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#SPINAL MUSCULAR ATROPHY

# spinal-muscular-atrophy - This year 2022

'Timing is key': Parents call for inclusion of rare genetic disease in newborn heel prick test
# Sma
# Sma

'Timing is key': Parents call for inclusion of rare genetic disease in newborn heel prick test

Jun 28th 2022, 6:00 AM 12,054 Views 2 Comments

SMA is a degenerative disease that causes damage to nerves that develop muscle function and allow children to eat, move and breathe.

# spinal-muscular-atrophy - All time

'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 11,425 Views 1 Comment

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

'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 6,260 Views 4 Comments

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

'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 31,868 Views 16 Comments

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