My Story

About us

DESST – Dancing Eye Syndrome Support Trust

Dancing Eye Syndrome is a rare autoimmune disease that affects the brain. Autoimmune diseases cause the body’s immune system to react against itself and attack its own healthy tissue. In DES, the immune system reacts against certain components of the brain. The main target of the attack is believed to be the cerebellum. This attack is what causes the symptoms of DES. Initially these symptoms can be severe, and include spontaneous, abnormal, chaotic eye movements (opsoclonus), spontaneous random limb jerking (myoclonus), and incoordination (ataxia). Even if these physical symptoms resolve, up to 70% of patients may experience residual cognitive and behavioural symptoms, including speech and language problems and aggression. Other residual symptoms may include reading difficulties, dysregulation and anxiety.

This charity is close to the heart of my sister and me as her manager's daughter was diagnosed with DES at the age of 18 months and she knows firsthand how beneficial the respite weekends are for families and the medical conferences to raise awareness and discuss ongoing research etc. Katie had to undergo surgery to remove her neuroblastoma at 19 months of age and had a year on a steroid and chemotherapy plan.

Katie has been classed as in remission, however, could have a relapse if her immune system is under stress, this could be from a common cold, puberty, pregnancy to name a few. Due to the attack on her cerebellum, Katie has been left with learning difficulties and co-ordination issues. Research and awareness are so important as the earlier this is diagnosed and treated the better the outcome is for the individual.

About the Charity. 

We are a very small charity that formed in 1997. Despite small, we have made some big noises, and big differences therefore sharing the amazing work is key. For example, our weekends certainly deliver a key service that addresses key outcomes that align with charity grants: supporting physical and/or mental health, developing life skills reducing isolation and improving inclusion. These are just a few. We also host International Medical Conferences every two years, with 58 in attendance April, 2025.

Sharing the charity's stories, objectives and feedback from our families, will help engage and more so increase our networking circles and heighten awareness. Most importantly, aligning these communications with our ongoing fundraising plans will only further enhance successful grant bids which is key to the future success of this unique trust. We are happy to strengthen relationships and raise the international profile of DESST with parents outside the UK & US. So, networking and understanding other journeys is so helpful. The committee would agree these connections are beneficial to the charity.

Additional information can be found on https://dancingeyes.org.uk/ and a member of the charity would be happy to help if more information is required.

Professor Ming Lim is the charity’s Consultant Paediatric Neurologist and Medical Trustee, Jo Brazier is the Chair of the Dancing Eye Syndrome Support Trust, Ian Grummitt is the Treasurer, and Laura Maynard is the Secretary. We have ten trustees.

The London Marathon has become an annual, inspiring and colourful fixture in the world’s sporting calendar since the inaugural race on 29 March 1981: a celebration of fun, fundraising and fancy dress.

Over the years more than a million people have completed the 26.2-mile course – which runs from Blackheath to The Mall, with a spectacular finish in front of Buckingham Palace, showcasing the very best that the capital city has to offer.

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