Managing the challenges of mitochondrial disease (mito) alongside all other family responsibilities can be daunting. The following webpage is designed to provide useful resources and services to manage your child's journey with mito and help you maintain the energy to focus on your family.

Personal Stories

Rex has a significant disability and some developmental delay – he is unable to walk and talk, requires ongoing assistance with ambulation, dressing, feeding, toileting – he continually surprises his family, against all odds, with his increasing levels of comprehension.

Key Services

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 Parents 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 Physiotherapy options for Children living with Mito Video

Physiotherapy options for Children living with Mito

Video

At a Perth Mito Information Day, Amy Piesse explored best practice physiotherapy options for children living with mito.

Link to Diet and Exercise for Children with Mito Video

Diet and Exercise for Children with Mito

Video

At a Digital Paediatric Mito Information Day, Dr Maina Kava spoke about nutritional and exercise therapies that specialists use to improve the quality of life and health outcomes for children with mito.

Link to Palliative Care - Supporting the Child and Family Video

Palliative Care - Supporting the Child and Family

Video

At a Digital Paediatric Mito Information Day, Dr Martha Mherekumombe shared an overview of paediatric palliative care.

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 Update on Supplements and Treatments for Children with Mito Video

Update on Supplements and Treatments for Children with Mito

Video

At a Digital Paediatric Mito Information Day, Dr Shanti Balasubramaniam provided an overview of the therapeutic approaches used to treat patients with primary mitochondrial disorders.