On Wednesday’s Morning Focus, Sinéad Perez joined Gavin Grace to talk her fight and unstinting campaign to access a breakthrough drug for her young son.
Jordan Perez, 11, from Sixmilebridge, has a condition called spinal muscular atrophy – a degenerative disease of the muscles. His mum Sinéad has been to the gates of Dáil Éireann in her quest to access a drug called Spiranza. Yesterday, after a lengthy campaign the HSE finally announced it was approving the treatment.
Minister for Health Simon Harris tweeted to acknowledge the campaigning of families like Jordan’s for the first ever treatment for children with SMA.
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Welcome news today that Spinraza is now approved by the HSE. This is the first ever treatment for children with SMA. I know how hard the long journey to get here has been for families but very glad children in Ireland will now have access
— Simon Harris TD (@SimonHarrisTD) June 11, 2019
It’s hoped a new report into the CervicalCheck scandal will restore confidence in cancer-screening programmes and Dr Gabriel Scally’s review has found that thousands of screening tests were sent, without the HSE’s knowledge, to US labs that it hadn’t inspected. Dr.Scally spoke to Gavin about how she went about this review.
You may not be aware but a public consultation has recently opened asking you to have your say on the possible extension of the Ennis-Galway train line from Athenry to Tuam and then from Tuam to Claremorris. If the extension to the Western Rail Corridor went ahead, it would open up Clare to passengers travelling both to and from Mayo. The six-week consultation period, which closes in mid-July, aims to examine the financial and economic benefits of extending the route and Irish Rail says the next step will depend on demand from the public. Colmán Ó Raghallaigh from West-on-Track spoke to Gavin about the advantages of having a new rail corridor.
Award-winning Ennis journalist and Author Rosita Boland has spent 30 years travelling to destinations from Bali to Antarctica and now she’s gathered together her travellers’ tales in a beautifully written memoir, called ‘Elsewhere’.
Thousands of people from this county, and all across the region, will head to the Redemptorists in Limerick for the annual Novena in honour of Our Lady of Perpetual Help.
In this multi-media age, people worldwide are also joining in online – through the website www.novena.ie, submitting their prayers and even lighting virtual candles. The Novena begins on Friday next, June 14, and continues until Saturday week, June 22, at the Redemptorist Church on Limerick’s South Circular Road. There will be 10 celebrations on each of the nine days – the earliest at 7am, the last one at 10.30pm.
Fr Seamus Enright Rector of the Redemptorists spoke to Gavin about the annual Novena.
Dr Susan Crawford and her son Tomás are currently walking the Wild Atlantic Way to raise awareness of autism and this week the Spanish Point natives are on home turf as they come through County Clare
On Wednesday they are due to walk from Quilty to Miltown via The Bellbridge and Red Cliff at 5pm.
On Thursday the walk continues from Miltown/Spanish Point to Lahinch and starts at the Secondary School Gate at 4pm.
On Friday:To finish the working week they are due to walk from Lahinch to the Doolin at 9am at Lahinch SeaWorld and weather permitting will go to the bridge along the beach/path. They will also walk from Liscannor to Moher Cottage and then to Guerin’s Path and on the Cliff Walk to Doolin.
And Finally to Saturday and Sunday they hope to try and take it off the road and across the Burren.
To end the show our Ask the Vet John Underhill from Burren Vets joined us to talk about how important animal vocalisation is and what you can do if notice a change.