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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 Personal stories
9 October 2024

Breaking the silence about the lives that could have been

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 mitochondrial disease and how she still carries her grief with her over 14 years later.

Personal stories Awareness
17 September 2024

Raising awareness of mito in memory of Sophie

When they heard the heart-breaking news that their young pal Sophie had passed away from mitochondrial disease, a group of schoolchildren set out to honour their friend and raise awareness of the genetic condition which so many people are still unaware of.

Personal stories Awareness Fundraising
24 August 2024

Running in the family

When baby Lily came into the world 18 years ago, no one could have guessed the legacy she would leave behind. To commemorate what would have been her 18th birthday this month, her family have signed up to take on a very special collective challenge, and they need your support to get them over the line.

Personal stories Awareness
4 July 2024

A journey through mitochondrial disease

When the debilitating symptoms of his mitochondrial disease began to manifest themselves, Paul struggled to come to terms with the impact on his physical and mental health. But an unexpected friendship, and a discovery of art therapy, have helped him to live with his diagnosis.

Personal stories Fundraising
25 June 2024

How people power is spreading the word

When his son Jude was diagnosed with mitochondrial disease, like so many other parents Dale had never heard of the condition. But since that day he’s made it his mission to spread the word about our work, doing more than his fair share in the fight against mito.

Personal stories Awareness
6 June 2024

Painting a picture of mitochondrial disease

We know mitochondrial disease inspires incredible bravery in patients and their families, dedicated fundraising in our supporters and pioneering work in the research lab. But this is the first time we’ve seen the disease inspire the conception of a beautiful piece of art.

Research Personal stories
10 May 2024

Heartfelt thanks to Alison, our departing Head of Research

This month, The Lily Foundation bids a sad farewell to one of our long-term team members and supporters, Alison Maguire. Founder and CEO Liz Curtis pays tribute to the hard work, dedication and passion Alison has shown over the last 12 years, and the legacy she leaves in mitochondrial disease research.

Personal stories
7 May 2024

Living with mitochondrial disease and deafness

Jojo was diagnosed with mitochondrial disease as a teenager, and one of the symptoms he suffered was losing his hearing. It was a frightening and lonely experience, he writes – until some amazing technology came to the rescue.

Personal stories Awareness
23 April 2024

Running to spread the word about mitochondrial disease

Often taking on a charity challenge means attempting a one-off event such as running a race or climbing a mountain. But once wasn’t enough for Lily supporter Darren, who took on the incredible feat of running a half marathon every day for a month.

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