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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 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 & supportsMs. Lindsey Mallon Principles of nebulising medica- onDr Brian Casserly Praccalies of nebulisersMs. Louise Collins & Ms Louise Galvin Keeping your nebuliser cleaninfecon 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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TLC4CF Newsletter Jan/Feb 2013

Mar 28, 2016

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Page 1: TLC4CF Newsletter Jan/Feb 2013

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, develop-

ment of a new TLC4CF website, & ex-

citing 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-

mation contact Katie on 087 1954213/

[email protected].

2013 is a special year for the Cystic

Fibrosis Association 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 positive 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 continue 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 Information Evening

Event Focus

Kalydeco approved for use in

Ireland!!

After a tense week of negotiations be-

tween 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.

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 de-

velopments of the new combination drug

trials which are working on the F508DEL

gene mutation.

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 Cystic Fibrosis

team at the Mid-Western Regional Hospi-

tal, Limerick and promises to be an even-

ing filled with practical and useful infor-

mation.

Due to strict cross-infection policies at the

MWRH, people with CF are not permitted

to attend. 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:

Entitlements & supports—Ms.

Lindsey Mallon

Principles of nebulising medica-

tion—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.

Kalydeco is one pill taken twice a day for

the rest of your life

Page 2: TLC4CF Newsletter Jan/Feb 2013

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 won-

derful 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 suc-

cessful as possible.

Mary Hennessy (PWCF) with her family receiving a

cheque for €517.15 on behalf of TLC4CF from the

committee of Cappagh Christmas Experience

A quick look over the past 12 months

Kilcooley estate, Co. Tipperary sponsored ride in aid

TLC4CF which raised an amazing €9,000!!! Huge

thanks to all involved—especially Mr. Seamus Kelly

The Sod is Officially turned on TLC4CF’s capital

project—construction of a new adult CF unit! TLC4CF’s first ever Relay Marathon which was com-

pleted in 3hrs 43 mins & 19 secs

TLC4CF are presented with a

cheque for over €13,000 from the

Aherlow House Hotel’s ‘Moonlight

Walk’ Fundraiser

North Tipperary Foxhounds held a

sponsored horse ride in Ballycommon

in aid of TLC4CF

The Annual North Clare Charity Cycle a great success with approx. 350 cyclists taking part on the day

Croagh Patrick Climb in aid of TLC4CF &

IAA which raised a total of €90,000

Page 3: TLC4CF Newsletter Jan/Feb 2013

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 success-

ful 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 [email protected] and we will send you out a TLC4CF fundraising pack.

Page 4: TLC4CF Newsletter Jan/Feb 2013

Hospital Up-Date & A.O.B

Hospital Building Up-Date—

What is Happening??

Progress on the building at the hospi-

tal has been very slow over the

Christmas period. For various rea-

sons the contractor has not been on-

site since prior to Christmas however

after recent project meetings they

have outlined that they will be back

on site week commencing 4th of Feb-

ruary. The committee of TLC4CF met

with hospital management last week

to review details of staffing and

equipment for the new units which is

a good development. It is anticipated

that a more positive update on the

building itself will be available in our

next edition.

TLC4CF Golf Classic

The bi-annual TLC4CF Golf Classic will

be taking place on the 7th of June

2013. The event will be held in Adare

Manor Golf Course (old course) and

there will be an entry fee of €250 for

a team of four. Places are limited and

fill up quickly so if you would like to

enter a team contact Liam O’Kelly on

086 2675963. We won’t find the time

passing so make sure and pencil in

this important date today!!

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 func-

tional 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

of PWCF and families in the region in

our newsletter. If you have a story or

a photo that you would like to in-

clude in the next issue of the news-

letter send your information to Katie.

Alternatively if you have an up-

coming event be sure to get in touch

with TLC4CF to receive your fundrais-

ing pack and we can advertise your

event here and on our social media!

50 Years of Cystic Fibrosis

Ireland—time for a facelift!

“As part of 50th year we are shorten-

ing our name to Cystic Fibrosis Ire-

land (CFI) and we have refreshed the

logo, while still retaining our well

known kite sign. This will be wel-

comed by everyone who has tried to

put our full

name on a t-

shirt” Philip

Watt (CEO of

CF Ireland).

CF Ireland 50th Anniver-

sary—Remembrance &

Thanks Giving Service

Cystic Fibrosis Ireland would like to

invite you to reflect and celebrate on

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 [email protected]

or 01-4962433

Please note:

The CF Ireland Cross Infection Guide-

lines will apply to all people with CF

(PWCF) attending.

For people unable to attend the ser-

vice will be show on www.cfireland.ie

For people requiring special assis-

tance 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 cele-

brations

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 participa-

tion in all things CF!! We would love

if anyone who has photo’s, stories,

articles, information or anything

which could contribute to such a pro-

ject to get in touch with Katie on 087

1954213 or email [email protected].

Likewise we would love to hear from

people involved in more recent de-

velopments 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