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Stay connected with the mitochondrial disease community

Discover the latest updates from The Lily Foundation and the wider mitochondrial disease community. You’ll find news, personal stories, research updates and insights into the vital support we provide for those affected by mitochondrial disease.

From inspiring stories of families living with mitochondrial disease to breakthroughs in mito research and much more, there’s plenty going on. Sign up to our newsletters and follow us on social media to stay informed and connected – don’t miss a thing!

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Research
29 February 2024

Delving deeper into the diagnostic journey

What’s it like getting a diagnosis for, and living with, a disease like mitochondrial disease that few people, even within the medical community, have heard of? These are questions that Dr Stella Johnson from Cardiff University focused on in her recent Masters, and when she needed some help with her study, she knew just where to turn.

Research
22 February 2024

Research review: Vestibular dysfunction

Back in 2020 we funded a research study aiming to develop a framework to help identify the cause of balance problems in people with mitochondrial disease. That study is now complete, and the questions in the framework have been shown to accurately rule in or out vestibular causes of imbalance and dizziness in mito patients so that they can access appropriate treatment.

Research
9 November 2023

Lily-sponsored researcher wins prize for mitochondrial disease thesis

Back in December 2019, we were delighted to announce the latest addition to our Lily-funded mitochondrial disease research team, PhD student Yasmin Tang. Nearly four years on, not only has Yasmin completed her PhD but she’s been awarded the Faculty Doctoral Thesis Prize for her studies. Proof that we only back the best here at The Lily Foundation!

Research
26 October 2023

Something EPIC has arrived

Research is the key to finding treatments and an eventual cure for mitochondrial disease, and we believe the real experts are the people living with the disease. That’s why we’re launching a new Expert Patient Input Committee – in short, EPIC: a committee made up entirely of people affected by mito who are willing to share their experiences to help shape research, clinical care and treatments.