Guestbook
smailovic filip
Domenica, 09 Marzo 2014 20:23
Hallo mein name ist maya und ich bin alleinerziehende mutter eines Sohnes. mein Sohn hat das AGS wurde fest gestellt mit ca. 8mon. mein Sohn wird jetzt bald 2 Jahre alt und er läuft nicht und redet nicht genau wie die anderen Kinder hier auch.
ich warte irgendwie auf ein wunder oder keine Ahnung auf was will mich irgendwie nicht damit Abfinden.
Gibt es hier irgend ein kind hier der reden gelernt hat? Oder der jetzt mittlerweile läuft???
Bitte Bitte meldet euch
ich warte irgendwie auf ein wunder oder keine Ahnung auf was will mich irgendwie nicht damit Abfinden.
Gibt es hier irgend ein kind hier der reden gelernt hat? Oder der jetzt mittlerweile läuft???
Bitte Bitte meldet euch
Donna Miller
Mercoledì, 18 Dicembre 2013 15:22
Questo indirizzo email è protetto dagli spambots. È necessario abilitare JavaScript per vederlo.
I want families to know that if you are having a lot of respiratory problems with aspiration, shallow breathing, difficulty coughing, and pneumonias, you might want to check out something called an IPV Impulsator machine that is doing a fantastic job of clearing Jack's and Ben's lungs. Jack has been in th hospital 9 times this year with aspiration pneumonias and I really think that this machine is helping now.
Veronica S.
Lunedì, 09 Settembre 2013 01:54
Best wishes to everyone
Hello Everyone,
Just passing through to say Hello my son Anthony, age 3, was diagnosed with AGS shortly after his first birthday. He has been doing very well. God has really blessed us.Hope all the kids are doing Great!
Just passing through to say Hello my son Anthony, age 3, was diagnosed with AGS shortly after his first birthday. He has been doing very well. God has really blessed us.Hope all the kids are doing Great!
Felishia
Domenica, 08 Settembre 2013 23:53
Facebook Page for Families
Hi everyone,
Just wanted to repost about the facebook page for support, advice, etc.. for AGS.
The group is set private, so go to the link and then ask to join. I really hope to see you all there!
https://www.facebook.com/groups/438655506193881/
Just wanted to repost about the facebook page for support, advice, etc.. for AGS.
The group is set private, so go to the link and then ask to join. I really hope to see you all there!
https://www.facebook.com/groups/438655506193881/
Mustafa
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.
Best wishes,
Kate Strong, on behalf of the NIMBL researchers
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.
Best wishes,
Kate Strong, on behalf of the NIMBL researchers
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