Mar/Apr 2012
SPECTRUM
Published by the Cystic Fibrosis Association of Ireland
IN THIS ISSUE:
• 65 Roses Awareness Week • CF Centre Updates • Genetic Counselling • Challenge Events for CF • Creative Supports for Teens
Issue 26: Mar/Apr 2012 www.cfireland.ie
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Spectrum / Issue 26
Dear All, The theme of our Annual Conference in Wexford this year is appropriately ‘Working Together’. We hope this issue of Spectrum shows what can be achieved when we work together, even when times are tough. Thanks to all our partners and supporters and particularly our Branches, we can report on progress on our key building commitments around the country, which will result in better in-patient, out-patient and day-care facilities for adults and children with CF. For example, the contract to build the new CF Centre for adults in Limerick has just been signed and we have just bought a property to convert into an out-patient centre in Our Lady of Lourdes Hospital in Drogheda. This builds on the progress evident in the Crumlin hospital in-patient development of last year, which was very much about working together. And of course, the new unit in St Vincent’s will be open in June of this year. In the Mater Hospital there have been 3 CF transplants undertaken already this year and the new surgeon, Ms Karen Redmond, is a leading expert in Ex Vivo Lung Perfusion, which will increase the number of lungs available for all patients needing a lung transplant. There is of course no room for complacency. The set back in the building of the new National Children’s Hospital and the ongoing struggle around replacing hospital CF specialists on sick and maternity leave shows that there are many challenges ahead. If you can make it we would love to see you at the Annual Conference in Wexford. If you can’t make it maybe you can tune in to our webcast. Kind Regards, Philip Watt (CEO) Alica May (Editor) DISCLAIMER: The views of contributors, when expressed in this publication, do not necessarily reflect the position or policy of the Cystic Fibrosis Associaiton of Ireland.
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Mar/Apr 2012
Section 01:
65 ROSES WEEK 2012 : Page 2–5 CFAI Annual Conference 2012 Events for 65 Roses / CF Awareness Week Volunteers Needed – Can you help? -Section 02:
LATEST NEWS : Page 6–12 St Vincent’s Hospital to Open in June 2012 Progress at MWRH on Staff Services & Developments at other CF Centres Transplants at the Mater in 2012 Creative Support for Teens Living with CF Psychology Group Seeks Your Input Love Your Lungs – Press Lunch Review New CFAI Website -Section 03:
PHARMA NEWS : Page 13 KALYDECO -Section 04:
ENTITLEMENTS : Page 14 Carer’s Benefit -Section 05:
PWCF SPOTLIGHT : Page 15–17 Bevin Murphy, PWCF, 17, ‘Cystic Fibrosis doesn’t define who you are’ Andy Lipman, PWCF 38, ‘I may have Cystic Fibrosis but it will never have me!’ -Section 06:
GUEST FEATURE : Page 18–19 Genetic Counselling and Newborn Screening -Section 07:
EVENT FOCUS : Page 20–21 Hang up your Heels and Run for Cystic Fibrosis! -Section 08:
FUNDRAISING : Page 22–25 Challenge Events Community Events Nationwide Cheque Presentations to CFAI...See Inside for More... 1
Spectrum / Issue 26
65 ROSES WEEK
SECTION 01
PAGE 2—5
Our 65 Roses National Awareness Week is fast approaching! Awareness week will be officially launched at our Annual Conference on Friday 13th April and will run up until Friday April 20th – our 65 Roses National Flag Day. Below is a reminder about our conference and some of the events that will be taking place during 65 Roses Awareness Week 2012.
CFAI Annual Conference 2012 White’s Hotel Wexford, 13th-15th April This years CFAI Annual Conference will be taking place on the 13th-15th April in Whites Hotel, Wexford. The theme of this years conference is “Working together to improve CF Services”. As we approach our 50th birthday, the conference provides the opportunity to focus on recent developments and achievements in the CF community while providing a range of talks and seminars that should cover a broad spectrum of topics regarding CF. We hope to bring together both new and old members of the association for an informative and fun-filled weekend. The official opening and launch of our 65 Roses Week will take place on the Friday evening which Minister for Health, Dr James O’Reilly will be attending to give a ministerial address. CF Advocate, Andy Lipman, from the USA, will also be present to share his experience with us all (see PWCF Spotlight section for more on Andy). Thanks to the generous sponsorship from Novartis, Chiesi, Baxter Healthcare and Vertex Pharmaceuticals we have been able to subsidise the cost of the conference to our members for the weekend. All members must register to attend the conference or to avail of the subsidised rate. There is no cost to members who wish to attend for the Saturday only. We welcome all members and friends to attend at any part of the weekend. For more information, or to download the agenda and registration details, please visit www.cfireland.ie or contact Suzanne directly on t: 01 4962433 or e: info@cfireland.ie
The CFAI Annual Conference 2012 will be taking place at Whites Hotel in Wexford.
The staff of the CFAI look forward to seeing you at the conference!
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Mar/Apr 2012
‘65 Roses’ / CF Awareness wEEK 13th – 20th April 2012 CFAI will again be selling our 65 Roses lapel badges this year to raise awareness for Cystic Fibrosis and to raise funds with the aim of improving facilites and services for children and adults with CF around the country. The 65 Roses lapel pins will be selling for €2 and the 65 Roses trolley coins for €3 – please spread the word and help make a real difference to the lives of people with cystic fibrosis.
65 Roses / CF Awareness Week will run from 13th – 20th April 2012.
If you are willing to support us, we have two different options depending on your availability. Do you have a couple of hours to spare? We are looking for volunteers to help out in a number of shopping centres (see over), which have been specifically allocated for dates during awareness week. Please let us know if you would like to take part and help us to ensure that where shopping centres are kind enough to allocate time to CFAI, we can have a presence on the day. Would you like to do a little bit more for Cystic Fibrosis? We are inviting everyone to get involved and to organise their own creative fundraising event in conjunction with National Awareness Week, from coffee mornings, raffles, colours day (i.e., involving your local school to wear purple for one day) etc – there are endless possibilities to raise awareness for Cystic Fibrosis!
Say it with flowers during 65 Roses Awareness week.
Do you have an idea? Please get in touch with the Fundraising Team who will be glad to discuss further and provide all the support needed. For more information on Awareness Week Please call Rosie Begley on 01 4962433 or email rbegley@cfireland.ie.
