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  Back to Chat Chat with Tom Dawson

Transcript of the Special Chat With Tom Dawson, NBC producer

Tue Mar 28 2000 20:58:41 Eastern US
Jeff Hitchcock from 206.112.197.133
Good evening. We'll be starting here in a couple minutes.

Tue Mar 28 2000 21:01:21 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
sorry i am a little late. and i may have to apologize in advance, aol has a habit of kicking me off, so if they do, i will get back on asap.

Tue Mar 28 2000 21:01:51 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
this site works very well jeff. that all your doing?

Tue Mar 28 2000 21:02:02 Eastern US
Jeff Hitchcock from 206.112.197.133
Hi Tom. Welcome to the chat. I posted a note in the Parents room to remind everyone. People should be stopping by shortly.

Tue Mar 28 2000 21:02:18 Eastern US
Jeff Hitchcock from 206.112.197.133
Tom: Yes, I wrote the programs and run the site.

Tue Mar 28 2000 21:02:18 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
Thanks Jeff!!

Tue Mar 28 2000 21:02:42 Eastern US
Jeff Hitchcock from 206.112.197.133
You're welcome Lisa.

Tue Mar 28 2000 21:03:05 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
hello lisa

Tue Mar 28 2000 21:03:15 Eastern US
Brenda H. from 10.0.1.3
Tom, do you have an initial question that you want to ask?

Tue Mar 28 2000 21:03:20 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
Hello Tom

Tue Mar 28 2000 21:03:24 Eastern US
Linda/So. Utah from 216.190.28.33
Hi

Tue Mar 28 2000 21:03:47 Eastern US
Maureen from 24.31.183.150
Hi everyone. I'm working on making my dress for Easter I'll be sort of here.

Tue Mar 28 2000 21:05:12 Eastern US
Brenda H. from 10.0.1.3
Either he got kicked off or is writing a novel for us!

Tue Mar 28 2000 21:05:23 Eastern US
Kelly from 205.188.197.164
I made it!

Tue Mar 28 2000 21:05:23 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
let me introduce myself first, i am a producer for nbc weekend nightly news. i am working on a story that is generally 'medicine and the internet'. for tonight, i am interested in why your all are here, and what you find on the internet in general.

Tue Mar 28 2000 21:05:57 Eastern US
Brenda H. from 10.0.1.3
So Linda. Any news on your trip to Russia? I saw that you need a business/commercial visa.

Tue Mar 28 2000 21:06:21 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
if you don't mind, i would like to work it this way.... i would like to ask questions and have each of you answer the question individually. so i can get all your answers, rather than you responding to each others answers.... ok?

Tue Mar 28 2000 21:06:52 Eastern US
Linda/So. Utah (Kim 12 dx'd 9, pump) from 216.190.28.33
Well, we're going over on a tourist visa and HOPEFULLY we'll fly out on saturday

Tue Mar 28 2000 21:06:53 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
Tom, I am here to give and receive support in dealing with diabetes.

Tue Mar 28 2000 21:07:02 Eastern US
Brenda H. from 10.0.1.3
Linda--we will chat about that some other time. Tom, I will let you take over and I will help Jeff make sure things are going well.

Tue Mar 28 2000 21:07:16 Eastern US
Kelly (Marley 2, dx'd 11m, pumping since 19m) from 205.188.197.164
I find lots of support and different ways of handling different situations with diabetes, lots of ideas too.

Tue Mar 28 2000 21:07:29 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
and the first question is do any of you have any questions about me or the story i am working on?

Tue Mar 28 2000 21:07:52 Eastern US
Cindy from 152.163.197.67
Guess I should tell you I'm here then, huh??

Tue Mar 28 2000 21:08:28 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
hi cindy

Tue Mar 28 2000 21:08:31 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
What are you planning to do with the information you gather?

Tue Mar 28 2000 21:08:33 Eastern US
Jeff Hitchcock from 206.112.197.133
Tom, is the focus of your story about how people find help on the net?

Tue Mar 28 2000 21:08:35 Eastern US
Maureen from 24.31.183.150
I come on here for support. I use the internet for school a lot. I'm in an allied health field, and often have to find things out about various diseases/conditions.

Tue Mar 28 2000 21:09:27 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
ok no questons, i will start......

Tue Mar 28 2000 21:10:14 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
i presume most of you have a personal reason for being at a diabetes site... can you tell me briefly waht it is?

Tue Mar 28 2000 21:10:39 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
When new products are released, it is helpful to look them up on the internet to obtain more information before making purchases or recommendations. Exchanging support with others is also valuable.

Tue Mar 28 2000 21:10:48 Eastern US
Jeff Hitchcock from 206.112.197.133
Brenda and I have a child with diabetes, as I suspect do most of the people here.

Tue Mar 28 2000 21:10:53 Eastern US
Kelly (Marley 2, dx'd 11m, pumping since 19m) from 205.188.197.164
My 2 year old daughter has diabetes. She was diagnosed at 11 months of age.

Tue Mar 28 2000 21:11:03 Eastern US
Marina from 209.19.220.248
Tom, I don't get cable and I find that broadcast news seldom goes indepth into anything I'm interested in. With the internet, I can find the medical news I'm after, when I want and as much as I care to read. For example, the rezulin articles online from the LA Times were a lot more informatiive to me than the 20 second blurb from T.V.

Tue Mar 28 2000 21:12:12 Eastern US
Marina from 209.19.220.248
My nine year old son has Type I diabetes.

Tue Mar 28 2000 21:12:26 Eastern US
Laura (billetdeaux@msn.com) from 63.31.8.243
Good evening! I just joined the chat. My son, Sam, is 10, was dx'd 8/98 on the first day of fourth grade... and I've been working with the ChildrenWithDiabetes group for the last 10 months pulling together the Orlando 2000 event!

Tue Mar 28 2000 21:12:27 Eastern US
caren from 12.79.160.64
My 13 year old son was diagnosed in Aug of 98.

Tue Mar 28 2000 21:12:42 Eastern US
Maureen from 24.31.183.150
It looks like I'm currently alone in the fact that I am the one with diabetes.

I agree with everyone elses comments about finding products and being able to have a lot of information easily accessible.

Tue Mar 28 2000 21:13:45 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
2) what do you use the internet for mostly?

