasty treat for all. Our gala dinner took place in a lovely Tuscan restaurant in the little town of Bulghiri. All deserving walkers received their certificates and a token to bring back and remember their time in Tuscany. A sing song after dinner finished off this wonderful successful trip. Saturday morning, after breakfast, we checked out of our hotel and made our departure from Tuscany with a heavy heart. Do you want to be part of an amazing experience like the Tuscany one? Join the group travelling to Austria on September 20th! 20
Spectrum / Issue 38
Help the CFI Ireland LIFE SUPPORT Campaign Because Ireland has the highest prevalence of Cystic Fibrosis in the world, many people will know someone who is living with Cystic Fibrosis. However, fewer may know how tough it is to stay well when you have CF and the support that Cystic Fibrosis Ireland provides to help people with CF stay well. There is a constant daily battle for people with CF to maintain their health, often with scores of pills and other medications to take every day and a challenging regime of exercise and physiotherapy that will take at least 2 hours every day, even for those with CF who are comparatively well. For those of our patients who are less well and who may be constantly dependent on oxygen; waiting for a lung transplant or who will spend weeks as an inpatient after a worsening of their condition, the daily treatment regime is much longer and even more of a struggle. There is a constant battle for funding for CF hospital facilities; for research, for equipment and assisted living. Those with CF and their families contribute daily through determination and perseverance of treatment, but with cutbacks we increasingly need public support to maintain crucial CF services. With the support of Cystic Fibrosis Ireland and the current advances in medication and our wonderful care teams in CF centres, more people with CF can now hope to be a mum or a dad, perhaps even a grandparent Ñ a dream that was impossible when CFI was set up in 1963 and when children with CF were not expected to reach primary school. Help us through your donations for CF Life Support. Donate Details Text HelpCF to 50300 to donate Û2. 100% of text cost goes to charity across most network providers. Some providers apply VAT which means a minimum of Û1.63 will go to CF Ireland. Service provided by LikeCharity 01 4433778.
Cystic Fibrosis Ireland t: +353 1 496 2433 24 Lower Rathmines Road f: +353 1 496 2201 Dublin 6 e: firstname.lastname@example.org Ireland w: www.cfireland.ie Company Reg: 449954 Spectrum / Issue 38 Charity: CHY6350 22