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Spectrum / Issue 26
Events DURING Awareness wEEK 13th – 20th April 2012 Tattoo for CF – Saturday 14th April Trinity Tattoo, Naas, Co Kildare are holding a Tattoo Day “Just Breathe” is the standard tattoo for the day. All tattoos on the day cost just €50 with all proceeds going to CFAI. Contact: Steve Collins / Mob: 087 7430227 Note: YOU MUST BE OVER 18 Karyn Jenkins Memorial Tennis Tournament – 21st – 22nd April Glenalbyn Tennis & Kilmacud Sports Club, Stillorgan, Co Dublin are hosting another tennis tournament this year. Contact: Gertrude Ward / Mob: 0868797154 Cabaret Night – Friday 20th April The Bailey Pub, Enniscorthy, Co Wexford are holding a Cabaret Night with all proceeds going to CFAI. Contact: Joseph Doyle / Mob: 086 6074200
Volunteers needed Nationwide – See details below Please call Rosie Begley on 01 4962433 or email rbegley@cfireland.ie if you are available to help on any of these dates: Shopping Centre Area Date Available Carlow Shopping Centre Carlow 20th April 2012 Fairgreen Shopping Centre Carlow 20th April 2012 Sky Court Shopping Centre Co. Clare 16th – 17th April 2012 Desmac Bandon Shopping Centre Co. Cork 18th – 19th April 2012 Carrigaline Shopping Centre Co. Cork 20th April 2012 Ballincollig Shopping Centre Co. Cork 14th July 2012 North Main Street SC Co. Cork 20th April 2012 Courtyard Shopping Centre Co. Donegal 20th April 2012 Letterkenny Shopping Centre Co. Donegal 20th April 2012 Millfield Shopping Centre Co. Dublin 20th April 2012 Pavillion Shopping Centre Co. Dublin 20th April 2012 Stillorgan Shopping Centre Co. Dublin 14th April 2012 Lucan Shopping Centre Co. Dublin 20th April 2012 Dun Laoghaire Shopping Centre Co. Dublin 20th April 2012 Killarney Outlet Centre Co. Kerry 20th April 2012 Manor Mills Shopping Centre Co. Kildare 20th April 2012 WhiteWater Shopping Centre Co. Kildare 20th April 2012 MacDonagh Juntn Shopping Centre Co. Kilkenny 20th – 21st April 2012 EuroSpar Fairhouse Supermarket Co. Kilkenny 25th – 26th May 2012 Rathdowney Shopping Outlet Co. Laois 20th April 2012 Jetland Shopping Centre Co. Limerick 20th April 2012 Watch House Cross Shopping Centre Co. Limerick 20th April 2012 Drogheda Town Centre Limited Co. Louth 20th April 2012 Longwalk Shopping Centre Co. Louth 20th April 2012 4
Mar/Apr 2012
Shopping Centre Area Date Available Dundalk Shopping Centre Co. Louth 20th April 2012 Scotch Hall Shopping Centre Co. Louth 2nd June 2012 Marshes Shopping Centre Co. Louth 20th April 2012 Navan Shopping Centre Co. Meath 20th April 2012 Roscrea Shopping Centre Co. Tipperary 20th April 2012 Waterford Shopping Centre Co. Waterford 20th April 2012 Harbour Place Shopping Centre Co. Westmeath 20th April 2012 Golden Island Shopping Centre Co. Westmeath 20th April 2012 Tesco Co. Westmeath 20th April 2012 Tesco Kinnegad Co. Westmeath 19th April 2012 Bridgewater Centre Co. Wicklow 20th April 2012 Blackpool Shopping Centre Cork 20th April 2012 Douglas Court Shopping Centre Cork 20th April 2012 Paul Street Shopping Centre Cork 20th April 2012 Wilton Shopping Centre Cork 20th April 2012 Douglas Village Shopping Centre Cork 20th April 2012 Merchants Quay Shopping Centre Cork 20th April 2012 Mahon Point Shopping Centre Cork 14th April 2012 Savoy Shopping Centre Cork 20th April 2012 Irish Life Shopping Mall Dublin 1 20th April 2012 Ballymun Town Shopping Centre Dublin 11 20th April 2012 Ashleaf Shopping Centre Dublin 12 18th – 19th April 2012 Nutgrove Shopping Centre Dublin 14 20th – 21st April 2012 Supervalue/Rosemount Centre Dublin 14 20th April 2012 Roselawn Shopping Centre Dublin 15 20th April 2012 Blanchardstown Centre Dublin 15 20th April 2012 Dundrum Town Centre Dublin 16 20th April 2012 Northside Shopping Centre Dublin 17 20th April 2012 Powerscourt Shopping Centre Dublin 2 20th April 2012 Royal Hibernian Way Shopping Dublin 2 20th April 2012 St Stephens Green Shopping Centre Dublin 2 20th April 2012 The Square Town Centre Dublin 24 14th April 2012 Citywest Shopping Centre Dublin 24 13th – 15th April 2012 Merrion Shopping Centre Dublin 4 20th April 2012 Swan Shopping Centre Dublin 6 20th April 2012 Galway Shopping Centre Galway 20th April 2012 Eyre Square Shopping Centre Galway 20th April 2012 Arthurs Quay Centre Limerick 20th April 2012 Crescent Shopping Centre Limerick 17-19th May 2012 Parkway Shopping Centre Limerick 20th April 2012 Castletroy Shopping Centre Limerick 20th April 2012 Monaghan Shopping Centre Monaghan 20th April 2012 Georges Court Shopping Centre Waterford 20th April 2012 City Square Shopping Centre Waterford 20th – 21st April 2012
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Spectrum / Issue 26
LATEST NEWS
SECTION 02
PAGE 6—12
St Vincent’s Hospital TO open in June 2012 Update on Building Work The new 2 floor CF in-patient/day care and out-patient centre in St Vincent’s Hospital will be handed over to the hospital from the builders on 21st June 2012. There will a deep clean by the hospital and patients will be moved in stages in late June/early July. The present demand and waiting list for CF beds in St Vincent’s Hospital shows more than ever why this new unit is badly needed. The CFAI continues to link closely with the management and clinicians on the forthcoming development, including on the issues of timescales and patient transfer to the new unit when completed. The agreement between the CFAI, the Department of Health and St Vincent’s Hospital on 11th March 2011 on the commitment of 34 in-patient beds for CF patients in St Vincent’s is available on the Department of Health website: www.dohc.ie/press/releases/2011/20110416.html CFAI has recently met with the CEO of St Vincent’s and the Lead Clinician, Professor Charles Gallagher in recent weeks to discuss progress and arrangements. Minster for Health, Dr James O’Reilly, issued the following statement to the Oireachtas in February 2012: ‘St Vincent’s University Hospital is the designated National Adult Referral Centre for patients with Cystic Fibrosis. Phase 2 of the development at St Vincent’s Hospital is designed to provide a state of the art clinical building which will include up to date isolation facilities with accommodation for people with cystic fibrosis and others requiring such facilities. The new unit is due to open in June 2012. The unit will also provide a dedicated CF Day Unit, containing offices, treatment rooms, together with 10 single day treatment rooms, each with en-suite sanitary facilities for treating patients with cystic fibrosis. The hospital management in conjunction with relevant stakeholders is currently preparing plans for the transfer of patients to the new accommodation to take place as soon as possible’.
