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New haemophilia drug a “life-changer” for Killarney man

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By Michelle Crean

A groundbreaking new drug could soon be on the market for haemophilia patients across the world as a Killarney man's clinical trial has dramatically changed his life.

Brian O'Mahony (62) - who has lived with the condition for over six decades - this week told the Killarney Advertiser that as a sufferer whose life has been severely impacted by the condition - the success of the drug "is life-changing".

Currently Chief Executive of the Irish Haemophilia Society, Brian from Dalton's Avenue is the only Kerry man - and only one of three in the country and just one of 54 globally - taking part in the trial. It's hoped that the drug which is only suitable for adult sufferers, could be on the market as early as 2022.

For Brian, having haemophilia, which is a bleeding disorder as a result of the body missing the Factor IX protein which helps clot the blood, meant injecting himself twice a week to keep his levels regular.

An active life meant taking extra doses to keep his health in check as bruising, falls or knocks could mean bleeding which he'd be unable to control and may see him hospitalised.

CLINICAL TRIAL

Brian jumped at the chance to take part in the new gene therapy trial earlier this year and it's been such a success that he now no longer has to inject himself.

"I have severe haemophilia," Brian told the Killarney Advertiser.

"I was taking the injections twice a week and that gives you an increased Factor IX. I would have done a lot of international travel up until this year and you're looking at your activities."

The new therapy, he explained, is a virus injected into the body.

"In order to get DNA into the system they give you a virus in an intravenous injection, a large dose into the body. This infusion of the matter goes into the liver cells. Prior to this my Factor IX was less than one percent. Now I'm near the normal range. I haven't had to take an injection since February. This is a functional cure. I've had no bleeds since and I'm fitter and healthier. It's life-changing."

Brian, former President or the World Federation of Haemophilia Organisation and President of the European Haemophilia Organisation, says there's 800 sufferers with the condition in Ireland - 270 who have a severe form.

He hopes the therapy will last 10 years or even a person's lifetime.

"Hopefully this will light the way forward."

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Ross Castle canal silt removal

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Ross Castle canal silt removal


Fianna Fáil TD for Kerry, Michael Cahill TD, has welcomed confirmation from the Minister for Housing, Local Government and Heritage that the National Parks and Wildlife Service (NPWS) will return to Ross Castle Canal to address the remaining silt once conditions allow.



Deputy Cahill raised the matter directly with the Minister following concerns from local boatmen regarding the significant amount of silt that had been left banked along the edge of the canal after maintenance works. They warned that, if left in place, the silt could simply be washed back into the canal during periods of heavy rainfall undoing the benefits of the recent clearance works.

In response to Deputy Cahill’s Parliamentary Question, the Minister confirmed that the NPWS had already cleared an entrance and exit route at the site when suitable weather and ground conditions allowed the work to proceed. Importantly, the Minister also confirmed that the NPWS will revisit the issue once lake levels reduce and conditions are suitable to facilitate safe access.

He said:

“I raised this issue after being contacted by local boatmen who were concerned that the silt left on the banks of the canal would inevitably be washed back into the watercourse following heavy rainfall. They made the valid point that the material had now been left long enough for aquatic wildlife to return, meaning its removal could proceed without causing unnecessary environmental disturbance.”

“I am pleased to receive confirmation that the NPWS intends to return to the site to complete the work when lake levels fall and conditions are suitable. This is a practical and sensible commitment which recognises both the environmental importance of the area and the need to maintain navigable access.”

Deputy Cahill said Ross Castle Canal is an important amenity and tourism asset within Killarney National Park and that it is essential it is properly maintained for the benefit of visitors, local businesses and the traditional boatmen who use it throughout the year.

“I will continue to engage with the NPWS to ensure these works are completed at the earliest suitable opportunity. Maintaining the canal is important not only for navigation but also for preserving one of Kerry’s most iconic tourism attractions and ensuring it remains accessible for everyone who enjoys Killarney National Park,” Deputy Cahill concluded.

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Free entry for under 18s at Ross Castle

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Free entry for under 18s at Ross Castle


Young people and families can explore Ross Castle free of charge throughout August as part of a national Office of Public Works (OPW) initiative.


The 15th-century stronghold on the shores of Lough Leane will waive admission fees for all visitors under 18 from August 1 to August 31. The scheme aims to make cultural and historic sites more accessible to young people and families during the summer holidays.
Under 18s must be accompanied by an adult. The promotion applies across fee-paying OPW heritage sites nationwide, excluding Kilmainham Gaol and Brú na Bóinne.
Minister of State with responsibility for the Office of Public Works, Kevin “Boxer” Moran, said the initiative offers young people a memorable way to connect with history, nature, and culture over the summer break.

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