As research forges ahead, so too does our understanding of SMA1-3

Ongoing research is providing us with an ever-increasing understanding of the science behind SMA, as well as care options for patients.1–3

In the past few years, we have seen a considerable increase in the amount of research into SMA:4–6

This impetus has led to far-reaching changes in the care and management of people living with SMA.1,2

There has been an update to the SMA standards of care


Since their publication in 2007 the SMA Standards of Care have helped caregivers and healthcare professionals provide people with SMA the best level of support available.

An ever-expanding library of scientific research and evidence showing that people living with SMA can expect better outcomes than ever before, means that the Standards of Care were updated in 2017.

This update includes changes to the management and care you can expect to receive, helping you, your caregivers and healthcare professionals understand the different aspects of supportive care for SMA.2,3


SMA is a progressive disease

Without intervention, people living with SMA will see progression of their disease over time.7,8

“I think there is a process of grieving the loss of certain abilities. Then, you sort of adapt and accept it and before you know it, there’s something else that you’re then experiencing the loss of.”

Person living with SMA9

In 2015, a European survey was completed by people living with SMA and by caregivers. The results showed that:

For a person living with SMA, the likelihood of being able to walk depends on the age when symptoms first start. The later symptoms start for a person living with SMA, the less severe their disease usually is.10

Likelihood of being able to walk 10, 20 and 30 years after symptoms began, according to the age symptoms first appeared.10

Despite the impact of SMA, many people with SMA go on to live fulfilling lives and with the greater care outcomes seen today,1 there is even more hope for people living with SMA. 

  1. Mercuri E et al. Neuromuscul Disord 2018;28:103–115. 
  2. Finkel R et al. Neuromuscul Disord 2018;28:197–207.
  3. Bharucha-Goebel D and Kaufmann P. Curr Neurol Neurosci Rep 2017;17:91.
  4. Juntas Morales R et al. Rev Neurol 2017;173:308–319.
  5. National Center for Biotechnology Information. PubMed website.
  7. Kaufmann P et al. Neurology 2012;78:1889–1897.
  8. Rouault F et al. Neuromuscul Disord 2017;27:428–438.
  9. Wan H et al. Orphanet J Rare Dis 2019;14:74.
  10. Zerres K et al. J Neurol Sci 1997;146:67–72.