Raise money for the Dancing Eye Syndrome Support Trust

On May 12th 2024 I will be running the Leeds Marathon to raise money for the Dancing Eye Syndrome Support Trust. The charity provides valuable support for families living with Dancing Eye Syndrome and funds vital research. Reg. Charity number: 1060181 (https://dancingeyes.org.uk/).

Earlier this year, Isabelle, the beautiful daughter of two close friends was diagnosed with Dancing Eye Syndrome or Opsoclonus Myoclonus (OMS). OMS is an autoimmune disease which attacks the cerebellum (the part of the brain that deals with co-ordination), and it can be caused by a tumour or an infection. The symptoms of OMS usually begin abruptly and can include rapid, repeated eye movements (“dancing eyes”), jerking movements, and loss of balance. It usually develops during infancy, with most children diagnosed at around 18 months of age

It is an incredibly rare condition, making it extremely difficult to diagnose. Just before going on holiday, a consultant with prior knowledge of OMS was able to diagnose Isabelle after a few scary weeks of uncertainty in the hospital for Isabelle and her parents. For others with the condition, it can take much longer to receive a diagnosis which can have a significant impact on the long-term outlook for the child. Importantly, the work the Dancing Eye Syndrome Support Trust do in promoting research and awareness may reduce the time of diagnosis for future patients.

"The outlook for children and young people with opsoclonus myoclonus syndrome is variable depending on the severity of the symptoms when the condition is diagnosed. The majority of children will have a chronic relapsing disease and will require long-term immunosuppressive treatment.

Relapses may be triggered either as the treatment is withdrawn or following a viral infection. Many children will experience ongoing problems with learning, coordination, behaviour and sleep."

Great Ormond Street Hospital, (2024).

Any donations are extremely welcome, but if you are bored of sponsoring marathons (thanks London), Isabelle's parents are doing a sponsored triathlon this summer which you can support here:

https://www.gofundme.com/f/izzys-tri-for-dancing-eyes.

Thanks in advance!

Ollie