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Tag Archives: Cystic Fibrosis Ireland

Clare parents’ desperate appeal for access to CF ‘miracle drug’

CLARE parents of children with Cystic Fibrosis have told of their fears for their childrens’ future if they cannot access a “miracle” drug at the centre of a dispute between the Health Service Executive and a pharmaceutical company. Cystic Fibrosis Ireland estimate that around 140 children aged six-years-old to 11-years-old are already are on the drug Kaftrio, but 35 children with a particular genotype are not as they are outside the 10-year Portfolio Agreement that was signed by the HSE and Vertex in 2017. Emma Fitzpatrick from Sixmilebridge is mother to eight-year-old James and says the drug would mean “everything” to their family, improving her son’s quality of life. She was “devastated” when she received a call from James’ consultant to say that he would not be getting the drug. “Literally you have your fingertips on this miracle – and it is a miracle to us. It is not a cure, but it’s the nearest we will ever get to …

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Covid doesn’t take a holiday when the sun comes out

AN EMOTIONAL appeal has been issued by the father of a young Shannon girl with Cystic Fibrosis, as the county’s rate of Covid-19 spiked sharply this week. Kieran McCarthy, dad of 12-year-old Aoibheann, and a member of Cystic Fibrosis Ireland (CFI) is urging people not to become complacent about their safety and that of others, especially the most vulnerable. He said that in recent days, he has seen “crazy things,” that are very upsetting to his family and to others at risk. He told The Champion he believes the change in government has led to confusion over the safety message, and called for more to be done to convince younger people of the need to protect their families and the wider community. “Some people don’t understand because they have never had to experience illness or loss,” he said. “Some people are oblivious. Nine out of ten teens don’t understand hardship and loss. What they don’t realise is that it will …

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Lahinch celebrations for Row-A-Round Ireland

A crew of 20 rowers who have been circumnavigating the island of Ireland in a self-built 15ft skiff – a round trip of almost 1000 nautical miles – will arrive in Lahinch on Saturday, marking the half way point of their challenge. To celebrate this significant stage in their gruelling challenge in raising funds for Cystic Fibrosis Ireland, the rowers will be greeted by a party atmosphere at the promenade from 2pm. Lyons tea, who are sponsors, will erect a large marquee and will serve refreshments including their renowned tea to guests while there will also be a large kids play area for children to enjoy. The Row-A-Round Ireland crew hope to raise some additional funds at the half way celebrations as they strive to meet their ambitious fundraising target. All money raised will go towards fighting Cystic Fibrosis, a fatal genetic disease that affects approximately 1 in 1600 births in Ireland – the country with the highest incidence of …

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Put patients first campaign

The Patients First Campaign is holding a public meeting at 7pm on this Tuesday in the South Court Hotel in Limerick to outline a variety of concerns ahead of Budget 2015. Patients First is the umbrella group for a number of organisations, including the Irish Patients Association, Cystic Fibrosis Ireland, Patient Opinion, Irish Medical Organisation and Irish Nurses and Midwives Organisation. Public representatives have been invited to this meeting, which will be attended by people from all over the Mid-West. This will allow them hear, first hand, from past patients, their families, together with the partner organisations in the campaign, what their experience of the health service is and what we expect, from the political system, with regard to developing and protecting our public health service over the next five years. The core goals of the campaign are: 1. Budget must protect health service and patient care. 2. Independent, transparent, free, easily accessible, feedback mechanism that provides all patients, carers …

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