This week at Excitim HQ, we were moved by the Star Wars video that’s helping to raise awareness of Angelman Syndrome. It’s a step in the right direction as Angelman Syndrome is not as well known as other medical conditions that many come into contact with.
We ran an iClick and iControl demonstration of some new iPad tech and had a bunch of toys with us including an inflatable, remote controlled, Despicable Me Minion for the Angels to play with. It’s about 60 cm tall, soft and stands back up when it’s pushed over in the excitement.
Angelman Syndrome Support Education and Research Trust or, Assert for short, is a UK based volunteer group supporting individuals with Angelman Syndrome. The majority of trustees are parents or relatives of children or adults with the condition.
The group aims to raise awareness of Angelman Syndrome through a variety of means including their website, publishing research into the condition and their annual conference. Many parents and even professionals may never have heard of Angelman Syndrome due to the fact that it is rare. The condition is caused by irregularities that can occur in Chromosome 15.
I can count myself as one of those who had never heard of Angelman Syndrome until Rachel Martin, Chair of the Trustees, asked me if we would exhibit at Assert’s annual conference on August 30th in Coventry. And, as the condition is quite unknown I thought it would be good to find out more. I watched the video on the Assert website and Wiki is a good read.
It gave me an insight into the condition and set me thinking about what we should take to the exhibition. Then I thought it would be good to introduce myself to the very active AngelmanUK Facebook Group and ask the parents and professionals what we should take along. I got some great feedback and ideas and may parents emphasised the need for tough chew resistant toys.
The conference takes place from August 29th – 31st at the Coventry Hilton but the exhibition is on Saturday, August 30th. Get in touch with Assert through the contact page on the website for more information.
We recently had the opportunity to meet families and professionals at the ASSERT Angelman Syndrome Support Education and Research Trust conference and exhibition as they met to discuss new research into the condition and family support.