There’s plenty going on in the mitochondrial disease community, and you can learn all about our work and the support we offer, and read the latest news articles and blogs from across all areas of our charity here.
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Support
2 December 2023
To mark National Grief Awareness Week (2nd-8th December) we spoke with Consultant Clinical Neuropsychologist Dr Ben Marram about loss and how to deal with it. Because we will all, within the mito community and without, experience grief and loss of some kind during our lives.
Research
9 November 2023
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
Awareness
7 November 2023
Raising awareness about mitochondrial disease, and about The Lily Foundation, is always top of our agenda so we were delighted to accept an invitation to talk about our work at the Annual Cambridge Paediatric Mitochondrial Meeting earlier in November.
Personal stories
6 November 2023
There are nearly one million trustees in the UK, and Claire Gore is one of The Lily Foundation’s. We spoke with her to mark the occasion of Trustees Week (6th-10th November) about why she joined our board and what she gets out of the role.
Research
26 October 2023
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.
Support
Events
20 October 2023
With Newcastle’s last Patient Information Day having taken place back in 2019, it was clear by the attendance this year that mitochondrial disease patients were delighted to have this social engagement back on the calendar. As were we, since it offers us a great chance to raise awareness amongst patients about our support services.
Support
Events
3 October 2023
What better way to feel part of a community than by gathering together for a weekend of shared physical challenges and emotional support in a stunning location. That’s exactly what motivated 18 young adult mito patients to head to the beautiful Lake District for the Lily Young Adult Weekend recently.
Awareness
27 September 2023
A huge thank you to everyone who got involved in events before and during World Mitochondrial Disease Week earlier this month, from Lily families and supporters to doctors and researchers.
Personal stories
26 September 2023
Last week, BBC Points West ran a story about team member Sarah, who came across The Lily Foundation back in 2018 after losing her two daughters to mitochondrial disease.
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