Gästebuch
Donna Miller
Sonntag, 28. Dezember 2008 00:13
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. Also, a written copy of the Washington D.C. meeting will soon be post
Ligia Taylor
Sonntag, 07. Dezember 2008 23:44
Hi - In my family, there are members of the family (one alive and many dead) who seem to have this syndrome. I was wondering if anyone knows if the DNA gene has been indetified for this syndrome? If so, is there a hospital or doctor in the USA that specilizes in this disease? I live in the states but I am portuguese from the islands of the Azores. Do you know also if this syndrome exists in Portugal or Azores? Thank you very much. Ligia Nascimento Taylor
The Lund Family
Freitag, 05. Dezember 2008 05:15
Gavin will be starting plaquenil and will have prednisone on a \"pulse\" during his next flare. This has come about, as after a recent case of Roseola, He gained skills for 72 hours. He rolled, He held his head,he could almost sit, he laughed loudly, had new vocalizations, and was not irritable. We were pleasantly suprised to see his developmental growth was on stand by, with the interferon alpha busy clearing out the viral infection. As the interferon level has climbed back up, he has lost most of those new skills. We will try to keep you posted regarding any clinical benefits we see.
Stephanie Weinberg
Montag, 27. Oktober 2008 04:07
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I contacted a health reporter at local news station in St. Louis and she is interested in coming to do an interview with Abby and I about AGS. I want to increase awareness about AGS and see if we can't get some funding for research. Any topics you would like brought up, please let me know.
Donna Miller
Montag, 27. Oktober 2008 04:07
The conference went great. There was lots and lots of sharing. We will have an outline and some video that we will eventually put up on this site. It will probably take at least a month to get it done, so please be patient.
389 Einträge im Gästebuch