Liz Curtis

Founder & 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

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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


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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

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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. 

Janet Wilson

Digital Communications Manager

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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

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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.