Raising awareness and funds in order to progress the research into Ring20 Chromosome Syndrome, in the hope that a treatment is identified.
Raising money for
Ring20 Research and Support UK CIO
Our little girl, Jessica was diagnosed with Ring20 Chromosome Syndrome in August 2015. A progressive and devastating condition, which impacts brain function and development; and causes intractable epilepsy. Prior to this, Jessica was a very fit and active little girl.
Whilst a medical ketogenic diet is currently helping to control visible seizure activity, the challenge that we face is the inability to control one particular seizure type, non-convulsive status epilepticus. These seizures can be described as unnoticed seizures or a 'twilight' state of confusion or lessoned awareness, which are difficult to recognise and can be mistaken for an absence seizure.
Until the mechanisms underlying the way seizures are generated in Ring20 are understood, Neurologists cannot successfully apply a targeted treatment for these types of seizures.
In order to make any difference to Jessica's long term quality of life, we therefore now embark on an ambitious fundraising schedule to raise funds for this much needed research.
Jessica's Ring20 fundraising events
We have scheduled a number of fundraising events over the course of the next 12 months.
The first event was a hugely successful Kids Halloween Disco which took place on Saturday, 28th October 2017.
Jessica took part in the Aviemore Santa Dash on Saturday, 16th December 2017 where she raised a fantastic total of £650.
Our interactive Race Night in February rased a fantastic £4,100 and Jessica's Ring 20 Gala Ball in April 2018 raised an astounding £16,100.
Next up, Craig Burns will be swimming the Great Scottish Swim 10k on Loch Lomond on Saturday, 25th August 2018.
We have also now announced out Ben Nevis climb that is scheduled for Saturday, 1st September 2018.
To follow our events please log on to our Facebook page, link below:
Donation/sponsorship - number of events
Event already started
with gift aid: £37,021.05
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