On Saturday the 14th of September Corpal held its first Scottish event. 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.
What is Corpal, you ask?
Corpal is a charity that supports families and individuals who are affected by agenesis of the corpus callosum (ACC) and Aicardi Syndrome. It’s a small charity that aims to raise awareness, connect families and provide support and information.
Corpal is a charity that I found via Google when I was in hospital during Runa’s diagnosis. Me and Stewart were told to “do your own research online, we don’t know a lot about the condition.” So we did.
Once the dust had settled and we were home, getting on with life with our beautiful quirky girls, a message was sent round asking if anyone wanted to become a trustee for Corpal. I knew straight away that I wanted to get more involved and put my name forward.
Fast forwarding several months saw me and Rachel (the Scottish ACC contact and fellow trustee) looking for venues, finding caterers, hunting down raffle prizes and searching for entertainers.
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 accessable for families north of the border. I feel genuinely privileged that I could be part of an event that Scottish Corpal families had all wanted for a long time.
All the Prizes!
We were grateful for the generous gifts for our raffle and a tombola. We had a beautiful art print from Urban Cuckoo (www.urbancuckoo.co.uk), two tickets to Glasgow science centre, a gift set from caffe Nero (Stirling), a fancy ukelele from Runa’s grandad, a book from Usborne books; provided by representative Charley Clover, and many other lovely donations from friends, family and attendee’s on the day. Although I messed up the raffle in typical Keren fashion (I threw away a few strips when I wasn’t supposed too) everyone was very forgiving and lots of people went home with lovely new belongings. 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)
Aicardi Syndrome and Corpal
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 4000 people have ACC. It is thought that world wide there are around 4000 people with Aicardi syndrome in total. Most families that attented on Saturday, naturally, were affected by ACC, but one other family was there that had an Aicardi warrior in their midst.
Sara is 31 and I met her with her parents Tam and Liz and her sister Clayer. I was so happy to be able to able to speak with them, listen to their words of wisdom and see how resilient, happy and full of love they were. It was very inspiring to be able to speak with them. In Scotland, to the best of my knowledge, Runa is the youngest girl with Aicardi Syndrome and Sara will be the oldest. It felt quite special that they were in the same room together.
Thank you’s all round!
A huge thank you to Jean and Rachel, I feel like we made quite the team!
A massive thank you to all of the families who attended, it couldn’t have been a success without you.
Thank you to magic Ian for his great show and thank you to all the k,ids for getting involved and taking part.
Thank you to Rachel’s mum, my husband, my mother-in-law and sister-in-law for making tea and coffees, running the tombola and selling raffle tickets.
Thank you to the Costorphine Astoria Centre for letting us use their venue at a generously reduced rate, it was a great space to use.
Thank you to everyone who donated prizes and funds for the day. And a special thank you to Charley Clover, the usborne representative. Not only did Charley donated a raffle prize, she also ran a pop-up shop and donated 10% of her earnings that day to Corpal.
My most hearty thanks goes to my beautiful Ru, who inspires me every day and without her I wouldn’t have been involved with this great charity or this brilliant event.
Let’s see it we can make it all happen again next year!