MND Genies
MND Genies is a closed Facebook group for people who have tested positive for an MND 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.
Why the MND Genies exist
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 MND Genies do not provide medical, ethical or other advice, instead the group 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. They 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.
Kaitlin and Jessica's Story
You can 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
How to join the MND Genies
Visit the MND Genies Facebook page and request to join the group. You will be asked to confirm that you have tested positive for an MND related gene mutation, and you will be asked what gene mutation you have tested positive for.
Show your support for MND Genies
A great way to show your support for the MND Genies is to purchase an MND Genies T-Shirt.
Make sure to follow the MND Genies on Twitter and Instagram too!
MND NSW does not endorse comments or posts made by group participants and is not involved in the group administration. The MND Genies is a community owned initiative led by MND gene carriers. MND NSW promotes the group and is not responsible for the group functions or any experience participating in the group.
