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.
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Research 24 May 2023
As we know all too well, mitochondrial disease is a bit of a mystery. We don’t yet fully understand why it presents differently and progresses differently in individuals, nor do we know how to best treat and ultimately cure it. However we believe that biomarkers could hold the key to better understanding of this rare disease.
Personal stories 17 May 2023
May is National Walking Month, and two people really feeling the benefit of all that fresh air and exercise are Ami and Danny, who lost their baby son Otto to mito, and who have a mountain to climb in his memory.
Research 10 May 2023
We're delighted to read that in a UK first at least one baby has now been born using a pioneering IVF technique known as ‘mitochondrial donation’. This is a huge step forward in the fight against devastating mitochondrial diseases, which are life-limiting genetic conditions for which there is currently no cure.
Events 9 May 2023
It may have been a soggy one at this year’s London Marathon, but the rain didn’t dampen the spirits of our amazing runners, nor those of our rowdy cheer squads who yelled and shouted from beneath umbrellas and waterproofs to spur our athletes along the 26.2-mile course.
Events 4 May 2023
There’s always a sense of anticipation leading up to Lily Fight Night, and this year was no different. Over 350 spectators packed into The Clapham Grand, eager to watch our fundraising fighters, with many more tuning in to enjoy the action via our YouTube live stream. And the evening certainly lived up to expectations!
Awareness 3 May 2023
Did you know that people affected by mitochondrial disease may also suffer from dystonia – that’s a condition where uncontrollable and sometimes painful muscle spasms are caused by incorrect signals from the brain.
Research 21 April 2023
We know all too well how tough it is to get a mitochondrial disease diagnosis here in the UK, even with our wonderful NHS and the support The Lily Foundation offers. So imagine suffering from mito and living somewhere like Zambia, Brazil, India or Turkey – it must be almost impossible to get answers.
Support 17 April 2023
One of the reasons The Lily Foundation exists is to help give a voice to mito patients and their families, to enable them to have a say in the services and support available. A lot has changed in the last 15 years, and we’re proud of the progress we’ve made, but we don’t intend to rest on our laurels, because understanding mitochondrial disease is the key to unlocking effective treatments and that eventual cure.
Personal stories 14 April 2023
If you couldn’t walk, couldn’t see properly and were hampered by a severe lack of energy, climbing a mountain probably wouldn’t be top of your ‘to do’ list. Not so for mito patient Ian, who has set himself the remarkable challenge of summitting Snowdon this summer.
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