tlc4cf newsletter july-august 2012
DESCRIPTION
TLC4CF (Tipperary, Limerick and Clare for Cystic Fibrosis) is a regional branch of the CYstic Fibrosis Association of Ireland. We aim to improve the quality of life for adults and children living with cystic fibrosis in the Mid-West of IrelandTRANSCRIPT
Volume 1, Issue 2
July/August 2012 Welcome Dear All,
I t is an exciting time for Cystic
Fibrosis in Ireland and more
specifically in the Mid-West. Years
of lobbying and on-going fundrais-
ing has resulted in very real and
visual improvements in the care
for adults and children living with
CF in the region. TLC4CF and
CFAI welcome (with open arms)
the new developments at the Mid-
Western Regional Hospital, Limer-
ick. The construction of the new
adult in-patient & out-patient unit
has commenced.
Although the physical resources
are improving for CF patients in
the region, the continuing cutbacks
in health services is impacting on
frontline patient CF care. The
moratorium on staff and the grow-
ing pressure on hospital managers
to make unrealistic cuts on services
mean there is a constant fear of
further depletion of care for CF
patients. TLC4CF, CFAI & the CF
multidisciplinary team are contin-
uously working to ensure the high-
est standard of care is provided to
CF patients.
It is essential that we here at
TLC4CF/CFAI are aware of your
experiences within the MWRH, so
we ask that you log all of your pos-
itive & negative experiences and
forward them to TLC4CF
([email protected]) or to your local
branch representatives. This will
ensure that we are addressing the
most prevalent problems facing
patients and families.
S ince TLC4CF was formed in 2008 the regional Branch has made significant
advancements in raising awareness of CF in the region and improving hospi-
tal facilities. Monday the 21st of May marked the official commencement of
construction of the new adult cystic fibrosis unit at the Mid-Western Regional Hos-
pital, Limerick.
TLC4CF have been working relentlessly towards this day for a number of years, and
with the support of JP McManus, CFAI and the amazing fundraising work put in by all
TLC4CF members and sup-
porters, we are almost
there! Finance Minister
Michael Noonan officially
turned the sod of this new
multi-million euro unit on
the grounds of the Mid-
Western Regional Hospital,
Limerick. The unit consists
of five stories and will pro-
vide new facilities dedicat-
ed to breast diseases, neu-
rological conditions, skin
disorders and Cystic Fibro-
sis. Two floors of this new
state of the art building
will be dedicated to the care of adult patients with CF and will provide 9 in-patients
en-suite rooms and an outpatient centre with 5 individual en-suite rooms and a CF
gym.
Representing TLC4CF on the day Katie Drennan (PWCF) spoke on behalf of TLC4CF
and CF patients attending the MWRH. “It’s a tremendous day. This new unit means
peace of mind for so many people with CF. It means we can be closer to home when
we have to come into hospital. People with CF are very vulnerable to cross-infection
– this new isolation unit means we don’t have to worry about that when we come
into hospital” Katie Drennan, PWCF and TLC4CF advocate.
TLC4CF committee pictured here with Minister Michael Noonan, Dr.
Michael O’Mahony & Dr. Barry Linanne at the official ‘turning of the
Sod’ Ceremony on the 21st of May 2012
‘Turning of the Sod’ at MWRH
In this issue
Official ‘Turning of the Sod’
Fundraising over the past two months
Event focus
Up-coming events
Hospital up-date
New equipment at the MWRH
Philip Fahey gets his 18th birthday
present early!!
Fundraising TLC4CF Fundraising aims for 2012
W ith the construction of the new state of the art unit un-
derway it is essential that we keep the motivation levels
for fundraising UP and get the project across the finish line!!!
Although we have secured the funds to construct the building —
we are falling short of approx. €600,000 to fit and furnish the
new unit… Our fundraising aim for the year of 2012 is €200,000
and as our fundraising thermometer indicates we are on track to
reaching this!!!
So keep up the good work and help to provide a brighter future
for adults and children living with CF in the Mid-West!
A look back over the past two months…..
