There’s plenty going on in the world of mitochondrial disease, and you can learn all about our work and read the latest news articles and blogs from across all areas of our charity here.
From personal stories about families affected by the disease to the latest research projects and plenty more, why not sign up to our newsletters, and follow us on social media, to ensure you never miss a thing.
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Research 26 October 2023
Research is the key to finding treatments and an eventual cure for mito, 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.
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.
Personal stories 9 October 2023
Losing a baby is one of the hardest things any parent will ever go through. To mark the occasion of Baby Loss Awareness Week from 9th-15th October, we spoke with Beth about losing her baby son to mito and how she still carries her grief with her over 13 years later.
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.
Awareness 24 September 2023
Everyone at Lily HQ was delighted to hear the exciting news that our founder and CEO, Liz, was honoured with a National Lottery Local Health Hero Award at The Sun’s recent Who Cares Wins awards.
Personal stories 18 September 2023
Every summer the organisers of the Royal Parks Half Marathon launch their Inspire campaign, sponsored by Royal Bank of Canada, to seek out five inspirational runners, and this year one of their winners is Lily supporter Reanna!
Research 12 September 2023
The landscape around mitochondrial research is changing all the time as new approaches are considered and new projects undertaken. One such project is a trial using stem cells to treat muscle damage in mitochondrial myopathy patients, and we spoke with Bert Smeets, Professor of Clinical Genomics at Maastricht University, about how this technology could help in mitochondrial care.
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