There is also a great Facebook page (http://www.facebook.com/#!/group.php?gid=161839724125&ref=ts) and one of the guys from St Louis has even been in touch with us.
Finally, its not just about Evan. There are hundreds, if not thousands of kids in the UK who would benefit, and we would like you to help us get this on the agenda. If you have a minute, please visit (and keep an eye on) http://petitions.number10.gov.uk/Parents-4-SDR/ it's currently on hold while Cameron asks Clegg what to do (oops, little bit of politics...) but hopefully it will be back on shortly.
Finally, i'd just like to say thanks to the loads of people already thinking about fundraising. Once we get the go-ahead it will be all systems go. (there is even mention of a "yummy mummys" calendar....YOU HAVE BEEN WARNED!)