Page 1

Volume 1, Issue 3 October/November 2012

Welcome Dear all, The past two months at TLC4CF have been very exciting! Between visits from this years Roses’ of Tralee, some of our biggest fundraisers to date, the official opening of the TLC4CF regional office in Limerick and the continued construction of the new unit at the Mid-Western Regional Hospital, Limerick we’ve been on our toes! Although there have been some initial glitches in the construction process of the new unit we are confident that everything will be 100% back on track in the coming weeks (see building update). Some parents and PWCF have raised concern about the continued deterioration of the services being provided to CF patients in the MWRH—primarily staffing issues in both the physiotherapy and dietician departments. TLC4CF, CFAI and the hospital management are working to resolve this issues but one of the best ways to resolve issues like these are to have a concrete, detailed records of complaints. So we would really appreciate that if you or your child should attend clinic or an annual assessment and not be seen by any member of the CF specialist team that you contact Katie Murphy on 087 1954213 or email outlining the following: Date: Appointment type: Staff unavailable:

The official opening of the

Building Up-date— what’s

TLC4CF Regional Office


Courtfields Shopping Centre, Raheen, Limerick. On the 24th of August 2012 TLC4CF had the official opening of the regional office. Although the office has been in operation for almost 8 months, it was a wonderful opportunity to celebrate the recent developments at the Mid-Western Regional Hospital, Limerick. The evening was a great success with members from the three counties lending their support. We were also delighted to have been joined by Philip Watt (CFAI) and Eammon Mellet, of the Pro-AM golf tournament organising committee. TLC4CF made a presentation on the night to Mr Mellet (who was representing both the Pro-AM organising committee and the JP McManus family) as a sign of our unending appreciation for the enormous support shown to TLC4CF by JP McManus over the past three years. A painting of Limerick man Richard Harris—painted by Jennifer Allen, a local artist (see pic below).

Thank you in advance for your help.

In this issue Official ‘Opening of the TLC4CF Regional Office’ Fundraising Up-coming events Hospital up-date New equipment at the MWRH Building up-date

Marcella Clancy (TLC4CF) making the presentation to Mr Mellet

There have been many delays in the preliminary works associated with the new unit to be built in the Mid-Western Regional Hospital, Limerick. The main issues encountered were to difficulty of construction company—J.J Rhatigan & Company— in securing approved mechanical and electrical subcontractors. Through the hard work, dedication and persistence of all parties involved (Owen Kirby and Liam O’Kelly of TLC4CF) both sub-contractors have been approved and secured. This means that construction can continue now without further interruption. During the first weekend in November the current canteen (which is the site being used for the new unit) will be commissioned and replaced by a new, temporary canteen. There will then be a four week ‘dry strip’ of the old canteen and the first week of December will see the demolition of the old canteen and its onwards and upwards (literally)!! We can expect to see the new multi-story building entering the skyline at the MWRH in the new year! Although we have encountered some problems in the initial stages of this project, we are delighted to tell you all the great news that all is back on track and we would like to thank both Owen and Liam for their fantastic perseverance during these difficult stages.



ver the past two months fundraising for TLC4CF has

TLC4CF Fundraising aims for 2012

been fantastic!!! We have had numerous events taking

place throughout the two counties with two exceptionally successful events—The North Clare Cycle and the Croagh Patrick Climb in aid of TLC4CF & Irish Autism Action. We would like to thank everyone who has been involved in raising much needed funds for TLC4CF. With the construction of the new state of the art unit underway it is essential that we keep the motivation levels for fundraising UP and get the project across the finish line!! We are still falling short of approx. €600,000 to finish the project completely. Our fundraising target for 2012 is €200,000 and as our fundraising thermometer indicates we are almost there!! So lets keep up the hard work and help to provide a brighter future for adults & children living with CF in the Mid-West!

A look back over the past two months…..

TLC4CF cake used to celebrate the opening of the regional office—baked by Alison Rankin

The Official Opening of the TLC4CF Regional Office

TLC4CF prepare for our ‘Drop & Shop’ stand at the Limerick Show—along with our fantastic supporters from Ryan’s Centra, Raheen.

Maeve Gaffrey & Noelle Power pictured giving the London & New Zealand Rose some roses, hand-made by children in the MWRH

Roses of Tralee 2012 put smiles on the faces of all the children in the MWRH and the staff.

Marie Sampson (PWCF) who captained her school football team to victory in their schools football

TLC4CF & CFAI team up and take to he National Ploughing Championships selling our wonderful Food 4 Though Cookbooks Some art work created by children at the Children’s Arc welcoming the Roses of Tralee to the MWRH

Event Focus The North Clare Cycle for TLC4CF The North Clare Cycle was held on Sat 22nd September in Kilnaboy. The event was a great success with approx. 350 cyclists taking part on the day, and spanned all corners of the country. There were 3 routes to chose from, 120km, 40km and 10km—a distance to suit everyone. TLC4CF would like to extend a sincere ‘Thank You’ to the local Kilnaboy community who rowed in behind the event as they always do and helped with all aspects of the event—including steward- TLC4CF’s Marcella Clancy, who was one of the organisers of this fantastic event, taking on the ing, food preparation, food distribution, registracycle with a smile Fr. Ted, Fr. Dougal, Sr. Asumptha, Ms. Doyle & Fr. Jack tion, road markings and lots more!! We must give of Craggy Island lending their support to the cyclists special recognition to the hard work carried out by Clare Branch member Maureen Longe did a fantastic job in organising the Food for the participants—she managed to keep everyone fed and watered throughout the day, which is quite the achievement!! The feedback from the participants was so positive we have already set a date for next years event—Saturday 22nd September 2013 (one for the diaries)!!

