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This fundraising page is inspired by

Jessica Sullivan

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Claire Sullivan

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

Ring20 Research and Support UK CIO Charity Logo

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Total raised
£40,959.80

Target
£20000.00

100%

Donations accepted until 30-06-2019

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About

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.

Event details

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.

Craig Burns took part in the Great Scottish Swim 10k on Loch Lomond on Saturday, 25th August 2018 and raised a fantastic £686.00

Our Ben Nevis climb that took place on Saturday, 1st September 2018 raised an amazing £4,650.  

The staff @ Advance Construction chose Ring20 Research & Support CIO there nominated charity for the football Business 5s event and raised a super £500.

The Allison Family Ceilidh raised an amazing £2,100.  A fantastic contribution to our cause.

To follow our events please log on to our Facebook page, link below:

https://www.facebook.com/jessicasring20journey/

Event date

28-October-2017 13:00  - 
31-March-2019 00:00

Event type

Donation/sponsorship - number of events

Event is completed

Donations

Good Luck
Donation by Sean Burke
on 31-08-2018
£10.00
£2.50 gift aid
From Ba and Lorenzo xxx
Donation by Ba
on 31-08-2018
£20.00
£5.00 gift aid
Donation by Anonymous
on 31-08-2018
£10.00
£2.50 gift aid
Donation by Anne Hanlon
on 31-08-2018
Go team Ben Nevis.... for Jessica
Donation by Francie
on 31-08-2018
£20.00
£0.00 gift aid
I wish you all the best of luck in your climb to the top of "The Ben". If it is a clear day you can wave to me in Oban. Lots of good wishes to Claire and to you all for the future.
Donation by Johann MacAskill
on 31-08-2018
£5.00
£1.25 gift aid
Matthew, Claire and the Gang, Wishing you a fantastic climb. Xxx
Donation by Anonymous
on 31-08-2018
£10.00
£2.50 gift aid
Good luck everyone Cx
Donation by Carol Cunningham
on 31-08-2018
Best of luck
Donation by Chris Craney
on 31-08-2018
£10.00
£2.50 gift aid
Good luck everyone!!! xx
Donation by Sharron Hunter
on 31-08-2018
£50.00
£0.00 gift aid

Donation summary

Online Donations: £15,493.80
Offline Donations: £25,466.00
Total Raised: £40,959.80
Total Raised
with gift aid:    £41,837.05

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