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 mito and support everyone affected.

Board of Directors

Guiding our strategy

Our trustees lead our organisation and guide us in how it should be run, as well as getting involved in many of our fundraisers and official Lily events. There’s a huge wealth of knowledge and experience on our board, from HR knowledge to commercial and legal experience, and their input is invaluable to us.

Ben Carter

Chairman

“I’m Ben and I have the privilege of being Chair of this truly phenomenal charity. I’ve served on the board since 2011 and have a personal connection to mitochondrial disease through close family friends. I’m committed to working with Liz and the Lily team to help deliver on our ultimate aim of finding a cure for this awful disease. In my day job I work in marketing helping some of the UK’s fastest-growing businesses, and am currently at CarWow as their Global Chief Marketing Officer. I continually look for ways to help take Lily to the next level for our patients, families and supporters, and have run several half marathons, 10ks and even a marathon to help spread the word! I’m also a director of Women in Football – helping to level the playing field for women on and off the pitch.”

Rupinder Bains

Director, Lead Safeguarding Trustee

“I’m Rupinder, the Managing Director of Pinder Reaux & Associates Ltd (a specialist media and sports law firm), and I began working for this amazing charity in the capacity of legal adviser. I was then honoured to be invited on to the Board of Directors to work with a strong, determined and dedicated team, helping families suffering from mitochondrial disease. Whilst being a solicitor and heading up my own company pretty much takes up most of my life, what spare time I do have I spend with my husband and two children.”

John Spyrou

Director

“Hi, I’m John. As a lawyer, it’s easy to get caught up in day-to-day business without really seeing what’s important. Being involved with The Lily Foundation is a way to give something back and be involved in a fantastic cause, one that’s leading the way in helping children suffering from mitochondrial disease, and hopefully one day finding a cure.”

Helen Rider

Director

“I’m a Managing Director within the financial services industry and, more importantly, I’m Lily’s auntie. After Lily was born, our family experienced some of the 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 – 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

Director

“I’m fortunate enough to have a great friendship with Jonathan Pearce, having acted for him as his accountant since 1989. So when he approached me to be a founder member of the Lily Foundation, I believed it was 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, through my own clients becoming interested and supportive of such a worthwhile cause.”

Dean Curtis

Director

“Hello, I’m Dean and I work as CEO of a division of RELX Group, a FTSE 20 global provider of information-based analytics and decision tools. I’ve enjoyed a career in football, banking, data and technology, and love building and working within high performance teams who make a difference. Lily is exactly that, and after meeting Liz and the team I wanted to do all I could to help them provide funding for research, educate and raise awareness of mitochondrial disease, in addition to supporting families when they need it most. The Lily family is large, ever-expanding and making a huge difference at a crucial time.”

Claire Riley

Director

“I’m Claire and I work for the NHS as Chief People Officer based in London. I’ve been involved with this amazing charity for several years, having been inspired by Liz and her family’s commitment to provide support, advice and guidance to families, but ultimately to find a cure for this terrible condition. I’m honoured to be part of this board and to work with such a committed and driven team that I’m sure will enable the charity to achieve its ambition.”

Richard Kirk

Director

“My background is in medicine where I’ve spent most of my professional life caring for children and young adults with heart disease, specialising in heart failure and transplantation. I’ve had the good fortune to work with many colleagues around the world and collaborate with them in research and guideline development. It’s also been my privilege to look after many inspiring children and families and be part of their lives. I’ve been involved in charities for many years – initially with the Children’s Heart Unit Fund (CHUF) in Newcastle and more recently as chair of an environmental charity, the Tyne Rivers Trust. I’m excited to be part of The Lily Foundation and hope I can contribute to their fantastic work for the benefit of the mitochondrial community.”