Volume 2, Issue 1 Jan/Feb2013 Welcome Dear all, TLC4CF would like to wish you all a very happy new year—may 2013 be a healthy, joyous & peaceful year for all. TLC4CF have a busy year ahead of us for 2013 with the connuaon of the construcon of our capital project, excing fundraising events, develop- ment of a new TLC4CF website, & ex- cing developments of the services provided by TLC4CF. We would like to remind you all that we are always thrilled to welcome new members to get involved in TLC4CF and our local branches. For more infor- maon contact Kae on 087 1954213/ [email protected]. 2013 is a special year for the Cysc Fibrosis Associaon of Ireland and all of the Branches and regional support- ers as it is 50 years since CFAI first be- gan it’s journey to have a posive im- pact on CF in Ireland—a vision which has well and truly been achieved! There will be celebratory events on throughout the year so we urge every- one to get involved and celebrate the advances made in CF over the past 50 years! So let’s work together to ensure 2013 is a successful & fun year for TLC4CF and of course connue to work to im- prove the quality of services and lives of people with CF living in the Mid- West of Ireland. In this Issue 50th Anniversary of the CF Ireland A look back over 2012 Up-coming Events Building Up-date MWRH Informaon Evening Event Focus Kalydeco approved for use in Ireland!! Aſter a tense week of negoaons be- tween the HSE & Vertex Pharmaceucals Kalydeco—the first drug which addresses the underlying cause of Cysc Fibrosis— has been approved for use in Ireland. This break-through drug works for 10% of the CF populaon in Ireland (20% of those living in the South of Ireland), those who carry the ‘Celc gene’ G551D. From the 1st of March 2013 clinicians can prescribe the drug for Cysc Fibrosis paents over the age of 6. Cysc Fibrosis Ireland & supporters have worked extremely hard to ensure this drug was made available to all eligible paents and are thrilled that a posive decision has been made so quickly. We will be keeping a keen eye on the de- velopments of the new combinaon drug trials which are working on the F508DEL gene mutaon. Visit www.cfireland.ie for up-dates on this topic. Information Evening being held by the MWRH On February the 28th in the Castletroy Park Hotel at 8pm. The evening is being organised and run by the Cysc Fibrosis team at the Mid-Western Regional Hospi- tal, Limerick and promises to be an even- ing filled with praccal and useful infor- maon. Due to strict cross-infecon policies at the MWRH, people with CF are not permied to aend. However, TLC4CF will be provid- ing a live streaming service so that every- one can watch the talks online, which will be streamed live at www.cfireland.ie Topics being discussed: Entlements & supports—Ms. Lindsey Mallon Principles of nebulising medica- on—Dr Brian Casserly Praccalies of nebulisers—Ms. Louise Collins & Ms Louise Galvin Keeping your nebuliser clean— infecon control The role of Psychology in Cysc Fibrosis care - Ms Sorcha Connellan This evening is a wonderful opportunity for parents and partners to learn some praccal ps—and if people watching at home have any quesons please text them to Kae on 087 1954213 on the night & I will ask them on your behalf. Kalydeco is one pill taken twice a day for the rest of your life
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