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Motion · S6M-12188 · 15 Feb 2024

Every Moment Matters for Babies Born with Spinal Muscular Atrophy

Lodged by Bob Doris (Scottish National Party) Standard Motion 17 supporters

The motion

That the Parliament understands that spinal muscular atrophy (SMA) is a debilitating genetic condition that damages the motor nerves in the spinal cord, leading to progressive muscle degeneration and severely restricted movement, which affects around 70 babies born across the UK every year; commends the work of patient advocacy organisations, such as SMA UK and the Genetic Alliance, in supporting families affected by and raising awareness of the condition; understands that disease modifying treatments are available that can help prevent disease progression, with the greatest impact being where it is possible to begin treatment before symptoms show; further understands that SMA can be added to the list of conditions screened for in the current newborn bloodspot test to identify the condition and inform treatment decisions at the earliest stage; considers that the majority of babies born in the European Union are screened for SMA at birth; believes that Scotland has the opportunity to move into line with many countries across Europe, including the Republic of Ireland, that already screen for SMA; understands that the UK National Screening Committee has committed to reviewing the case for SMA screening, and urges all governments across the UK, including the Scottish Government, to work closely together to deliver equitable SMA newborn screening as speedily as possible.

Supporters (17)

Source: the Scottish Parliament motions and amendments record.