Tue Mar 28 2000 21:13:57 Eastern US
Cindy from 152.163.197.67
My daughter, 9 years old has Type 1 diabetes and has for 4 years. I would answer that question yes. For example, we were thinking about switching meters for checking blood sugars and I was able to compare several brands and read "reviews" of them before getting a new one.

Tue Mar 28 2000 21:14:15 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
gathering more extensive information about various topics/products.

Tue Mar 28 2000 21:14:15 Eastern US
Laura (billetdeaux@msn.com) from 63.31.8.243
Personal reasons for being at a diabetes site... support, information, more support, a shoulder to cry on, more support, more information... :)

Tue Mar 28 2000 21:14:48 Eastern US
Rhonda-CA (Tiffany,8 dx'd 10/98) from 63.237.165.58
hi. tiffany was 7 at dx/

Tue Mar 28 2000 21:15:10 Eastern US
caren from 12.79.160.64
Same here Laura. At 2am no less.

Tue Mar 28 2000 21:15:28 Eastern US
Laura (billetdeaux@msn.com) from 63.31.8.243
I use the internet to connect with professional colleagues around the world. It's fast and inexpensive. Lots of info for minimum effort. Very efficient.

Tue Mar 28 2000 21:15:29 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
Also, to find support groups!!

Tue Mar 28 2000 21:15:51 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
cindy, you read my mind....
3) any anecdotes of how being on the internet has affected treatment? have you found information that changed what you do or how you do it?

Tue Mar 28 2000 21:15:53 Eastern US
Maureen from 24.31.183.150
Gathering informations. I've learned more about diabetes on the net than I have been able to find in print. There is much more current information, and I can have access to a far wider variety. I use it for the same purpose when I need to find out information about other things.

Tue Mar 28 2000 21:15:54 Eastern US
Rhonda-CA (Tiffany,8 dx'd 10/98) from 63.237.165.58
i go to the diabetes site for a shoulder to cry on and see if anyone has any ideas that i missed.

Tue Mar 28 2000 21:16:21 Eastern US
Sonia (sonia08@ibm.net) from 32.100.95.214
Hi Tom, the reason this site is more successful than any other is trust. People who use this site trust the moderator, Jeff Hitchcock. As with many web sites, there is nothing more important than credibility. The experts and organizations associated all trust Jeff. The visitors come back because they trust this site. It is the key to this site's success.

Tue Mar 28 2000 21:16:37 Eastern US
Cindy from 152.163.197.67
I read emails, magazines online, instant message friends or family if they are on...not prfessional only fun!

Tue Mar 28 2000 21:16:37 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
I have found information that may be different than what I am doing but have never just "changed" without going over the information with my sons Endocrinologist.

Tue Mar 28 2000 21:16:57 Eastern US
Linda/So. Utah (Kim 12 dx'd 9, pump) from 216.190.28.33
I first came here because I was so shattered by Kim's dx. I needed support. The friends I have made here have helped me keep sane (or almost sane!) Plus the have great resources.

Tue Mar 28 2000 21:16:57 Eastern US
Laura (billetdeaux@msn.com) from 63.31.8.243
btw, when Sam was first dx'd, as we were leaving the hospital, the CDE handed us a CWD brochure and told us this was the best support system we'd be able to find!

Tue Mar 28 2000 21:17:07 Eastern US
Dawn (Jordan 3, dxd 13mos) from 205.188.193.37
I also use it to catch up on anything new, and to gather different ideas

Tue Mar 28 2000 21:17:30 Eastern US
Maureen from 24.31.183.150
I doubt if I would be on the pump now if it weren't for people I had met on the internet. I needed convincing that it would not annoy the life out of me and I would feel attached to it.

Tue Mar 28 2000 21:17:47 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
there are many sites that show up when i did a search for 'diabetes'.... i presume many of you have looked at various sites.... have you ever looked at the large commercial sites (like WebMD or DrKoop? what is your reaction to those type sites?

Tue Mar 28 2000 21:18:01 Eastern US
Ellen ((CamelsRFun@aol.com) Zachary 12, dx 2/89, pump 7/95) from 152.163.197.192
Hi.

Tue Mar 28 2000 21:18:09 Eastern US
Kelly (Marley 2, dx'd 11m, pumping since 19m) from 205.188.197.164
My daughter would not be on the pump either if it wasn't for the internet. I would have NEVER been offered the pump for her by any endo.

Tue Mar 28 2000 21:18:26 Eastern US
Linda/So. Utah (Kim 12 dx'd 9, pump) from 216.190.28.33
Just after Kim was dx'd someone told me that I needed to get her on a pump as soon as possible in order to keep her as healthy as possible. I was able to look at several websites, Insulin Pumpers and Kids R Pumping were 2 of them

Tue Mar 28 2000 21:18:36 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
My initial reaction by the names of them are "doc in the box" lol

Tue Mar 28 2000 21:18:38 Eastern US
Rhonda-CA (Tiffany,8 dx'd 10/98) from 63.237.165.58
i like to toss ideas around with other parents. tiff is not predictable and never has been. it's rather frustrating

Tue Mar 28 2000 21:18:55 Eastern US
Jeff Hitchcock from 206.112.197.133
Tom, my reaction to the large sites (Dr. Koop, etc.) is that they cover a lot of topics, but superficially. CWD is focused and deep.

Tue Mar 28 2000 21:19:04 Eastern US
Laura (billetdeaux@msn.com) from 63.31.8.243
When Sam started his insulin pump last month, I relied on support from folks on the listserv. It was an incredibly difficult two weeks... no sleep, fear of highs and lows, difficulty with infusion sites. I kept a play by play running on the parents listserv and got such an outpouring of support. It truly kept me going. And other people now starting the pump have emailed me that they actually printed out my messages during those first two weeks and are reading them now as they go through the process.

Tue Mar 28 2000 21:19:37 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
hi ellen. welcome. please join us and answer each quesiton briefly if you will.

Tue Mar 28 2000 21:19:46 Eastern US
Maureen from 24.31.183.150
When I'm doing a more general information search (for other topics) if find them useful, but when I want more specific information, I look for sites like CWD, insulin-pumpers.org, TIF, exc.

Tue Mar 28 2000 21:19:49 Eastern US
Linda/So. Utah (Kim 12 dx'd 9, pump) from 216.190.28.33
Because of all the information I received, and forwarded to our doc, Kim had a pump at 10.5. The youngest our team had ever put on a pump at the time. (The fax machine was overflowing and the called me to tell me to stop sending the information!)

