What we've achieved

Funding medical research leads to new treatments, improved diagnosis and ultimately increases the chance of finding a cure for mitochondrial disease. We currently support research initiatives at Guy’s and St Thomas’ (Evelina Children’s Hospital), Newcastle University, Great Ormond Street Hospital (Institute of Child Health) and Sir John Radcliffe Hospital in Oxford.

In 2016 we launched a £600,000 grant scheme to stimulate new research into mitochondrial disease. The scheme provides up to £200,000 per year to the most innovative and promising studies over a three year period. Funding applications are vetted by an independent medical review board. 

The Lily Foundation has developed strong working partnerships with the UK's leading mitochondrial research centres, including NHS and Wellcome Trust institutes. In addition to funding research we also play a vital role in linking patients, doctors and researchers, sharing information and helping to facilitate patient testing programmes. 

Lily Exome Sequencing is a groundbreaking diagnostic technique whereby 1000s of genes can be analysed simultaneously, instead of one at a time as was previously the case. The time taken to locate the faulty mitochondria that cause mitochondrial disease has been dramatically reduced, resulting in faster and more accurate diagnosis. Once they know the precise source of mitochondrial disease in their family, patients are empowered to make important life decisions, for example in the area of family planning. Healthy children, free from mitochondrial disease, have been born thanks to this advance.

In 2015, The Lily Foundation successfully lobbied to change UK law on mitochondrial donation, an IVF technique that makes it possible for women with some forms of mitochondrial disease to have children who don't have the condition. Jane Ellison, Parliamentary Under Secretary for the Department of Health at that time, said: "I want to pay tribute to the Lily Foundation, a charity founded by families who have lost their children to serious mitochondrial disease, and who have shown us the human suffering behind this scientific advance."

We currently provide support to over 1000 families in the UK whose lives have been affected by mitochondrial disease. The support we offer can include emotional caregiving, advice and information, patient-doctor networking and financial help to buy specialist equipment. Before The Lily Foundation there was no dedicated service of this kind for mitochondrial disease patients in the UK. 

When a child is seriously ill in hospital it's important that their family is close by. We have recently been working in partnership with hospitals to fund purpose-built accommodation that makes it easier for families to be together during difficult times. 

Living with mitochondrial disease is a daily battle, and over time the strain can become hard to bear. We work in partnership with Center Parcs to offer families much-needed short leisure breaks where they can relax, recover and enjoy quality time together. 

The Lily Wish Fund is a grant scheme whereby we donate 50% of the cost of items such as adapted buggies, trikes, all-terrain pushchairs. Such items are essential for mobility, independence and child development but are not available through the NHS. 

Events such as the Lily Family Weekend and Lily Charity Ball help families affected by mitochondrial disease to connect with others in their situation, and feel less isolated. Many parents of mito children look forward to these occasions as a rare chance to relax, share information and meet with medical professionals in an informal environment. It's a valuable experience for everyone.