Liam O’Kelly & Katie Murphy of TLC4CF accepting a cheque for
€400 from M.P.P.C Credit Union who designed & sold ‘Money
Pigs’ to raise money for TLC4CF. Also pictured Gerry Dundon,
Karen McCorley, Anne Fitzgibbon, Michael Kinsella & Dave
Operation Transformation
star Kayleigh Yeoman all
smiles as she completes her
run for TLC4CF
Munster Rugby legend
Jerry Flannery
preparing to run a lap
of our 105 Marathon
‘Bono’ - lead singer of ‘Zoo 2’
warming up for his roof top
gig in aid of TLC4CF at ‘B
FEST’!!
Participants in TLC4CF’s first ever Relay Marathon which was
completed in 3hrs 43 mins & 19 secs—Congratulations to all involved
Elaine Carew Kirwan & Friend
taking part in Aherlow House
Hotel’s Moonlight walk in aid of
TLC4CF
Katie Murphy (TLC4CF) pictured receiving a cheque for €250 from Gaelscoil
and Raithin who organised a ‘Purple Day in aid of TLC4CF
L-R Isobel Flynn, Caitriona Hayes (tlc4cf),
Mark Ryan, Dominic Hayes at the ‘Moonlight
Walk’
Katie Murphy (TLC4CF) pictured receiving a cheque for
€1,280 from St Nessans National School who organised
a ‘Purple Day’ in aid of TLC4CF. Also pictured here is
Áine Connolly (Limerick Branch).
Rachel Connolly
(PWCF) aged 7,
showing us all how it’s
done at TLC4CF event!
Beautiful image from Knockpatrick Gardens,
Foynes—who recently held a fundraiser in aid of
TLC4CF and raised an amazing €4,357
Event Focus
On Saturday, 22nd of September 2012
join TLC4CF in the North Clare Charity Cycle
Choose one of three routes:
120km Challenge Scenic Burren & Atlantic Coast, Fr. Teds (€30)
40km or 10km Cycle Family, Leisure Cycle—Scenic Burren & Fr. Teds (€10)
Starting at 10.30am, Kilinaboy National School—Registration 9am
Registrar online today at www.tlc4cf.com
Put on your kit, Cycle a bit, Feel fit….
And the training
begins… Who better
to get some tips
from than cycling
legend Sean Kelly!
Up-Coming Events Limerick Agricultural Show 25th-
26th August
T LC4CF are having a ‘drop & shop’ stand
at this years Limerick Show.
What do we mean????
Well when shoppers purchase something
that is inconvenient to carry around for the
day, it’s TLC4CF to the rescue!!! Customers
may leave their item with the TLC4CF desk
until they have finished browsing around and
TLC4CF will also offer the service of bringing
their purchases back to their car in ’Centra’
sponsored trolleys!! Donations will be ac-
cepted as payment for this service. We will
also be selling our ‘Food for Thought’ cook-
books on the day.
In order to be successful with the novel fund-
raising idea we will need lots of hands and
feet for the day so if you are available and
willing to lend a hand
on either date, please
contact Katie on 087
1954213 or
National Ploughing Champion-
ships 2012
A s you all know ‘Food for Thought’ cook-
book Volume 1 has made a colossal
€110,000 profit for TLC4CF!! Although Cook-
book volume 2 has already made a whopping
€30,000 we are hoping to see this figure
grow over the
next few months!!
To help achieve
this we are going
to the National
Ploughing Champi-
onships in Wex-
ford from the 25th
-27th of September. “Many hands make light
work” so we are looking for volunteers for
the three days! If you are planning on going
to the championships or would like to go for
the first time—why not do so by helping out
TLC4CF!! If you are available and willing to
come along get in contact with Katie!!
Books cost €10 (€12.50 inclusive of packag-
ing). If you would like to purchase Vol 1 or 2
contact Katie (087 1954213).
Bingo nights in Lisdoonvarna, Co.
Clare
F ancy being in with a chance of win-
ning over €6,850????
TLC4CF are delighted to announce that the
ever popular ‘BINGO’ in aid of TLC4CF is
back, with a current jackpot of €6,850!!!
Bingo will take place on Thursday the 26th of
July, August 30th &
September 27th.
Weekly bingo returns
on the 4th of October
and takes place every
Thursday from then
on.
