Liz Curtis

Founder and CEO

Email [email protected]

I will never forget the day that Dave & I were told that there was no treatment or cure for Mitochondrial Disease & that Lily was going to die. After bringing Lily home and spending hours searching for information and support we found nothing and decided to form The Lily Foundation. I gave up my teaching career and started to work for the charity. Thank you Lily for giving us the strength to believe this could work x

Alison Maguire

Head of Research & Finance

Email [email protected]

I became involved with the charity in 2009 after I lost my 4 year old daughter Niamh to Mitochondrial Disease.  This tragedy changed my life and career direction. I decided that supporting other families and using my medical background to ensure the best research was being done into these devastating conditions was what was important to me. I have never looked back.

Clare Stead


Email [email protected]

I am Clare and have been involved with The Lily Foundation from the start. After Lily's funeral Liz was determined to make her little life count and make a difference and asked me if I would create a logo for her new charity...and the rest is history! I create the visual styling and arrange our events and love every minute of my job.

Claire Wright

Family Support Coordinator

Email [email protected]

My family were supported by The Lily Foundation in 2012 when my son Jacob was diagnosed with Leigh's. He sadly died that same year at 16 months. In July 2014 I was privileged to join the team working on digital communications and the Schools Programme. I'm determined that through The Lily Foundation and because of my beautiful boy I will raise awareness of Mitochondrial Disease and give other families hope. 

Michelle Moore


Email [email protected]

I met Alison in 2011 and was inspired by her tireless work for The Lily Foundation, after the tragic loss of her daughter Niamh. I attended various Lily events and was so impressed by them and Liz, who set up this small charity that has achieved so much!  In May 2014 it was an honour to be asked to join the Lily team and work for such a special charity.

Janet Wilson


Email [email protected]

I met Alison in 2011 and soon after met Liz whilst volunteering for a supermarket collection for the Lily Foundation. I was so moved by their stories, having lost their beautiful daughters to Mitochondrial Disease and inspired by their courage and work with the Lily Foundation. Having volunteered for the charity for a number of years I was delighted to be asked to join the team on a part time basis in a fundraising support role in the Summer of 2015. In March 2017, I was asked to take responsibility for our Social Media and this is now my main area of work. I feel very privileged and grateful for the opportunity to be a part of the amazing Lily family.

Dr Lyndsey Butterworth

Science Communication

Email [email protected]

I am a scientist within the Wellcome Trust Centre for Mitochondrial Research at Newcastle University and have worked with Prof Turnbull in the development of Mitochondrial Donation since 2003.  I was given the chance to get involved with some of the patient engagement that took place during the campaign to allow Mitochondrial Donation in the UK, which is when I started working closely with Alison and Liz to help communicate the science behind the technique.  Following on from this, I was over the moon to be asked to join the Lily Team on a part time basis in a science communication role.  This is a fantastic opportunity to continue working with the Lily Foundation and all the families who are supported by this wonderful charity.

Board of Directors

Ben Carter


I'm Ben and have had the privilege of serving on the Lily Foundation Board for the last 3 years, helping this amazing charity tell its story and increase awareness using digital marketing channels. I have a personal connection to mitochondrial disease through some close family friends and I'm proud to be helping Lily battle against this awful disease. During the day I'm a Marketing Director for one of the UK's fastest growing e-commerce companies. I live in Warlingham with my wife, two kids and two lazy dogs.

Jonathan Pearce

Honorary President

I work as a football commentator on BBC's Match of The Day. I am also Lily's uncle former Chairman of The Lily Foundation. In August 2007, just 3 months after Lily died, Liz and I sat on the beach and talked about our vision of setting up a charity. A charity to fund research and support look at us.  I am unbelievably proud of what we have achieved and so proud be a part of this growing charity.

Rupinder Bains


I am Rupinder Bains, the Managing Director of Pinder Reaux & Associates Ltd (a specialist media and sports law firm) and I have been working for the Lily Foundation for the past year, as their legal advisor. This year, I was asked to join the board as their director and simply jumped at the opportunity of being involved in such an amazing charity and working with such a dedicated team.  Whilst being a solicitor and heading up my own company pretty much takes up most of my life, what spare time I have I spend with my two children and long suffering husband!

Susie Saggar


Hi, my name is Suzi and I am proud to have been Lily's godmother. I met Liz when I was four, and we have been inseparable ever since. I was honoured when Liz and Dave asked me to be Lily's godmother. She was an amazing and beautiful little girl. I am a qualified paediatric nurse and I have four children of my own. I am thrilled to be a director of the Lily Foundation as the charity has a very special place in my heart.

John Spyrou


Hi, I am John the newest director of the Lily Foundation. As a lawyer it is easy to get caught up in day to day business without really seeing what is important. Being involved with the Lily Foundation is a way to give something back and be involved in a fantastic cause, that is leading the way in helping children suffering from Mitochondrial disease and hopefully one day finding a cure.

Helen Rider


I am a Managing Director within the financial services industry and more importantly, I am Lily’s Auntie. After Lily was born our family experienced some of it’s saddest and most difficult times. I was inspired by the strength of my tiny niece Lily, who in her short life fought  against her fate to teach us about courage and that no matter how little time we have, we can make a huge impact  if we try. Lily’s spirit has lived on and the Lily Foundation is a ‘can do charity’, who has taken on the unknown and is winning. 

John Symons


Having been fortunate enough to have a great friendship with Jonathan Pearce following acting for him as his accountant since 1989, when approached by Jonathan to be a founder member of the Lily Foundation I believed it to be a great opportunity to get involved 'and give something back in life'. I was also confident that I could help spread the word about our charity, by my own clients becoming interested and supportive of such a worthwhile cause. 

Sarah Povey


This charity means business – it’s going places.  I love that.  If the determination, commitment and enthusiasm from all those involved with this charity is anything to go by, the mission will be accomplished.  It’s just a matter of time. I live in Surrey with my boyfriend John  – also an avid supporter of this fabulous charity & the person who introduced me to Lily’s family - and my naughty dog called Ernie. I’m also the UK Marketing Manager for an energy company.