Dissolution of Parliament

This website was established while I was a Member of the Scottish Parliament. As the Parliament is now in recess there are no Members of Parliament until after the election on 7 May 2026

Motion MA
I raised a motion in The Scottish Parliament recently, titled "Every Moment Matters for Babies Born with Spinal Muscular Atrophy". It urges all governments across the UK, including the Scottish Government, to work closely together to deliver equitable SMA newborn screening as speedily as possible.
  
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.
 
I commend the work of patient advocacy organisations, such as Spinal Muscular Atrophy UK and the Genetic Alliance, in supporting families affected by and raising awareness of the condition.#
 
The 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.
 
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. The majority of babies born in the European Union are screened for SMA at birth. Scotland has the opportunity to move into line with many countries across Europe, including the Republic of Ireland, that already screen for SMA.
 
The UK National Screening Committee has committed to reviewing the case for SMA screening, and I urge all governments across the UK, including the Scottish Government, to work closely together to deliver equitable SMA newborn screening as speedily as possible.
 
 
Full Text of Motion
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