Every other day in the UK, a baby is born who may develop serious mitochondrial disease
Mitochondrial disease, or ‘mito’, is a rare, complex and difficult-to-diagnose genetic disorder that affects people in very different ways. It can affect any organ at any age, and often occurs in babies and young children. There is currently no cure, but we’re working hard to change that, and are the largest charitable funder of mitochondrial research in Europe.
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 with mitochondrial disorders, but has the potential to benefit millions of others too.
That’s why, despite being a little-known disease, mitochondrial disease could be the key to some of the most important medical breakthroughs of our time.
At just 16 years old, Elinor faced challenges most of us will never fully understand. Living with mitochondrial disease – a rare, progressive and currently incurable condition – she experienced pain, exhaustion and uncertainty every day.
Despite her diagnosis, Elinor was full of spirit, strength and insight. She was determined to live her life with courage, and to help others understand what it truly means to live with mito.
This is her story.
Help us to support patients like Elinor, raise awareness of mitochondrial disease and fund research into treatments and a cure.
Help us to fight mito and find hope for everyone affected.
There’s real power in people coming together with one goal: to make a difference in the fight against mitochondrial disease. That’s exactly what happened at Portsmouth High School, where the school community united in a year-long fundraising campaign that’s raised over £13,000 for The Lily Foundation.
There’s promising news for the mito community – Khondrion have secured major funding to support the final clinical trial of a potential new treatment targeting a specific genetic form of mitochondrial disease. With so much research happening globally, it’s always exciting to see a project moving closer to delivering real impact.
“I couldn’t save my two daughters from mitochondrial disease, but their memory drives me to help others and fight for a brighter future,” writes Sarah Moore, our courageous Corporate Fundraising Manager, who turned heartbreak into hope with a skydiving challenge for The Lily Foundation.