Tue Mar 28 2000 21:19:53 Eastern US
Dawn (Jordan 3, dxd 13mos) from 205.188.193.37
I haven't really used any other sites about diabetes, I've pretty muched stayed here other than looking at product sites, this was the best support for me

Tue Mar 28 2000 21:20:09 Eastern US
Sonia (sonia08@ibm.net) from 32.100.95.214
Tom, when my son was diagnosed I spent hundreds of hours in a medical school library, researching. Now I go on-line, pull up articles through PubMed and this site, and write to researchers directly. I sometimes ask, what would you do if this was your child? The compassionate and thoughtful answers from the researchers that come as replies are truly remarkable. The internet has also eliminated duplicate studies. Prior to the internet, I would find many researchers looking at the same topic or one that had been covered sufficiently. The internet has prevented that type of wasted effort. Duplication and redundancy is reduced significantly.

Tue Mar 28 2000 21:20:26 Eastern US
Laura (billetdeaux@msn.com) from 63.31.8.243
Ditto what Jeff said. CWD is "family". :)

Tue Mar 28 2000 21:20:42 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
Tom, I have found that those larger sites don't really understand what we are all dealing with. They are not focused on the daily living strategies in the real world.

Tue Mar 28 2000 21:20:59 Eastern US
Linda/So. Utah (Kim 12 dx'd 9, pump) from 216.190.28.33
Many of the sites really don't have the necessary, indepth, day to day information that we can get here either from this site through posted information or through parents who have been through the same problems

Tue Mar 28 2000 21:21:01 Eastern US
Ellen ((CamelsRFun@aol.com) Zachary 12, dx 2/89, pump 7/95) from 152.163.197.192
I never felt the connection at the WebMD that I feel here. Here we chat with one another, and really know that the other parents understand what having a child with a chronic illness that requires 24/7 attention feels like.

Tue Mar 28 2000 21:21:06 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
let me ask you about two other types of sites....1) sites set up by national non profit orgainzations that specialize in diabetes. have you visited their sites and how do you respond to them?

Tue Mar 28 2000 21:21:23 Eastern US
Dawn (Jordan 3, dxd 13mos) from 205.188.193.37
I agree Laura! 100%

Tue Mar 28 2000 21:21:31 Eastern US
Linda/So. Utah (Kim 12 dx'd 9, pump) from 216.190.28.33
OUr team was really skeptical of the information we received from the internet at first, but now they're quite receptive

Tue Mar 28 2000 21:21:53 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
Yes, the Juvenile Diabetes Foundation International. Very Positive!

Tue Mar 28 2000 21:22:06 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
2) sites maintained by medical orgainzations... (universites, medical schools or clinics)?

Tue Mar 28 2000 21:22:40 Eastern US
Linda/So. Utah (Kim 12 dx'd 9, pump) from 216.190.28.33
I haven't been very impressed with the information from the ADA...mostly because they deal with type 2 D and we deal with type 1

Tue Mar 28 2000 21:22:50 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
Tom - I have not accessed any sites you listed in #2.

Tue Mar 28 2000 21:22:53 Eastern US
Lauren from 205.188.192.166
Tom, I am a 16 year old. When is the right time to have a snack if you are in After-school activity?

Tue Mar 28 2000 21:23:06 Eastern US
Maureen from 24.31.183.150
I was "between teams" so to speak when I first started chatting here. I also agree with the family thing... LOL if I can't get a hold of my own mother I'm often in the parents room looking for some of the moms that I have chatted with for a long time now.

Tue Mar 28 2000 21:23:30 Eastern US
Laura (billetdeaux@msn.com) from 63.31.8.243
I go to those sites to review their research and events. However, CWD does a nice job of reviewing the research... then providing the link to the initial site. That's usually how I end up there. I do look at other organizational sites... I'm certainly interested in the information; I just find it's usually already summarized on the CWD site. (and shorter with the relevant points included)

Tue Mar 28 2000 21:23:52 Eastern US
Linda/So. Utah (Kim 12 dx'd 9, pump) from 216.190.28.33
Many of us live in small towns and don't have access to medical school libraries..having the internet really helps us when we have problems.

Tue Mar 28 2000 21:24:02 Eastern US
caren from 12.79.160.64
Those sites are limited and not as complete as this one. The people here make the difference. There are kind, intelligent people here. A personal touch that is missing at the other sites.

Tue Mar 28 2000 21:24:16 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
sorry lauren. i am the wrong guy to ask.

Tue Mar 28 2000 21:24:24 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
I agree with Laura's response to #2

Tue Mar 28 2000 21:24:28 Eastern US
Cindy from 152.163.197.67
For me the larger commercial sites, non-profit sites answer the questions, but don't always address the need for support. The #2 part of that question I have found the sites to be detailed in information.

Tue Mar 28 2000 21:24:31 Eastern US
Maureen from 24.31.183.150
I don't spend much time on the ADA or JDFI sites. Occassionally I will if I'm looking for something specific, but that is it. I find much more practical and specific information in other places. I know the general "what is diabetes" questions that they cover for the most part on those sites.

Tue Mar 28 2000 21:24:33 Eastern US
Ellen ((CamelsRFun@aol.com) Zachary 12, dx 2/89, pump 7/95) from 152.163.197.192
I go to the JDF site to read what's new in their advocacy and funding for a cure. I go to the ADA site to read the journals - Diabetes Spectrum, Clinical Diabetes and Diabetes Care. I've taken some bits of information to school for the teachers - brief sheets on recognizing symptoms or having a child with diabetes in your classroom from those websites in the past.

Tue Mar 28 2000 21:24:49 Eastern US
Sonia (sonia08@ibm.net) from 32.100.95.214
Tom,it goes back to trust,and it also goes to a true dedication to having a useful site. Do the organizations appoint people to their web committees for political reasons? Because they are large donors? Unfortunately, some of these sites are just not useful because the content is not sufficient and they aren't talking with users. Some don't even have a search engine! If they could appoint people like Jeff who are competent and trusted they could have an improved presence.

Tue Mar 28 2000 21:25:07 Eastern US
Brenda H. from 10.0.1.3
It seems to me that the JDF site discusses only JDF research/events. The ADA site talks about the ADA. Jeff tries to cover as many organizations and research as he can.

