Volume 2, Issue 2

April/May 2013 Welcome

Dear all,

T his is always a special time of

the year for Cystic Fibrosis in

Ireland as it is the ‘65 Roses’ Nation-

al 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 talk-

ing 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 appoint-

ments, 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 generosi-

ty of Novartis 100% of proceeds for this book will contribute to developing CF ser-

vices nationally.

Katie Murphy pictured here with the founders of

CF Ireland—Bridie Maguire & Anne O’Dwyer at

the launch of ‘For the Roses’

Fundraising

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

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 Fi-

brosis living in the Mid-West and GET INVOLVED today!

TLC4CF Fundraising aims

for 2013

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

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 :)

Laura-Jane & Dylan Nealon fundraising during

National Awareness Week in aid of TLC4CF in

Garvey’s of Listowel!!

Eamonn ‘Stapo’ Stapleton

completing the 42km Marathon

at the Great Limerick Run 2013!

Spotted at the Great Limerick Run is Conor

O’Donoghue of the Limerick Branch and long time

TLC4CF supporter!! Go Conor!!!

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 Limerick Rose is TLC4CF Am-

bassador for 2013

Chloe Heslin, a Limerick native is

2013’s Limerick Rose who will be

competing for a place in the dome at

the Portlaois Regional Finals on the

June Bank Holiday weekend! Chloe

has a keen interest in getting in-

volved with TLC4CF and has already

shown her support through volun-

teering during National Awareness

Week. We wish Chloe the very best

of luck and look forward to working

with her throughout the year!

"I am delighted

to be involved

with TLC4CF for

the coming year.

It is a fantastic

organisation and

great work is

being carried out

to improve the

lives of people with Cystic Fibrosis

throughout the Mid West. The new

adult Cystic Fibrosis unit in the Re-

gional Hospital will be a fabulous

development and I am looking for-

ward to fundraising and raising

awareness for the association for the

next year." says Chloe.

Successful Information

Evening

On February 28th the CF specialist

team held an information evening in

partnership with TLC4CF. The night

was a great success with a great turn

up on the night, as well as a strong

presence watching online. We would

like to take this opportunity to thank

the staff at MWRH for the time and

effort that went into the planning

and organisation of this wonderful

evening! We will hold similar nights

in the coming year so watch this

space!! The clips of these info nights

will be available on our new website

once it is up and running in the com-

ing weeks.

Church-gate collections

The Limerick branch have been

working hard to secure Garda Per-

mits to carry out some church gate

collections around the county. If you

would like to do a collection in your

local area get in touch with Katie and

we will arrange a permit for your

collection and help out in any way

possible.

Congratulations Ger Ryan

Tipperary man Ger Ryan has success-

ful completed the Tralee Full-

Marathon in aid of TLC4CF and

raised in excess of €3,000. We would

like to congratulate Ger on his won-

derful achievement and thank him

most sincerely for choosing TLC4CF

to benefit from his hard work!

Building Up-date

After a lot of set backs over the past

few months we are delighted to tell

you all that the builders are back on-

site and we are seeing progress!!

Keep an eye on building area during

your visits to the Mid-Western Re-

gional Hospital and watch the pro-

gress!!

Hospital Up-date

TLC4CF work to ensure that the best

services are available for PWCF

attending Limerick Hospital. We will

be providing funding to send two

members of the CF team to a train-

ing course in Brompton Hospital,

London. This course is a wonderful

opportunity for health care profes-

sionals to get an up-date on new/

developing techniques in multidisci-

plinary 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

include: The Exhalyzer D—a paediat-

ric PFT machine that allows lung

function to be measured from a very

young age.

And also the MasterScreen PFT for

the adult service which is a very reli-

able lung function system which ac-

curately measures the diffusing ca-

pacity and lung volumes during the

same rebreathing test manoeuvre to

provide clinicians with an assess-

ment of lung diffusion during resting

breathing. This is a very good meas-

ure of a patients overall fitness, as

opposed to simply measuring the

FEV1.

This piece was funded primarily by

the Soroptimist funds, the Colleran

family (Clare Branch) and TLC4CF.

Your TLC4CF Committee

Tipperary Representative:

Caitriona Hayes: 087-9584843

Limerick Representative:

Owen Kirby: 087-9679176

Liam O’Kelly: 086-2675963

Clare Representatives:

Linda Drennan: 087-2255650

Marcella Clancy: 086-8390942