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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 continuation of the construction of our capital project, exciting fundraising events, development of a new TLC4CF website, & exciting 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 information contact Katie on 087 1954213/ katie@tlc4cf.com. 2013 is a special year for the Cystic Fibrosis Association of Ireland and all of the Branches and regional supporters as it is 50 years since CFAI first began it’s journey to have a positive impact 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 everyone 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 continue to work to improve the quality of services and lives of people with CF living in the MidWest of Ireland.

Kalydeco approved for use in

Information Evening being

Ireland!!

held by the MWRH

After a tense week of negotiations between the HSE & Vertex Pharmaceuticals Kalydeco—the first drug which addresses the underlying cause of Cystic Fibrosis— has been approved for use in Ireland. This break-through drug works for 10% of the CF population in Ireland (20% of those living in the South of Ireland), those who carry the ‘Celtic gene’ G551D. From the 1st of March 2013 clinicians can prescribe the drug for Cystic Fibrosis patients over the age of 6.

On February the 28th in the Castletroy Park Hotel at 8pm. The evening is being organised and run by the Cystic Fibrosis team at the Mid-Western Regional Hospital, Limerick and promises to be an evening filled with practical and useful information.

Cystic Fibrosis Ireland & supporters have worked extremely hard to ensure this drug was made available to all eligible patients and are thrilled that a positive decision has been made so quickly. We will be keeping a keen eye on the developments of the new combination drug trials which are working on the F508DEL gene mutation. Visit www.cfireland.ie for up-dates on this topic.

In this Issue 50th Anniversary of the CF Ireland A look back over 2012 Up-coming Events Building Up-date MWRH Information Evening Event Focus

Kalydeco is one pill taken twice a day for the rest of your life

Due to strict cross-infection policies at the MWRH, people with CF are not permitted to attend. However, TLC4CF will be providing a live streaming service so that everyone can watch the talks online, which will be streamed live at www.cfireland.ie Topics being discussed: 

Entitlements & supports—Ms. Lindsey Mallon

Principles of nebulising medication—Dr Brian Casserly

Practicalities of nebulisers—Ms. Louise Collins & Ms Louise Galvin

Keeping your nebuliser clean— infection control

The role of Psychology in Cystic Fibrosis care - Ms Sorcha Connellan

This evening is a wonderful opportunity for parents and partners to learn some practical tips—and if people watching at home have any questions please text them to Katie on 087 1954213 on the night & I will ask them on your behalf.


Fundraising in 2012

2

012 was a wonderful year for fundraising for TLC4CF—with some of our most successful events to date taking place! Our target for

2012 was €200,000 and we are delighted to tell you all that at the end of the 2012 financial year (Dec 2011—Nov 2012), we had an income of €262,062 We cannot thank everyone who supported TLC4CF enough for your continued support and hard work—we hope you will all come on board again in 2013 :) We hope to replicate our successes of 2012 in 2013 and have some wonderful events planned already for the first half of the year (see event focus). If you are planning a fundraiser in 2013 or would like to chat to someone about your ideas, please contact Katie or your local TLC4CF representative and we will all work together to make your event as successful as possible.

A quick look over the past 12 months

Mary Hennessy (PWCF) with her family receiving a cheque for €517.15 on behalf of TLC4CF from the committee of Cappagh Christmas Experience

The Sod is Officially turned on TLC4CF’s capital project—construction of a new adult CF unit!

Kilcooley estate, Co. Tipperary sponsored ride in aid TLC4CF which raised an amazing €9,000!!! Huge thanks to all involved—especially Mr. Seamus Kelly

TLC4CF are presented with a cheque for over €13,000 from the Aherlow House Hotel’s ‘Moonlight Walk’ Fundraiser

TLC4CF’s first ever Relay Marathon which was completed in 3hrs 43 mins & 19 secs North Tipperary Foxhounds held a sponsored horse ride in Ballycommon in aid of TLC4CF

Croagh Patrick Climb in aid of TLC4CF & IAA which raised a total of €90,000 The Annual North Clare Charity Cycle a great success with approx. 350 cyclists taking part on the day


Event Focus The Tournafulla 5km Road Race & Non-Competitive Walk The Tournafulla 5km road race will take place on Easter Sunday the 31st of March in Tournafulla, Co. Limerick in aid of TLC4CF & The Dialysis Unit at the Mid-Western Regional Hospital, Limerick. Walk starts at 12:30pm, Run starts 13:00pm Registration €10 for runners, €5 for walkers Register on the day in the Community Hall from 11:30am until 12:45pm Parking and Changing area available. Prizes for Male & Female 1st 2nd & 3rd overall and 1st over 40,50 and first U18. AAI Permit. Course measured with Jones Counter.