Artists impression of the new unit at St Vincent’s, which is due to open in June 2012.
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Mar/Apr 2012
pROGRESS at mwrh, Limerick, on sTAFF Services By Katie Murphy, Regional Development Officer for Tipperary, Limerick and Clare Recently, there had been deterioration in the services being provided to CF patients attending the Mid-Western Regional Hospital, Limerick – primarily in the fields of dietetics and physiotherapy – with both dedicated specialists on sick/maternity leave. These issues have been recently resolved by the hospital, clinicians, TLC4CF and the CFAI working together – this report outlines progress made as a result of this partnership. “Once weight or lung function is lost it may never be regained and this directly translates into a worse outcome in terms of morbidity and mortality. One missed out-patient assessment can have a significant impact on patient care”. CF Consultants, MWRH—Feb 2012. TLC4CF and the CFAI have been working relentlessly over the past few weeks to rectify the gaps in physiotherapy and dietitian services. An evidence-based report was prepared by CFAI/ TLC4CF which outlines the deterioration of the services. At the time of writing there was no Dietitian attending the annual assessments or weekly clinics of either children/teenagers or adults with CF. Furthermore, the only Physiotherapy service being provided to children/teenagers was a partial one through a rota of junior physiotherapists with little or no CF training/experience. In some paediatric clinics there were no physiotherapists present. The welcome recent ministerial appointment of Ann Doherty as Group Manager of hospitals in the Limerick region was viewed as a prime opportunity to try and resolve these issues once and for all. On the 7th March, TLC4CF, CFAI, CF specialist staff members and hospital management all met to discuss these issues which yielded positive results; a locum dietitian is being hired to cover the 10 month maternity leave of the dedicated CF dietitian. However, the new dietitian will not be treating CF patients. A permanent, full-time staff member will take on the role of CF dietitian for the duration of leave and will be attending annual assessments, clinics twice weekly, will treat in-patients and will also work with newly diagnosed families. The selected dietitian will be receiving CF specialist training in Galway in the coming weeks, will attend dietetic workshops/ sessions being held at the CF European Conference and will also attend a week long training course in Brompton, UK, in September which is being sponsored by Novartis. The replacement dietitian will be in place at the beginning of April 2012. The post of CF Physiotherapist Specialist at the MWRH has been unfilled since the post holder went on sick/maternity leave in November 2011, with the anticipated return date not until April 2013. At the moment, a Senior Paediatric Physiotherapist has taken on the role of CF specialist for paediatric patients; however, she is not dedicated to CF care but attends as many clinics, annual assessments and in-patients as possible on a daily basis. The service currently being provided has been deemed satisfactory, with the paediatric consultant reporting increases of up to 15% in lung function in some patients. The increase in the overall Physiotherapy work force at MWRH will hopefully allow for more dedicated time to CF care. TLC4CF and CFAI will be meeting with hospital management on a regular basis in order to ensure a baseline of services is provided and maintained for CF patients attending MWRH.
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Spectrum / Issue 26
Developments at Other cf cENTREs Progress Update LM4CF/Drogheda Congratulations also to LM4CF! Progress on the new children’s out-patient unit was announced at a packed fundraising concert in Drogheda on 3rd March. The purchase of the out-patient building will be completed shortly with money raised from national fundraising. Particular thanks to the LM4CF committee including Loretta Allen Byrne, Cyril Gillen, Peter Hughes, Maire and Iain Gallagher and Gerard Fay. The fundraising concert was organised by Claire Finnegan who along with her band and fellow artists gave a fantastic concert in the Droichead Arts Centre (photos and report in next issue of Spectrum). TLC4CF/Limerick/CFAI Many congratulations to TLC4CF as site clearance for the new €4m adult CF unit in Limerick has commenced. The new unit is planned to be completed in the summer/autumn of 2013. The agreement with the developer, Rhatigans, was signed on 20th March and the project is due to be completed within 18 months. Following a meeting with management, significant progress was made in relation to securing adequate Dietitian and Physiotherapy services in the hospital (see previous article) which had been affected by the staff recruitment embargo. Particular thanks to the TLC Committee, Owen Kirby, Caitriona Hayes, Linda Drennan, Marcella Clancy and Liam O’Kelly and all in the three branches in the area. Galway Thanks to lobbying by the Galway Branch including through the work of Mary Lane-Heneghan, a CF nurse is in the process of being recruited. Mayo/Castlebar/CFAI The work to raise funding for the new unit in Castlebar is also progressing well thanks to the efforts of the Mayo Branch. CFAI continues to work in partnership with regional Branches in all these projects, including direct funding support, legal advice, and support.
Transplants at the mater More Good News Three CF double lung transplants have been undertaken in the Mater Hospital since the beginning of 2012. This includes a CF re-transplant (second transplant) carried out by the Mater team in January of this year. Philip Watt, Dr Barry Plant and Dr Ed McKone recently met with the CEO and the Clinical Director at the Mater as part of regular meetings with the hospital. The recent progress was strongly welcomed and CFAI emphasised the need for this progress to be sustained. Organ Donor Awareness Week will be launched in the Mansion House on 26th March at 11am, organised by the IKA in association with the Irish Donor Network, including RTÉ’s Joe Duffy.
