MND Genies is an online support network and Facebook group for people who have a motor neurone disease related genetic mutation, but do not have MND.

About 10% of people diagnosed with MND have a familial form of the disease. Of these, about one in five have a mutation on the SOD1 gene and about two in five have a mutation on the C9ORF72 gene. These mutated genes can be passed down through families and children can inherit the mutated gene.

The aim of MND Genies is to provide a space where people can connect and share their experience of having an MND related genetic mutation.

MND NSW does not endorse comments or posts made by group participants.

To join MND Genies or for more information about the group, contact MND NSW at This email address is being protected from spambots. You need JavaScript enabled to view it. or ph. 02 8877 0999.

You can also download and read our MND Genies flyer and Welcome letter here: 


Make sure to follow the MND Genies on Twitter and Instagram too! 

See us on YouTube

Couldn't get to Ask the Experts or the SIG workshop?

Catch up at the MND NSW YouTube Channel.

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