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SMA is caused by a problem with a gene called Survival of Motor Neuron 1 (SMN1). Everyone has two copies of the SMN1 gene, however, some people might have one working copy and one ‘faulty’ copy of the gene. These people are called ‘carriers’. Carriers do not have SMA, because of their one working copy of the gene.
Approximately 1 in 50 people carry one faulty copy of the SMN1 gene.
If you and your partner are both carriers of a faulty SMN1 gene, there is a one in four (25%) chance you will have a child with SMA.
Genetic carrier screening for SMA is available in Australia. Speak to your doctor, obstetrician or genetic counsellor for more information.
From 1 November 2023, genetic carrier screening for SMA, Cystic Fibrosis and Fragile X syndrome was made freely available through Medicare to Australians who are pregnant or planning a pregnancy and their reproductive partner, helping them to make more informed reproductive choices. For those people who do not meet these Medicare criteria, testing is available at a cost. Speak to your testing provider for further information.
If genetic carrier screening shows you and your partner are at risk of passing SMA onto your child, rest assured this does not mean you are not able to have a baby – it just means you need to do some extra planning. Your healthcare team will guide you through options for current and future pregnancies, including family planning options such as in vitro fertilisation (IVF).
If you have recently been made aware that SMA runs in your family, or have noticed symptoms that might indicate SMA in you or your child, speak to your doctor for more information about testing. Symptoms to keep an eye out for include:
If SMA is suspected, a blood test will be requested, which will look for the presence or absence of the SMN1 gene. If the SMN1 gene is absent, SMA can be diagnosed.
If the gene is present, other diagnostic tests will take place to rule out rare forms of SMA caused by changes to different genes, and other neuromuscular conditions. In two to five per cent of patients with SMA, the SMN1 gene is not missing, just inactive. Testing for this is more complicated and may take some time.
The healthcare professional simply needs to take a blood sample. Some discomfort may be felt as part of standard blood test procedures.
From 1 November 2023, genetic carrier screening for SMA, Cystic Fibrosis and Fragile X syndrome was made freely available through Medicare to Australians who are pregnant or planning a pregnancy and their reproductive partner, helping them to make more informed reproductive choices. For those people who do not meet these Medicare criteria, testing is available at a cost. Speak to your testing provider for further information.
Results are usually reported to your or your child’s doctor within two weeks of the laboratory receiving the blood sample.
If you or your child is diagnosed with SMA, your GP will refer you to a neurologist who will take you through next steps, including further information on living with the condition and the treatment options available.
For many years, there were no medicines available for SMA. However, innovation over the past decade has transformed the SMA landscape as families now have access to treatments.
Three medicines are currently available in Australia that can help slow or stop the progression of SMA. These treatments may also improve muscle function and life expectancy, though their long-term effects are still being studied.
While there is no cure for SMA, treatment focuses on managing symptoms and improving quality of life. A multidisciplinary healthcare team will support you throughout your journey with SMA.
More information on treatments can be found at our Treatments page.
Your neurologist will develop a treatment plan that suits you or your child’s individual needs.
Since there is no cure for SMA, treatment to manage the condition will be ongoing, unless advised otherwise by your healthcare team. Some available medicines will only require one dose. Further information on treatment can be found at our Treatments page.
The Pharmaceutical Benefits Scheme (PBS) subsidises the three medicines that are currently available in Australia. Patients must be eligible for the PBS and meet the relevant restriction criteria.
The cost of other treatment options, such as physical therapy to help manage the condition, varies greatly.
Your healthcare team can provide you with advice on the cost of treatment, as well as information on options for assistance.
Physical therapies are an important part of SMA treatment. They can support muscle health and help people navigate the everyday challenges they face when living with SMA. It is especially important for children with SMA, as starting treatment early and following the treatment plan closely can help them reach their full potential.
Working with a multidisciplinary healthcare team is also important for managing SMA and may include specialists, such as a dietitian.
New treatments for SMA continue to be researched, developed, and evaluated through clinical trials. SMA Australia advocates for the latest overseas-approved treatment options to be made available to Australians living with SMA and will keep the community updated as access expands.
Clinical trials – research studies that assess the safety and effectiveness of new medical treatments, tests or procedures in people – may be available for you or your child. Your neurologist can advise on relevant trials, or you can explore current worldwide clinical trials at ClinicalTrials.gov and discuss potential options with your neurologist.
For a broader view of SMA drug development, the Cure SMA (US) website provides a detailed pipeline of medicines at various stages, from pre-clinical discovery to FDA approval and availability in the United States. You can explore the SMA Drug Pipeline here.
