Liz Curtis

Founder & CEO - Designated Safeguarding Officer

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

Operations and Marketing Director - Deputy Designated Safeguarding Officer

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 oversee 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.

Katie Waller

Patient Engagement and Advocacy Manager

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. 

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.

Trudy Hope

Content Writer and Website Manager

Email [email protected]

I love writing, and telling stories, and there are some amazing stories to be told from the many people affected by Mitochondrial Disease. Until January 2023, when I first started working for The Lily Foundation, I knew very little about this awful disease, but in the short time I’ve been here I’ve already learnt so much. I have many years’ experience creating content for digital and print channels, and I can’t wait to start sharing all those stories and spreading the word about mito on behalf of the Lily team.

Bobbie Lloyd

Graphic Designer

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!

Jackie Chatfield

Events Manager

Email [email protected]

Passionate about creating meaningful events that make a difference, I jumped at the chance to work for The Lily Foundation. With my event management experience, and through our extensive calendar of events, I hope to help bring people together and make real change whilst creating lasting memories for all those affected by mito. The charity has achieved so much and made such a difference to so many, I’m honoured to be a part of the team.

Lauren Hewitt

Events Manager

Email [email protected]

Bringing people together at Lily events is an integral part of not only raising funds and awareness for mito, but also as a means of support for the families affected by this disease. With many years of experience managing events in the non-profit space, and a passion for planning, problem-solving and creative thinking, I am thrilled to join the Lily team and play a part in supporting this incredible community. I hope to see you at a Lily event soon!

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. 

Sarah Hanks

HR, Payroll & Accounts Manager

Email [email protected]

I’m Sarah and I have been involved with The Lily Foundation from the start. I am Lily's auntie and very proud to be part of such an amazing team. My main role now is to look after HR & Payroll and I also manage the day-to-day Lily accounts.

Chrissy Stewart

Benefits Advisor

Email [email protected]

I had my first introduction to The Lily Foundation in July 2019 when I attended the family weekend. I have worked as a welfare benefits advisor in Newcastle since 2002. I am also a care coordinator in the NHS, part time. I am passionate about working holistically and in a multi-disciplinary team setting in support of patients, their families and carers. I am very much looking forward to the challenge of this new role.