Tue Mar 28 2000 21:25:20 Eastern US
Laura (billetdeaux@msn.com) from 63.31.8.243
I enjoy reviewing the Diabetes Research Institute Foundation site. When they have their annual event, CWD summarizes (is this a major theme?) for a great quick look at the recent research.

Tue Mar 28 2000 21:25:24 Eastern US
Lauren from 205.188.192.166
Tom, I am a 16 year old. When is the right time to have a snack if you are in After-school activity?

Tue Mar 28 2000 21:25:39 Eastern US
Jeff Hitchcock from 206.112.197.133
We also answer questions in the "Ask the Diabetes Team" area, unlike any other site.

Tue Mar 28 2000 21:25:55 Eastern US
Marina (rosaalba@wans.net) from 209.19.220.180
There was once a study heralded at one of the diabetes charity sites regarding Type I. I went over to the NIH site and found out that the particular study they referred to actually was rather broadly focused and did not directly apply to Type I. In fact, they were screening Type I's out of the initial study.

Tue Mar 28 2000 21:26:06 Eastern US
Jeff Hitchcock from 206.112.197.133
Lauren: E-mail me personally: jeffh@castleweb.com.

Tue Mar 28 2000 21:26:11 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
next question.... you are all here, at this site run by jeff. he is not a doctor or a researcher. he does not represent a large organization.... why are you at this site? (you answered it already sonia.... actually, yo are all ahead of me.)

Tue Mar 28 2000 21:27:29 Eastern US
Linda/So. Utah (Kim 12 dx'd 9, pump) from 216.190.28.33
Because he's a parent of a child with D! He knows exactly what we're going through, as parents. Plus, he has the kind of indepth information here that we're looking for.

Tue Mar 28 2000 21:27:48 Eastern US
Maureen from 24.31.183.150
Jeff doesn't pretend to be a doctor. He does have doctors, RD, RN, CDE's and others answer the questions. I trust him. It is a well organized site.

Tue Mar 28 2000 21:27:55 Eastern US
Laura (billetdeaux@msn.com) from 63.31.8.243
Be right back... Sam is calling me from upstairs (bedtime). Oh... I'll answer this. Jeff's a parent, just like we are. Easy question. He has the same fears and concerns that we do. AND he knows how to make a website (which we DON'T)!

Tue Mar 28 2000 21:27:57 Eastern US
Marina (rosaalba@wans.net) from 209.19.220.180
Because of the internet, I've been able to contact researchers directly. I'm no longer dependant on gleaning info. from diabetes orgs who tend to put their own spin on things.

Tue Mar 28 2000 21:28:17 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
I am here because the other people "know" what I am talking about. The trust factor, advice, suggestions, and links to further information. It's hard to say it in such a short time. The close monitoring that is done to keep people off who are not serious.

Tue Mar 28 2000 21:28:18 Eastern US
Dawn (Jordan 3, dxd 13mos) from 205.188.193.37
I'm here because you learn more from the friends you make and their experiences with this disease than you can from any book. There are some times different answers for different ages and here we are hearing from parents who are there or have already been there.

Tue Mar 28 2000 21:28:22 Eastern US
Sonia (sonia08@ibm.net) from 32.100.144.29
I think of a web site like an "open house". If it has "curb appeal" people will visit. Almost anyone can create that. It is the content, the dedication to update regularly, to be innovative, to reach out to the visitor, and the ability to create trust that will motivate someone to return.

Tue Mar 28 2000 21:28:31 Eastern US
Cindy from 152.163.197.67
What they said!!

Tue Mar 28 2000 21:28:36 Eastern US
caren from 12.79.160.64
To have a child with diabetes is an awesome responsibility. Only others in the same situation can truely understand.

Tue Mar 28 2000 21:29:02 Eastern US
Ellen ((CamelsRFun@aol.com) Zachary 12, dx 2/89, pump 7/95) from 152.163.197.192
Jeff has broght the personal connection to this website. It's tangible. I live in south Florida but have flown as far as Bozeman MT to meet another family I met in the parents chat room at this website. We have a REASON to connect.

Tue Mar 28 2000 21:29:06 Eastern US
Maureen from 24.31.183.150
The sites I have the most problems with are the "quacks"... drink our potion at midnight, when there is a full moon, for 7 months and you'll be cured... scary part is people will spend lots of money on those things.

Tue Mar 28 2000 21:29:08 Eastern US
Jeff Hitchcock from 206.112.197.133
CWD is unique too in that it has a very active community of parents and people living with diabetes who contribute to the knowledge. These chats are just one example.

Tue Mar 28 2000 21:29:25 Eastern US
Marina (rosaalba@wans.net) from 209.19.220.180
When I first came online, I'd come here a lot. Now, I kind of scan a little of everywhere.

Tue Mar 28 2000 21:29:46 Eastern US
Moira (Lauren, 8, dx'ed @ 6) from 63.252.20.212
Plus it's a place you can find someone in exactly the same situation you are in -- 24 hours a day! the middle of the night worries are always answered around here

Tue Mar 28 2000 21:30:16 Eastern US
Steph Schwartz (ssq@swq.com) from 24.131.12.238
evening all

Tue Mar 28 2000 21:30:26 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
My baby sitter was able to get help one evening when I couldn't be reached.

Tue Mar 28 2000 21:30:32 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
have any of you run across information that you considered inaccurate or even dangerous on the internet?

Tue Mar 28 2000 21:30:49 Eastern US
Moira (Lauren, 8, dx'ed @ 6) from 63.252.20.212
It's kind of like the "Cheers" of diabetes LOL

Tue Mar 28 2000 21:30:57 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
About diabetes?

Tue Mar 28 2000 21:31:06 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
hi steph.

Tue Mar 28 2000 21:31:19 Eastern US
Dawn (Jordan 3, dxd 13mos) from 205.188.193.37
not yet!

Tue Mar 28 2000 21:31:23 Eastern US
Brenda H. from 10.0.1.3
Many mornings I'll check on the chat rooms and find that some moms (usually it's moms) chatting through the wee hours of the night because their kids were having lows/highs/sick and they chat to stay awake between testing their child's blood sugar every hour or two.

Tue Mar 28 2000 21:31:40 Eastern US
Maureen from 24.31.183.150
I know that I'm the only "non-parent" here right now, but this really is a community for people like me who have diabetes, just as much as parents. Parents are a huge portion of this group, but so are "we"... I think the good communication between the D and the loved ones if very healthy here...

