In conjunction with SMA Awareness Month, which is observed every August, we discuss a new study which looks at what it is like living with SMA in Malaysia, together with neurogeneticist Dr Azlina Ahmad Annuar, consultant clinical geneticist and paediatrician Dr Ch’ng Gaik Siew, and parent & co-founder of WeCareJourney Yap Sook Yee. We also discuss how the pandemic has affected this tight-knit community, and how people living with SMA and their caregivers have been coping, as well as what we need to do better to support them.

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