National MND Lived Experience Network

MND Australia connects members of the National MND Lived Experience Network with professionals 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
• researchers
• state MND Associations
• FightMND
• health professionals
• pharmaceutical industry
• PR / media agencies
• 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 research study (if eligible)
• participate in a focus group 
• 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
• projects, programs and research better meeting 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) - within the past 2 years

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 schedule an informal online introduction session with the LEN Program Manager (30 minutes). The purpose of this session is so we can learn more about you and your experience with MND; and also so you can hear how the LEN works and ask any questions you might have. 

Following registration, your name will be added to the LEN member list. When opportunities arise for members to work together with professionals who are seeking lived experience input, MND Australia will notify you via email. You can express interest in the opportunities that interest you, and that match your ability to participate at the time.

All LEN members will also be invited to online quarterly 'LEN Community Catch Up' forums. In these forums, members hear direct updates from LEN members, and have the opporutunity to communiacte directly with staff working within the MND community, regarding the current issues or challenges faced by people impacted by MND. 

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

Will I be paid for my time?

Some 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.