Gästebuch
Dear Amutha,
Email to your address keeps bouncing. Can you please tell us how to contact you?
Sincerely,
Donna Miller
Hi Hamida,
Donna Miller has set up such a service with Yahoo:
You are invited to be on a list serve for families, caregivers, doctors, and researchers who are interested in Aicardi-Goutieres Syndrome. A list serve is a private email list of persons who have a shared interest. Anyone on the list can send an email, and it will automatically be delivered to everyone else on that list. This way we can share the latest updates, questions, and concerns with other families and professionals with interest in AGS, and it will get to all persons on the list with just one email. If you are interested in joining, there are two ways to join. You can go to http://groups.yahoo.com/group/aicardi-goutieres/ and yahoo will set up an account for you and put you on the list serve. The disadvantage of this method is that you will have a separate account to check for messages unless you already have a yahoo account. If you want to be on this list serve and have the messages go to your current email address that is not a yahoo account, then you can use the option of being invited to be on the list serve. To do this, send an email to Donna Miller at dj513662@charter.net, and ask to be invited on to the AGS list serve. She will put your name on the list using your current email address. If you have not used a list serve before, there are a few rules and courtesies to observe. Please be courteous to all persons who submit items to the list serve. Keep negative messages off the list. If you have a personal message to someone on the list serve, then please send it privately. If you do not like a message, then simply delete it. Try to keep the messages on topic, which is Aicardi-Goutieres syndrome. Messages that are sent will not be edited or moderated prior to going out to the list serve; every message sent will be received by all persons on the list. The moderator does have the right to remove persons from the list who send messages that do not follow these rules and courtesies
Hi
Can someone please remove Tracey Dicely's comment? Her post is neither constructive nor necessary and I take offense to her inane and useless comments when so many of us are fighting to keep our little ones alive.