Location: The Pavilion Hall, Lisdoonvarna, Co.
Clare
Time: Doors open at 7.30pm and game com-
mences at 8.30 sharp.
There will also be raffles on the night, with
great prizes up for grabs!!
For more information contact Kenneth
Flanagan on 086-2222290.
For more information contact:
Seamus: 087 8222750 Marcella: 086 8390942
Sheila: 086 1086286 Email: cyclenorth-
[email protected] Facebook: North
Clare CF Cycle
Building Up-date—
what’s happening??
The building of the new adult in-patient
and out-patient unit at the MWRH start-
ed on site on 16th April 2012. The ena-
bling works required to facilitate the
demolition of the existing canteen and
subsequent construction of the 6 storey
extension are on going. The temporary
car park site has been completed and
has been handed over for use by the
hospital. The contractors have started to
set up their compound along the em-
bankment beside the site, have felled
trees to gain access to the site and are
installing the crane base. The Stoma
Care Department relocation works have
been completed and the drainage diver-
sion works are almost finished which will
enable the installation of foundations to
the temporary escape stair and the tem-
porary canteen. The temporary escape
stairs and canteen works are expected
to be finished in approximately 8 weeks
time after which the demolition of the
existing canteen will begin. The project
is due for completion in January 2014.
Staffing at the MWRH
TLC4CF would like to congratulate Ms
Niamh Hogan (Senior Adult CF physio)
on her new post as Senior Physiothera-
pist in COPD Outreach under the Nation-
al Clinical Programmes. Although Niamh
will be sorely missed within the CF de-
partment, we wish her every success in
her new role and thank her for all of the
hard work and time she has dedicated to
treating adult CF patients at the MWRH.
On that note, we would like to welcome
Ms Louise Galvin to the CF team. Louise
will be treating adult CF patients for the
immediate future. We wish Louise well
in her new role, and look forward to
meeting her.
Philip’s 18th birthday
present comes
early!!!
On the 1st of July 2012,
local teenager Philip
Fahey (PWCF, aged 17)
got the call both he, and
his entire family had been waiting for—
double lung transplant!! As soon as the
news was in Philip and his parents Ger-
aldine and Martin were flown to New-
castle to receive this life changing sur-
gery. Philip’s family have been keeping
us up-to-date with Philip’s progress and
we are delighted to tell you how well he
is doing! Philip lungs are looking and
feeling great and just 9 days post sur-
gery he is sleeping without any oxygen
for the first time in years! Philip will cel-
ebrate his 18th birthday on the 25th of
July so from everyone at TLC4CF we wish
him a very happy and healthy birthday
and wish him well in his recovery.
TLC4CF to purchase new
equipment for MWRH
TLC4CF are delighted to announce that
we will be purchasing a new piece of
equipment for the CF unit at the MWRH
which will primarily benefit young paedi-
atric CF patients. The Exhalyzer D Pulmo-
nary Function Test (PFT) device is the
first state of the art lung function testing
device for infants and children. Exhalyz-
er D has a unique system for continuous,
simultaneous measurement and display
of various pulmonary function parame-
ters even on non-cooperative patients,
premature babies, neonates and paedi-
atrics. The device makes it easier for
infants and children to have PFT scores
measured and monitored from diagno-
sis. The equipment can also be adapted
to be used in
adult patients.
TLC4CF are de-
lighted to pro-
vide the funding
for this equip-
ment which will
be in use in ap-
prox. 2-3 months at the MWRH.
Don’t forget to send
back your sponsorship
cards:
We wish to remind anyone who has tak-
en a sponsorship card as part of any past
events to make sure and pass on your
collections to Katie, or your local TLC4CF
representative. Alternatively you can
lodge directly to our AIB account—A/C
No: 04310137, Sort Code: 935093. Once
you have lodged the money please let
Katie know so we can receipt and thank
you appropriately for your donation.
Thank you for your co-operation.
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
Hospital Update & A.O.B
Katie Drennan (PWCF) and Minister Michael Noonan at
the Official ‘Turning of the Sod’ ceremony’ with image
of the new multi-story unit at the MWRH