MND Australia

The Lived Experience Expert Driving Team

The Lived Experience Expert Driving Team is a group of people with lived experience of MND and a keen interest in how research can contribute to improving the lives of people living with this disease.

Lived experience of MND includes people living with the disease personally, those supporting a family member or friend through their disease, and people who have lost a loved one to MND.

The Lived Experience Expert Driving Team forms part of The MND Research Collective, which includes other experts from the fields of MND research, medicine and healthcare.

The Lived Experience Expert Driving Team provides the MND Research Collective with guidance and leadership from the perspective of people with lived experience, for a range of research-related issues including, but not confined to:

  • membership of governance, strategic and leadership entities such as Boards, working groups and committees
  • what information resources are needed and/or useful
  • input into research experiment design
  • meaningful outcome measures 
  • better avenues and forms of communication
  • clinical trial design.

What progress has been made with the Lived Experience Driving Team to date?

We have compiled a list of resources that highlight some of the progress made by the MND Research Collective and the Lived Experience Driving Team to date. In this folder you can find terms of reference, some general information and resources on research and a recording of recent meetings. 

What skills and experience do I need?

You don’t need to have specific education or skills to advise us on your experience and perspectives, however there are a few principles that might guide your involvement:

  • a willingness to use your knowledge and experience to represent the views of others
  • a willingness to act as an advocate for others
  • an understanding that your involvement may not benefit you personally.

You can participate in The Lived Experience Expert Driving Team and The MND Research Collective for as long as you want, as often as you want, and you can leave whenever you need to.

It should be emphasised that membership of the Lived Experience Expert Driving Team will not be a vehicle to sign up for clinical trials or gain access to new treatments.

Further information, please contact Gethin Thomas, Executive Director, Research at MND Australia at or Bec Sheean, Research Director, FightMND at 

If you wish to hear from our current lived experience members, let us know and we can arrange for them to contact you directly.

Expression of Interest Form

If you are interested in joining The Lived Experience Expert Driving Team, please complete the Expression of Interest form below.

List of resources

Let us know if you have any specific skills or experience that you can contribute that might be an additional benefit beyond your lived experience.