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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.

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.

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.

Support Personal stories
30 March 2023

No one’s voice should go unheard

What would you do if you knew that one day you’d no longer be able to speak, talk to your family or chat with your friends? That’s the reality for mito patient Bal, whose voice is rapidly deteriorating, and who’s ready to spread the word about the positive effects of voice banking.

Research Personal stories
21 March 2023

How our latest partnership is driving research forward

The Lily Foundation is at the forefront of seeking treatments and a cure for mitochondrial diseases, with collaboration essential in driving that research forward. One exciting partnership is with The PolG Foundation, so we spoke with their co-founder Julie about how the foundation was born and how the relationship has blossomed.

Personal stories
8 March 2023

“I’m just trying to keep everybody happy – myself included”

Fortunately, these days we’re surrounded by women setting incredible examples to us, balancing their careers with bringing up children alongside all the other demands of modern life. But what about when one of those children has a mitochondrial disease diagnosis?

Personal stories Awareness
13 February 2023

What's it like to be rare?

It’s Rare Disease Day on February 28th, so to shine a spotlight on the millions of people around the world living with a rare disease, we asked mitochondrial disease patient Amy to tell us what it’s like to be rare.

Personal stories
7 February 2023

The medical device that’s transformed Ella’s life

For some parents, learning their child needs to use a feeding tube can make them feel anxious and overwhelmed. As part of Feeding Tube Awareness Week we’re sharing a heart-warming story that showcases the incredible benefit it’s brought to one young mitochondrial disease patient.

Research Personal stories
30 January 2023

Paving the way in rare disease research

The loss of her baby cousin to mitochondrial disease at only three months old inspired Natasha to dedicate her medical research to this incurable genetic condition that she and her family knew so little about.

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