The MND Genies is a closed Facebook group for people who have tested positive for a MND gene mutation but do not have MND.
The informal support group is a safe space for MND Genies to tell their story and be supported by others who are sharing similar experiences.
Members of the group can share information about MND as well as updates and advancements about what’s happening in research, the health sector or in the MND community.
The group is a space where members can feel a sense of community and that they are not alone in navigating their future with the increased likelihood of an MND diagnosis.
What is sporadic and familial MND?
MND can be either sporadic or familial. Sporadic MND is where there is no known gene or family history of the disease – it just occurs, without a reason that we know of yet. Familial MND is inherited. This is where the MND gene is sometimes passed down in a family from parents to children.
According to MND Australia, around 1 in 10 people diagnosed with MND have the familial form and genetic testing can now identify gene mutations in the SOD1, TDP43, FUS and C9orf72 gene.
If I have a gene mutation, will I definitely be diagnosed with MND?
No. From what research tells us, if a gene mutation is present there is a higher likelihood of an MND diagnosis. It is not certain.
Where do I start with genetic testing?
If you have a family history of familial MND and you would like to know if you carry one of the MND gene mutations, you can choose to undergo genetic counselling and testing. This is a personal decision and not everyone wants to know if they carry a gene mutation.
Other people find comfort in knowing their genetic makeup and test so they can plan for the future and be better prepared if MND symptoms happen to present. Speak with your GP about genetic counselling and testing.
What is genetic counselling and genetic testing?
Genetic counselling is support from a counsellor who is skilled at understanding the challenges of investigating gene mutations. They support a person to understand their options and to ensure a person’s decision to undertake testing is well informed.
Genetic testing is usually done by blood tests. It examines the genetic informaiton contained in a person’s cells, called DNA. Further general information about genetic testing can be found on the healthdirect website.
Can I join the MND Genies if a family member has MND but I haven’t undergone genetic testing?
No. The group is for people who have undergone genetic testing and have returned a positive result for one of the MND gene mutations.
How do I join the MND Genies?
Visit the MND NSW website for further information and to complete the online registration form, or request to join via the MND Genies Facebook page.
Want to show your support for the MND Genies?
A great way to show your support for the MND Genies is to buy a T-shirt. All proceeds go towards supporting us to continue to provide information and support to people living with MND, including the MND Genies. Buy a T-shirt today via the MND NSW online shop.
Further information
- MND Genies page of the MND NSW website.
- Familial MND and genetic testing on the MND Australia website.
- Genetics in MND – Therapies, Testing and the Future. An episode of the State of Play webinar series by MND Australia.