Your story can drive change

Personal stories from the mito community inform all our work. This includes our advocacy initiatives, research priorities, and support services. This is an incredibly powerful way for us to show the real people behind our work and bring meaning to data.

We run the Mito Stories Project to collect and share these stories in a safe and impactful manner. It has been informed by community feedback and is being advised by the Mito Stories Project Advisory Group. Learn more about the project team.

By sharing your story you can help us focus our work on what matters most to you.

Sharing your story

The Mito Stories Project is currently collecting stories related to the topics listed below. If you'd like to share a story or experiences outside one of these topics please contact us.

The mito community’s experiences with health care

The Mito Stories Project wants to learn more about the mito community’s experiences with health care. By sharing your experiences and insights, you can help to improve health care for mito.

You can read more about this project and register your interest here.

The mito community’s disability support needs and experiences with disability schemes like the NDIS

The Mito Stories Project wants to learn more about the mito community’s disability support needs and experiences with disability schemes like the National Disability Insurance Scheme (NDIS). By sharing your experiences and insights, you can help to drive change to improve disability supports for mito.

You can read more about this project and register your interest here.

You can share your story anonymously. We are committed to protecting your privacy. This project has ethics approval.

We heard you

Feedback from the mito community asked us to avoid community members having to share their expertise multiple times. The Mito Stories Project was created as part of our commitment to improve our methods for collecting, storing, and using insights from the mito community.

Read our Community Engagement Approach to learn more. This outlines how we'll work with the mito community.

FAQs

Meet the project team

Mito Foundation staff

The Mito Foundation Policy and Advocacy team, listed below, are leading the Mito Foundation project team. They are advised by the Mito Stories Project Advisory Group.

Clare Stuart

Policy and Advocacy Manager

Hania Hussain

Community Insights Research Analyst

Rebecca Davis

Senior Project Officer

Mito Stories Project Advisory Group

The Mito Stories Project Advisory Group is an independent body. Its role is to provide advice to the Mito Foundation project team. The Advisory Group is made up of mito community members and researchers, particularly those with an interest in health care and/or rare and genetic diseases.

Headshot of Diane Cass smiling.

Diane Cass

PhD candidate and MCAP member

Headshot of Dr Michelle de Silva smiling.

Dr Michelle de Silva

Headshot of Dr Janet Long smiling.

Dr Janet Long

Headshot of Dr Sandra Staffieri smiling.

Dr Sandra Staffieri AO

Thank you to the Advisory Group members for volunteering their time and sharing their knowledge and expertise.

Ethics

This study has been approved by the Greater Western Human Research Ethics Committee. If you have any concerns or complaints about the conduct of the research study, you may contact the Executive Officer of the Ethics Committee, on (02) 6330 5948 and quote: 2024/ETH00804.

Read more about what ethics approval means.

Contact us to learn more about the Mito Stories Project

Clare Stuart, Policy and Advocacy Manager
Email: mitostories@mito.org.au
Phone: 1300 977 180