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Welcome

Volume 2, Issue 2 May/June 2013

Dear all,

T

his is always a special time of the year for Cystic Fibrosis in Ireland as it is the ‘65 Roses’ National Awareness Week from the 12th— 19th of April with a lot of national events happening throughout the country during April/May. This is a wonderful opportunity to raise awareness and to get the public talking about Cystic Fibrosis! It is a great opportunity to organise your very own ‘65 Roses’ fundraising event! We are heading into a very busy fundraising time for TLC4CF with numerous events taking place in the coming months. So make sure to get involved in raising much needed funds for our capital project. If you would like to get involved contact Katie on 087-1954213 or email katie@tlc4cf.com. We have had a positive few months with many people reporting positive experiences during routine appointments, however some issues are still popping up —such as segregation, missed appointments and hygiene. We are continually ensuring that all issues are brought to the attention of hospital management and will continue to represent our members at this level. If you have anything you want brought up at our next meeting please let Katie know or your local TLC4CF representative.

In this Issue ‘For the Roses’

Up-coming Events Fundraising Event Focus Hospital Up-date

Cystic Fibrosis Ireland, 50 years young!! CF Ireland was founded in 1963 by two young women and mothers, Anne O’Dwyer and Bridie Maguire. The fought relentlessly to secure basic services for children with Cystic Fibrosis. It is truly an inspirational story of how two young mothers took on the government to ensure children with CF and their families were recognised and given the support and services they deserved. To celebrate this important occasion—Philip Watt (CEO of CF Ireland) has written a book ‘For the Roses’ which outlines the progress of the association and highlights how far we have come over the past 50 years. The story of the development of CF services in the Mid-West is captured by the wonderful words of Dr Michael O’Mahony and TLC4CF’s Katie Murphy has also made a contribution to the book. If you would like to purchase this walk through history of CF Ireland and its’ members visit www.cfireland.ie and purchase your copy today for €15—thanks to the generosity of Novartis 100% of proceeds for this book will contribute to developing CF services nationally.

Katie Murphy pictured here with the founders of CF Ireland—Bridie Maguire & Anne O’Dwyer at the launch of ‘For the Roses’


Fundraising TLC4CF Fundraising aims Our fundraising target for 2013 is €150,000 (Financial

for 2013

year from Dec 2012—Dec 2013). So far in 2013 we have raised a wonderful €71,290.61, so we are just under half way to our target which is fantastic!! We are still fundraising to get our capital project across the finish line—so help to make a difference in improving the quality of services available for people with Cystic Fibrosis living in the Mid-West and GET INVOLVED today!

A look back over the past two months...

The Limerick Rose, 2013—Chloe Heslin shows her support for TLC4CF during this year’s National Awareness Week

Eamonn ‘Stapo’ Stapleton completing the 42km Marathon at the Great Limerick Run 2013!

Darren Hayes & Liam Cleary are preparing for the adventure of a lifetime—jet skiing from Ireland to France in aid of TLC4CF, William Winder Rainbow Foundation and Burren search & rescue :)

Spotted at the Great Limerick Run is Conor O’Donoghue of the Limerick Branch and long time TLC4CF supporter!! Go Conor!!!

Laura-Jane & Dylan Nealon fundraising during National Awareness Week in aid of TLC4CF in Garvey’s of Listowel!!

Girl power during National Awareness Week—Aine Connolly, Chloe Heslin and Katie Murphy collecting in aid of TLC4CF at the Crescent Shopping Centre


Event Focus

TLC4CF’s Adare Golf Classic The bi-annual TLC4CF Golf Classic is back and taking place this Summer!!! Date: 7th June 2013 Location: Adare Manor Golf Course (old course) Entry fee: €250 for a team of four Sponsor a tee box from only €50!! Places are limited and filling up quickly so if you would like to enter a team contact Liam O’Kelly on 086 2675963 today!!

Sunday 2nd June Race starts at 12pm €10 registration fee 100% of the proceeds go to TLC4CF This event is being run as part of the Foynes Festival so why not make a family day out of it and stay for refreshments, BBQ, Ceili dancing, Food & Craft Fair and lots more entertainment!! For more information on the festival visit: www.foynesfestival.com


Hospital Up-Date & A.O.B and organisation of this wonderful evening! We will hold similar nights in the coming year so watch this Chloe Heslin, a Limerick native is space!! The clips of these info nights 2013’s Limerick Rose who will be will be available on our new website competing for a place in the dome at once it is up and running in the comthe Portlaois Regional Finals on the ing weeks. June Bank Holiday weekend! Chloe Church-gate collections has a keen interest in getting involved with TLC4CF and has already The Limerick branch have been shown her support through volunworking hard to secure Garda Perteering during National Awareness mits to carry out some church gate Week. We wish Chloe the very best collections around the county. If you of luck and look forward to working would like to do a collection in your with her throughout the year! local area get in touch with Katie and

Limerick Rose is TLC4CF Ambassador for 2013

members of the CF team to a training course in Brompton Hospital, London. This course is a wonderful opportunity for health care professionals to get an up-date on new/ developing techniques in multidisciplinary CF care.

We are also delighted to announce that the equipment which we have mentioned in previous editions of the newsletter have all arrived at the MWRH and should be ready for use once the routine commissioning and training associated with all new equipment are completed. These we will arrange a permit for your "I am delighted include: The Exhalyzer D—a paediatcollection and help out in any way to be involved ric PFT machine that allows lung possible. with TLC4CF for function to be measured from a very the coming year. Congratulations Ger Ryan young age. It is a fantastic And also the MasterScreen PFT for Tipperary man Ger Ryan has successorganisation and the adult service which is a very reliful completed the Tralee Fullgreat work is able lung function system which acMarathon in aid of TLC4CF and being carried out curately measures the diffusing caraised in excess of €3,000. We would to improve the pacity and lung volumes during the like to congratulate Ger on his wonlives of people with Cystic Fibrosis same rebreathing test manoeuvre to derful achievement and thank him throughout the Mid West. The new provide clinicians with an assessmost sincerely for choosing TLC4CF adult Cystic Fibrosis unit in the Rement of lung diffusion during resting to benefit from his hard work! gional Hospital will be a fabulous breathing. This is a very good measdevelopment and I am looking forure of a patients overall fitness, as Building Up-date ward to fundraising and raising opposed to simply measuring the After a lot of set backs over the past awareness for the association for the FEV1. few months we are delighted to tell next year." says Chloe. This piece was funded primarily by you all that the builders are back on- the Soroptimist funds, the Colleran Successful Information site and we are seeing progress!! family (Clare Branch) and TLC4CF. Keep an eye on building area during Evening Your TLC4CF Committee your visits to the Mid-Western ReOn February 28th the CF specialist gional Hospital and watch the proTipperary Representative: team held an information evening in gress!! Caitriona Hayes: 087-9584843 partnership with TLC4CF. The night Limerick Representative: was a great success with a great turn Hospital Up-date up on the night, as well as a strong Owen Kirby: 087-9679176 TLC4CF work to ensure that the best presence watching online. We would Liam O’Kelly: 086-2675963 services are available for PWCF like to take this opportunity to thank attending Limerick Hospital. We will Clare Representatives: the staff at MWRH for the time and Linda Drennan: 087-2255650 be providing funding to send two effort that went into the planning Marcella Clancy: 086-8390942


TLC4CF Newsletter May-June 2013