Our Trustees work together to develop a clear strategy for the future of The Sandcastle Trust. They each play a key role and have expertise and experience in different areas of our work. Our Board are all committed to guiding The Sandcastle Trust to operate at the highest professional standard whilst believing passionately in the charity’s mission and vision.
Danielle (Co-Founder and CEO) and David Singleton (Co-Founder and Trustee)
Danielle and Dave co-founded The Sandcastle Trust in 2016. Their family have first hand experience of living with a rare genetic condition as Dave was diagnosed with the x-linked condition – adrenomyeloneuropathy in 2012. You can read more about their family’s story here. Although having the support of a wonderful disorder specific charity, Dave’s diagnosis was a lonely and terrifying experience. Not knowing what the future would hold, they developed a coping mechanism whereby they decided instead to focus on the present and on creating as many happy family memories as possible. Conscious of the considerable barriers other affected families faced, The Sandcastle Trust was set up on their kitchen table to offer practical and financial support to enable families like theirs access some much needed fun and respite. Danielle has responsibility the day to day running of the charity and works hard to raise awareness of the impact of rare genetic conditions on family life. As well as being actively involved in the running of the charity, Dave is also a serving Police Officer.
Lesley Dodd
Lesley is the Chief Executive of Ealing Mencap, a leading local learning disability organisation. She is responsible for the strategic planning, commissioning and management of support services for people with long term conditions/physical/sensory/learning disabilities. Throughout her career Lesley has proactively campaigned and worked towards trying to reduce the disadvantage and discrimination experienced by children and adults with a learning and/or physical disability. Lesley has an extensive knowledge of health and social care agenda and of commissioning and managing provider services at a senior level within the health and social care sector. Lesley is a keen singer and grandmother to four.
Ian Bateman
As a senior manager in the NHS Ian has a background in the delivery, commissioning and management of public sector and charitable services for adults with a learning disability and vulnerable families. Lately working in his current role Ian brings skills of financial management, governance, quality and regulation to the board. As well as an in depth understanding of health and social legislation and provision in England. In his spare time Ian also volunteers with the Royal Airforce working with young people who have an interest in aviation.
Ellie Bateman
Ellie is currently a Divisional Director at CQC Outstanding Royal Marsden NHS Foundation Trust, a specialist cancer hospital and National Institute for Health Research (NIHR) Biomedical Research Centre for Cancer. She leads a team of 1,000 staff with a budget of over £130m. Her background is in direct care provision to offenders and those with mental health needs and addictions. She was a Service Director at South London and Maudsley NHS Foundation Trust prior to her job at the Marsden and has previously worked clinically as a Healthcare Assistant at East London NHS Foundation Trust and an Offender Manager in HMP/YOI Feltham. Ellie is also a Trustee for the Bethlem Museum of the Mind. Ellie’s background is steeped in operational delivery of complex health and social care balancing both robust governance, performance and financial management, whilst ensuring the best outcomes for patients. Ellie is passionate about promoting a culture of equitable improvement based on best practice and both positive patient/staff feedback.
Mina Holland
Mina is a journalist, the author of two cookbooks and an editor on the food desk at The Guardian. Before her daughter, Vida, was diagnosed with Diamond Blackfan Anaemia in 2019, aged four months old, her knowledge of genetic disorders was remote – and her dealings with the NHS infrequent. Now, regular hospital visits and medical interventions are a part of everyday life, as is advocating for her daughter’s needs. She has grown to see Vida’s DBA less as “a genetic condition” than another example of the human condition: these things happen, often randomly, and moments of joy post-diagnosis are not only possible but can be abundant. In this spirit, she is delighted to join the board of trustees at the Sandcastle Trust, giving people with rare conditions and their families support and opportunities to make memories.
Luke Brooker
Luke is a Chartered Surveyor and Specialised Project Manager. His current role is as a Project Development Manager for a large national organisation. Luke’s valuable commercial experience will be vital to the charity as it grows and moves forward.
Samantha Eldrige
Sam is a HR Director, mum to Hollie and step mum to Jude and Daisy. “My experience with genetic disorders was non-existent until Hollie was born 11 years ago. Very quickly I was learning about chromosome deletions and genetics whilst adapting to my new life as not just a mum, but a mum to a child with a rare condition that next to no-one knew about. Whilst adapting I was also grieving for the life I thought I was going to have when I discovered I was going to be a mum. The early months and years could often by lonely and I soon discovered that finding charities and organisations that could help, support and guide invaluable. I wasn’t alone, I wasn’t the only mum in this situation and I soon wanted to help others in my situation. Through work I was able to raise money for associated charities and along this journey, I discovered The Sandcastle Trust. As a family, we have been lucky to experience days out provided by the Sandcastle Trust and seeing the joy in not just Hollie’s face, I decided I wanted to give back and help other families. I have run the London Landmarks, arranged cake bake offs and pub quizzes. But for me it isn’t just about raising much needed funds, its about giving time to help the trust with their mission and I am delighted to be joining as a trustee.”
Jess Clatworthy
Jess is mum to Daisy, Lola and Alfie. Both Lola and Alfie were born with the same ultra rare genetic condition called CRELD1. “Lola, my second daughter, started having seizures at three months old. As a paediatric nurse I knew seizures starting so young was a very worrying sign, and had the terrifying experience of the transition from nurse to parent of a very sick child. Lola’s seizures got progressively worse, causing detrimental effects to her development. Despite trying many different treatment options, and having numerous investigations, we never got control of her seizures or found a diagnosis for her condition, and she passed away just before she turned three.” The tragedy continued when at three months old Alfie also began having seizures. “By doing our own research we found a gene mutation called CRELD1 which fitted with all their symptoms. Genetic testing revealed that both Lola and Alfie were carriers of this gene mutation. Unfortunately the diagnosis hasn’t provided us with all the answers we were hoping for, but it has blessed us with a very small but extremely supportive community who live daily with this condition. I came across Sandcastle Trust through another family and saw they were looking for trustees. I felt like it was a great opportunity to give back for all the support we have received ourselves. We know all too well how important it is to make special memories with your loved ones, and I am grateful that I can be part of a team who help create wonderful experiences for families who care for a loved one with a genetic condition.”
Laura Skinner
Laura, is an NHS doctor and mum to 6 year old Freddie. “I found myself catapulted into the world of rare genetic disorders when my son was born and surprised us all with his extremely rare microdeletion syndrome. I was in a very lonely place – consultant geneticists couldn’t tell me what the future would hold for my son, and I had no one in my social network who had experienced anything similar. I spent hours doing my own research and trying to come to terms with it all. Finding other families that have been through the same has been invaluable for support – being able to chat to others who just ‘get it’. We have been so fortunate to have received support from The Sandcastle Trust over the past few years – a short family break away to escape the stresses of daily life, and Christmas events that lit my son’s face up with joy. I decided that I wanted to give my time and energy back to a community that offers incredible support to families. As someone who has lived experience of a rare genetic condition within our family, I am keen to use my experience for good. I am so excited about the plans and vision of The Sandcastle Trust, and cannot wait to work together as a trustee.”
