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News

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
4 May 2020

Lily launches mental health service for young mito patients

The Lily Foundation has launched a mental health service to support young people who are struggling with the psychological impact of living with a mitochondrial disease.

Research
12 March 2020

Research Focus: Leigh Syndrome

The Lily Foundation has teamed up with other mitochondrial disease charities around the globe to co-fund a promising new study into Leigh Syndrome at the Wellcome Centre for Mitochondrial Research.

Research
12 March 2020

IMP updates list of medicines to be used with caution for mito patients

An updated list of medicines to be used with caution by patients with primary mitochondrial diseases has recently been published by International Mito Patients.

Personal stories
3 March 2020

"I get so much out of volunteering for Lily"

Katie Curtis, Lily's auntie, has been supporting The Lily Foundation for 13 years. Here she talks about why she's still as motivated as ever, and how it feels to take a punch on the nose for a good cause.

Personal stories
12 February 2020

Living with mitochondrial disease

When a child has severe disabilities, the support provided by an attentive sibling not only helps take the strain off busy parents, it can also work developmental wonders. We talked to Jemma Gregory about the bond between her children Isabelle, 8, who has a mitochondrial disorder, and Isaac, 10, who is devoted to her care.