Spinal muscular atrophy (SMA) impacts hundreds
of Australians. Together in SMA aims to unite
the SMA community to spread awareness and
encourage people of all ages living with SMA.

Samuel, living with SMA

The characters shown are people with SMA and the required consent to use their stories has been obtained from the individuals and their families.
Photographs are for illustrative purposes only.

Together in SMA with Biogen

Supporting individuals with SMA and their carers

Together in SMA seeks to bring you up-to-date information about the condition and its symptoms, care options and insights from experienced members of the SMA community. We’re grateful for the feedback and involvement of the SMA community. We look forward to working together into the future, to provide a comprehensive resource for people living with SMA.

Understand SMA

What is SMA

SMA is characterised by a loss of important cells in the spinal
cord called motor neurons. Over time, the breakdown of these
neurons leads to a gradual decline in muscle size and strength.
While primarily a childhood condition, SMA can be diagnosed
in adolescents, and sometimes beyond 18 years of age.1

Understanding SMA
  • What is SMA?
  • Causes and genetics
  • Effects on life
  • Signs and symptoms
Living Well with SMA
  • SMA and school
  • SMA and work
  • SMA Stories
  • Home modifications
Diagnosis and Testing
  • Genetic testing
  • SMA detective work
Supporting SMA
  • Respiratory care
  • Nutrition and diet
  • Physiotherapy and exercise
  • SMA care centres
  • Care team
References:

1. Prior TW, Leach ME, Finanger E. Spinal Muscular Atrophy. 2000 Feb 24 [Updated 2020 Dec 3]. In: Adam MP, Everman DB, Mirzaa GM, et al., editors.

1. Faravelli I et al. Nat Rev Neurol 2015; 11: 351‑9.

2. Lunn MR and Wang CH. Lancet 2008; 371: 2120‑33.

3. Cure SMA. Understanding SMA. https://www.curesma.org/wp-content/uploads/2020/08/08262020_Understanding_SMA_vWeb.pdf.Accessed: May 2025.

4. Wang CH et al. J Child Neurol 2007; 22: 1027‑49.

5. Rossoll W and Bassell GJ. Results Probl Cell Differ 2009; 48: 289‑326.

6. Butchbach M. Front Mol Biosci 2016; 3: 7.

7. Kaczmarek A et al. Expert Opin Investig Drugs 2015; 24: 867‑81.

8. Munsat TL and Davies KE. Neuromuscul Disord 1992; 2(5‑6): 423‑8.

9. D’Amico A et al. Orphanet J Rare Dis 2011; 6: 71.

10. Farrar MA et al. Emerging therapies and challenges in spinal muscular atrophy. Ann Neurol. 2017;81(3):355‑368.

11. Kolb S and Kissel J. Neurol Clin 2015; 33: 831‑46.

Discover stories about lived experiences of SMA, inspiring perspectives, and
useful information that matters and motivates us.

Developed by us – adults living with SMA – for you, the SMA community.
Elie
Elie
Elie

Ellie

Juanita
Juanita
Juanita

Juanita

Cara
Cara
Cara

Cara