MitoCast

Kearns–Sayre syndrome, or KSS, is a rare type of mitochondrial disease, mito for short. It usually starts before the age of 20. KSS often affects the muscles around the eyes. It can also affect the back of the eye, which may change night vision or side vision. Some people may also have heart symptoms.

In this episode, we talk through what KSS can look like day to day, and how it can overlap with chronic progressive external ophthalm...

Chronic progressive external ophthalmoplegia, or CPEO, is a type of mitochondrial disease (mito) that most often affects the muscles around the eyes. Some people only have eye symptoms. Others may also have things like muscle weakness, getting tired quickly with activity, or swallowing problems.

In this episode, we talk through what CPEO can look like day to day, why diagnosis can take time, and why you may hear more than one name ...

This episode shares key tips from Dr Shanti, a metabolic geneticist. She explained why regular checks help people with mito stay safe and supported.

Main points:

• Check hearing, heart and eyes often.
• Check vitamin levels and nutrition every six to twelve months.
• Watch for seizures, headaches or other changes.
• Manage fatigue with pacing, gentle activity and regular meals.
• Look after mental health and ask for help early.
• Monitoring helps...

This episode shares key points from Dr Isabelle Adant, a paediatrician and metabolic fellow who supports people living with mito. She explained simple ways food can help with energy, muscles, bones and gut comfort.

Her main tips were clear:

• Choose more complex carbs for steadier energy.
• Include protein across the whole day, not just at dinner.
• Make sure you get enough calcium and vitamin D for bone strength.
• Drink enough fluids ...

Momentum in mitochondrial disease (mito) research is building, and this episode brings you the February Mito Community Newsletter in a clear, listener-friendly way, from progress in clinical studies and approvals, to the practical supports and community actions that help turn momentum into access in Australia.

In this episode, we share an update from Mito Foundation CEO Sean Murray, spotlight Rare Disease Day and ways to take pa...

This episode shares updates from Dr Serge Geara, neurologist and mito fellow at NeuRA. He explained why mito is hard to treat and what new research is happening.

Key points:

• New treatments like elamipretide, BIO101, KL133, REN001, NV354 and zagociguat are being studied.
• Research is early and still testing safety and effect.
• Biomarkers may help track mito in the future.

The full recording, slides and written summary of t...

From advocacy and research to practical supports, this episode shares the key updates shaping the year ahead for the mito community.

In this episode, we walk through highlights from the January community newsletter, explain what’s happening behind the scenes at Mito Foundation, and share where to find trusted support and resources. It’s for people living with mito, families, and anyone who wants to stay informed about Mito Foundatio...

This episode shares key points from a panel led by Clare Stuart, with speakers Lani Quirk, Jessica Stevenson, Dr Sebastian Lush and Monique Alves. They explained how trials work and what they mean for people living with mito.

Main messages:

• Trials test if new treatments are safe and useful.
• Not everyone will be eligible, and trials take time and effort.
• People’s lived experience helps shape future treatments.

The full r...

This episode shares key points from Dr Christina Liang, a neurologist who supports people living with mito. She explained what we know about supplements, what we don’t know yet, and how to make safe choices.

Her main tips were simple:

• Check and treat basic low levels first (vitamin D, iron, folate, B12).
• Be careful with high-dose vitamin C and vitamin B6.
• Try one supplement at a time and track one symptom.

The full reco...

This episode gives a short overview of the 2025 Mito Community Summit. People living with mito, families, health professionals and researchers came together for two days of learning and support.

Main points:

• The Summit covered supplements, gut health, nutrition, clinical trials, emotional wellbeing and care standards.
• Speakers shared simple, practical ideas to help with daily life.
• Many people said the best part was meeting oth...

Living with mito means looking after your whole self — your body, your relationships, and your mind. This episode explores how mental health and wellbeing are part of that balance.

It covers simple, practical ways to care for your mental health, what to do when things feel hard, and where to find trusted support, including the Mito Foundation Wellbeing Hub and Beyond Blue.

The information in this episode is based on Mito Foundation r...

This episode gives you an overview of the key updates from Mito Foundation’s November newsletter. We touch on global progress in new treatments, early steps in mitochondrial donation, highlights from the Mito Community Summit, and a few summer wellbeing reminders.

You’ll hear the latest news, what it means for people living with mito, and where to find more details if you want to dive deeper. To stay connected, subscribe to MitoCast...

Exercise can help your body make and use energy more efficiently. But knowing where to start can be tricky. In this episode, we talk about how movement supports your mitochondria, ways to begin safely, and tips to make exercise part of everyday life.

It covers how to build strength, balance, and endurance at your own pace, with insights from people living with mito andguidance on working with health professionals who understand your...

Fatigue is one of the most common and challenging symptoms of mito, but it’s also one of the hardest to explain. In this episode, we explore what fatigue really means, how it feels, what causes it, and what can help.

It covers the science behind fatigue, insights from people living with mito, and current research into sleep and energy. You’ll also hear practical tips for managing fatigue day to day, and ideas for talking with your h...

Have you ever left a medical appointment thinking, “I forgot to ask half my questions”? You’re not alone.

In this episode of MitoCast, we talk about how a little preparation can help you make every appointment count.

Whether you’re an adult living with mitochondrial disease or supporting a child, being organised before you walk in can make a big difference.

We share practical tips on what to do before, during, and after your appoint...

Mitochondrial disease, or mito, can affect many parts of the body in different ways. Common symptoms include weak muscles, vision loss, seizures, gut problems, and heart rhythm changes.

In this episode, we explain what these symptoms mean and how they vary between people. We'll also cover why spotting them early matters. MitoCast is for people living with mito, their families, and anyone who wants to understand how mito can affe...

Genetics can feel like a big, complicated subject, but understanding the basics makes it much clearer. In this episode, we take you on a step-by-step journey through cells, DNA, genes, and chromosomes, and show how they all connect to mito.

You’ll learn how genetic changes in nuclear DNA and mitochondrial DNA can affect energy production, why inheritance patterns matter, and how genetic testingworks in Australia. We also look at th...

When you’re living with mitochondrial disease (mito), the health system can feel complex and overwhelming. This episode explores how to build a supportive care team, access services, and keep care coordinated.

It covers what a care team is, who might be involved, and how specialists, GPs, paediatricians, genetic health professionals, and allied health can work together to support you. You’ll also hear about practical tools like ...

Mitochondrial disease, or mito, affects thousands of Australians, yet many people have never heard of it. In this episode, we unpack what mito is, how it impacts the body,and what it means for people living with mito and those who want to learn more.

It covers the basics of how mitochondria work, what happens when they don’t make enough energy, common symptoms, different types of mito, and how it is diagnosed andmanaged. Whether you...