Dancing Eye Syndrome Support Trust

Would you like to join our walk and talk, fundraising community challenge, supporting a very rare neurological condition Opsoclonus Myoclonus Ataxia Syndrome? One of our own, in Littlebourne, has this rare condition – Bethany Brazier, Karen Brazier’s daughter, so some of you may know her. OMAS is a rare disease with around 1:10 million children diagnosed each year.

This year, we want to advance our support to our London marathon runners, who are now resting, prior to the enduring 26.2 mile run taking place on Sunday 27th April.

To show our support, would you like to complete your own 26.2 miles with us, individually or within a group/small groups, and raise further funds for this small charity that is run by volunteers?

It can start today, in your own time, and be completed by next Sunday (marathon day), or the following weekend for those who want more time.

Whether you walk, run, cycle, swim, your 26.2 miles, will increase your health and wellbeing, as well as collectively raising funds and miles together - we can have a lot of fun walking and talking along the way.

I will set up a WhatsApp group (07909 522030) for those who wish to join (optional) as some may want to do these activities together.

Bank Holiday Monday (21st), I will be at the Bridge by the Geese, (Littlebourne) to walk the three villages Littlebourne, Ickham, and Wickhambreaux, 9am. Please feel free to join.

The Charity’s recent news:

© Dancing Eye Syndrome Support Trust | Registered Charity Number: 1060181

The International Committee met in Oxford in April, where 58 members (attached photo), leading oncologists, and specialist paediatric neurologists, with committee members and parents met to continue their heartfelt work of establishing what medical support can enable the best outcome for those affected.

Annually the charity provides weekend breaks, for families to get together and share their stories, support each other, and enjoy respite in an inclusive environment – these breaks are so valuable, this year Prestatyn, North Wales, 23rd May 2025.

Each year we have marathon runners (usually family members, or close friends) to raise awareness and funds for the charity. 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; much has been raised for so many charities.

For those with this condition, they are very lucky if they find a neurologist who can quickly diagnose, treatment can then start immediately, before the immune attacks their own healthy cells. The charity is there to provide support to those navigating their way through treatment and the many challenges this disease presents.

Your support will go along way and the charity will honour your fundraising efforts: by continuing to supporting families, increase international collaboration, enable more creative projects, and provide therapeutic behaviour support.

Thank you for taking the time to read and we would love to hear from you.

Jo Brazier