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Mar/Apr 2012
nATIONAL cHILDREN’S HOspital Update An Bord Pleanála has turned down planning permission for the proposed National Children’s Hospital in Dublin. The plan was rejected by a majority of three to one of the Board. Construction of the €650m hospital was due to be completed by 2016 and it would have been the biggest building project in the State. An Bord Pleanála said the development would result in “a dominant, visually incongruous structure and would have a profound negative impact on the appearance and visual amenity of the city skyline”. This news underlines the importance of the continued support of the CFAI for the three existing CF paediatric centres in Dublin – Crumlin, Tallaght and Temple Street. A committee has been established to consider the implications of this decision which includes Professor Gerry Loftus from Galway University Hospital, a Paediatrician who contributed much to CF care in Galway for many years and who chaired the HSE Newborn Screening committee.
Research in Cork and St Vincent’s Progressing Well A major new research project in Cork University Hospital is commencing through support from the Southern Branch of CFAI and the National Office is supporting three other major research projects in Cork, St Vincent’s Hospital and University College Dublin with joint funding from the Health Research Board/MRCG. The Review of the Pollock Report and a needs analysis for in-patient beds in Beaumont Hospital and progress in Cavan and Waterford Hospital are among further work within the remit of the Association, working closely with the Branches in those areas.
New Faces at cfai Introduction to New Staff Member Rosie Begley, Fundraising Co-ordinator Rosie Begley has recently joined Cystic Fibrosis Association of Ireland. Rosie joins Cystic Fibrosis as Community Fundraising Co-ordinator. Coming from a wide range of experience in the charity sector her main responsibility will be focusing on Community based initiatives including the ‘65 Roses Awareness Week’ in April. Rosie has a Higher Diploma in Business Studies & Marketing from Institute of Technology Tralee and a Diploma in Digital Marketing from The Digital Marketing Institute, Dublin. If you need to get in touch with Rose, please call t: 01 4962433 or e: rbegley@cfireland.ie.
Rosie is the new Fundraising Co-ordinator at CFAI.
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Spectrum / Issue 26
Creative Support For Teens Living with CF By Helene Hugel – Helium’s Artistic Director Project Exploring the Use of Technologies to Provide Creative Support to Teens Living with CF Helium is an Arts Organisation working to make hospital a positive, fun and more comfortable place for children and young people. We also work to promote positive views of health by supporting the creative lives of children and young people. We are exploring ideas of how teens living with chronic illness might like to use the internet and related technologies in positive, enjoyable and creative ways to connect with each other when in hospital and outside hospital. This might be through making music, making films, creative writing, creating games...and more! We are first focussing our consultation process on the needs of teens living with Cystic Fibrosis. If you are a young person aged 13 and older we’d like to hear from you. We are organising some ‘Ideas Days’ in the near future where you can spark your imagination and have your say about what you think an internet based, web portal for teens might look like. We imagine this project will start small and grow over time. We have a design team of artists who will be working in collaboration with a variety of professionals in health, youth work, and technology to realise this project. If you are interested in taking part, please contact Helene Hugel by emailing helene@helium.ie or phone 087 7809887. Helene is artistic director of Helium Arts and has been working with children and young people in hospital for many years. She is a theatre maker and animator and enjoys all things creative. More information on Helium Arts can be found here: www.helium.ie.
pSYCHOLOGY GROUP SEEKS YOUR INPUT European CF Conference Our CF patient Advocate Caroline Heffernan has been invited by the psychologists group to speak at their introductory meeting during the European CF Conference in Dublin this June. Caroline would like to hear from any of our members who would like to share their experiences or lack of experience, give their thoughts or views on how psychologists/ life coaches/psychiatrists benefit the CF community. All information will be kept in strict confidence. Please contact Caroline on 087 9323933 or email cheffernan@cfireland.ie 10
Mar/Apr 2012
Love Your Lungs Press Launch Held on the Eve of Valentines Day The launch of the ‘Love Your Lungs’ awareness campaign took place in February with the help of Ronnie Delany, one of Ireland’s greatest gold medal Olympians, to promote healthy lungs by highlighting symptoms of lung disease and the importance of early intervention. The Irish Lung Health Alliance, which comprises the Alpha One Foundation, the Irish Thoracic Society, the Cystic Fibrosis Association of Ireland, the Irish Lung Fibrosis Association, Ben Bulben COPD Support Group, the Irish Sleep Apnoea Trust, the Asthma Society of Ireland, the Irish Cancer Society, and the Irish Sarcoidosis Support Network, has united behind four simple messages:
Olympic Medalist, Ronnie Delany with CF Advocate Caroline Heffernan at the launch of ‘Love your Lungs’.
1. Lung disease can affect anyone regardless of age, health status and walk of life 2. Symptoms such as shortness of breath, cough and wheeze are not normal and should be checked with your GP 3. Lung disease is treatable – the earlier you treat the better 4. Keep lungs healthy – don’t smoke and stay active ‘Love your lungs week’ will run from 25th–29th June 2012 (including World Spirometry Day on 27th June 2012); and a new website, www.lunghealth.ie, offers helpful information and advice regarding common lung conditions as well as patient support and tips on how to keep your lungs healthy. Photograph courtesy of Andres Poveda Photography.
Carers & Young Carer of the Year Awards 2012 Nominations Sought by the Carers Association Throughout Ireland, Family Carers and Young Carers dedicate themselves to providing remarkable levels of care in the home to their loved ones. Once a year acknowledgement can be given through the Carers of the Year Awards. The Carers Association invites you to celebrate these carers, if you know a relative, neighbour or a friend who you think should be recognised and rewarded for the extraordinary levels of care they provide to a loved one then please nominate them by clicking on the link: www.carersireland.com/carersoftheyear2012.php Alternatively call Karen Phelan on 056 7753600/email kphelan@carersireland.com to request a nomination form in the post.
