Wednesday, 15 July 2015

St. John's GAA & Cadra make presentation to Cystic Fibrosis Ireland

St. John's G.A.A. Club & Cadra presented a cheque of €1,000 to Emer Carty, Iris Murphy & Mary Dillon Cystic Fibrosis Ireland representatives

Pictured front row left to right:  Niall Gordon Joint Chairman St. John's G.A.A. Club, Emer Carty CF, Irish Murphy CF, Mary Dillon CF & Bridie McLean CADRA & St. John's G.A.A. Club.

Back row:  Pat Benson CADRA, Catherine Stenson CADRA, Dympna O' Loughlin CADRA, Mary Dunbar CADRA, Ray Henry Joint Chairman St. John's G.A.A. Club & Colm Nevin Insurance Officer St. John's G.A.A. Club

St. John's G.A.A. Club & CADRA help fund Cystic Fibrosis, writes Michael McGee.

Following the Monster Auction/Sale that was held in the Carrarow Community Centre on Sunday July 5th last a cheque was presented to Cystic Fibrosis representatives in Cuilbeg last evening.

Sligo’s own 'Adi Roche' Iris Murphy the hard working and driven member of the Sligo Cystic Fibrosis branch kindly gave me an insight into what Cystic Fibrosis is all about.

Following the presentation I asked Iris what is Cystic Fibrosis and what services is proved by the organisation?

“Cystic Fibrosis celebrated their 50th Anniversary last year. It focusses on the need of CF sufferers and their families and do a lot of lobbying and trying to get hospitals and services up to scratch the way they should be.

There is a big thing with CF where cross infection is a major worry for families and parents. So that is what the organisation is trying to do, to build isolated rooms not just for CF people obviously but to help the hospitals in general. CF primarily affects the lungs and digestive system. Life expectancy has increased dramatically over the years and it’s all down to research, new medicines and better facilities.

There have been a huge amount of new developments. Last big one was Kalideco which worked on one particular gene. There is a few different genes. A new drug is coming out now and is at the negotiating stage. But hopefully it will benefit other people in the county that have a different gene. The 508 gene is the more common one.”

According to Iris the Sligo branch don’t receive any Government funding.

Not directly. Around the country there is hospitals that are given the centres of excellence and they try to build expertise with people who know a lot about CF. There are doctors and professionals in Sligo hospital and they will have a special interest in CF but they are not necessarily full time working with CF. So unfortunately Sligo is not a centre of excellence.
Galway is the nearest centre of excellence and at the moment a lot of people still go to Dublin which is a centre of excellence. Unfortunately in the West of Ireland the numbers are low which obviously means they can’t necessarily put any great funding behind which but it’s a pity because it does intend to mean people form the West of Ireland either have to travel further or maybe sometimes miss out on what is happening in the rest of the country. 
It’s a big thing for the SIigo Branch to try and push to make sure the people in Sligo, Leitrim, Roscommon. It’s actually the North West branch because if you think someone travelling from Letterkenny. Even going go Galway is a hell of a trek. If Sligo was the centre of excellence it would be better but unfortunately we don’t have the numbers for it.

How important is to get voluntary donations from clubs such as St. John’s G.A.A Club & Cadra

“Small clubs like St. John’s & Cadra are brilliant to support us. It’s a world wide illness but unfortunately the budget is so stretched with the HSE and the Government funding. They can only do so much. But its funding like this that goes towards research projects. We fund research projects as well and we give part of our money goes to medical and scientific council and they look into new things that are happening. Because of lobbying which still needs funds as well because of all the medical research. We don’t really know where the next big break through is going to come from maybe a small lab in Cork who knows. But those labs will only function with funding and resources coming from places like St. John’s.”

Final question I put to Iris What other events do CF organise over the year?

“The big one is the women’s mini marathon. The Garry Dillon event the (White Collar Boxing) are others. Usually it in an area where there is somebody well known and the locals are great for supporting and unfortunately in Gary’s case there is a lot of things done in his memory. It’s sad but it’s also nice that people are remembering him and are putting money towards prevention.


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