Tue Mar 28 2000 21:31:46 Eastern US
Linda/So. Utah (Kim 12 dx'd 9, pump) from 216.190.28.33
We laugh and cry together. We know each others' families...

Tue Mar 28 2000 21:32:16 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
I guess the answer to your question Tom is NO

Tue Mar 28 2000 21:32:22 Eastern US
Brenda H. from 10.0.1.3
On occasion someone will post some "quackery" in one of the chat rooms, but Jeff doesn't allow this and we clear the rooms so no one sees some doc from China saying "Send me $500 and I'll cure your diabetes."

Tue Mar 28 2000 21:32:25 Eastern US
Moira (Lauren, 8, dx'ed @ 6) from 63.252.20.212
Plus Maureen we parents love talking to you who experience this all first hand . . .

Tue Mar 28 2000 21:32:40 Eastern US
Jeff Hitchcock from 206.112.197.133
Tom: there are many web sites about diabetes that purport to offer a miracle cure. I would consider those the be both inaccurate and dangerous.

Tue Mar 28 2000 21:32:55 Eastern US
Linda/So. Utah (Kim 12 dx'd 9, pump) from 216.190.28.33
I've run into information on "cures" for d that aren't cures...but by far most of the information has been accurate with regard to D.

Tue Mar 28 2000 21:33:12 Eastern US
Maureen from 24.31.183.150
I have. I've even got some scary spams in my mailbox. I am amazed at what some people believe.

Tue Mar 28 2000 21:33:16 Eastern US
Cindy from 152.163.197.67
Tom I have some friends who did that very think you are asking

Tue Mar 28 2000 21:34:32 Eastern US
Sonia (sonia08@ibm.net) from 32.100.144.29
Tom,our family is extremely fortunate. We have access to perhaps the best clinic and diabetic pediatric endocrinologist in the world. Not everyone has that. I want to give something back. I can't imagine what it would be like to be without the support we experience at our Center, but I can help by reaching out to other parents. Our Center has a web site, but I wouldn't be able to reach as many people as I can through CWD. I want to be able to provide research updates to give other parents hope. There are many reasons now to have real hope for a cure. If I can share those reasons, it might help motivate us all to keep trying.

Tue Mar 28 2000 21:34:38 Eastern US
Mary from Ma. from 152.163.213.51
hello!

Tue Mar 28 2000 21:34:55 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
let me go back to an early quesiton now that there are more people... has the information you gleaned here... or at other sites... changed the treatment that you follow? and whas that change significant? if you answered this earlier, please ignore) hi mary

Tue Mar 28 2000 21:34:57 Eastern US
Ellen ((CamelsRFun@aol.com) Zachary 12, dx 2/89, pump 7/95) from 152.163.197.192
Well the FDA had approved Rezulin, Propulsid...as safe and effective medications - would you now consider that quackery?

Tue Mar 28 2000 21:35:20 Eastern US
Moira (Lauren, 8, dx'ed @ 6) from 63.252.20.212
Touche Ellen!

Tue Mar 28 2000 21:35:57 Eastern US
Maureen from 24.31.183.150
I don't see it on this site because Jeff (and others that help) do remove it. There are inaccurate sites on just about every subject I've done a very indepth search on. That is one good thing about the "big" sites... I trust them for general information that is accurate. I don't trust personal sites until I have some sort of outside back that they have been accurate in what they have presented so far.

Tue Mar 28 2000 21:36:22 Eastern US
Steve (Allie - 14 - dx 6/97 - pump 12/99) from 24.189.234.134
Hi Tom - Actually, I think the folks in this room were a great impetus not in changing the overall treatment path for my daughter, but rather in fine-tuning the little 'tricks of the trade' that the doctors don't know because they don't live with the disease 24x7

Tue Mar 28 2000 21:36:47 Eastern US
Moira (Lauren, 8, dx'ed @ 6) from 63.252.20.212
Hi mary!

Tom I think this website gave me the confidence to see that I could understand my daughter's medical needs as much if not more than the endocrinologist. It helped me push for a pump at ay oung age, helped me gain confidence back in the beginning in making insulin adjustments

Tue Mar 28 2000 21:37:00 Eastern US
Dawn (Jordan 3, dxd 13mos) from 205.188.193.37
The info I have gained hasn't changed how I treat my daughter, but how I deal with this disease, I always felt it was "textbook" until I heard more from other people and tried different ideas.

Tue Mar 28 2000 21:37:17 Eastern US
caren from 12.79.160.64
My son wants the pump from reading info on this site and the KIDSRPUMPING site. I do not think he would be thinking of it at all if not for the internet.

Tue Mar 28 2000 21:37:17 Eastern US
Laura (billetdeaux@msn.com) from 63.31.8.243
Yes. Early on, our clinic would only allow us to use R and NPH with Sam. We were having a lot of difficulty with control. Despite the fact that the clinic did not support our using Humalog so "early" in the process, the group encouraged me to push for it, and it made a lot of difference in Sam's health.

Tue Mar 28 2000 21:37:24 Eastern US
Steve (Allie - 14 - dx 6/97 - pump 12/99) from 24.189.234.134
All sorts of little things....like testing soda at mcdonalds with a glucose meter to see if the kid behind the counter gave us regular instead of diet......

Tue Mar 28 2000 21:37:27 Eastern US
Mary from Ma. from 152.163.213.51
tom..yes, the internet has changed how we ahndle ot children's diabetes care IMMENSELY. Our son was (and still is) one of the youngest kids in the area to be on an insulin pump. we never would have considered a pump for him if we hadn't found this website and alot of the people here for support

Tue Mar 28 2000 21:37:39 Eastern US
Ellen ((CamelsRFun@aol.com) Zachary 12, dx 2/89, pump 7/95) from 152.163.197.192
I've been able to share with many parents how much the insulin pump has changed my son's life for the better. That has felt good. I know I try to strive for good control while also considering my son's quality of life as a result of all I have learned on the internet. We do have a proactive excellent pediatric endocrinologist as well, and she also prints out material from this website and shares it with her patients.

Tue Mar 28 2000 21:37:47 Eastern US
Linda/So. Utah (Kim 12 dx'd 9, pump) from 216.190.28.33
One mother told us all of an experience she had with protein in her daugher's urine. Because of the experience she had, many of us have contacted our docs and requested a 24 hr. urine catch in the hope of preventing kidney disease. (Most docs believe that it isn't necessary to check for kidney disease until the child has had D 5 yrs) This Kidney problem was caught much earlier than would normally have been the case.

