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Motion · S6M-16993 · 27 Mar 2025

Tony Pearson's Campaigning Efforts for Spinal Muscular Atrophy Newborn Screening

Lodged by Bob Doris (Scottish National Party) Standard Motion 24 supporters

The motion

That the Parliament commends Tony Pearson for his tireless efforts in raising awareness and funds for early diagnosis and treatment of spinal muscular atrophy (SMA); notes that his campaign follows the SMA diagnosis of his two-year-old daughter and highlights what it sees as the urgent need for newborn screening as part of the routine blood spot test at birth; understands that SMA is a leading genetic cause of infant mortality, with effective treatments that can significantly improve outcomes if given early; acknowledges Tony’s upcoming 43-mile fundraising walk from Glasgow to Edinburgh, which he aims to complete in a single day, with approximately 15 hours of non-stop walking, on 1 April 2025, which also marks the 40th anniversary of Spinal Muscular Atrophy UK; believes that Tony’s efforts to raise awareness of the need for SMA screening for newborn babies is an important part of the campaign to secure such screening as soon as possible, and wishes Tony every success in his fundraising and campaigning efforts.

Supporters (24)

Source: the Scottish Parliament motions and amendments record.