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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 recording, slides and written summary of this session are on our website:
www.mito.org.au/resource/video/mito-community-summit-2025-clinical-trials-panel/
To stay connected, subscribe to the Mito Foundation Podcast. For support, call the Helpline on 1300 977 180 or visit mito.org.au.
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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 ot…
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 stil…
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 i…
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 p…
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.
I…
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