almost two weeks ago Julie and I were able to attend the first Angelman New Zealand conference - held in Hamilton (which is in the North Island) some folks from the Christian Community we are part of got together and and gave us $1000.00 which was able to cover our airfares and registration for the conference. to be continued..
There were 40 people registered for the conference and 7 or 8 were professional people, teachers and other staff who care for children with Angelman Syndrome, the rest were parents or family members. There were 19 children and of those 10 of the Children has AS and were of a variety of ages. The Friday night was a relaxed time after the drive down to meet folk and relax. Well probably like every one else we immediately felt at home a bit like meeting the extended family. The great thing was that there was representation of 4 families from Christchurch.
There were 3 main presentations - one by Dr Elle Smith who is a geneticist from the Angelman Syndrome Clinic in New South Wales in Australia who gave a most excellent presentation about the genetics of AS complete with Powerpoint presentation - I was able to get most of this on video, this was just great. Julie had a couple of questions to ask one ws about her opinion of a mouse model that reduced the impact and symptoms of AS and she responded by saying that she was not aware of it at this point in time and suggested that perhaps we were up with things happening internationally more than she was. This was something that we found to be true with discusssions with other folk - we are reading and researching on a daily basis to gain a better understanding about whta is goin on in Elijah's body and the effects of AS on his brain and development.
To be continued.