Firma il Libro degli Ospiti
Martedì, 11 Giugno 2013 20:14
Info from NIMBL Study Family Conference
Aicardi-Goutières syndrome (AGS) - NIMBL Study Family Conference
As promised and slightly later than planned (apologies – there were some technical difficulties!) please find links to the presentations given at the NIMBL Family Conference in Manchester below.
Diana Chase: http://www.youtube.com/watch?v=3gMgXntekxE
Taco Kuijpers: http://www.youtube.com/watch?v=kfALmBP9_5Q
Eloy Cuadrado: http://www.youtube.com/watch?v=ZsGbUAK4lBo
John Livingston: http://www.youtube.com/watch?v=d-wm8QRVIj4
Teresa Lamb: http://www.youtube.com/watch?v=nsfjdie2GpI
Adeline Vanderver: http://www.youtube.com/watch?v=G147CX0h1ew
Yanick Crow: http://www.youtube.com/watch?v=3HZFFhw-NW0
We hope that you find these useful and informative. Thank you again for coming to the Conference, or your interest in the event if you weren’t able to make it; it was a pleasure to meet you all.
Kate Strong, on behalf of the NIMBL researchers
Mercoledì, 03 Aprile 2013 01:51
Our son Albert has just been Pre diagnosed with ags with a few more tests to fully confirm. Albert has all of the symptoms except for skin lesions. He is 7 months old with vomiting, seizures, irratability, tube fed for 18 hours per day, on many meds, very low muscle tone, no eye contact, occasional smiles, no control of body movement and other symptoms. We are glad to finally have a diagnosis.
Martedì, 29 Gennaio 2013 21:47
On March 6, 2013 in Manchester England, UK, there will be a meeting and clinic with Dr. Crow and other AGS doctors. Hope to see other families there!
Giovedì, 03 Gennaio 2013 03:43
If you want to email me directly i can help you find the facebook page i made. my email address is firstname.lastname@example.org you can even type that email in the facebook search engine and my personal facebook page will popup. feel free to add me. We'd love to have you!
Venerdì, 16 Novembre 2012 17:34
my son with aicardi-goutieres
tried finding the facebook page...no luck....would love to post on our life experiences ...
Mercoledì, 14 Novembre 2012 05:05
I just wanted to let all the families out there know that i made a facebook support group page for our AGS kiddos.
I hope you all will join to share info, and to ask any direct questions. Hope this post is okay.