And they’re off! Cyclists head on their way to complete the challenge

Over €10'000 has been raised from this event with monies still tricking in. Last by most certainly not least, we would like to extend a massive ‘thank you’ to our generous Sponsor Tom Liddy of Costcutters - Roslevan and Mill Road Ennis."

The Croagh Patrick Climb in Aid of TLC4CF & IAA TLC4CF would like to congratulate everyone who completed the Croagh Patrick Climb in aid of TLC4CF & Irish Action Autism on the 29th and 30th of September 2012 — climbers came in their hundreds and we are so grateful to everyone who supported the event! Almost 600 people from across Limerick and beyond scaled the famous County Mayo mountain the last Saturday and Sunday of September to raise vital funds for two charities: TLC4CF and Irish Autism Action. The climb was led by two Adare men, Liam Woulfe and Mike Aherne. Organiser Liam Woulfe (in front) makes the TLC4CF wish to extend our most sincere thanks and grati- ascent to the top of Croagh Patrick tude to Mike and Liam. Both men put an immense amount of work into this event and without their hard work the event would never have been so successful! We would also like to thank the rest of the organising committee and the volunteers on the day- everything TLC4CF’s very own Liam & Valerie O’Kelly en-route to the summit of Croagh went extremely smoothly and that is down to fantastic organisation Patrick and dedication by everyone involved!

Climbers were greeted at the top by one of the mountains natives!!

The event has raised an amazing €60,000 so far, with that figure growing by the day. All proceeds are being split 50/50 with TLC4CF and Irish Action Autism.

Joe Nangle climbs Croagh Patrick in his BARE FEET in aid of TLC4CF!!!

All smiles and laughs for these climbers BEFORE they take to the mountain….

Hospital Update & A.O.B Seasonal Flu Vaccine - Reminder for members We are coming into the season of coughs and colds so it is essential that all PWCF avail of the seasonal flu vaccine. Anyone can get the flu but it is more severe in people aged 65 years and over and anyone with a chronic medical condition—including cystic fibrosis. Vaccination should take place in September and October, and can be administered by your GP (if under 18years) or your pharmacist (if over 18).

make a wonderful Christmas gift for with TLC4CF to receive your fundyour loved ones so order your copies raising pack and so we can spread today! Call/email TLC4CF office on the word about your event!! 087 1954216 / katie

Here come the Girls!!

Development of Volunteers database

TLC4CF wish to congratulate all of the wonderful ladies who took part The work that is being carried out by in the Limerick Ladies Mini Marathon TLC4CF is immense. However noth- on Sunday the 14th of October in aid of TLC4CF.Thank you for your suping would be possible without the hard work and dedication of our vol- port. unteers. New Bronchoscope is now We currently developing a ‘volunteer up & running at the MWRH database’ and we hope you will all get involved!!! TLC4CF are delighted to tell you all Up-Coming Events—One for What does this mean? that the Bronchoscope which was Well all you need to do is send Katie purchased by TLC4CF is now in full the Diary your name, number, email address operational use at the MWRH. A The bi-annual Limerick & Tipperary and home address and your inforbronchoscopy is used to examine golf classic is going to take place on mation will be stored on our volun- you’re the airways and lungs interthe 15th of June 2013. We won’t feel teer database. Whenever there is an nally. For children with Cystic Fibrothe time passing so make sure and up-coming event which requires sis a bronchoscopy is particularly pencil in this important date today! some assistance from volunteers we useful technique to obtain lower airThe event will take place in Adare will text you out the details of the way specimens from children who Golf Club (beside the hotel) and event and if you are available to help are unable to expectorate. there will be an entry fee of €250 for out just let us know! Its that simple. This is an extremely welcome devela team of four. If you would like to So if you would be willing to lend a opment for CF care at the MWRH book a team in for the tournament hand to help improve the lives of and we would like to thank everyone or for more information contact Liam PWCF in the Mid-West just send on who was involved in fundraising for on 086 2675963. your details to Katie via text to this piece of equipment which cost €160,000. TLC4CF Cookbook—Food 4 0871954213 or via email to


The fantastic TLC4CF cookbook’s— Food for Thought volumes 1 & 2 are still available to purchase now. We are introducing special offers for the cook books at only €6 for one book or €10 for two (additional costs for postage & packaging—€3). The books would

Your TLC4CF Committee

Make a contribution to TLC4CF Newsletter

Tipperary Representative:

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 include in the next issue of the newsletter send in your information to Katie. Alternatively if you have an upcoming event be sure to get in touch

Limerick Representatives:

Caitriona Hayes : 087-9584843

Owen Kirby : 087-9679176 Liam O’Kelly: 086-2675963

Clare Representatives: Linda Drennan: 087-2255650 Marcella Clancy: 086-8390942

TLC4CF newsletter October - November 2012  

TLC4CF newsletter October - November 2012