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Olivia Bergman Freitag, 02. März 2012 14:29 | Asheville, NC
There is a forum attached to the United Leukodystrophy Foundation's website, though it doesn't seem AGS families are making much use of it yet. It's a very large and active forum because it covers all leukodystrophies, so it's a bit confusing to navigate. ULF does charge for foundation membership, but the forum is FREE! You only need to register. Here is a direct link to the forum
http://www.inspire.com/groups/united-leukodystrophy-foundation/
Thanks for setting up that Facebook account. I'll be heading that way next.

Sabine Freitag, 02. März 2012 10:32
Merci pour le site ! c'est un agrément de déchiffrer des instructions passionnantes

Katie Mittwoch, 15. Februar 2012 10:34
http://www.facebook.com/pages/Aicardi-Goutiere-Syndrome/236054129816597
Sorry this is the facebook page.Im not very good with computers
http://www.facebook.com/pages/Aicardi-Goutiere-Syndrome/236054129816597

Mustafa Dienstag, 14. Februar 2012 21:08
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Dear Katie,
could you give us the facebook
adress which concerning about
AGS?

Kind regards
Mustafa

Katie Dienstag, 14. Februar 2012 14:29
We have had contact with professer Yanick crow and now my son has an appointment to see him which will be good to get more answers that we still dont really know. And now my son is being seen at alder hey hospital about a reflux operation. I have noticed that there really wasnt anything on facebook about AGS so i've set up my own facebook page so family and friends can also talk about being affected with AGS. My son now is starting not to tolerate his feeds and he is losing weight so hes been given pedisure plus which should help

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