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Inherited MND affects up to 1 in 10 people with MND and means they probably have a family history of the disease. Where this is the case, it is impossible to predict when or if a family history means MND will happen. Other triggers may still be needed for the disease to begin. You may also hear inherited MND being called familial or hereditary MND.


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Basic facts about inherited MND

Inherited MND is caused by a mistake in the genetic code that holds instructions for making each protein in our bodies. This mistake is passed down from parent to child, but they may be a carrier of the gene without developing the disease.

A large number of genes that play a part have already been discovered. They can usually be identified through genetic testing, but this is not always conclusive. See the options on this page about genetic testing and genes.

Where there is no apparent family history, cases of the disease are known as sporadic MND.

Although inherited MND is not as common, it can have a big impact on families. You can find out more about challenges involved in our research information sheets:

Genetic testing and genetic counselling

Where a family history of MND exists, choosing to be tested can be a difficult decision and affect wider family members too. For this reason, genetic counselling is recommended and this provides facts and guidance about options. For more information on genetic testing, see the Oxford University Hospitals website.

If you have MND and want to know more about genetic counselling, ask your neurologist for advice. If someone in your family has been diagnosed and you want to find out more, ask your GP to be referred to a neurologist for guidance. See our Research information sheet:

B2: Inherited MND: Genetic testing and insurance

Genes that can cause inherited MND

To date, we know around 70% of the genes known to cause a family history of MND. The most common genetic mistakes with inherited MND are:

  • C9ORF72, discovered in 2011, which is responsible for around 40 in 100 cases 
  • SOD1, discovered in 1993, which is responsible for 20 in 100 cases 
  • TARDBP (TDP-43), discovered in 2008, which is responsible for up to 5 in 100 cases 
  • FUS, discovered in 2009, which is responsible for up to 5 in 100 cases.

Other extremely rare genes that can cause MND have also been found and these discoveries provide important clues as to how motor neurones are damaged in MND. This helps advance our understanding of all types of the disease.

To read more news about research articles on genes involved in inherited MND, see our MND Research Blog. There you can find articles on discovery of other genes including NEK1, C21ORF2, TBK1 and TUBA4A.

How do I find out about the MND Register?

The MND Register of England, Wales and Northern Ireland collects information about people living with MND. The information gathered in this database will help tell researchers more about possible causes of the disease and help improve care for people living with MND.

For example, the data will help work out the number of people diagnosed with MND each year, how many people currently have the disease and how this changes over time. Information such as gender and ethnicity can be used to look for characteristics of people more likely to develop MND.

Find out more on our page about the MND Register.

Video - Research talks on inherited MND

Scientists at the University of Oxford have set up Families for the Treatment of Hereditary MND (FaTHOM), which aims to bring together those who have a family history of MND to discuss the issues that can happen. The talks have been made available to watch through the University of Oxford website.

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Page last updated: 25 January 2023
Next review: January 2025