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Spectrum / Issue 26
mESSAGE FROM THE Care Alliance Ireland Upcoming Regional Carers Forum Meetings The Carers Association is about to embark on a significant consultation exercise with Family Carers throughout Ireland. Many Family Carers are feeling the brunt of cutbacks, reduced incomes and what appear to be more restrictive interpretations of income and home support eligibility criteria. The Carers Association are inviting Family Carers from all walks of life to take part in this initiative. Meetings are open to all Family Carers and will take place throughout late March/April. Details of meetings are included below: Date
Location
Monday 26th March Tuesday 27th March Friday 30th March Thurday 5th April Thursday 19th April TBC TBC
South Court Hotel, Limerick, 10.30am – 1.30pm Imperial Hotel, Cork, 10.30am – 1.30pm Aisling Hotel, Dublin, 10.30am – 1.30pm Annebrook Hotel, Mullingar, 10.30am – 1.30pm Sligo Southern Hotel, 10.30am – 1.30pm Dundalk Galway
We would encourage members to attend these meetings if possible to makes your voices heard. For queries contact Karen Phelan, The Carers Association, 056-7753600 email; kphelan@ carersireland.com
Snail Mail vs email Do you want to switch? If you are currently receiving post from us and would rather receive all future notifications by email, please get in touch! Sending information by email is a much more efficient and costeffective way for us to keep you up to date about all news and developments from within the CFAI. Spectrum is also sent by email every issue so if you are online regularly, perhaps you might consider switching to viewing this publication online. Please call us if you decide you would like to switch or, better still, email us at info@cfireland.ie.
nEW cFAI Website Final Design in Progress The CFAI have been working on a redesign and update of our website. With recent changes and progress made in the CFAI and CF services in Ireland, we feel that a new website is a good format to reflect the growth and progress that is being made among the CF community. We hope to obtain a good balance between the different services and fundraising events the CFAI provide while also giving clear and concise information to all our members and new visitors to our site. The final design is due to be unveiled in the upcoming weeks, we hope that it will be a seamless process and will cause the least amount of disruption as possible. We thank you all for your patience during this time. 12
Mar/Apr 2012
PHARMA NEWS
SECTION 03
PAGE 13
KALYDECO Still Under Review in Ireland Kalydeco™ is the trading name name for VX770 developed by pharmaceutical company Vertex. As previously reported, Kalydeco is a new prescription medicine used for the treatment of Cystic Fibrosis CF in patients age 6 years and older who have a certain alteration/mutation in their CF gene, called the G551D mutation and sometimes referred to as the ‘Cetlic gene alteration’ as it is more prevalent in Ireland than any other country in the world, particularly in SW Ireland. It is the first drug available that targets the underlying cause of CF — a faulty gene and its protein product, CFTR. Kalydeco was recently approved by the US Food and Drug Administration (FDA) for use in the United States, but is not yet approved for use in Ireland. It is currently under consideration. Kalydeco is not for use in people with CF with other alterations in the CF gene, for example, it is not effective in CF patients with two copies of the F508del mutation (F508del/F508del). However, Kalydeco is also being studied in an ongoing Phase 2 clinical trial in combination with VX-809, a potential CF therapy, in people with the Delta F508 mutation of CF. It is not known if Kalydeco is safe and effective in children under 6 years of age. Kalydeco can cause serious side effects. High liver enzymes in the blood have been reported in patients receiving Kalydeco. There is a formal process in Ireland through which new and existing technologies (medicines, diagnostics and devices) have to be submitted, including a cost-benefit analysis. CFAI will keep our members updated on the process to approve Kalydeco in Ireland and further developments in drugs and devices that are of interest to our members by different companies. More information on Kalydeco can be found on the CF Foundation website: www.cff.org/ treatments/Therapies/Kalydeco/
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Spectrum / Issue 26
ENTITLEMENTS
SECTION 04
PAGE 14
Over the next few issues of Spectrum we will be creating awareness about certain social welfare payments, allowances and tax reliefs that parents can avail of once they have a child with Cystic Fibrosis. You may not be entitled to all of them based on your income or source of income. A full list of entitlements for People With Cystic Fibrosis can be found in a booklet published by the CFAI and the Citizens information board. For this issue, we take a closer look at the Carer’s Benefit, which is administered and managed by the Department of Social Protection.
cARER’S Benefit Do you qualify? If you wish to leave work to care for your child you can apply for Carer’s Benefit. This is a payment made to insured persons (i.e., have paid stamps) in Ireland who leave the workforce to care for a person(s) in need of full-time care and attention. This payment is not based on means but on having paid stamps for a period of 104 weeks for each person being cared for. You can get Carer’s Benefit for a total period of 104 weeks (two years) for each person being cared for. This may be claimed as a single continuous period or in any number of separate periods up to a total of 104 weeks. However, if you claim Carer’s Benefit for less than six consecutive weeks in any given period you must wait for a further six weeks before you can claim Carer’s Benefit to care for the same person again. If you are caring for more than one person, you may receive payment for each care recipient for 104 weeks. This may result in the care periods overlapping or running concurrently. If you are receiving Carer’s Benefit you will qualify for the Respite Care Grant, which is an annual payment made to Carer’s by the Department of Social Protection. It is paid on the first Thursday in June of each year. Carer’s Benefit is different to the Carer’s Allowance as it is not means tested but rather based on stamps paid. If you have already applied for the Carer’s Allowance and been refused based on means but have the required stamps paid, you should consider applying for the Carer’s Benefit. If you have any questions you can find out more information on www.citizensinformation.ie or you contact CF House on LoCall 1890 311211.
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Mar/Apr 2012
PWCF SPOTLIGHT
SECTION 05
PAGE 15—17
Cystic Fibrosis doesn’t define who you are By Bevin Murphy, PWCF, 17 My name is Bevin Murphy and I am 17 years old. I am currently preparing for my Leaving Cert. I hope to go onto third level education and study Marketing in DCU. People would often say to me ‘how do you cope with the doing the Leaving Cert and having CF?’ My response is, I cope like any other Irish teenager doing the leaving cert. Yes, I do have a few obstacles as I miss numerous amounts of school, but with that bit of extra help it is extremely doable, be it coming in early the odd morning to go over what I have missed with the teachers or attending grinds. The advice I would give any other teenager doing their Leaving Cert is to arrange elective IV’s with your doctor for during your midterm so you don’t miss too much school. That’s if you’re like me and are in hospital on numerous occasions throughout the year. So far it has worked extremely well for me. I also sing in my school choir. Music is one of my many interests. I have participated in many choral competitions in Wales. I hear people say, how does she sing with ‘bad lungs’? My answer is, why can’t I sing with ‘bad lungs’. Singing is one of the best exercises to clear my lungs. I take all the medication I can to help my lungs and do exercise to make my lungs stronger. I would like to take this opportunity to encourage teenagers to exercise as it is the key to healthy lungs. I have learnt this from experience.
Bevin is 17 and is currently preparing for her Leaving Cert.
Living with CF has its challenges, like missing out on social events or school when sick. A major thing for me was telling people about my illness. Growing up I used to be embarrassed of what people may think. Over the years I have built the confidence to tell people as nobody thinks differently of me anyway. CF doesn’t define who you are, you as a person define yourself.
