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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 …

AN exploration of the Gaelic songs of County Clare has unearthed 130 songs, with that figure continuing to grow. The outcome of the project, carried out by actor, writer and director Diarmuid de Faoite titled Dúchas is Dóchas (Heritage and Hope), will be launched by the Clare Arts Office and The Irish Traditional Music Archive (ITMA) this Saturday in Cultúrlann Sweeney, Kilkee. The work was done as part of the third Duala: Creator-in-Residence Scheme. “It wasn’t today nor yesterday that the people of County Clare fell in love with music and the county has a deserved reputation in the field of traditional music,” said de Faoite. “Despite this reputation, however, songs in Irish are rarely heard and even rarer still are songs in Irish from the county, save the ubiquitous ‘Beidh Aonach Amárach’,” he noted. “Though the music has been preserved and enriched, our voice was lost quite suddenly and traumatically with the rapid loss of language” he added, posing …

PRESIDENT of Ireland Michael D Higgins and his wife Sabina will visit Ennis this Saturday where they will pay tribute to all those behind the county capital’s success in being named Ireland’s Tidiest Town in 2021. The couple will attend a ceremony at President Higgins’ former secondary school of St Flannan’s College and during the visit he will unveil a plaque marking Ennis’ win in the national competition. Ennis Tidy Towns’ chairman Cormac McCarthy tells us that the local committee are “over the moon” to be hosting the president and his wife. He reveals that the ceremony will be particularly focused on the important role that the local community had in securing the win for Ennis. “It’s going to be a wonderful event and we have had great support in the organisation from St Flannan’s College, where the president went to secondary school, as well as getting logistical support from the Ennis Municipal District which is very appreciated.” Ennis Tidy …

CAR hire prices at Shannon Airport are six times more expensive than tourists arriving at Madrid will face, and more than twice as pricey as in London. On Wednesday afternoon, going through the Shannon website, the cheapest car rental for the sample period June 10-17 was €1106.87. For an SUV for the same period the cost was €1,991.97. In contrast, someone travelling to Madrid and hiring a vehicle for the same period would face equivalent prices of €158.02 for a small car or €258 for an SUV. At Heathrow the prices quoted were €512 and €767.82. Obviously the huge disparity in prices puts Ireland at a serious competitive disadvantage, and Lahinch hotelier Michael Vaughan said that it is damaging the country’s reputation as a place to visit. “People are feeling really badly about it and we’re getting a very bad image.” He said he recently spoke to one person from North America who was struggling to arrange transport for a …

THE Ryder Cup is set to bring a big economic boost to the Mid West in 2027, and homeowners in Clare may be able to make tens of thousands of euros through renting their houses to golf fans. The accomommodationfortheevent website is providing a platform for those seeking to rent their houses, and in a number of cases the sums being sought are eye watering. A sum of €17,000 is currently being sought for one four-bedroom house in the Bunratty/Cratloe area. While it’s a huge sum for what’s a short event, it is by no means exceptional, with several property owners looking for more than €40,000 and some up to €50,000. Not all of these are in particularly close proximity to Adare either, with one outside Listowel seeking €45,000. A sum of €28,000 is being sought for an apparently unremarkable three bedroom house in Limerick city. Brian Higgins of www.accommodationfortheevent.com said that many houses in Clare would be of interest …

Ennis Town are just one game away from becoming the first Clare team to secure a provincial title as they face Cork side Midleton FC in the Munster U19 Cup final this Friday. Tony Downey, who is in charge of both the U19 and senior squads within the club, is aware that this would represent a huge achievement for Ennis Town to win in their first ever Munster final appearance while he believes it would also be a huge boost for soccer within the county. “We have so much to play for. Avenue have reached the FAI Cup final before while Newmarket have gone deep in competitions before but this would be a big achievement for the club. It would be huge for Clare soccer if we were to win.” “I think Clare soccer is improving every year. For nearly every team it’s about the retention of players and advertising the game to the players so we hope we can …

Forty years after his first win in the race, age-less Curragh trainer, Dermot Weld, secured a fifth Irish 1,000 Guineas when his Homeless Songs routed her rivals in the Tattersalls-sponsored contest at the Curragh on Sunday. Weld has enjoyed a glittering career, with names like Vintage Crop, Go And Go, Vinnie Roe and Media Puzzle doing him proud all over the world. In recent times things have been a bit quieter for the master of Rosewell House, but in Homeless Songs he has the makings of another superstar. Chris Hayes was entrusted with the mount aboard the 11/2 shot who was smartly away from the stalls. Fifth at the two-furlong marker, Homeless Songs cruised into the lead on the stands side as the field entered the final furlong. The victorious daughter of Frankel was in top gear now and, with consummate ease, the Moyglare Stud-owned filly powered home to beat 11/4 favourite Tuesday by five-and-a-half-lengths. This really was a demolition …

AN announcement by the Minister of Health that the HPV vaccine is to be made available free of charge to all women under 25 has been welcomed by the family of the late Laura Brennan. Since Laura’s passing three years ago the Brennan family have fought tirelessly to increase awareness of, and access to, the life saving vaccine. The Brennans are now stepping away from the campaign with Laura’s father Larry saying, “As a family we feel that we have achieved what we set out to do.” Minister for Health Stephen Donnelly has written to the HSE telling it to outline a vaccination programme for women, as well as a catch-up programme for girls and boys in secondary school who missed out for various reasons including the pandemic. In a message posted on social media confirming the move, Minister Donnelly paid tribute to Laura, who died from cervical cancer in 2019, and the Brennan family. “Our goal it to eradicate …