National MND Lived Experience Network

MND Australia connects members of the National MND Lived Experience Network with organisations or groups who would like to work together with people with lived experience of MND, on specific activities that relate to care, advocacy, information development, or research.

The sorts of organisations or groups members might connect with include: 

• MND Australia
• state MND Associations
• other not-for-profit organisations
• researchers
• health professionals
• pharmaceutical industry
• others (such as equipment developers, education facilities, or government agencies)

Members might be invited to participate in a variety of ways, for example:

• join a working group or committee (usually online)
• give feedback on information materials that educate people about MND
• help to design a new project or program
• participate in a clinical trial or other research study (if eligible)
• participate in a focus (discussion) group on a given topic
• complete a survey

We hope that the National MND Lived Experience Network contributes to:

• more lived experience voices being included in activities and decisions that affect people impacted by MND
• members feeling empowered to get involved in activities that help the MND community
• ensuring projects, programs and research better meets the needs and priorities of people impacted by MND
• better care and support services
• information material that is more relevant, readable and understandable
• stronger relationships between people with lived experience and professionals working in the MND community, so all are working together to inform and create positive change.

People living in Australia are eligible to join if they are aged 18 years and above, AND they meet at least ONE of the criteria below:

• a confirmed diagnosis of MND
• carry a positive genetic mutation, but not diagnosed with MND
• currently care for a family member living with MND (in Australia)
• previously cared for a family member living with MND (in Australia)

We encourage people from diverse backgrounds to join, such as First Nations people, LGBTIQA+, or people from culturally and linguistically diverse (CALD) backgrounds. While MND Australia is unable to provide interpreters, support from a family member is permitted. People who use an assistive technology device to communicate are also encouraged to apply.

Register to join the lived experience network

After submitting an online registration form, you will be invited to take part in one (1) online introduction session with an MND Australia staff member. The session will take between 30 to 60 minutes. We can provide specific help or support to take part, if you need it. In this session you will:

• meet with relevant MND Australia staff
• hear more about the ‘National MND Lived Experience Network’ and how it works
• be able to ask any questions you might have

After this session, your name will be added to the member list. When opportunities arise for members to work together with organisations or groups who are seeking lived experience input, MND Australia will notify you via email. You can express interest in the requests that interest you, and that match your ability to participate at the time.

As part of the network, MND Australia will also offer online group forums throughout the year. In these forums, members can hear about the work that organisations working within the MND community are doing. Also, members can share insights into some of the current issues or challenges faced by people impacted by MND. This will help MNDA and other organisations to decide what we might work on in the future.

For more details on the role of members download the Role Profile.

Will I be paid for my time?

Some organisations or professional groups may be able to offer a form of payment, or gift of appreciation, to thank members for their time. However, others may not have the funds available to provide this. This will be made clear to you before you accept a request.