Listen to a summary sharing the key updates shaping the mito community right now.
As we begin a new year, I want to thank you for staying connected with us. Your trust and support mean so much.
The end of 2025 and the start of 2026 have been full of quiet, determined work at Mito Foundation. I’ve met with leaders in research and pharmaceutical development to talk about what’s ahead.
Disability supports remain a key focus. As changes to the NDIS continue, we are working to keep mito visible in national discussions. Several of our team sit on working groups for rare disease and disability.
We’re also building support through the RISE Project. This Project aims to help people with rare and progressive conditions navigate the NDIS, making sure support grows as their needs do. Thanks to your stories and those from contributors with other rare conditions, this work is informed by real experiences. What we’ve heard is now shaping practical resources.
Much of this work happens quietly, but your voices are at the heart of it. Thank you for sharing your experiences and for being part of our community.
Sean Murray
CEO, Mito Foundation
A snapshot of what we're working on
The RISE Project progress update
Since launching The RISE Project (Rare and progressive disability: Inclusive support and empowerment) in September, we’ve been listening.
We have heard from people impacted by mito and from people living with other rare and progressive conditions. What they told us was clear and consistent.
Many people face the same problems when using disability supports. They often have to explain their condition again and again. This takes time and energy. It can also be upsetting.
People also spoke about trying to stay independent while still needing help. This balance can be hard. It can often change as symptoms change or get worse. Planning for these changes can feel stressful.
We have brought together these findings in the RISE Project Opportunity Statement. Next, we will start developing practical resources. The resources will aim to:
- Reduce the need to repeat information
- Help people explain how their condition affects daily life
- Support planning as needs change over time.
We thank the rare disease organisations that have contributed to this project so far. This work is supported by a Rare Voices Australia Partner Project Grant as part of the Rare Disease Disability Project (RDDP). The Australian Government funds the RDDP through the NDIS Peer Support and Capacity Building Program.
We’ll continue to share updates as this work progresses.
Driving change in disability supports
Many people living with mito need disability-related supports, but accessing them isn’t always easy, particularly during periods of change within the NDIS.
We advocate for improved access by ensuring the experiences of the mito community are heard by decision-makers. This includes representing the community through national working groups, advocating in collaboration with other rare disease organisations, and submitting evidence to inform policy and guidelines.
This work is making a difference. One recent outcome is the inclusion of therapies such as exercise in new NDIS guidelines, recognising their role in maintaining capacity and slowing progression.
Hear from our clinical fellows
Both Mito Foundation-funded clinical fellows attended - and presented - at the Mito Community Summit in November 2025.
Dr Isabelle Adant, a paediatrician and metabolic felllow, spoke about nutrition for mito. Dr Serge Geara, a neurologist, shared updates on clinical trials. Their work supports improved understanding and care for the mito community.
Watch, listen to, or read a summary of their presentations.
Our Clinical Fellowships funding aims to improve the quality and access to health care for people impacted by mito. They also aim to strengthen clinical research capacity in Australia.
Listen and learn with MitoCast
In the new season, you'll hear insights from expert presentations at the Mito Community 2025. These have been reshaped into short podcast episodes.
MitoCast exists to give you a choice about how and where to learn. It's designed to be:
- Easy to access
- Complex topics simplified
- Perfect for busy days or low-energy moments.
Find all seasons of MitoCast Spotify, or wherever you tune into podcasts.
Starting or returning to school
Starting school or returning after a break is a big step. Children living with mito can benefit from extra planning and support.
The hidden side of mito: mental health
Your brain needs a lot of energy to think, feel, and cope each day. That energy comes from your mitochondria.
When you live with mito, your cells may struggle to make enough energy. This can affect how you think, remember things, and manage emotions or mood. These changes are real, physical, and not your fault.
For some people, mental health changes can be one of the first signs of mito, even before diagnosis.
Others may notice them later, or not at all. Everyone’s experience is different.
Living with mito affects more than your body. Managing symptoms, appointments, and everyday life takes extra effort, especially when energy is low. Many people find it helps to rest, pace themselves, and stay connected with others who understand.
Mental health is an important part of overall health. Australian care standards for mito recommend checking emotional wellbeing as part of ongoing care.
You can learn more and find practical support in our Mental Health and Mito Wellbeing Hub.
