Speaker - Marion Main
Marion is Consultant Paediatric Physiotherapist in neuromuscular disorders, recently having left GOSH (after 16 years, 35 in total with the team) to work with UCL and independently. She studied physiotherapy in Newcastle but has spent most of her career working in London. She has been involved in the development of standards of care in SMA, Congenital Muscular Dystrophy and Congenital Myopathies, was instrumental in developing many of the assessments used today and is a co-author on over 60 papers. She is an expert in clinical assessment and management of babies, children and young people with all forms of neuromuscular disorders, service development, clinical research and publication, teaching and education.
She was awarded the honour of a Fellowship of the Association of Paediatric Chartered Physiotherapists in 2021 in recognition of her work
Learning objectives
- To have an overview of new treatments currently available and becoming available for children with SMA and other neuromuscular disorders.
- To understand their actions, the changes in presentation seen in the children and the changes in course and prognosis.
- To look at changes in management and priorities for these children.
- To understand any precautions and considerations.
- Understand the difficulties in managing parental expectations with new treatments