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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 to you all!
Donation by Kathryn Manning
on 31-08-2018
Good luck troops! I feel as if I should be donating in Mars Bars, rather than pound notes. Have a great day and hope the climb goes well. Will be thinking about you.
Donation by Emma Simpson
on 30-08-2018
£20.00
£5.00 gift aid
Good luck
Donation by Catriona Gemmill
on 30-08-2018
£10.00
£2.50 gift aid
Good luck this weekend! :) x
Donation by Charlene
on 30-08-2018
£10.00
£2.50 gift aid
Good luck, great cause x
Donation by Jen Morton
on 30-08-2018
£20.00
£5.00 gift aid
Best of luck, fantastic cause and wow on the amount you have raised so far!
Donation by Fiona Macintyre
on 30-08-2018
£10.00
£2.50 gift aid
Good Luck!! I hope the weather is good for you! :-) Such a fantastic cause!
Donation by Barray Christie
on 30-08-2018
£10.00
£2.50 gift aid
Hope Ben Nevis is kind to you on the day and I'm sure your Fundraiser will benefit greatly from your efforts.
Donation by Bob Kelman
on 30-08-2018
£20.00
£5.00 gift aid
Since for such a good cause i wish u safe passage up and down. No wifi up there i think u'll struggle Stephen. Xx
Donation by Gordon Mackie
on 30-08-2018
£30.00
£7.50 gift aid
Donation by james wilson
on 29-08-2018
£5.00
£1.25 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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