Tue Mar 28 2000 21:38:02 Eastern US
Moira (Lauren, 8, dx'ed @ 6) from 63.252.20.212
Me too Laura, now that I look back on it. This site helped me go and suggest Humalog. We swear by it now. I've also come on line and been told "Call the endo! NOW!" and done it.

Tue Mar 28 2000 21:38:14 Eastern US
Brenda H. from 10.0.1.3
Back in Dec. I e-mailed a medical question to another web site (not diabetes related) and they said it might take a while to get an answer. Well, it's almost April and I have not yet gotten an answer. For the questions people post here, I believe most of the docs who answer, will do so asap, but it often takes a while to get the answer published on the site. Jeff can only get to so much in a day. He does this in his "spare" time!

Tue Mar 28 2000 21:38:23 Eastern US
Laura (billetdeaux@msn.com) from 63.31.8.243
We also have some good discussions when new products come out on the market. Like the AtLast monitor for example. THat discussion was quite helpful.

Tue Mar 28 2000 21:38:34 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
another question.... the ads you see on sites... do you see them as useful? or not?

Tue Mar 28 2000 21:38:54 Eastern US
Steve (Allie - 14 - dx 6/97 - pump 12/99) from 24.189.234.134
And, this site is wonderful for the kids. Allie has access to a lot of teens who, like her, have diabetes - and from all around the world. Gives them an instant 'rapport' - something to talk about - but most of the time they just talk like kids

Tue Mar 28 2000 21:39:03 Eastern US
Jeff Hitchcock from 206.112.197.133
The ads pay for the cost of running the site.

Tue Mar 28 2000 21:39:07 Eastern US
Sonia (sonia08@ibm.net) from 32.100.144.29
Tom, one of the best things Jeff does with this site is warn people about the "fraudulent" schemes. Before this site, we were "hounded" by a group trying to get funding for a non-invasive blood test meter that may or may not exist. These people have since been indicted by the SEC. I know that their scam has been halted partially because of the use of the internet.

Tue Mar 28 2000 21:39:21 Eastern US
Linda/So. Utah (Kim 12 dx'd 9, pump) from 216.190.28.33
Most of the parents who come here are very proactive. We're not the normal "let's see where D takes us" kind of parents. we are hungry for any information we can get on keeping our kids as healthy as possible.

Tue Mar 28 2000 21:39:33 Eastern US
Marina (rosaalba@wans.net) from 209.19.220.180
I can't say it's changed how we treat my son's diabetes. We are very vigilant and always have been. We're looking into the pump and that's not something I'd otherwise know about, but you have to be careful because sometimes, the stories you hear are just a little too rosey, you have to step back and take stock. Ask yourself questions. Ultimately, the decision and the consequences are yours.

Tue Mar 28 2000 21:40:11 Eastern US
Ellen ((CamelsRFun@aol.com) Zachary 12, dx 2/89, pump 7/95) from 152.163.197.192
I see them as useful to investigate new products. I always want cutting edge for my child.

Tue Mar 28 2000 21:40:20 Eastern US
Steve (Allie - 14 - dx 6/97 - pump 12/99) from 24.189.234.134
yup - check and see how many people went to the lifescan site when they spoke about a camp scholarship......got lots of hits, i bet

Tue Mar 28 2000 21:40:35 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
Sometimes I use the ads when I see a product/topic I am interested in. I find them helpful in introducing me to things I have never heard of also.

Tue Mar 28 2000 21:40:36 Eastern US
caren from 12.79.160.64
The starbrite game is great. I found that here in an add.

Tue Mar 28 2000 21:40:41 Eastern US
Linda/So. Utah (Kim 12 dx'd 9, pump) from 216.190.28.33
We ordered Kim's id necklace from an ad we saw here. The team liked it so well, they took the information to give to other parents.

Tue Mar 28 2000 21:41:16 Eastern US
Steve (Allie - 14 - dx 6/97 - pump 12/99) from 24.189.234.134
I found a lot of sites for pump supplies here - and got lots of info on all sorts of things

Tue Mar 28 2000 21:41:43 Eastern US
Mary from Ma. (Chris, 10, dx'd @ 4 and pumping since 8, and Angela 11 dx'd @9) from 152.163.213.51
Honestly, I don't usually check them out, unlees its something we were looking at buying for oe of our children anyway..

Tue Mar 28 2000 21:42:01 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
My sons grandparents ordered the AtLast meter after seeing a banner about it.

Tue Mar 28 2000 21:42:04 Eastern US
Marina (rosaalba@wans.net) from 209.19.220.180
I like the "what's new" page. I usually try to check on it once a week.

Tue Mar 28 2000 21:42:11 Eastern US
Maureen from 24.31.183.150
I find the ads useful. I know they aren't scams, and I know they fund the site.

Tue Mar 28 2000 21:42:40 Eastern US
Marina (rosaalba@wans.net) from 209.19.220.180
Unfortunately, I tend to completely ignore ads.

Tue Mar 28 2000 21:42:42 Eastern US
Laura (billetdeaux@msn.com) from 63.31.8.243
One other thing... I'm not sure which question this might answer. Some of the conversations we have together are just so doggone funny, they have you in stitches. Other moms do really stupid things and you realize you've done exactly the same thing in a stupider way... the "human-ness" connects us. We need to laugh at our daily routines... sometimes they are truly so funny! I keep thinking about the mom who locked her toddler in the car last month and the toddler was yelling out the window "Help, my mommy's going to shoot me!" :) Or the conversations about Kool-Aid poop (funny colors). Or eating your kid's snack because you're hungry...and when they get low, you don't have anything. Now WHO else could you have those discussions with?

Tue Mar 28 2000 21:43:02 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
It also stirs up curiosity when you see the thing blinking in the upper right corner!!! lol

Tue Mar 28 2000 21:43:20 Eastern US
Steve (Allie - 14 - dx 6/97 - pump 12/99) from 24.189.234.134
We also share a lot of information. For example, there was an ad in parade magazine last weekend for the At Last meter. So, a lot of us came here and asked - and found a couple of people who had tested it out - helps to be an informaed consumer.

