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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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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.

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.

Events Fundraising
14 March 2023

15th anniversary Lily Ball raises over £75,000

We may have just had The Oscars but there was just as much glitz at The Lily Foundation's annual charity ball, which had its share of dazzling dresses, glamorous guests and moving speeches. But the real stars of the show were the young adults who stole everyone’s hearts with their poignant accounts of the reality of living with mitochondrial disease.

Research
13 March 2023

Research focus: TRANSFORM study update

The Lily Foundation has been funding a study into a potentially life-changing new treatment for mitochondrial disease patients affected by epileptic seizures. Here to update us on progress is Katrin Bangel, part of the research team at the Wellcome Centre for Mitochondrial Research in Newcastle.