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The Lily Foundation

Supporting the Lily Foundation

The Lily Foundation is a charitable trust that raises money to support the families, and mostly child sufferers, of Mitochondrial disease. It also funds research projects such as The Evelina Children’s Hospital research team and the Genetics Team at Guys and St Thomas’ Hospital.

The Lily Foundation was founded in October 2007, following Lily’s death to Mitochondrial Disease earlier that year (see Lily’s story). When Lily was diagnosed, her parents tried to understand what was happening. They were overwhelmed by medical and scientific literature yet still felt as if they knew nothing. Even with the wonderful support of hospital medical staff, they felt completely alone.

After her death, Lily’s parents and uncle, Jonathan Pearce, spoke about setting up The Lily Foundation and they haven’t looked back.

Lily Anna Merritt was a beautiful little girl and despite being given days to live, she graced this world with eight months of life. The Lily Foundation was built on Lily’s strength and inspired by her fighting spirit.

Although The Lily Foundation was founded in Lily’s memory, it is not for Lily. It is to give hope, answers and support to the many other children and families that face the challenges of this disease today.

Help A Lily Family have a much needed break: as part of their #15more campaign to mark our 15th anniversary, The Lily Foundation are aiming to provide respite breaks for 15 more mito families. Gift £15 today and you can help make that happen!

The total amount raised by our generous customers so far is:


Latest news from The Lily Foundation

Liz Curtis receives MBE

When Liz Curtis set up The Lily Foundation with her family in 2007, her aim was to raise £50,000 to support people affected by mitochondrial disease. 15 years later, the charity has raised £8.5 million, and Liz’s steadfast commitment to improving the lives of mito patients and their families has won her an MBE. 

In October 2023, Liz Curtis was awarded an MBC by Princess Anne at Windsor Castle. Accompanied by her husband, Dave and daughters, Liz commented:

“What an incredible experience it has been, receiving my MBE at Windsor Castle. From the minute we arrived we’ve been made to feel super special, everyone has taken such great care to ensure our day has been a memorable one.

Liz was named as an MBE recipient in the 2021 Queen’s Birthday Honours list, after being nominated by several families who have been supported by The Lily Foundation. Clare Tranter, who lost her first child to the disease, wrote:

“We will always be so grateful to Liz and The Lily Foundation. The support we received from them has been life-changing. Without it, we may never have had the two healthy children we have today.”

Liz’s nomination was also backed by top scientists in the field of mitochondrial disease. Prof Sir Doug Turnbull, formerly Director of the Wellcome Centre for Mitochondrial Research and one of the world’s most respected mito experts, referred to Liz as “an extraordinary woman” who had “transformed the advice and support available for patients with mitochondrial disease in the UK”.

Lily founder honoured at star-studded awards ceremony

Lily founder Liz holding her Who Cares Wins award, flanked by Paralympian Ellie Simmonds and TV presenter Vernon Kay

CEO, Liz, was honoured with a National Lottery Local Health Hero Award at The Sun’s recent Who Cares Wins awards.

The awards, sponsored by The National Lottery and held in partnership with NHS Charities Together, honour those across the health and social care sector who go above and beyond for their patients and causes. This award for Liz is a reflection of the huge progress she and our charity have made in fighting mitochondrial disease since 2007.

After boxing champ Anthony Joshua launched the sixth edition of the awards earlier this year, one of many celebrations to mark the NHS turning 75, the winners were revealed at a ceremony held at London’s Camden Roundhouse on 19th September. The star-studded event was hosted by Davina McCall and attended by judge Joshua, as well as Liz and her partner Dave plus fellow team Lily representatives Clare, Claire and Janet.

The Lily team behind a podium on stage having been presented with the Sun Who Cares Wins award

A number of famous faces and some of Britain’s best-loved charity campaigners were on hand to present the awards at the glittering ceremony, including Prime Minister Rishi Sunak, leader of the opposition Sir Keir Starmer, Gary Lineker, James Corden and Emily Atack.

Liz was given her gong by Paralympian Ellie Simmonds and Radio 2 presenter Vernon Kay. Liz spoke modestly about the award she received: “It was an honour to be amongst such an incredible group of people who spend their lives working to make other people’s lives better, and to celebrate with some of the UK’s best-known celebrities who had given up their time to acknowledge such wonderful work. To be chosen as The National Lottery winner was just immense. I cannot begin to imagine what incredible causes we were up against, but to be chosen was unbelievable, and receiving the award from iconic Paralympian Ellie Simmonds and the legend Vernon Kay was the icing on the cake.”


To visit The Lily Foundation website, please click here.