On Saturday the 14th of September Corpal held its first official event in Edinburgh. I’m very proud to say, as a trustee, I was heavily involved in the organisation along with fellow trustee, Rachel and charity administrator, Jean.
How did the day go?
As far as I am aware everyone took something positive from the day. It was well attended and everyone seemed happy, comfortable and confident to connect with other parents and families. We were incredibly fortunate to have two doctors and a scientist to speak with the families one-to-one about different aspects of the brain and behaviour. We also had an awesome entertainer, Magic Ian (www.magicianedinburgh.com) who had the children and parents engaged and laughing.
Throughout the day, several different families pointed out how glad they were, that this event had been organised – most often events are down South and therefore not necessarily accessible for families North of the border. I feel genuinely privileged that I could be part of the an event that Scottish families had all wanted for a long time.
We were grateful for the generous gifts donated for our raffle and a tombola including a beautiful art print from Urban Cuckoo,(www.urbancuckoo.co.uk), two tickets to Glasgow Science Centre, a gift set from Caffé Nero Scotland, a fancy Ukelele from Runa’s grandad, a book from Usborne books; provided by representative, Charley Clover, with many other donations from family, friends and attendees of the day. In addition to this my step-father in law held a silent auction for a photo session which went to a happy winner. www.kenreidphotography.com
Corpal supports those with ACC and Aicardi syndrome which are both rare conditions. (To see how one relates to the other see this post https://wp.me/pa00Wr-3X.It is estimated that 1 in 3000 people have ACC. It is thought that world wide there are around 4000 people with Aicardi syndrome in total. Most families that attended on Saturday, naturally, were affected by ACC, but we were pleased to have at least two families attending this event affected by Aicardi Syndrome.
Thank you’s all round!
A huge thank you to Jean and Rachel, I feel like we made quite the team!
Written by Keren, September 2019.
A note from Jean
I want to add that without Keren and Rachel who are in fact located in Scotland, this event would not have gone ahead as they did most of the organising from the venue to sourcing the buffet lunch a big thank you to them for their help.
I myself was very pleased to meet so many new families and make new friends. Regional meetings are so important to those affected and your feedback would be appreciated on this event from those who attended.
Thank you from me as well to all concerned in making this day such a success.
To look at the photos taken on the day please look at the gallery and also to Kerens blog under Aicardi Syndrome which will be posted shortly.