Bevin spoke alongside former President Mary McAleese at the recent opening of the new unit at Crumlin Hospital.
In the future, I would like to get my degree in marketing and travel to America or Australia. That is one of my dreams. I am also eager to raise awareness of CF throughout the world and speak on behalf of people with CF. I have found throughout the years that teenagers especially are unaware of what CF is and how it affects us. Nothing will hold me back from my dreams, not even having CF. As they say, ‘anything is possible if you just believe’. 15
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I may have cystic fibrosis but it will never have me! By Andy Lipman, PWCF, 38 My name is Andy Lipman. I am 38 years old and I am from Atlanta, Georgia in the United States of America. I was born with cystic fibrosis and lost a sister to the disease three years before my birth. In memory of my sister Wendy, we started a foundation called the Wish for Wendy Foundation which has raised $1.25 million for the Cystic Fibrosis Foundation in the United States. The foundation has events like fashion shows, softball tournaments and comedy nights in order to raise money for a cure. We also have many celebrities come out and have a huge silent auction. When I was younger, I was unaware that my life expectancy was to be in the teens. When I was a young boy, I read in an encyclopedia that people with CF don’t normally live to the age of 25. For a long time, I believed that cystic fibrosis would take my life at an early age too. I got so depressed dealing with the disease but I finally realised that life was worth living and that I couldn’t give up on my dreams. In 1997, I trained and ran my first 10km race. I have since run the biggest 10K event in the world fifteen years running. I also have competed in a triathlon. In 2000, I wrote my first book ‘Alive at 25: How I’m Beating Cystic Fibrosis’. I have since written two more books including my latest book ‘The Drive at 35: The Long Road to Beating Cystic Fibrosis’. The book has forewords from legendary musicians Celine Dion and Garth Brooks. The book is my memoir about trying to beat the disease that has tormented me from that September day in 1973 that I first graced this beautiful world.
Andy with his best friend and wife Andrea at the world famous Georgia Aquarium.
I always say ‘Live your Dreams and Love your Life’ In 2001, I ran with the Olympic Torch in Athens, Georgia. In 2006, I won a Community Service Award and spoke on the local NBC affiliate. In 2002, after dating for a couple of years, I married my best friend Andrea, who also has run with the Olympic Torch. Through In Vitro Fertilisation, she and I were able to have two beautiful children who do not have cystic fibrosis but who are however carriers of the disease. Avery is now six years old and Ethan is three. I am very fortunate to have these three wonderful people in my life.
Andy at home with his children Ethan and Avery.
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Today I work out very hard. I have lifted up to 300 pounds. I am currently doing the P90X workout routine. I do about three hours of treatments a day and take up to 40 pills. I
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work out six times a week, play softball, run and swim. I like to say that I may have cystic fibrosis but it will never have me! I continue to spread my message through speeches including trips to Washington, D.C., Virginia, Missouri and next at your Annual Conference in Wexford, Ireland. In 2011, I was named to the Georgia Cystic Fibrosis Foundation Board becoming the first cystic fibrosis patient to have this role in Georgia. I was also a nominee in 2011 for the University of Georgia’s 40 under 40. If you’d like to order my book, you can go to www. andylipman.com/books.cfm or you can contact me at andy@andylipman.com. You can also find my blog at http://thedriveat35.blogspot.com. Andrea and I are very excited to visit your beautiful country and I look forward to speaking to those of you who continue to fundraise so that one day CF stands for ‘Cure Found’.
Andy after finishing last year’s 10K road race.
I always say Live your dreams and love your life.
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GUEST FEATURE
SECTION 06
PAGE 18—19
Genetic Counselling and Newborn screening By Alana Ward, Genetic Counsellor, National Centre of Medical Genetics In July 2011 CF was included for the first time as an additional condition in the National Newborn Screening (NBS) programme, commonly know as the “heel-prick test”. To support this development a new Genetic Counsellor post was created. I started as the CF Genetic Counsellor in the National Centre for Medical Genetics, Our Lady’s Children’s Hospital Crumlin in October 2011 and we certainly have been busy over the past 6 months. We receive a referral for Genetic Counselling for the parents of each newborn baby who has been found to have CF or to carry a CF mutation. We aim to meet with families within 4-6 months of the referral and clinics take place in Dublin, Cork and Limerick. Appointments are given for an hour long consultation. We discuss how CF is inherited in a family. A family tree is taken which allows us to see which other relatives this may have implications for and to check if there are other genetic concerns within the wider family. For those parents whose newborn has been shown to have CF we realise that this is an incredibly hard time coping with all the upheaval of a newborn baby and a difficult diagnosis. On top of this is the realisation that any future pregnancies will also have an increased risk of CF. We offer genetic testing to confirm that each parent carries one of the CF mutations found in their child. If there are 2 different CF mutations in the family this also allows us to see which parent carries which CF mutation and therefore to offer accurate carrier testing to adult relatives. Some couples wish to discuss all possible reproductive options. We talk about testing which is available during a pregnancy called prenatal diagnosis. This is possible from 11 weeks of pregnancy and allows us to accurately determine if the baby has inherited both of the family CF mutations. This testing is available here in Ireland through a number of specialised obstetricians who are well experienced in carrying out these procedures. There is also an In Vitro Fertilisation procedure called Pre-implantation genetic diagnosis (PGD) which can determine if an embryo has inherited both of the family CF mutations and aims to establish a pregnancy with an unaffected embryo. This has traditionally only been available in the UK or other European countries and therefore it means a significant financial and time commitment. We have recently become aware of potential PGD services in Ireland but at this time they are still awaiting approval. For those parents whose newborn has been shown to carry one CF mutation but has a normal sweat test the family can be reassured that the child does not have CF. Carrier testing is offered to both parents. This allows us to work out which side of the family the CF mutation has been inherited from. Also this allows us to see if the other partner is a carrier too, as we know that 1 in 19 people in Ireland carry a CF mutation regardless of whether they have a family history. The couple can then be given their risk of having a child with CF in a future pregnancy.
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Frequently Asked Questions When should I tell my child they carry a CF alteration / mutation? As carrying one copy of a CF mutation does not affect a person’s health there is no need to rush into telling this to a small child. As the child grows up, however, it is important that they are made aware that they carry a CF mutation. If they are considering having children of their own their partner may wish to have CF carrier testing. This would allow them as a couple to find out their risk of having a child with CF. Genetic counselling may be useful at this time. Should my other children be tested to see if they also carry the CF mutation? Carrier testing is usually offered to family members from the age of 16 years. In this we are guided by international guidelines on genetic testing in children. There are no health concerns for those who carry a CF mutation but rather the implications are reproductive. When we offer carrier testing to family members there is such a wide variety of reactions. Some people immediately wish to go ahead and have testing. Others feel that they do not want to pursue this information. Therefore, we try to allow each person to choose for themselves whether or not to go ahead with testing. This is best done at an age when they can fully understand what the results will mean for them and their family. Should I pass this information on in the family? By the time some couples come to the genetic counselling clinic they have already talked to their wider family about the fact that they may have an increased risk of carrying a CF mutation. However, every family is different and some of us struggle to talk to family members about this. We try to encourage couples to have some communication with their parents, brothers, sisters and wider family so that they know they are at increased risk of carrying a CF mutation. We offer a family information letter which may help to do this and explains to relatives how they can go about arranging CF carrier testing and genetic counselling. For a person with CF, does knowing the specific CF mutation help us to know how severely that person will be affected? We know that CF can vary widely in how it affects each person. Even siblings with CF or other people with the same CF gene mutations can have very different symptoms. There are many different mutations, over 1500, which can occur in the CF gene. Whilst there have been ‘mild’ mutations found in the gene these are not screened for in the NBS test. Only ‘classical’ CF mutations which are known to cause the condition are included in the CF NBS test. This includes the most common Irish CF mutations and some which are more rarely found in the Irish population. However, just because a mutation is not found in lots of people with CF in Ireland does not mean that it is milder. Many of you reading this article will already have a child or children with CF or both you and your partner may have been shown to carry a CF mutation. For your family, definitive CF testing should be available immediately after the birth of any future children. This can happen alongside the CF NBS process. If you are considering a future pregnancy we would encourage you to discuss this with your CF team or Obstetrician. If you would like to get in touch or you need further information you can link into us on our website: www.genetics.ie
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EVENT FOCUS
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PAGE 20—21
Hang up your heels and run for cystic fibrosis! 1 in 1000 Update by Ciara Enright Our national fundraising campaign for Cystic Fibrosis hit the ground running on March 10th with a Flash Mob on Grafton Street, Dublin. Dancers from ‘Whynot Dance Company’ delighted shoppers whilst raising awareness for the 1 in 1000 campaign for Cystic Fibrosis. The campaign is a drive to recruit 1,000 women to run for CF on June 4th as part of the 30th anniversary of the Flora Women’s Mini-Marathon. Supporting this year’s campaign we have TV3 ‘Xpose’ presenter Karen Koster, ‘Rubberbandits/Republic of Telly’ Star Madeline Mulqueen and the current ‘Rose of Tralee’ Tara Talbot.
Supporting this years 1 in 1000 campaign are ‘Rose of Tralee’ Tara Talbot, TV3 ‘Xpose’ presenter Karen Koster, and ‘Rubberbandits/ Republic of Telly’ Star Madeline Mulqueen.
Founded in 2010 by Zoe Woodward and family, after the diagnosis of daughters Emily and Lana (now aged 5 and 4) the family wanted to do something for CF, together, who in turn rallied a group of 1000 women into doing something incredible. The 1 in 1000 campaign has risen over €400,000 for the Cystic Fibrosis Association of Ireland which saw the opening of a new 4 bed facility in Our Lady’s Children’s Hospital, Crumlin and the introduction of newborn CF screening and support services for parents of newly diagnosed children with CF. Our goal is to repeat once more this phenomenal success in 2012 by recruiting 1,000 women for the June event, with each participant raising at least €200 in sponsorship. The aim of the campaign is to raise much needed funds to provide new and additional isolation units for children and adults in Dublin, Drogheda, Castlebar and Limerick. 20
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Outlining her reasons for being 1 in 1000 on June 4th for CF, Karen Koster said “I’ve seen firsthand the devastating effects of Cystic Fibrosis so if I can help in any way, then what better way than to spend the June Bank Holiday Monday running the mini-marathon, now who’s jogging with me?” So Ladies, join Karen, Madeline and Tara on June 4th, your support will mean that people with CF can have centres with adequate facilities to avoid cross infection when they attend hospital. These services are not an option for better health, they are essential and they are needed now. So ladies, hang up your heels and join us in making a difference to the lives of adults and children with Cystic Fibrosis in Ireland.
Emily and Lana Woodward supporting 1 in 1000 with Madeline, Karen and Tara.
Registration for the Flora Women’s Mini-Marathon opened on February 22nd and closes April 20th (be warned – registration is filling up fast, so make sure to sign up ASAP before the Flora Women’s Mini Marathon cut off point). For more information: Call 1890 311 211 or email Ciara at runningforcf@cfireland.ie.
Dancers from ‘Whynot Dance Company’ who helped promote 1 in 1000 by doing a Flash Mob on Grafton St, Dublin on March 10th.
‘Whynot Dance Company’ members striking a pose.
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FUNDRAISING
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PAGE 22—25
Fundraising continues to be a busy area of the organisation. Many events, some listed below, are in train, with new ones being constantly added. As fundraising is the lifeblood of the organisation’s ability to provide a wide range of services, all volunteering efforts are most welcome and much appreciated. Indeed, many thanks are due to all of our volunteers who have kept us going through recent tough economic times. We would also like to take this opportunity to extend a warm welcome to Rosie Begley on the Fundraising team (see profile in Latest News section).
Challenge events Upcoming Events Lanzarote Iron Man Challenge The Manx Team, a team of eight CF supporters from the Isle of Man, UK and Ireland are participating in the Lanzarote Ironman Challenge in May to raise funds for CF Research in Ireland, UK and Canada. We wish them well in this most gruelling of challenges New York Marathon 2012 Places for the New York City Marathon 2012 are going fast! Get in touch with us if you would like to reserve a place. It certainly is the experience of a lifetime whether you are an experienced runner or not, Martin will be glad to tell you why! The package will be the same as every year: each fundraiser will need to raise €5,000 to cover flights, accommodation, race entry, fundraising target, and an unforgettable experience in this most prestigious event. Ireland To Everest – 32 Steps for CF The Ireland to Everest Team continues to raise funds and full details of Cian’s Mount Everest attempt are available at: http://irelandtoeverest.com/32-steps-for-cf/ For any further info you can also contact Cian at 086 8882879 Poland Walk 2012 We still have places available for our Paddy Kierans Memorial Walk 2012. The exciting location is Krakow and Zakopane: a destination reachable with a short flight but that will no doubt be an unforgettable experience. Each walker is requested to fundraise €2,560 (Single supplement applies on request €260) for an unforgettable trip in the Polish culture. For information please contact Rosie in CF House at 01 4962433 or one of the Committee members: Bernie 087 2353319; Julia 087 9911331; Frank 086 6060261 or Tony 086 25112731. 22
Very well done to Mark Duggan who took part in the XVIII Rome Marathon 2012 on March 18th on behalf of the CFAI.
Mar/Apr 2012
Community events On Nationwide Monster Raffle and Skydive Organised by Theresa Donnelly, CF parent, from Clane in Co. Kildare has raised much needed funds for CF services. Further details to follow when raffle is held. Spar Great Ireland Run Sunday 15th April, Phoenix Park Entries are still open and why not join the CF group and fundraise for CF. Full details from Eufemia/Rosie or at www.greatirelandrun.org/Events/2012/Default.aspx Biking for CF John Travers, from BOC Gases, known to many CF families, is the main organiser of this motorcycle run taking place on Sunday 8th April in Laois area. Bikers can enter on the day. Contact John at 086 8270966. Westpark Fitness Club Well done to all who took part in this event on Saturday 10th March, and a big thank-you to Alison for organising and managing the event on our behalf for the last number of years. The Bell (Blanchardstown) Dublin to Cork Cycle Barry Horgan, CF parent and owner of the above establishment, is in the process of organising this challenge event in August. More details to follow. Barry and his wife, Rebecca, have been instrumental in raising considerable funds for CF iover the last two years. Dart Exhibition Eric Bristow, 5 times World Darts Champion, took on allcomers on the night in the Brookwood Inn in Blanchardstown, on Sunday 12th February. Interestingly, he didn’t get it all his own way, being beaten by a number of the locals, but now and again a flash of the old Bristow came to the fore, scoring a few 180’s. Almost €200 was raised for CF and many thanks to Steve Butler, Manager, and Nicole Parker, CF Parent, for your efforts in arranging the event.
Cheque Presentations Acknowledgement and Thanks National College of Ireland A group of students from NCI raised €1,000 for each of 10 chosen charities through the sale of Christmas Cards. Elaine Coburn, CF Parent, was the CF mentor in this instance. Dubco, (Dublin Corporation Credit Union) CFAI received a donation of €1,000 from Dubco. Donna Griffin Donna, PWCF, an employee in the Property Registration Office, held a fundraising raffle in her office and raised €1,485 for CF. Many thanks to Donna, who had only completed a spell in Beaumont Hospital at the time.
Picture above shows Rosie Begley, Fundraising Coordinator (in centre) accepting the cheque from the students’ committee of the NCI.
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Picture shows Martin Gallagher, father-in-law of Paul Wynne, PWCF, with Nicola from Dubco, presenting the cheque to Rosie Begley, Fundraising Co-ordinator CFAI.
Donna Griffin and colleagues presenting the cheque to Martin Cahill, CFAI.
Isolde McCullagh A reception was recently held for that fantastic lady Isolde McCullagh, who at 92 years of age, raised more than €28,000 for CF over a two year period through her contact with the League of Fitness and the sale of her book, “Never Too Late” a book on exercise. Professor Risteard Mulcahy, eminent cardiologist, addressed the assembly, speaking of his long association with Isolde and their common bond of the necessity for fitness and exercise as essential elements of prevention of heart disease. Professor Risteard, at 88 years young, still cycles regularly. Philip Watt, CEO CFAI, spoke of Isolde’s contribution to feminism by encouraging women of all classes and creeds to participate in exercise classes at a time when society discouraged it. Isolde’s insistent use of Christian names only by attendess helped to ensure no class boundaries were evident in her training groups.
Picture shows Rosie presenting flowers to Isolde with Martin, Philip and Prof Risteeard Mulcahy looking on.
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Martin Cahill paid tribute to Isolde’s persistence in fundraising, meticulous attention to the task on hand, and as all speakers echoed, what an inspiration it is to work with someone of such character and determination, who certainly did not let the aging process deter her. Isolde was heard to comment ‘I have a lot to do yet!’ Midlands Branch Jillian McNulty, PWCF, made a presentation to the Midlands Branch as a result of her fundraising event carried out in Longford in December 2011. Also present at the presentation were Pat Gallagher, Chairman, Amanda Barrett, Secretary and Nicki O’Neill, Treasurer who were all elected at the recent Branch Meeting held in Mullingar on 10th March 2012.
Jillian McNulty, Pat Gallagher, Chairman, Amanda Barrett, Secretary, and Nicki O’Neill, Treasurer, of the Midlands Branch.
West of Ireland Womens Mini-Marathon Launched on May 6th CF Volunteers pictured in Áras an Chontae, Castlebar at the launch of the Western People West of Ireland Womens Mini Marathon, which takes place in Castlebar Sunday 6th May.
L-R: Edel Fahey, supporting Cystic Fibrosis West; Mr Michael Ring, Minister for Tourism and Sport who performed the launch; and Caroline Heffernan, Cystic Fibrosis Patient Advocate. Photo: © Michael Donnelly Photography.
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About the Cystic Fibrosis Association of Ireland (CFAI) The CFAI is a registered charity CHY 6350 that was set up by parents in 1963 to improve the treatment and facilities for people with CF in Ireland. It is a national organisation with many Branches around the country. The CFAI is committed to working to improve CF services in Ireland and our recent progress includes: ● Lobbying to ensure that the new national adult CF centre in St Vincent’s University Hospital will be completed ● Providing funding towards new CF Units around the country including Crumlin, Drogheda, Galway, Mayo and Limerick Hospitals ● Funding research in Cork University Hospital, St Vincent’s University Hospital and University College Dublin ● Campaigning to improve the rate of double lung transplantation in Ireland ● Providing advice and expertise
ISSN ISSN2009-4132 2009-4132 ISSN 2009-4132
Cystic Fibrosis Association of Ireland t: +353 1 496 2433 CF House f: +353 1 496 2201 24 Lower Rathmines Road e: info@cfireland.ie Dublin 6 w: www.cfireland.ie Ireland Company Reg: 449954 26 Charity: CHY6350