MND Australia

MND Collective Lived Experience Expert Driving Team

The MND Collective is looking for 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 to establish a Lived Experience Expert Driving Team.

Please read the information below and scroll to the bottom of this page to fill in the Expression of Interest form. 

What is the MND Collective?

The MND Collective is a concept co-designed with around 50 experts from lived experience, medicine, healthcare and research. During the co-design process the purpose, vision and values were developed from which the collective framework and objectives were established. The MND Collective is not a new entity or organisation, but rather the coming together of existing groups, organisations and stakeholders under a shared focus and vision and with a common agenda.

From this shared goal and focus a collective creates a joint approach to solving complex problems. It aims to encourage and facilitate a collective approach to research that enables better outcomes for people living with MND.

What is the purpose of the MND Collective?

The purpose of the MND Collective is to sustain hope through collaborative research and to improve the lives of people living with MND.

What is the vision of the MND Collective?

Our vision is to collectively accelerate our understanding of MND and fast track the discovery, development and delivery of effective treatments and improved care for people living with MND across Australia. The MND Collective was developed to tackle the question: how can we create better outcomes for patients through research?

How will the MND Collective work?

The MND Collective is not a fundraising initiative. Rather it is a framework to drive collaboration and collective impact in research. Each stakeholder makes a commitment to contribute to the overarching plan of the MND Collective by playing their specific role and contributing based upon their capabilities and areas of expertise.

As we state, people with lived experience of MND are at the core of everything that we do. This is reflected in our management Board which has an equal number of people with lived experience and researchers.

Lived experience of MND can come in many different forms; you may be living with the disease personally, supporting a family member or friend through their disease, or have lost a loved one to MND.

What is the role of the Expert Driving Team?

To truly ensure we are harnessing the full range of experience and opinions of the MND community, we are implementing a larger Expert Driving Team to provide that comprehensive guidance and advice.

We seek direction and leadership from 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.

MND Australia is also working with the wider MND community to establish a broader National Lived Experience Program which will provide input beyond the research domain. It is expected this Expert Driving Team will participate in that program.

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.

What else should I know about the MND Collective?

You can participate in the MND Collective and any committee or entity you’ve joined for as long as you want, as often as you want and you can and leave whenever you need to.

As we progress, we will let you know of opportunities to participate as they arise. We’ll give you the information about the committee or group that needs you, their aims and objectives, roles and responsibilities and you can let us know if you’re interested in joining. We’ll also mention any skills that would be helpful and if there is some information and training that might help you to develop certain skills.

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

The MND Collective narrative is available here. This document provides more in-depth information around the MND Collective.

Further information can be obtained from 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

We are therefore inviting people living with MND, their family, carers and past family carers to join us. If you are interested, please fill in the simple Expression of Interest (EoI) form below.

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.