The Lily Foundation was founded in October 2007, by Lily's family. Lily's uncle, Jonathan Pearce believed that Lily's short life had a purpose, and could make a difference to other families.
The Lily Foundation is committed to finding a cure for Mitochondrial Disease through funding research, raising awareness and family support.
There are currently very few effective treatments and no cure available for Mitochondrial Disease.
We are currently supporting research initiatives at Guy’s and St Thomas’/Evelina Children’s Hospital, Newcastle University and Great Ormond Street Hospital/ Institute of Child Health and Sir John Radcliffe Hospital, Oxford.
By funding this work, we hope to enable doctors to get a better understanding of how mitochondria function. This will help identify new disease causing genes and improve the speed and accuracy of diagnosis. This will lead to the development of effective treatment options, techniques to prevent transmission and ultimately to find a cure.
In the UK 10 million people suffer from diseases where mitochondrial disfunction is believed to be involved and yet most people have never heard of it.
We need this to change as without awareness there is no funding, without funding there is no research and without research there is no cure!
It is vital that the medical community are fully aware of Mitochondrial Diseases. We fund training of medical professionals to ensure they have the most up to date information on global advances in this area.
It important to the charity to inspire and motivate the doctors, scientist and fundraisers of the future, so we run a schools awareness programme and if you want us to visit your school, please get in touch.
We are available by phone, email and in person and we help connect families who then support each other.
We also fund family hospital accommodation to help keep parents close to their sick children.
We work in partnership with Child Bereavement UK who can offer bereavement counselling to help families deal with the loss of their child and can put people in contact with advisers to help with benefits advise.