Volume 1, Issue 2 July/August 2012
t is an exciting time for Cystic Fibrosis in Ireland and more specifically in the Mid-West. Years of lobbying and on-going fundraising 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 MidWestern Regional Hospital, Limerick. 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 growing 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 continuously working to ensure the highest 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 positive & negative experiences and forward them to TLC4CF (email@example.com) or to your local branch representatives. This will ensure that we are addressing the most prevalent problems facing patients and families.
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!!
‘Turning of the Sod’ at MWRH
ince TLC4CF was formed in 2008 the regional Branch has made significant advancements in raising awareness of CF in the region and improving hospital facilities. Monday the 21st of May marked the official commencement of construction of the new adult cystic fibrosis unit at the Mid-Western Regional Hospital, 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 supporters, we are almost there! Finance Minister Michael Noonan officially turned the sod of this new multi-million euro unit on the grounds of the MidWestern Regional Hospital, Limerick. The unit consists of five stories and will provide new facilities dedicated to breast diseases, neurological conditions, skin disorders and Cystic Fibro- TLC4CF committee pictured here with Minister Michael Noonan, Dr. sis. Two floors of this new Michael O’Mahony & Dr. Barry Linanne at the official ‘turning of the Sod’ Ceremony on the 21st of May 2012 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.
ith the construction of the new state of the art unit un-
TLC4CF Fundraising aims for 2012
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…..
Participants in TLC4CF’s first ever Relay Marathon which was completed in 3hrs 43 mins & 19 secs—Congratulations to all involved ‘Bono’ - lead singer of ‘Zoo 2’ warming up for his roof top gig in aid of TLC4CF at ‘B FEST’!!
Elaine Carew Kirwan & Friend taking part in Aherlow House Hotel’s Moonlight walk in aid of TLC4CF
Munster Rugby legend Jerry Flannery preparing to run a lap of our 105 Marathon
Katie Murphy (TLC4CF) pictured receiving a cheque for €250 from Gaelscoil and Raithin who organised a ‘Purple Day in aid of TLC4CF
Beautiful image from Knockpatrick Gardens, Foynes—who recently held a fundraiser in aid of TLC4CF and raised an amazing €4,357
Operation Transformation star Kayleigh Yeoman all smiles as she completes her run for 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).
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
Rachel Connolly (PWCF) aged 7, showing us all how it’s done at TLC4CF event!
Event Focus On Saturday, 22nd of September 2012 join TLC4CF in the North Clare Charity Cycle Choose one of three routes: 120km Challenge 40km or 10km Cycle
Scenic Burren & Atlantic Coast, Fr. Teds (€30) 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!
For more information contact: Seamus: 087 8222750 Marcella: 086 8390942 Sheila: 086 1086286 Email: firstname.lastname@example.org Facebook: North Clare CF Cycle
Up-Coming Events Limerick Agricultural Show 25th- National Ploughing Champion26th August ships 2012
Bingo nights in Lisdoonvarna, Co. Clare
LC4CF are having a ‘drop & shop’ stand at this years Limerick Show.
s you all know ‘Food for Thought’ cookbook Volume 1 has made a colossal €110,000 profit for TLC4CF!! Although CookWhat do we mean???? book volume 2 has already made a whopping Well when shoppers purchase something €30,000 we are hoping to see this figure that is inconvenient to carry around for the grow over the day, it’s TLC4CF to the rescue!!! Customers next few months!! may leave their item with the TLC4CF desk until they have finished browsing around and To help achieve TLC4CF will also offer the service of bringing this we are going to the National their purchases back to their car in ’Centra’ Ploughing Champisponsored trolleys!! Donations will be aconships in Wexcepted as payment for this service. We will ford from the 25th also be selling our ‘Food for Thought’ cook-27th of September. “Many hands make light books on the day. In order to be successful with the novel fund- work” so we are looking for volunteers for the three days! If you are planning on going raising idea we will need lots of hands and to the championships or would like to go for feet for the day so if you are available and the first time—why not do so by helping out willing to lend a hand TLC4CF!! If you are available and willing to on either date, please come along get in contact with Katie!! contact Katie on 087 Books cost €10 (€12.50 inclusive of packag1954213 or ing). If you would like to purchase Vol 1 or 2 email@example.com. contact Katie (087 1954213).
ancy being in with a chance of winning 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 commences 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.
Hospital Update & A.O.B Building Up-date— what’s happening?? The building of the new adult in-patient and out-patient unit at the MWRH started on site on 16th April 2012. The enabling 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 embankment 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 diversion works are almost finished which will enable the installation of foundations to the temporary escape stair and the temporary 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.
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 Geraldine and Martin were flown to Newcastle to receive this life changing surgery. 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 surgery he is sleeping without any oxygen for the first time in years! Philip will celebrate 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.
simultaneous measurement and display of various pulmonary function parameters even on non-cooperative patients, premature babies, neonates and paediatrics. The device makes it easier for infants and children to have PFT scores measured and monitored from diagnosis. The equipment can also be adapted to be used in adult patients. TLC4CF are delighted to provide the funding for this equipment which will be in use in approx. 2-3 months at the MWRH.
Don’t forget to send back your sponsorship cards: We wish to remind anyone who has taken 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:
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
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 TLC4CF would like to congratulate Ms which will primarily benefit young paediNiamh Hogan (Senior Adult CF physio) on her new post as Senior Physiothera- atric CF patients. The Exhalyzer D Pulmonary Function Test (PFT) device is the pist in COPD Outreach under the Nationfirst state of the art lung function testing al Clinical Programmes. Although Niamh device for infants and children. Exhalyzwill be sorely missed within the CF deer D has a unique system for continuous,
Staffing at the MWRH
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