A rapidly progressing disease that affects the nerves

In Australia, approximately 800 people are diagnosed with motor neuron disease (MND) every year.

MND is also known as amyotrophic lateral sclerosis (ALS) and Lou Gehrig's disease.

MND attacks the nerve cells that control our muscles, which enable us to move, speak, breathe, swallow and, ultimately, live. This means that, in most cases, a person with MND will die within two to four years of diagnosis.

Worryingly, over the past 30 years, the rate of MND in Australia has increased rapidly. The death toll has risen by 250%.

MND occurs in two forms – genetic and sporadic. Some 10% of patients have the genetic form of the condition, which means a faulty gene is the cause of their MND. Tissue and genetic samples donated by our patients and their families to Macquarie’s Neurodegenerative Disease Biobank have helped to identify some of the genes involved in the disease. Through IVF three babies have been born with these faulty genes removed, which means MND will no longer affect these families.

However, the vast majority of MND cases (90%) are sporadic and have no known cause. Our research suggests environmental factors may play a role and we are actively searching for common links that may lead to a breakthrough.

Symptoms

Muscle weakness is the main symptom of MND. Other symptoms can include:

  • clumsiness and stumbling
  • difficulty swallowing or chewing
  • fatigue
  • muscle aches, cramps and twitching
  • muscle wasting, weight loss.
  • slurred speech.

MND can also cause emotional and psychological changes, as well as changes to memory and reasoning.

When to see a doctor

If you're experiencing any of the above symptoms, or if a family member has MND, visit your doctor.

Researchers still aren't sure what causes MND. Research shows that approximately one in ten cases is inherited. Other findings suggest that certain environmental conditions, such as exposure to toxins, could play a role in triggering the disease.

The symptoms of MND are common in many other health conditions, so a diagnosis can take time. If you're experiencing symptoms, your doctor will refer you to a neurologist. You'll be given a range of tests, including blood tests and muscle-related tests.

Unfortunately, there is no cure for MND. Treatments help to control the most common symptoms, like muscle twitching, cramps and excess saliva.

Common treatments include medication, supportive equipment and care from a multidisciplinary team of health professionals, including specialists and nurses, such as the one at MQ Health.

As the disease progresses, people with MND may need special equipment, such as a ventilator to maintain breathing and improve sleep. At the later stages of the disease, patients may need full-time nursing care.

If you or someone you know is diagnosed with MND, your specialist will develop a personalised treatment plan to help control your symptoms and support your quality of life.

Apart from in the confirmed familial cases (ie the cases caused by genetic defects), the causes of MND are unknown and risk factors are still being researched.

We do know that MND is uncommon in people under 40, and men are more likely to have the disease.

At Macquarie University, we are undertaking world-leading research to understand why MND is on the rise and to develop therapies that extend patients’ lives and ultimately cure them of the disease.

Macquarie has created Australia's largest research centre focused solely on finding the causes of MND and developing therapies to cure it. We have assembled some of the best MND researchers in Australia and from around the world, and we work with other MND researchers in Australia and around the world.

Our research begins in our MND clinic, with researchers partnering with patients to better understand the causes and biological processes underlying the disease. In the laboratory, we are looking for clues and potential targets for developing therapies to slow and stop the disease in its tracks. We all work together in the one facility, on the one topic and with one goal – to stop MND.

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Last updated: 29 Oct 2021