The Great Limerick Run Sunday the 5th May, 2013 The ever popular Great Limerick Run is back and it’s BIGGER than ever!!! One of Limerick City’s most successful events of the year is back and we’re hoping some of you will complete this event in aid of TLC4CF!! This is a highly inclusive event, with various options to suit your fitness level—from the young to senior citizens, competitive athletes to occasional runners or walkers the GLR team will help you cross the finish line in your TLC4CF t-shirt!! Here are the options for taking part in this year’s event: Marathon—26.2miles/42km Half-Marathon— 13.1miles/21km Relay Marathon—Teams of 4 complete 6.5miles each 6miles Kids Dash—2 mile (8/12 yrs) and 1km (4/7 yrs) For more information or to register for one these great events visit www.greatlimerickrun.com & once you have signed up you can email katie@tlc4cf.com and we will send you out a TLC4CF fundraising pack.


Hospital Up-Date & A.O.B of PWCF and families in the region in our newsletter. If you have a story or a photo that you would like to inProgress on the building at the hospi- clude in the next issue of the newstal has been very slow over the letter send your information to Katie. Christmas period. For various reaAlternatively if you have an upsons the contractor has not been on- coming event be sure to get in touch site since prior to Christmas however with TLC4CF to receive your fundraisafter recent project meetings they ing pack and we can advertise your have outlined that they will be back event here and on our social media! on site week commencing 4th of Feb50 Years of Cystic Fibrosis ruary. The committee of TLC4CF met with hospital management last week Ireland—time for a facelift! to review details of staffing and “As part of 50th year we are shortenequipment for the new units which is ing our name to Cystic Fibrosis Irea good development. It is anticipated land (CFI) and we have refreshed the that a more positive update on the logo, while still retaining our well building itself will be available in our known kite sign. This will be welnext edition. comed by everyone who has tried to put our full TLC4CF Golf Classic name on a tThe bi-annual TLC4CF Golf Classic will shirt” Philip be taking place on the 7th of June Watt (CEO of 2013. The event will be held in Adare CF Ireland). Manor Golf Course (old course) and there will be an entry fee of €250 for a team of four. Places are limited and CF Ireland 50th Anniverfill up quickly so if you would like to sary—Remembrance & enter a team contact Liam O’Kelly on Thanks Giving Service 086 2675963. We won’t find the time passing so make sure and pencil in Cystic Fibrosis Ireland would like to this important date today!! invite you to reflect and celebrate on

Hospital Building Up-Date— What is Happening??

TLC4CF Website TLC4CF are currently up-dating their website and are hoping the new site will be up and running by the end of February 2013!! Once it is fully functional we hope you will all log in and make full use of this communication method!

Make a contribution to the TLC4CF Newsletter TLC4CF would love to include stories

our members and friends, both past and present, a chance to remember and to thank everyone for all their work over the past 50 years. Date: Saturday, 23rd February 2013 @ 11.45am Venue: Mary Immaculate Church, Rathmines, Dublin 6 Music: Dublin Gospel Choir, service will be followed by a light lunch in the near by Hilton Hotel. Please RSVP all people attending by contacting Suzie on info@cfireland.ie

or 01-4962433 Please note: The CF Ireland Cross Infection Guidelines will apply to all people with CF (PWCF) attending. For people unable to attend the service will be show on www.cfireland.ie For people requiring special assistance or wheelchair access please contact the office directly and special parking spaces will be arranged.

The mid-west is taking part in the 50th anniversary celebrations As part of CF Ireland’s 50th year, Katie Murphy and Philip Watt are writing a booklet which will outline the history of this region’s participation in all things CF!! We would love if anyone who has photo’s, stories, articles, information or anything which could contribute to such a project to get in touch with Katie on 087 1954213 or email katie@tlc4cf.com. Likewise we would love to hear from people involved in more recent developments also. Looking forward to delving into the history of our region.

Your TLC4CF Committee Tipperary Representative: Caitriona Hayes : 087-9584843

Limerick Representatives: Owen Kirby : 087-9679176 Liam O’Kelly: 086-2675963

Clare Representatives: Linda Drennan: 087-2255650 Marcella Clancy: 086-8390942 Follow us on Facebook and Twitter: @tlc4cf

TLC4CF Newsletter Jan-Feb 2013  

TLC4CF Newsletter Jan-Feb 2013

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