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#Muscular Dystrophy

# muscular-dystrophy - Friday 22 February, 2019

'He has a chance at life now': HSE grants access to drug that could help boys with rare condition keep walking
# Translarna
# Translarna

'He has a chance at life now': HSE grants access to drug that could help boys with rare condition keep walking

Feb 22nd 2019, 8:38 PM 22,746 Views 5 Comments

At least five boys in Ireland have Duchenne Muscular Dystrophy, a muscle-wasting condition.

# muscular-dystrophy - Thursday 7 September, 2017

'He’s still walking but he’s struggling': Parents fight for access to 'life-changing' drug
# Muscular Dystrophy
# Muscular Dystrophy

'He’s still walking but he’s struggling': Parents fight for access to 'life-changing' drug

Sep 7th 2017, 6:00 AM 10,360 Views 7 Comments

The families of two boys are fighting for access to Translarna, a drug that could help delay the effects of a rare muscle-wasting condition.

# muscular-dystrophy - Saturday 13 May, 2017

Two boys fighting for access to drug that could help them keep walking

Two boys fighting for access to drug that could help them keep walking

May 13th 2017, 8:15 PM 13,957 Views 12 Comments

Translarna, the only treatment for boys with a specific type of Duchenne muscular dystrophy, costs €400,000 per patient per year.

# muscular-dystrophy - Saturday 7 January, 2017

'If she gets another chest infection she probably won't make it, that’s the reality'
# SPINAL MUSCULAR ATROPHY
# SPINAL MUSCULAR ATROPHY

'If she gets another chest infection she probably won't make it, that’s the reality'

Jan 7th 2017, 7:25 AM 31,738 Views 16 Comments

Nellie and Lara are the only two children in Ireland with Spinal Muscular Atrophy Type 1 – an extremely rare genetic condition.

# muscular-dystrophy - Monday 7 September, 2015

'When I was born there was no hint of any disease'
# Duchenne Muscular Dystrophy
# Duchenne Muscular Dystrophy

'When I was born there was no hint of any disease'

Sep 7th 2015, 6:10 AM 26,392 Views 6 Comments

One in every 3,500 boys are affected by Caleb’s condition.

# muscular-dystrophy - Tuesday 21 April, 2015

Runner with muscle wasting disease finishes marathon after 20 hours
# Finish Line
# Finish Line

Runner with muscle wasting disease finishes marathon after 20 hours

Apr 21st 2015, 9:31 PM 18,294 Views 12 Comments

He said he completed the marathon – his fourth – to show that love is stronger than death.