The Lily Foundation logo featuring a butterfly, hearts and an 'x' for a kiss

Fighting mito,
finding hope.

Lily staff in lily Tshirts sitting on tiered steps Lily staff in lily Tshirts sitting on tiered steps

Our team

Meet the team behind our charity, and discover how we work to fight mitochondrial disease and support everyone affected.

Lily staff

The heart of our charity

We’re a small team, and although we work remotely, we come together on many occasions to support patients and families affected by mitochondrial disease. We come from a range of different backgrounds, some whose lives have been personally touched by mito, and others whose professional background has led them to the charity, and who have since been inspired by the people we support.

Some of us have been with the charity from the very start, and others have joined in more recent years as the charity has expanded. But we’re all united by the same ambition, which is to work together to improve the lives of those who have been affected by the disease, whilst working towards the day when there is a cure for it.

Liz Curtis

Founder & CEO, Designated Safeguarding Officer

Email [email protected]

“I will never forget the day Dave and I were told that there was no treatment or cure for mitochondrial disease, and that Lily was going to die. After bringing her home and spending hours searching for information and support we found nothing, and so we 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.”

Clare Chatfield

Operations & Marketing Director, Deputy Designated Safeguarding Officer

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“I’ve 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 she asked me if I would create a logo for her new charity... the rest is history! I head up the operations and marketing team, create the visual styling and oversee our events and fundraising. I love every minute of my job.”

Maria O’Hanlon

Research Manager

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“I became aware of mito during my degree in Biomedical Science, when I met a boy who suffered from the disease. I then completed a PhD researching mitochondrial dysfunction and its links to Parkinson’s disease. After that, I worked at a life science marketing agency, but leapt at the chance to work with The Lily Foundation. I’m passionate about all things mito research and hope to help patients and families affected by the disease.”

Katie Waller

Patient Engagement & Advocacy Manager

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“I’m 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 love working closely with patients and families to understand what they need and then communicating this to scientists, researchers and industry.”

Claire Wright

Operations Manager

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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. 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

Marketing & Communications Manager

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“I met Alison in 2011 and soon after met Liz, and I was so moved by their stories and inspired by their courage. Having volunteered for the charity for a number of years, I was delighted to join the team on a part-time basis in a fundraising support role in 2015. In 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 Marketing Manager

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“I love writing stories and there are some amazing stories to be told from those affected by mitochondrial disease. I have many years’ experience creating content for digital and print channels, and since I started working for The Lily Foundation, I’ve learnt so much from all the inspiring patients and families I’ve spoken to who are living with and dealing with the disease. I love sharing their stories and spreading the word about mito.”

Bobbie Lloyd

Graphic Designer

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“I’m Bobbie, and I’m one of the newest members of the Lily team. While my experience with mitochondrial disease before arriving here was limited, since joining the team I’ve seen first-hand what a big difference everyone is making together. I’m responsible for Lily’s design, and I hope my work is always helping to bring more attention to such a good cause!”

Jackie Chatfield

Events Manager

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“Passionate about creating meaningful events, I jumped at the chance to work for The Lily Foundation. With my event management experience, and through our extensive calendar of events, I love bringing people together and making 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, and I’m honoured to be a part of the team.”

Lauren Hewitt

Events Manager

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“Bringing people together at Lily events is an integral part of not only raising funds and awareness for mito, but also in supporting 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 was 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

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“I have suffered the loss of two daughters to this wicked mitochondrial disease, and at the 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 was honoured to join the Lily team as their Corporate Fundraiser.”

Tara Rutt

Fundraising & Merchandise Support

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“I met Alison years ago in our local hospital and that’s when I first learnt the word mito. I volunteered for The Lily Foundation at events and took part in various fundraisers over the years and was blown away by the love and determination from Liz and the team. I was offered a job with Lily back in 2018 and I feel very lucky to be part of the amazing Lily family.”

Sarah Hanks

HR, Payroll & Accounts Manager

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“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 Adviser

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“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 part-time care coordinator in the NHS. I’m passionate about working holistically and in a multi-disciplinary team setting in support of patients, their families and carers. I very much love the challenges this role brings.”