In Australia, the Therapeutic Goods Administration (TGA) oversees medicine approvals, ensuring treatments meet rigorous standards for safety, efficacy, and quality before becoming available to the public. While some medicines gain TGA approval soon after receiving FDA approval, others may face a longer process due to factors such as local clinical trials and additional data requirements – or may not receive TGA approval at all.
Once approved by the TGA, a treatment can be submitted to the Pharmaceutical Benefits Advisory Committee (PBAC) for evaluation. Medicines that receive a positive PBAC recommendation and are subsequently listed on the Pharmaceutical Benefits Scheme (PBS) become accessible for eligible patients in Australia.
Newborn screening is a way to identify common conditions that can be treated if caught early, minimising the impacts on long-term health and survival. The NBS program is a free test offered to you a few days after your baby is born. If you agree to the testing, a midwife or nurse will prick your baby’s heel and collect a small sample of blood on a special filter paper card – a ‘bloodspot’ – which will be sent to a laboratory to test for conditions such as SMA.
Early diagnosis of conditions like SMA is important, because it means treatment can be started as early as possible and the impacts of SMA on your child can be reduced.
Collecting a bloodspot is safe and does not harm your baby – they may feel some brief discomfort, but holding or feeding them while the bloodspot is collected can help.
Results will be reported to your doctor a few days or weeks after the sample has been collected. Timing differs between States/Territories.
If your child is diagnosed with SMA, your GP will refer you to a neurologist who will take you through next steps, including further information on living with the condition and the treatment options available.
There are a range of support services available to people living with SMA, their carers and families:
Whilst genetic carrier screening can test if you and your partner risk passing SMA on to your child, it cannot be used to diagnose your child with SMA. Prenatal screening provides you with a clearer understanding of your child’s SMA diagnosis and can help guide conversations with your healthcare team regarding continuing your pregnancy and considering treatment options for your child.
If your child is diagnosed with SMA, they will have a certain type of the condition. Each type has a different impacts on the quality and length of life, with different treatment options available for each type of disease. Further information can be found at our Children (0-12) Living With SMA page.
The types of SMA are based on the age at which symptoms first appeared and the effect of these symptoms on growth, development and quality of life. The different SMA types have varied impacts and different treatment options, and include:
* However, in Australia, recent innovations facilitating timely diagnosis and treatment of SMA have started to change the way these types of SMA can be defined.
There are also some rarer forms of SMA:
If your child is diagnosed with SMA as a teenager, they may have some muscle wasting and movement limitations, and other symptoms such as scoliosis. You may need to make some accommodations to help them live a full life with SMA. More information can be found at our Teenagers (13-17) Living With SMA page.
A multidisciplinary healthcare team will support you or your child to live well with SMA. This should includes a General Practitioner (GP) and a neurologist, and can also include specialists such as a respiratory physician, dietitian, orthopaedic surgeon, allied health therapist (physiotherapist, occupational therapist or speech therapist) and genetic counsellor.
Adult-onset SMA is often a mild form of the disease, with minor impacts on quality of life. More information can be found at our Adults (18+) Living With SMA page.
Home modifications might be required to accommodate someone living with SMA, such as widened doorways to accommodate a wheelchair, or ramps to assist those with reduced movement. Speak to your occupational therapist for more information.
People living with SMA will be supported by a multidisciplinary healthcare team, which should include a GP and neurologist, and can include specialists such as physiotherapists and occupational therapists. There are also external support services available, such as SMA Australia’s peer to peer support programs. More information on external support services is available under 'Living with SMA'.
Most students with disabilities attend regular classes in mainstream schools. Some students may need adjustments in these environments, or to attend support classes with fewer students who require similar accommodations. Depending on your child's individual needs, you might also consider a specialist school (public or private). For some children, a combination of specialist and mainstream schooling works well. Homeschooling or distance education are also possibilities to explore.
The impact of SMA on quality of life depends on the severity of symptoms. However, support is available to help everyone living with SMA to reach their full potential. The treatment landscape for the condition is also rapidly evolving.
SMA Australia brings together a community of people living with SMA and their loved ones, to support people living with the condition through initiatives like peer-to-peer counselling, educate the wider public about the condition, and advocate for access to the best care and latest treatments.
There is currently no cure for SMA, however, treatments are available for eligible patients. More information can be found at our Treatments page.
This website is not intended to replace medical advice. Please speak to your healthcare professional for more information.
Join a powerful community of supporters who are helping tackle spinal muscular atrophy at its very core. Our community relies on us for support and best-practice resources to guide them in living well with SMA, as well as for resources to help raise disease awareness, educate others and advocate for people living with SMA in the wider Australian community.
