Fighting mito,
finding hope.

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!

Filter by category:

All Articles Support Research Events Personal stories Awareness Fundraising Fitness

Research
22 October 2024

Patient engagement takes a comic twist at mito meeting

Earlier this summer, Maria and Katie from The Lily Foundation represented the charity at a MITGEST training event focused on mitochondrial disease research. It was a fantastic opportunity for us to highlight the importance of the patient voice in research, and one that took a comic twist…

Support
18 October 2024

Rare disease ‘passport’ launched for mito disease patients

Patients living with mitochondrial disease deal with many unique and complex health challenges. They can face multiple medical appointments or even emergency hospital visits, sometimes with healthcare professionals unfamiliar with mito. We’re delighted to unveil a simple but brilliant solution that empowers mito patients.

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.

Awareness
30 September 2024

Putting mito on the map

A massive thank you to everybody who got involved in this year’s awareness campaign as part of World Mitochondrial Disease Week. A host of activities took place up and down the country thanks to so many of our supporters embracing our mission to put mitochondrial disease on the map.

Research
26 September 2024

Investing in research to improve balance issues in mito patients

Mitochondrial disease often causes balance issues which can lead to patients falling. That can mean additional pain and distress, so we’re investing over £70k in a new research study to develop wearable technology that could enhance balance and ultimately improve quality of life for patients.

Events Awareness Fundraising
25 September 2024

‘March of the Day’ raises awareness and funds to fight mito

Last week comedian Kevin Day embarked on a mammoth ‘March of the Day’ challenge, walking 63 miles across London via thirteen football grounds. His aim was to spread the word about mito during global awareness week, but would his feet hold up and would he make it all the way? Find out more…

Research
24 September 2024

Funding research and finding hope for MNGIE patients

Our commitment to funding research into treatments for mitochondrial disease is unswerving, so we’re excited to announce that we’ve just invested nearly £80k into a new project that could potentially alleviate symptoms for patients diagnosed with MNGIE.

Awareness
20 September 2024

‘Light Up for Mito’ on Saturday 21st September

Every September, hundreds of buildings around the world light up green for World Mitochondrial Disease Week. Why not help us put mito on the map this year by asking a building or landmark in your local area to take part?

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.

Previous 1 2 3 4 5 6 7 … 31 32 33 Next

News

Stay connected with the mitochondrial disease community

Log in to your Lily account