Managing the challenges of mitochondrial disease (mito) alongside all of life's other responsibilities can be overwhelming. The following webpage is designed to ease this stress by providing useful resources and services to help manage your everyday life with mito.

Personal Stories

Thomas Dow (Tom) was born in 1986 and, except for childhood asthma, was healthy, happy and very cute with a caring and engaging nature. Tom reached his childhood milestones quite early; walked at 12 months and talked by 18 months. At the age of four, Tom started to walk differently and upon a visit to the doctor, the devastating journey of medical investigation began which identified rapid deterioration, illness and, eventually, severe disability.

Key Webpages

Call the Mito Helpline to talk to a support officer for general advice, assistance in seeking a referral or more information on Mito Foundation support services.

Consensus-based recommendations for medical professionals who diagnose and manage patients with mitochondrial diseases

Attend a support event in your local area or online, including Mito Information Days, Mito Meet-ups and Mito Connect Calls to keep you informed and connected.

The Mito Registry collects important information about Australians with confirmed or suspected mito for the purpose of research into treatments and cures.

Helpful Resources

Link to Making Mito Mighty: Finding treatments for mito Video

Making Mito Mighty: Finding treatments for mito

Video

At a Melbourne Mito Information Day, Cameron McKnight discussed how he has used human stem cell models of mitochondrial disease to study promising drug treatments for heart muscle cells.

Link to Mito Connect Call: Finding Quality NDIS Services & Supports Video

Mito Connect Call: Finding Quality NDIS Services & Supports

Video

In this Mito Connect Call, Ruth Yuthok (Mito Foundation’s NDIS Navigator) discusses finding quality NDIS services and supports.

Link to Tips on how to strengthen your case for NDIS support Video

Tips on how to strengthen your case for NDIS support

Video

At a Perth Mito Information Day, Tammy Whait covered ways to strengthen your case for NDIS support when applying for the first time or approaching a plan review.

Link to Diagnostics changes from genomics and new technology Video

Diagnostics changes from genomics and new technology

Video

At a Perth Mito Information Day, Prof. David Thorburn provided an overview of the causes of mitochondrial disease and how the diagnostic process has been changed by genomics and other new technologies.

Link to Demystifying Palliative Care – it’s more Video

Demystifying Palliative Care – it’s more

Video
Carolyn Vaughan (Public Health Palliative Care Unit, La Trobe University) led a discussion to demystify Palliative Care to improve our understanding of the many benefits of the service.
Link to How to Ask For Support  Video

How to Ask For Support

Video

Shelley Beverley (MCAP member and psychologist) provides guidance for the important conversation on mental health and how to get the support you need.

Link to Mindfulness to Manage Your Health and Life Changes Video

Mindfulness to Manage Your Health and Life Changes

Video
Carolyn Uhlmann (Psychologist), provides great tips to manage the health and wellbeing changes that come with mito through practical mindfulness techniques.
Link to Reproductive Options Fact Sheet

Reproductive Options

Fact Sheet

Preconception genetic counselling is recommended to couples who are planning to start a family. This fact sheet walks you through the process and available options.

Link to Considerations for Mito Patients Undergoing Surgery Fact Sheet

Considerations for Mito Patients Undergoing Surgery

Fact Sheet

This fact sheet explores what you need to consider if you are about to undergo surgery. Anaesthetic can cause complications so it’s best to consult a mitochondrial disease specialist.