Will there be an AGS conference anywhere this year? We would love to meet other families who are going through this and find out more about what is going on research wise.

Hi there, we (and some of the doctors) have the suspicion that our son (12 months, from Germany) has the Aicardi-Goutières Syndrom.
Our doctor wants to make a genetic test, because a lot of his noticeable problems matches to until now are without pathological findings.

Hi everyone my little girl is 5 months and was born with micro, polymicrogyria, white matter and calcifications on the brain. We had an appointment with the neuro last week and then on his letter he said that Belly might have AGS since that's how her MRI looks like. Well before that appointment her micro was taken o the list because her head is growing but I read in google that it's one of the symptoms of AGS. She hasn't had no seizures, she is very active, she also has cerebral palsy so she has a bit of problems with her tone on top and bottom. She is also having a spinal tap and a ct scan to verify all this, would you please tell me what I have to look out. It's really scary to find out all this after everything that has happened. I thank you beforehand for answering my questions.

Dear Family from Norway, could you please leave here your email-adress. Otherwise no one can contact you. My best wishes Mustafa

I need some support from others out there. Our son just got diagnosed with AGS, I feel like I am all alone in this. I see other kids out there on this site, but they do not think there has been anyone else in Manitoba that has had this. If there is someone in Manitoba, or any where else in Canada, PLEASE let me know. I need help. Thank you.