Developing specialists in Spinal muscular atrophy – our first Basecamp


This activity has been supported by sponsorship from Biogen Idec Limited and Roche Products Limited. The sponsors have had no control or input into the educational content of this activity.

Dr Min Ong and Dr Vasantha Gowda

Our first Basecamp in Spinal muscular atrophy (SMA) was developed after work to create a care pathway in SMA highlighting a gap in education for professionals looking to cultivate a specialism in the complex condition.

On 23rd November, a group of 23 healthcare professionals across neurology, paediatric neurology and paediatrics gathered to expand their understanding and improve their practice. Primarily consultants and registrars, there were also advanced physiotherapists, a clinical nurse specialist and lead pharmacist in attendance.

Scene setting and an introduction to SMA was followed swiftly by case studies to demonstrate the different types of SMA, accompanied by the way that requires tailoring of treatment and management options.

'Really good session to provide a background to SMA and treatments, appreciated videos and pictures to apply the graphs/tables/charts to the real child.'

Delegate comment on 'SMA types'

Part of the course presented the newly developed best practice care pathway and discussed how to overcome some of the challenges in meeting this optimal practice. Drs Min Ong and Channa Hewamadduma presented on this from their perspectives in paediatric neurology and neurology respectively.

'It was really useful to give us ideas about best practices and how to overcome barriers.'

Delegate comment on the 'service pathway'

The session on orthopaedic practice was held as a group discussion, which greatly benefited from the range of different disciplines in the room.

'From a therapist's perspective, this gave delegates an opportunity to think after medication and how we managed what resources are needed, what little resources are out there and the impact on families.'

Delegate comment on 'orthopaedic practice'

Dr Giovanni Barranello took one of the final sessions, and spoke on 'Metabolism, nutrition in SMA Amino acid diet, hypoglycemia, growth'. His talk was a distinct highlight for many.

'I could listen to Giovanni all day - this topic is rarely discussed in our clinic except swallowing/feeding issues.'

'Really useful. I had no previous knowledge of multi-organ issues or dietary options.'

Delegate comments on 'nutrition and diet'

For those interested in learning more, the full care pathway and assorted articles around this from the lived experience of a little boy called Ezra and his family are available online.

Additionally, an introduction to SMA assessment, diagnosis and management, we have a short free access webinar available via Neuromuscular Academy with expert speakers Dr Vasantha Gowda, Dr Min Ong, and Lisa Edel who present an overview of the condition, management through case studies, and respiratory management, respectively.

Raising awareness, improving outcomes

Neuromuscular Academy is the first bespoke course for healthcare professionals to receive expert training in neuromuscular conditions like spinal muscular atrophy.