Mito Foundation is Australia’s peak body dedicated to supporting and empowering people affected by mitochondrial disease (mito). To achieve this work, we made the Community Engagement Approach. This outlines how we'll work with the mito community.

Thank you to the mito community members who shared their time and expertise to finalise this approach.
Mito community member speaking with a Mito Foundation staff member in a conference building.

What do we mean when we say mito community?

We use the term ‘mito community’ to describe:

  • People impacted by mito, even if their diagnosis is uncertain or preliminary
  • People supporting people impacted by mito. This includes parents, spouses, other family members and friends. We also include people who have supported someone who has since passed away.
This approach outlines how Mito Foundation works with the mito community. A detailed description of the mito community and its allies can be found in this PDF document.

The Community Engagement Approach

Through our partnership with the mito community, we will strive to:

1. Respect the expertise of lived experience

This includes knowledge, skills and resilience that mito community members have developed to meet the challenges of living with mito. We will seek to incorporate this expertise into our work and involve community members in a way that values their expertise.

2. Form genuine relationships
3. Listen to understand
4. Include and reflect on diverse experiences
5. Create safe and empowering interactions

Our commitment to the mito community

What are we doing to improve our community engagement?

We recognise that Mito Foundation can improve how we engage with the mito community. This section describes current activities that aim to improve engagement.

1. Broaden our engagement to reach more community members

Through our 2022 Mito Community Survey we recognised that we have limited engagement with mito community members who are male, younger adults, parents of school-aged children, culturally and linguistically diverse communities, and Aboriginal and Torres Strait Islander peoples.

We are trialling new approaches such as new peer support groups (Mito Meet-ups) to engage with these groups.

2. Revising our approach to managing stories
3. Improving how we collect, store and share community insights
4. Making Mito Connect events more interactive
5. Reflecting diversity in our fundraising campaign stories
6. Creating inclusive community fundraising offerings

The Community Engagement Approach is supported by our values and strategic pillars. You can read about them on our Purpose and Vision webpage.