We are new to this list , although not new to the SSSA. we attended the 1997 conference, and met many other families. I will be interested to see how busy this...
clampole
clampole@xxxxxx.xxx
Mar 2, 1999 8:51 pm
2
Hello- Welcome to the list! Actually I just recently started this list and you are the first one to sign up. My son Matt has Soto Syndrome. He is 8. Matt...
Brendex1@xxx.xxx
Mar 3, 1999 3:13 am
3
Cathy' I'm not sure how to get the info about this list to the SSSA.....how do I go about doing that? Any ideas? I think the more people that we get on the...
Brendex1@xxx.xxx
Mar 4, 1999 3:09 am
4
Hi Brenda, This is the SSSA web page http://www.well.com/user/sssa/index.html and I believe it is Ken who looks after the page, there is an email link. When...
clampole
clampole@xxxxxx.xxx
Mar 4, 1999 2:32 pm
5
Cathy, I sent an e-mail to the SSSA- here is a copy of what I sent- 03/03/1999 Hello, I recently started an e-mail list for soto syndrome. A member of the...
Brendex1@xxx.xxx
Mar 6, 1999 12:43 am
6
Brenda and Cathy, Wanted to drop a quick note to let you know that I will gladly add subscription access for this community to our Web page. I've been wanting...
sssa@xxxx.xxx
Mar 6, 1999 11:48 pm
7
Cathy- Here is the response I received from the SSSA. YES! Hopefully we will be getting more members now. Brenda EXCELLENT!!! I will gladly put the...
Brendex1@xxx.xxx
Mar 7, 1999 12:01 am
8
This is cool. I just noticed that we can set up directories within which we can share our stuff (pictures, articles, etc.). I set up a directory to house...
sssa@xxxx.xxx
Mar 7, 1999 12:08 am
9
Oh my gosh! This is so cool! I didn't know we could have shared files. I saw the photo of Katie (beautiful yard by the way). Matt is also 8 years old. Is...
Brendex1@xxx.xxx
Mar 7, 1999 12:15 am
10
Brenda, Good to hear from you so quickly...it's almost like a 'real' conversation. Our daughter, Katie, now 8 years old, is not very big on "attention span" ...
SSSA
sssa@xxxx.xxxx
Mar 6, 1999 6:23 pm
11
Matt is in a regular classroom setting- mainstreamed. But, we also opted for the self-contained classroom setting. The school had other ideas. We were told...
Brendex1@xxx.xxx
Mar 7, 1999 12:34 am
12
I just knew this list would catch on!Good for you Brenda!Please tell me how to access those shared files. Lisa, I'm interested in your comment about...
clampole
clampole@xxxxxx.xxx
Mar 7, 1999 2:16 pm
13
To access the shared files go to your onelist member center. Click or I guess double-click on Sotosyndrome. It will take you to the list center. There you ...
Brendex1@xxx.xxx
Mar 8, 1999 5:41 am
14
Soooo...who can I credit for setting this up???...
SSSA
sssa@xxxx.xxxx
Mar 7, 1999 11:40 pm
15
I was so excited to see Katie's picture, I uploaded some as well! Cathy PS How did you teach her to ride the bike? I think Dave is now too tall for a bike with...
clampole@xxxxxx.xx
Mar 8, 1999 3:10 pm
16
I finally figured out how to add Matt's picture to the shared files. Is there any way to put all of the photos into one folder? I was just thinking that it ...
Brendex1@xxx.xxx
Mar 10, 1999 2:34 am
17
It is a good idea, I think, to have a limited set of folders. For example, I set up a folder called 'Sotospictures'. All one needs to do is select this folder...
sssa@xxxx.xxx
Mar 10, 1999 11:06 pm
18
I've tried several ways but I must still be doing something wrong because I can't get it to work. I figured out how to upload but I can't get it (picture) to...
Brendex1@xxx.xxx
Mar 11, 1999 2:08 am
19
Brenda, Thought that might be you. I found you in our database ... you contacted us about a year ago. As for the folder-thing, let's try this. 1) Within the...
SSSA
sssa@xxxx.xxxx
Mar 10, 1999 10:42 pm
20
YES! Ok, it worked. Just one question- why is the picture I put in so much larger in size than the one you put in or the ones Cathy put in? Brenda...
Brendex1@xxx.xxx
Mar 11, 1999 5:44 am
21
Hello! I am a special education teacher at an elementary school in Alexandria, IN and I think we may have a new student with Soto Syndrome. Is it Sotos or...
Anna Epperly
AEpperly@xxxx.xxx.xx....
Mar 11, 1999 8:47 pm
22
I just found this list tonight and am so pleased. I am the mother of a 22 year old son, Mark. Mark was originally diagnosed as Sotos but later our ...
Mary Edwards
medwards@xxxxx.xxxx.x...
Mar 12, 1999 6:00 am
23
Hi, My name is Amanda, my 15 month old son, Elijah, was diagnosed with Sotos on March 10. 1999. I have absolutely no idea what to expect. I would like to know...
Potter
sapotter@xxxxxxxxxxx....
Mar 12, 1999 3:34 pm
24
Thanks, Lisa for adding this maillist to the SSSA page, great exposure! I expect we will be overwhelmed with new members. Can we put a plug in the newsletter...
clampole@xxxxxx.xx
Mar 12, 1999 2:42 pm
25
Mary and Bill, We are all glad you found this list also. Welcome. My son with Sotos is only 8 so I had to stop and think a bit when I read your letter....
Brendex1@xxx.xxx
Mar 13, 1999 2:33 am
26
Amanda, Welcome to the list. I believe the SSSA (Sotos Syndrome Support Assoc.) has a handbook for people raising children with Sotos. There are pictures in...
Brendex1@xxx.xxx
Mar 13, 1999 2:42 am
27
Note from Robert A. Naseef, Ph.D ... for anyone interested. ... Starting with this issue of Special Child Magazine, I have begun to be a regular columnist....
SSSA
sssa@xxxx.xxxx
Mar 12, 1999 8:54 pm
28
The SSSA recently received the following message ... for anyone iterested. ... To: Sotos Syndrome Support Association (SSSA) Secretary, Ms. Lisa Cruse Dear Ms....
SSSA
sssa@xxxx.xxxx
Mar 12, 1999 8:57 pm
29
For anyone interested in contacting Dr. Trevor Cole, following is his address: Dr. Trevor Cole Birmingham Women's Hospital Clinical Genetics Unit Birmingham,...
SSSA
sssa@xxxx.xxxx
Mar 12, 1999 8:26 pm
30
Subj: Notification of File Upload Date: 3/12/99 7:18:34 PM Pacific Standard Time From: notify@onelist.com (ONElist Notification) To:...
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
