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. 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 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.

MND Genies is for people who have tested positive for a familial MND gene mutation. We do not provide medical, ethical or other advice, instead we exist to accomplish two things:

1. Better access to genetic counselling and support for people wanting to find out if they carry a known gene mutation. We are aiming to achieve this through our advocacy work at both a state and federal level.

2. The establishment of an informal support network for people who carry a known familial MND gene.

We hope being part of this group will help you feel connected to others who understand. Together with us you can make a difference and we can work towards achieving a world without MND.

 
For more information about the group or to join, contact:

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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.

Find out more about MND and genetics here: Does MND run in a family or have a genetic connection?

 

Kaitlin & Jessica's story
You can also watch a short video produced by Macquarie University where two of the Genies founders, Kaitlin and Jessica, share their story of MND within their family and how it affected their mum Susan. Kaitlin and Jessica both underwent genetic testing for MND and the Genies were created to help support others in a similar situation. Kaitlin & Jessica's story - YouTube


Download and read our MND Genies flyer and Welcome letter here: 

 

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

 

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