Rally Round Rupert Funds £100,000 for Groundbreaking ACE SMA Physio Trial at University of Oxford

Rally Round Rupert, a charity committed to improving the lives of children with Spinal Muscular Atrophy (SMA), has gifted an impressive £100,000 to the University of Oxford. This funding will support the innovative ACE SMA physiotherapy trial, a project poised to redefine care standards for children aged 1–10 diagnosed with SMA and treated post-symptomatically.

The ACE SMA trial aims to optimise existing physiotherapy practices by providing more personalised and frequent care plans tailored to each child’s needs. Rather than implementing costly or complex system overhauls, this project seeks practical, sustainable solutions to enhance patient outcomes and lighten the care burden on families.

At the heart of this initiative lies a commitment to ensuring that every child with SMA has access to an individualised care approach. The trial will also explore the use of new rehabilitation devices where appropriate, under the supervision of trained physiotherapists. Functional assessments from the established SMA-REACH UK study will be used to measure the impact of these personalised plans, with flexibility for home visits to ensure inclusivity.

If successful, the trial will provide a proof-of-concept framework for improving physiotherapy care across the UK, showcasing how frequent, tailored rehabilitation can transform lives. Families, care teams, and children alike stand to benefit, as the trial paves the way for long-term health system reforms.

Rally Round Rupert’s generous funding is not just an investment in research but a beacon of hope for families affected by SMA. Together with the University of Oxford and the brilliant team of Dr Laurent Servais and Charlotte Lilien at John Radcliffe Hospital in Oxford, they are championing a brighter future for children with SMA.

The ACE SMA trial is co-funded with ACE SMA charity.

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