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.
Exploring hope for emerging mito therapies
Over the next 6–9 months, we are undertaking a new Mito Stories Project study to better understand how families experience and think about the prospect of emerging therapies.
Several therapies for specific types of mito are progressing through clinical development and may soon move toward approval and access pathways in Australia.
Your experience can help ensure that decisions about these therapies reflect what truly matters to people living with mito.
We are inviting people with lived experience of the following conditions, as well as clinicians who support them, to share their stories.
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Thymidine Kinase 2 deficiency (TK2d)
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Barth Syndrome
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Long Chain Fatty Acid Oxidation Disorders (LC-FAODs) including CPT I, CACT, CPT II, VLCAD, TFP, and LCHAD
You can share your story anonymously. We are committed to protecting your privacy. This project has ethics approval.
Your story can drive change
The Mito Stories Project is our lived experience research project. It gathers, analyses, and shares insights from mito community stories. By taking part, you can influence change for the Australian mito community.
We invite you to share your story in a one-time interview that will contribute to multiple outcomes.
Personal stories are a form of detailed and robust data. Through the power of these collective insights, we can help others better understand and respond to our community's needs.
The project has formal ethics approval and will use rigorous research processes. It is being guided by the Mito Stories Project Advisory Group. You can find out more about the Advisory Group’s role below.
The project focusses on different topics related to the impacts of mito. Express your interest in sharing your story.
Mito stories reports
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.
Frequently asked questions
Meet the project team
Mito Foundation staff
The Mito Foundation Advocacy and Engagement team, listed below, are leading the Mito Foundation project team. They are advised by the Mito Stories Project Advisory Group.
Clare Stuart
Advocacy and Engagement Manager
Hania Hussain
Community Insights Research Analyst
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. They guide the Mito Stories Project to help ensure research is relevant and beneficial to the mito community. 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.
Melissa Barnett
Diane Cass
Dr Michelle de Silva
Danielle Green
Dr Janet Long
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.
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
