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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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Personal stories Fundraising
17 May 2023

Couple aim for new heights in remarkable fundraising journey

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 mitochondrial disease, and who have a mountain to climb in his memory.

Research
10 May 2023

Celebrating a medical breakthrough that could give affected families hope

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 inherited conditions for which there is currently no cure.

Events Fundraising
9 May 2023

50 fabulous fundraisers smash six-figure sum at London Marathon

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 Fundraising
4 May 2023

Lily Fight Night packs a punch to raise over £18,000

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!

Research Awareness
21 April 2023

We’re making mitochondrial disease a global topic

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

Celebrating 15 years of… patient advocacy

One of the reasons The Lily Foundation exists is to help give a voice to mitochondrial disease patients and their families, to enable them to have a say in the services and support available. Because understanding mitochondrial disease is the key to unlocking effective treatments and that eventual cure.

Personal stories Fundraising
14 April 2023

The mito ‘action man’ with a mountain to climb

If you couldn’t walk, couldn’t see properly and suffered a severe lack of energy, climbing a mountain probably wouldn’t be top of your ‘to do’ list. Not so for mitochondrial disease patient Ian, who has set himself the remarkable challenge of summitting Yr Wyddfa (Snowdon) this summer.

Support
14 April 2023

Your money matters for Lily’s newest recruit

As part of our mission to support families affected by mitochondrial disease, we believe that should cover financial support too. So we’re delighted to welcome our new Benefits Advisor, Chrissy, to the Lily team. We caught up with her to see how she’s planning to help mito patients and their families navigate the tricky topic of financial welfare.

Events Personal stories Fundraising
6 April 2023

Unfinished business at the London Marathon

Three years ago, on the day of her son Harry’s 10th birthday, Donna should have been running the London Marathon, raising funds to help fight mitochondrial disease. But the pandemic was sweeping across the globe and the race was cancelled.

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