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.
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."
Killarney allocated over €600,000 for public outdoor dining
By Sean Moriarty The plan to place council operated outdoor dining on Kenmare Place took a step closer to reality this week. On Wednesday Fáilte Ireland revealed that 38 Municipal Districts were successful in their funding applications. Killarney is set to receive €604,505 under the scheme which is managed by the national tourism promotion body. […]
By Sean Moriarty
The plan to place council operated outdoor dining on Kenmare Place took a step closer to reality this week.
On Wednesday Fáilte Ireland revealed that 38 Municipal Districts were successful in their funding applications.
Killarney is set to receive €604,505 under the scheme which is managed by the national tourism promotion body.
“The aim of this Scheme is to support tourism and hospitality jobs and help businesses develop new ways of catering for domestic and international tourists outdoors. Access to outdoor dining facilities will continue to be a key part of industry recovery as we look forward to 2022 and beyond,” said Minister for Tourism Catherine Martin at Wednesday’s announcement.
Elected members of Killarney Municipal District are scheduled to meet in the coming weeks and more details of the project will be revealed after this meeting.
Student grants and renting
Supports Available It’s that time of year where parents and their school leaving children are preparing for college for the first time. The main financial support for students or their parents is the Student Grant from SUSI (Student Universal Support Ireland). SUSI typically accepts late applications up until November. This is a means tested grant […]
It’s that time of year where parents and their school leaving children are preparing for college for the first time. The main financial support for students or their parents is the Student Grant from SUSI (Student Universal Support Ireland). SUSI typically accepts late applications up until November. This is a means tested grant which may cover the fees (student contribution) and provide maintenance.
The limits that apply to the grant vary, but if the student was coming from a family with less than four dependent children, in order to qualify for the maximum rate of grant the total net income in the previous tax year would have to have been €39,875 or less. That refers to both the parent’s income and the student’s income, however €4,500 of the student’s income which they earn outside term time e.g. during the summer will be disregarded.
If the student was getting the PUP payment because they lost their part-time job due to the pandemic, this is taken into account. Currently there are no disregards allowed for PUP payments. If there is more than one student attending college from the same household, the limit may be increased by €4,830.
Maximum Student Grant
There are actually two different maximum rates of grant. There are referred to as the adjacent and non-adjacent rate. The adjacent rate is for students living within 45km of the college and the non-adjacent rate is for students living more than 45km from the college. The adjacent rate is €3,025. The non-adjacent rate is €1,125. There has always been a special higher rate of grant for disadvantaged students.
Student Assistance Fund
Yes, separate from the Student Grant from SUSI the colleges have access to the Student Assistance Fund. Students can apply directly through their college for assistance with expenses such as books or laptops. Typically, this involves completing an application form and going for a short interview in the college. There are no set amounts of funding under this scheme. The college will assess each application on its own merits.
Renting for the First Time
Don’t be tempted to pay a deposit or sign a tenancy agreement until you have seen the property. If you are signing a tenancy agreement check if you want to live in the property for the time period stated on the agreement, check for early break clauses. Make sure you have correct contact details for the landlord. If you chose to leave the property early you may lose your deposit.
The landlord should only retain the deposit or part of it to cover any damage to the property beyond normal wear and tear. The tenant should take pictures of the property before they move out as evidence of the condition they left the property in.
There are different rules depending on whether the property is in a Rent Pressure Zone or not. A Rent Pressure Zone (RPZ) is an area where rents cannot be increased by more than general inflation. At the beginning of a new tenancy in a RPZ, a landlord is required to provide the tenant, in writing, with the amount of rent that was last set. For a tenancy not located in a Rent Pressure Zones a landlord may increase the rent in line with market value once every two years.
For anyone needing information, advice or have an advocacy issue, you can call a member of the local Citizens Information team in Kerry on 0761 07 7860. The offices are staffed from Monday to Friday from 10am to 4pm, email email@example.com or log on to www.citizensinformation.ie for further information.
Killarney allocated over €600,000 for public outdoor dining
By Sean Moriarty The plan to place council operated outdoor dining on Kenmare Place took a step closer to reality...
Student grants and renting
Supports Available It’s that time of year where parents and their school leaving children are preparing for college for the...
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