Around 10% of people with MND have familial MND, and two-thirds of these individuals will carry a genetic fault in a currently known MND gene, such as C9orf72 and SOD1. Once the genetic change causing MND in the family is identified, relatives can decide whether to have genetic testing to predict whether they are at risk of developing MND in future. Little is known about how individuals from these families decide whether to have genetic counselling, have genetic testing and undergo reproductive options. In fact, no Australian studies have been performed to date. 

If you are from a family with familial MND and there is a known genetic fault in the family, you are invited to participate in an interview by telephone to discuss your experiences of familial MND, receiving genetic information, and any subsequent decisions made such as whether to speak to a genetic counsellor or have genetic testing. We are interested in hearing a variety of experiences, both positive and negative, old and new. It is hoped that information from this research can guide the MND care and genetic counselling community on best practice guidelines for familial MND.

Multiple family members are welcome to contribute by having an individual interview.

If you would like to participate or would like more information, please contact Ashley Crook by email (This email address is being protected from spambots. You need JavaScript enabled to view it.) or phone (02 9812 3720). This is a 12-month project funded by the MND Research Institute of Australia (MNDRIA) Graham Lang Memorial MND Research Grant 2017 that has been approved by the Human Research Ethics Committee, Macquarie University (Approval no. 5201600879).