Tue Mar 28 2000 21:43:27 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
i have been mostly asking quesitons and not concentrating on the answers now... but i am going to save this conversation and reread it . i may want to talk to some of you more on the phone. if you are willing to do this, please email me at my office and i will contact you if i have futher questions... if that is ok with you jeff? (for any of you under 18, please have your parents email me)

Tue Mar 28 2000 21:43:28 Eastern US
Dawn (Jordan 3, dxd 13mos) from 205.188.193.37
Sorry all, my daughter needs some hugs. Thank you Tom for being interested in our experiences.

Tue Mar 28 2000 21:43:52 Eastern US
Jeff Hitchcock from 206.112.197.133
Tom, it's OK with me if people contact you.

Tue Mar 28 2000 21:44:30 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
now, do any of you have any questions for me?

Tue Mar 28 2000 21:44:31 Eastern US
Maureen from 24.31.183.150
I'm the youngest one in here... and I'm legal, so that shouldn't be a problem Tom.

Tue Mar 28 2000 21:44:47 Eastern US
Sonia (sonia08@ibm.net) from 32.100.144.29
Tom, let me give you an amazing example of how well this site can work. A company called Cygnus developed a Glucowatch that will beep when you are too high or low and will take a reading every 20 minutes. This potentially life saving device was scheduled to be reviewed before the FDA. I asked parents from this site if they would join me in writing letters of support and would join me in D.C. The response was overwhelming. There is no way I could have received the hundreds of lengthy letters and had the personal tesimonies in D.C. of incredibly articulate parents and adults with diabetes without this site. Only this site is "non-political" enough to allow true free speech. This site allows us to come together, share research information and have a stronger, more unified voice. The device was recommended for approval. We hope final approval will come any day.

Tue Mar 28 2000 21:45:10 Eastern US
Mary from Ma. (Chris, 10, dx'd @ 4 and pumping since 8, and Angela 11 dx'd @9) from 152.163.213.51
tom..what is the info for?..I came in late..

Tue Mar 28 2000 21:45:33 Eastern US
Laura (billetdeaux@msn.com) from 63.31.8.243
Yup. I missed the first few minutes. What's the intended outcome of these interviews... how are you using the information? Are you diabetic? Anyone in your family?

Tue Mar 28 2000 21:45:59 Eastern US
Jeff Hitchcock from 206.112.197.133
Sonia ... I still have that letter I wrote about the Glucowatch. I want to get it framed and give it to Cygnus.

Tue Mar 28 2000 21:46:27 Eastern US
Brenda from 63.17.164.220
The most amazing thing about this site is that on the days I feel like giving up, someone always encourages me...I never feel alone anymore...I know someone cares and that means everything to me. I have type 2 diabetes and my daughter who is 17 has MODY 2.

Tue Mar 28 2000 21:46:44 Eastern US
Laura (billetdeaux@msn.com) from 63.31.8.243
Yeah... I still have my speech with the coffee I spilled all over it.... (or was that sweat?)

Tue Mar 28 2000 21:47:53 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
ok, the two minute tour.... i am produicing a story for nbc weekend nightly news.... on medicine and the internet. i am not sure exactly what part of that large story i am going to do eventually..... i am 'finding' the story now, by talking to people like yourselves and jeff and others.... this conversation is really for 'background'. information to help me understand what is going on.... i do not anticipate using any of this directly on the air. this is a tv piece and i must have moving pictures rather than text on the screen.

Tue Mar 28 2000 21:47:57 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
Tom, I think all of us are interested in what you are planning to do with the information you have gathered and will it be available to us?

Tue Mar 28 2000 21:47:58 Eastern US
Judith from 63.162.254.33
Hello...sorry I'm late.
Tom, the GREAT help I've gotten from this site is in our group's efforts to help Russian children with diabetes. Jeff (and others)have publicized their plight. As a result we've collected many thousands of dollars worth of supplies for them. And in fact, a Russian orphan with diabetes may soon be at home in the US because of the internet!

Tue Mar 28 2000 21:48:41 Eastern US
Ellen ((CamelsRFun@aol.com) Zachary 12, dx 2/89, pump 7/95) from 152.163.197.192
Tom, I hope that you will sum up your report with the information that diabetes is a devastating, debilitating destructive disease that MUST BE CURED.

Tue Mar 28 2000 21:49:00 Eastern US
Brenda from 63.17.164.220
Amen, Ellen.

Tue Mar 28 2000 21:49:24 Eastern US
Judith from 63.162.254.33
People from all over the world have responded. A mother in Italy is currently collecting insulin for the Russian kids. Donations have come from Canada, Australia, etc.

Tue Mar 28 2000 21:49:47 Eastern US
Laura (billetdeaux@msn.com) from 63.31.8.243
Tom... Come to Orlando for our CWD first event ever: Letting Kids Be Kids! You'll get some great moving pictures there! 100 families from all over the country (and Canada, and the Netherlands)... 400 people who all have one thing in common... a child with Type 1 diabetes. We'd love to have you along!

Tue Mar 28 2000 21:50:10 Eastern US
Judith from 63.162.254.33
Through this chat, I've made connections with people all over the world dealing with the same issues. We find much in common.

Tue Mar 28 2000 21:50:41 Eastern US
Ellen ((CamelsRFun@aol.com) Zachary 12, dx 2/89, pump 7/95) from 152.163.197.192
This website has been a LIFELINE for me. I feel perhaps closer to many of the people I've met here, than some of my relatives.

Tue Mar 28 2000 21:50:44 Eastern US
Brenda H. from 10.0.1.3
And let people know that insulin is NOT a cure; our kids will not OUTGROW this disease;they cannot take a pill, simply diet and exercise.

Tue Mar 28 2000 21:51:22 Eastern US
Steph Schwartz (ssq@swq.com) from 24.131.12.238
Tom__ As A professional and a person who writes for this site, I can tell you that it's great to be able to "publish" quickly, and be peer-reviewed within an hour or 2 if need be. We can provide new information to our cxonstituents almost as quickly as it is available.

Tue Mar 28 2000 21:51:25 Eastern US
Ellen ((CamelsRFun@aol.com) Zachary 12, dx 2/89, pump 7/95) from 152.163.197.192
Laura, just to add - those 100 families met here at this website!

Tue Mar 28 2000 21:51:33 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
Tom, the internet has also been useful in directing children to the various camps that are offered to children with diabetes. There they can feel normal when everyone else has diabetes also.

