TLC4CF Newsletter Jan/Feb 2013
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Transcript of 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/
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
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
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.
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