Thank you to everyone who joined us for the first AussieMit Community Summit on Friday 18 and Saturday 19 November 2022. The two day summit offered an opportunity to engage with mito experts, connect with one another and provide great insights into the realities of living with mitochondrial disease (mito).

Registration is now open for Mito Community Summit 2023.

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We heard from clinical experts about the different aspects of mito and how to advocate for better care.

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We heard from inspiring researchers about their projects that may one day lead to faster diagnosis, improved treatment and cures for mito.

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We heard from brave mito community members who offered a glimpse into their life by sharing their story

Mito Foundation is currently reviewing the feedback from community members and will announce plans for the next summit in the New Year. Until then, please see below the recordings from this year.

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Understanding epilepsy and seizures in mito

Prof Mary Kay Koenig discusses the most common seizures found in children and adults with mito, reviews how and why seizures occur, and the treatment and precaution recommendations.

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Understanding genetics and getting a genetic diagnosis

Emma Celis and Prof David Thorburn break down the complexity of genetics to help you know the different types of variants that apply to mito. They then talk through a range of genetic testing options available and explore how and where to access genetic testing.

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Understanding and managing pain

Prof Toby Newton-John is a Professor of Clinical Psychology and a practising Clinical Psychologist. In this video, Prof Newton-John discusses why we feel pain, the impacts of chronic pain, and the importance of pain management in maintaining quality of life.

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Understanding the causes of mito to improve diagnosis

Prof Zofia Chrzanowska-Lightowlers discussed how her team compares healthy cells against cells of people with various mitochondrial conditions to help uncover what causes mito and guide clinicians to tailor management strategies for individuals impacted by mito.

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Understanding and managing fatigue in mito

Dr Christina Liang is a Neurologist with an interest in neuromuscular conditions. In this video, she discusses fatigue, a common symptom in mito; how and why fatigue presents, and ways to manage energy effectively.

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What to do when you are sick

At the 2022 AussieMit Community Summit, Prof Mary Kay Koenig describes what happens to your mitochondria when you get sick and discussed how to reduce the need to go to hospital.

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The Australian Patient Care Standards in practice

At the 2022 AussieMit Community Summit, Prof Carolyn Sue AM discusses the Australian Patient Care Standards for primary mitochondrial disease published in late 2021. These standards were developed by Prof Sue and a group of 21 mitochondrial healthcare providers to guide health professionals to offer the best possible care for people impacted by mito.