Our vision is for a world in which every mitochondrial disease patient has a voice and access to treatment, support to improve their life and, ultimately, a cure.
Together we’re navigating the complexities of mitochondrial disease; today raising awareness of mito across the globe; tomorrow unlocking the cure through pioneering research; forever supporting the mito community and empowering everyone to make a difference.
What is mitochondrial disease?
Every other day in the UK, a baby is born who may develop serious mitochondrial disease.
Mitochondrial disease, or ‘mito’, is a rare genetic disorder that can affect people in very different ways. Symptoms can start at any age and can involve any organ in the body. There is currently no cure for mito, and in some cases, it can be life-limiting. However, treatments to manage symptoms are available and there is active research taking place globally to find a cure. Thanks to research, we are learning more daily about mito.
Mitochondrial dysfunction has been identified as a key factor in other more common diseases including dementia, Parkinson's disease, epilepsy and cancer. The research we fund and support not only holds promise for individuals affected by mitochondrial disorders, but also has the potential to benefit millions of others.
That’s why, despite being a little-known disease, mito could be the key to some of the most important medical breakthroughs of our time.
£10m
Raised since 2007
1200
Families supported
£200k
Donated to patients
Over 20
Research projects funded
See our work in action
Being diagnosed with mitochondrial disease can be not only a frightening and upsetting time, but it can also be very lonely. Because mito is so rare, sometimes friends and family just don’t understand, so it’s hard to find people who are in the same situation to talk to, to share hopes and fears with, and find support.
And that’s why we exist, for patients like Bal. Here’s her story...
Last month, Alison and Maria from the Lily team attended the 8th Mitochondrial Medicine conference, seizing the opportunity to raise awareness of our work and in particular the importance of patient organisations like The Lily Foundation in mitochondrial research.
Once upon a time, there was a beautiful ball held in a fabulous hotel for a group of very special people. That time was last Saturday, and that occasion was our annual charity ball. Read our review of this fairytale fundraiser, held at London’s Park Plaza Riverbank Hotel and attended by almost 300 glamorous supporters.
Time is the key to so many discoveries in science, technology, engineering and maths, so it makes a fitting theme for this year’s British Science Week (8th-17th March). Find out how time is playing a key part in both the diagnosis of mitochondrial diseases and the evolution of the technology involved.