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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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Awareness Fundraising
8 July 2019

Jackpot! Amazing Alan wins big for The Lily Foundation

TV star Alan Davies has won £20,000 for The Lily Foundation after scooping the jackpot on Tipping Point: Lucky Stars. The money will help fund research and support patient affected by this incurable genetic condition.

Personal stories
5 June 2019

Carers Week, 10-16 June

My daughter has mitochondrial disease and being her full-time carer is heartbreaking – sometimes I just want to be her mum, writes Angela Jakubowski

Research
28 May 2019

Lily announces partnership with Wellcome Centre for Mitochondrial Research

The Lily Foundation and the Wellcome Centre for Mitochondrial Research (WCMR) have announced a strategic partnership to improve the lives of people affected by mitochondrial disease.

Personal stories Awareness
17 May 2019

Walking for Sebby

After losing her young son to mitochondrial disease, walking hundreds of miles in his memory helped Melissa Streete cope with grief and raise awareness about the condition that took his life.

Research
14 May 2019

PREFER: Patient preferences in new drug research

Input from patients and caregivers has been helping to guide the development of potential treatments for mitochondrial disease as part of the ongoing PREFER study. Dr Cecilia Jimenez-Moreno, the PREFER clinical case study lead based at the Wellcome Centre for Mitochondrial Research at Newcastle University, tells us what this means and what happens next.