The Lily Foundation logo featuring a butterfly, hearts and an 'x' for a kiss

Fighting mito,
finding hope.

Young adult in her wheelchair being pushed by her mum over a forest assault course Young adult in her wheelchair being pushed by her mum over a forest assault course

Our achievements

Read all about our charity’s achievements since we began our fight against mitochondrial disease back in 2007.

Since we started out in 2007, we’ve raised a staggering £10 million and accomplished a lot, growing over the years to become the UK’s largest mitochondrial disease charity today. Here are some of our landmark achievements:

Invested over £3 million into world-leading research

Funding medical research leads to new treatments, faster diagnosis, improved prognosis and ultimately increases the chance of finding a cure for mitochondrial disease. 

Every year we put out a research call and submitted projects are sent to our International Peer Review Board. Through this call we’re committed to investing up to £200,000 per year to stimulate new research into mitochondrial disorders, and offer research grants to UK academic researchers and institutions that can demonstrate their commitment to discovering innovative treatments for mito.

You can read more about the research we are currently funding over on our Lily-funded research projects page.

Partnered with the UK’s top mitochondrial research centres

We’ve 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. 

Launched the Lily Exome Sequencing project

Back in 2007, getting a diagnosis of mitochondrial disease was really difficult, with genes being tested one at a time at different labs across the world. We now know that there are at least 300 different genes that can be responsible for causing mitochondrial disease, making the diagnostic journey incredibly long and expensive. That’s why one of our first initiatives was to fund a national mitochondrial disease gene-testing service.

The Lily Exome Sequencing Project allowed scientists to test hundreds of genes at the same time. It was the first UK-wide project of its kind for a rare disease and is one of our proudest achievements as a charity to date, enabling a diagnosis for over 70% of families who were tested. The programme was so successful it’s now been taken up by the NHS – something we’re hugely proud of.

Changed the law on mitochondrial donation

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 the 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.”

Supported over 1200 families affected by mitochondrial disease

We currently provide support to over 1200 families in the UK whose lives have been affected by mitochondrial disease. The support we offer can include emotional care-giving, practical advice and information, as well as patient-doctor networking. Before The Lily Foundation existed there was no dedicated service of this kind for mitochondrial disease patients in the UK.

Donated over £200,000 in care equipment and respite breaks

The Lily Wish Fund is a grant scheme that was set up to provide financial help for things mitochondrial disease patients might not normally be able to afford. Specialist equipment such as adapted buggies, trikes and all-terrain pushchairs are essential for mobility, independence and child development but are not available through the NHS. We also offer assistance to pay for changes to a home or garden to ease accessibility issues, or to help fund a much-needed weekend away or respite break where a family can relax, regroup and enjoy quality time together or adjust to a new future ahead.

Hosted annual meet-ups and events for our families

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

Launched the Lily Precision Diagnostics project

Following the launch of our Lily Exome Sequencing project in 2012, we haven’t stopped in terms of trying to improve diagnosis of patients with mitochondrial disease. Since then, bioinformatic techniques have evolved, and in late 2022 we launched a brand new diagnostics project, in partnership with the top UK centres for mitochondrial disease research at Oxford, London and Newcastle, for those patients who remain undiagnosed despite going through NHS testing. Because we believe all mitochondrial disease patients should have access to a confirmed genetic diagnosis.

Introduced our UK Mito Patient Registry

Our Mito Patient Registry, an online database for people with mitochondrial disease, is a really important way for us to understand more about this inherited condition. For every patient, parent or carer that signs up, we’re able to build up a picture about how mitochondrial disease affects people, learning more about how their care is managed and what sort of symptoms they present with. This data can then help researchers and doctors develop guidelines for caring for people with mitochondrial disorders and give support where it's most needed, as well as helping them to plan treatments and design trials.