Charity aims to raise profile of rare disease during global awareness week
A Surrey mum has made it her life mission to find a cure for the disease that took her daughter's life
Last updated 23rd Sep 2025
A Surrey charity has launched the campaign 'Putting Mito On The Map' to raise awareness for Mitochondrial Disease during World Mitochondrial Disease Week.
The Lily Foundation was founded by Liz Curtis following the death of her daughter Lily to the disease.
The disease affects roughly one in 5,000 however Liz says that she thinks this number doesn't represent the full story.
"We believe that that's probably a tip of an iceberg and that there are many people out there who are undiagnosed or misdiagnosed due to the complexities of mitochondrial diseases, and the fact that it can affect any organ.
It can often be misdiagnosed or completely missed completely."
Liz adds that due to its complexity and rareness, healthcare workers are often unfamiliar with it.
"Quite often I talk to patients who have to become the experts in their condition. More often than not they are admitted to A&E and the staff who are looking after them, have never heard of a mitochondrial disease, don't know how to treat it and can often do things that are detrimental to the patients and and their health."
Liz says that this week can be used as an opportunity to raise awareness for the disease for both the public and healthcare workers.
"Raising awareness not just about amongst the public, but amongst the professionals is hugely important as well
Raising awareness means money and money means research, and research means treatments and treatments hopefully lead to a cure. So ultimately that is why it's important."
"I made it my mission that there will be a cure within my lifetime"
The awareness campaign follows a wave of positive developments in the fight against mitochondrial disease, including the recently announced early successes of mitochondrial donation IVF, and the approval of the first ever treatment for one form of the disease on the NHS.
Following Lily's death in 2007, Liz has made it her life mission to find a cure for the disease. She told us that she is confident it will happen
"I lost my daughter Lily in 2007 and I made it my mission that there will be a cure within my lifetime. So yes, I am hopeful. I'm adamant that we will find curative treatments for mitochondrial disease within my lifetime."