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#SPINAL MUSCULAR ATROPHY

# spinal-muscular-atrophy - Wednesday 8 July, 2020

'I've can't lift my arms, brush my hair, or even go to the toilet alone': Children still waiting on Spinraza drug, Dáil told
# Dáil
# Dáil

'I've can't lift my arms, brush my hair, or even go to the toilet alone': Children still waiting on Spinraza drug, Dáil told

Jul 8th 2020, 5:44 PM 11,412 Views 1 Comment

The drug is used to treat SMA which can develop in babies and toddlers and can significantly reduce life expectancy.

# spinal-muscular-atrophy - Wednesday 15 May, 2019

'We need to do right by families': Call for HSE to fund drug for rare disease after NHS approval
# Spinraza
# Spinraza

'We need to do right by families': Call for HSE to fund drug for rare disease after NHS approval

May 15th 2019, 12:29 PM 6,250 Views 4 Comments

Spinal muscular atrophy weakens muscles and causes problems with movement, breathing and swallowing.

# spinal-muscular-atrophy - 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 31,703 Views 16 Comments

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