Esme’s Umbrella offers a safe shelter for anyone living with Charles Bonnet Syndrome (CBS)
Whether you’re seeking knowledge about symptoms, seeking solace in shared stories, or striving to spread awareness, we are here to help you on your journey.
Founder of Esme’s Umbrella – Judith Potts
Judith was an actor. She created ‘Act One’ to coach children and adults in voice, acting and presentation.For nine years she wrote a Health Column for The Telegraph. Her subject was cancer, but when her mother, Esme, developed Charles Bonnet Syndrome (CBS), the condition became part of her column. Judith wrote the world’s first article about CBS and continues to write and speak about this perplexing and disturbing condition. In November 2019, she launched Esme’s Umbrella at the House of Commons, in memory of Esme. The Campaign became at charity in December 2021. In 2020 Judith won Visionary’s Partners’ AwardJudith is married, with two children, three grandsons, two step-children, five step-grandchildren and a border collie.
Chair and Medical Adviser – Professor Dominic ffytche BSc MBBS MD MRCP MRCPsych
Professor ffytche is an academic old age psychiatrist with a special interest in visual perception and its dysfunction.He is Professor of Visual Psychiatry at the Institute of Psychiatry, Psychology and Neuroscience, King’s College London – the only such post in the world – and Consultant at the Maudsley Hospital.Professor ffytche is the globally-acknowledged expert on CBS and number one in the world for visual hallucinations of all types. He was the Principal Investigator on the NIHR-funded SHAPED programme, which was the first piece CBS research and formed our current understanding of the condition.
Trustee – Professor Mariya Moosajee
Professor Mariya Moosajee is Professor of Molecular Ophthalmology at UCL Institute of Ophthalmology and The Francis Crick Institute. She is a Clinician Scientist and Consultant Ophthalmologist in Genetic Eye Disease at Moorfields Eye Hospital and Great Ormond Street Hospital for Children.
Trustee – Helen Khan
Helen Khan is Communications Lead at NIHR Moorfields Biomedical Research Centre. She also runs her own PR Agency.
Patron – Richard Hawley
Richard Hawley is a British actor, best known for Grushko, Prime Suspect, Family Affairs and Love Actually. His work on Coronation Street – playing Johnny Connor, who developed CBS – led to a huge increase in awareness of the condition. Richard’s support for Esme’s Umbrella is enormously appreciated.
CBS Information Manager - Luke Spink
Luke manages Esme’s Umbrella’s website, social media, and membership programme, and coordinates the CBS Champions network. He creates digital content and graphics to raise awareness of Charles Bonnet Syndrome and to keep members and supporters connected. Through the CBS Champions programme, Luke is building relationships with organisations that support people living with sight loss, helping to expand awareness and encourage better understanding of CBS across the sector.
Alongside this part-time role, Luke works full-time as Senior Engagement Officer at Halifax Society for the Blind. This position gives him daily contact with people living with sight loss and the organisations that support them, providing valuable insight and connections which strengthen his work with Esme’s Umbrella.
Project Co-Ordinator - Nina Chesworth
Nina joined Esme's Umbrella as a volunteer in 2019 after attending one of its Information Days. She has lived experience of sight loss and CBS. Using this experience she hosted one of Esme’s Friends' support groups online and is often invited to share her story with groups within and outside the sight loss sector. With her passion to create awareness of the condition and to support others in the CBS Community, she is now part of the team working on Esme's Children and Young People campaign, building relationships with sight loss organisations and creating a training programme to help create more awareness and be a part of the sight loss pathway.
Nina say’s “The first part of my CBS journey was a frightful and lonely one. I don’t want anyone to go through that and if I can help at least one person - no matter their age - I will be happy”