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

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 head up the marketing team, create the visual styling and oversea our events and fundraising and love every minute of my job.

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.

Claire Wright

Operations Manager

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. 

Janet Wilson

Digital Communications Manager

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.

Katie Waller

Science and Patient Engagement Officer

Email [email protected]

I am a qualified children’s nurse and have always been passionate about the potential for research to transform the lives of patients. I started working in clinical research in 2016, so understand the importance of research in providing hope for families affected by rare diseases. I am absolutely delighted to be joining the Lily Foundation and given the opportunity to raise awareness of Mitochondrial Disease. I am looking forward to working closely with patients and families to understand their needs and communicate this to scientists, researchers and industry. 

Abbi Hartfree

Events Manager

Email [email protected]

My name is Abbi and I’m the Events Manager here at The Lily foundation. I completed my education in the Caribbean and moved to the UK to work within events at the age of 16. I have over 7 years of experience within the charity sector including working with the YMCA, various educational foundations and volunteering with fostered young people. I am extremely passionate about raising awareness of Mitochondrial Disease through the exciting events we offer and helping to bring some hope to the families affected.

Bobbie Lloyd

Graphic Designer / Website Manager

Email [email protected]

I'm Bobbie, one of the newest members of the Lily team. While my experience with Mito before arriving here was limited, since joining I've already seen the big difference the team is making. I’ll be responsible for Lily’s design going forward, and I hope my work can help bring more attention to such a good cause!

Sarah Moore

Corporate Fundraiser

Email [email protected]

My name is Sarah and I have suffered the loss of two daughters to this wicked mitochondrial disease. At that time there was no support for families and so very little known in the medical world.  When I found out about The Lily Foundation in 2018 it gave me a strong, motivational purpose to start my fundraising journey. With many years experience working within the Corporate field, I am honoured to join the Lily Team as their Corporate Fundraiser.

Tara Rutt

Fundraising and Merchandise Support

Email [email protected]

I met Alison Maguire years ago in our local hospital and I first learnt the word mito. I volunteered for the Lily Foundation at events and took part in various fundraising events over the years and was blown away by the love and determination from Liz and the team. I was offered a job with Lily in July 2018 and I feel very lucky to be part of 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.