SVS present a cheque for £1,123.75 to ‘Dravet Syndrome UK’.
Here at SVS, we are huge believers in supporting local charities and so it was decided on the night of our 20th Anniversay party, to arrange various raffles and auctions. Collectively we raised a tremendous £4495.00 to be split between four local charities. A big THANK YOU, to all who made contributions on the night.
Accepting the cheque on behalf of Dravet Syndrome UK were Angela, Michael & Nathan Snowie, along with SVS’s, Managing Director Gerry Henry and Sales Manger Alina Forbes.
Linzi Cowley - Fundraising Co-ordinator for Dravet Syndrome UK said... We would like to say a huge thank you to all of the wonderful staff and partners at Specialist Valve Services Ltd in Aberdeenshire, along with Alina Forbes, for our nomination - your support will make a huge and significant difference to the lives of those living with this catastrophic condition”
Alina Forbes (Sales Manager) quoted – “This charity is a very important one to me personally, as it has affected my best friends’ family. Dravet syndrome is a very rare form of childhood epilepsy. Out of 500 children with epilepsy, only one, or at most two, children are likely to have this form of epilepsy.
The condition isn’t one that is detected from birth, but the seizures start in the first year of life. The seizures can be prolonged and frequent, meaning that care needs to be around the young babies and children by people that can deal with the patient appropriately. Having heard about the effects that some of these seizures have had on wee Nathan is pretty heart-breaking. With each seizure it can bring behavioural and developmental delays also sleeping difficulties and chronic infections. It’s a very hard task for the family surrounding a child with this syndrome due to the behavioural changes.
Not being a specialist on the condition but having heard and seen the effects it has had on my friend’s nephew has been quite difficult to listen to. This donation will hopefully assist a little in further research for these young children, so there is more of an understanding of the condition and support those children living with the condition on a daily basis.”
Dravet Syndrome UK is an independent UK charity dedicated to improving the lives of those affected by Dravet syndrome through support, education and medical research.
The charity was founded in October 2008 and registered with the Charity Commission of England and Wales in January 2009. It was founded by parents looking for support and information about treatments and research, all of which was sadly lacking in the UK at that time. Since the charity was founded the membership has risen from just thirty families to almost four hundred.
Other Charities supported on the night were: