TLC4CF Newsletter July-August 2012

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

[email protected].

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