Hi Guys,
I found this thread today while searching for references to Angelman Syndrome on the web in Australia. Im a mum to a little girl with AS, she was diagnosed almost 3 years ago & she is an amazing little girl. Having said that - dont in any way think I like AS!
When we got our diagnosis we found little information anywhere, most people misunderstood the syndrome and that was even if they knew about it at all. We started a National Charity last year, we launched in Brisbane in Oct and hope to announce some Australian research later this year. Part of one of our goals is to increase our web presence so that people can find us and in turn we can help :-) Great things are happening, there is alot of more up to date info on AS that we hope to be able to get online soon & correct the old stuff. Colin Farrell is a great advocate for AS (and is unfortunately often misquoted in things he says). I was lucky enough to meet him in 2009 in Chicago & he is a wonderful, caring dad to his son James. Anyway, Im so sorry to read you have a diagnosis of AS. I think that the pain I feel about my daughters diagnosis is most of the time right at the back of my mind now, but when I hear of new kiddos I feel so much for the families. I also know that there are loads of positives if you can get good networks. If you would like to know more about our Australian Foundation, have any quetsions about anything please contact me. Id love to hear more about your angel :-)