Tue Mar 28 2000 21:51:55 Eastern US
Moira (Lauren, 8, dx'ed @ 6) from 63.252.20.212
I know it sounds corny, but people like Judith and Ellen and Mary are my HEROES. They pulled me through some tough, tough times (all together now: aaaawwwwwwww)

Tue Mar 28 2000 21:52:16 Eastern US
Judith jrenwick@otherside.com (David, 14, diagnosed at age 2 months) from 63.162.254.33
AAWWWWW!

Tue Mar 28 2000 21:52:39 Eastern US
Maureen from 24.31.183.150
Complications are NOT the diabetics fault! We were not meant to be beta cells/function as insulin. We can reduce our changes by being in "good" control, but it is still a crap shoot in the end.

Tue Mar 28 2000 21:52:56 Eastern US
Laura (billetdeaux@msn.com) from 63.31.8.243
Hi Ellen! :) Yes, thank you. You are absolutely right. One hundred families that met on this site, have chatted for a year, shared our stories, successes, troubles... and we'll finally SEE each other (I'll be the one behind the dark glasses). You coming?

Tue Mar 28 2000 21:53:12 Eastern US
Ellen ((CamelsRFun@aol.com) Zachary 12, dx 2/89, pump 7/95) from 152.163.197.192
Tom, I'd also suggest you lurk and watch the parents chat room to see what the interaction is like and how we support one another there.

Tue Mar 28 2000 21:53:21 Eastern US
Mary from Ma. (Chris, 10, dx'd @ 4 and pumping since 8, and Angela 11 dx'd @9) from 152.163.213.51
Moira..i'm BLUSHING!!!!!!

Tue Mar 28 2000 21:53:23 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
i would like to ellen.... but i must say up front, this is NOT a story about diabetes... it is about people finding answers in ways they could not have twenty years ago. please forgive me for not focusing on what is your primary concern.... as you must know, families going thru cancer and mental illness and liver disease are all turning to the web for both information and support like yourselves.

Tue Mar 28 2000 21:53:36 Eastern US
Marina (rosaalba@wans.net) from 209.19.220.180
and Type I has nothing to do with being sedentary, or overweight. It's an autoimmune disease.

Tue Mar 28 2000 21:53:51 Eastern US
Steve (Allie - 14 - dx 6/97 - pump 12/99) from 24.189.234.134
now i'm jealous since i can't be there....how about next year in NYC

Tue Mar 28 2000 21:53:58 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
would love to come to orlando... can i bring the kids?

Tue Mar 28 2000 21:54:06 Eastern US
Ellen ((CamelsRFun@aol.com) Zachary 12, dx 2/89, pump 7/95) from 152.163.197.192
Laura, if there's still room, our family will be there!

Tue Mar 28 2000 21:54:06 Eastern US
Jeff Hitchcock from 206.112.197.133
Tom, I think you get a sense of the bond that we share here, because of the interactive nature of the web. This is what the revolution is all about.

Tue Mar 28 2000 21:54:10 Eastern US
Judith jrenwick@otherside.com (David, 14, diagnosed at age 2 months) from 63.162.254.33
Tom, many of us have arranged to meet "cyberfriends" in person. We do truly feel as if we know each other well.

Tue Mar 28 2000 21:54:16 Eastern US
caren from 12.79.160.64
People have no clue. If you don't have a child with diabetes it is impossible to know. Our kids look healthy.

Tue Mar 28 2000 21:54:23 Eastern US
judy (Marc 13 dx'd 8-99) from 208.15.106.70
Hello Everyone! :-)

Tue Mar 28 2000 21:54:24 Eastern US
Jeff Hitchcock from 206.112.197.133
Tom: Indeed, bring the kids. We're all bringing our kids.

Tue Mar 28 2000 21:54:48 Eastern US
Moira (Lauren, 8, dx'ed @ 6) from 63.252.20.212
Tom, I think this site worked for me as a 24-hour expert advice spot -- like when Lauren was up puking and her bg's were 20 but she had ketones and I was frantic and I came on line (since I had to stay up all night) and there were like three other moms in the SAME situation at the SAME time. Amazing

Tue Mar 28 2000 21:54:53 Eastern US
Sonia (sonia08@ibm.net) from 32.100.144.29
Tom, I wish you could have been with those of us that travelled to the FDA hearing. We have a connection that is indescribable. Please consider yourself officially invited to our first "face to face" event....maybe this has been covered? in Orlando this June. We have often said nobody understands what our 24 hour day is like. Please come and help us communicate how truly tough this is. Insulin is not a cure. I have not slept through the night (or even had over four hours at a time) in over eight years. We don't talk about "dead in bed" syndrome much or blindness, or kidney failure. We are here for support, but we don't need to talk about it. It is the nightmare we each live with. Please help us to share our stories. We get so tired of hearing, "so when is your child going to outgrow this?". Two kids died in my state last year. The pediatricians sent the kids home and told the mothers they were overreacting. We live with this and understand and appreciate each other. People from all over the world will be in Orlando, but our frustrations, hopes and dreams for a cure are the same :-)

Tue Mar 28 2000 21:55:45 Eastern US
Laura (billetdeaux@msn.com) from 63.31.8.243
Tom. Absolutely. I'll email you tonight re: Orlando. Wooo-hooooooooooo! (Sorry, excitement is contagious...)

Tue Mar 28 2000 21:55:47 Eastern US
Moira (Lauren, 8, dx'ed @ 6) from 63.252.20.212
Speaking of which, Linda, I will be in St. George Sat-Thurs. Wanna meet? (email me moiramcc@prodigy.net)

Tue Mar 28 2000 21:55:58 Eastern US
caren from 12.79.160.64
The stories of kids with diabetes are few and far between. Rosie ODonnald canceled a show my son was supposed to be on when he was firt diagnosed. Talk about an esteem destroyer. Especially after telling the kiddies at school he was going to be on.

Tue Mar 28 2000 21:56:09 Eastern US
Ellen ((CamelsRFun@aol.com) Zachary 12, dx 2/89, pump 7/95) from 152.163.197.192
Understood Tom, then I'd like to request that at some point in the future you do a story that deals with the 24 hours a day 7 days a week 365 days a year aspects of living with diabetes...for even when our children are asleep they are not safe from hypoglycemic seizure. Type 1 diabetes gets little press compared to other diseases.

Tue Mar 28 2000 21:56:30 Eastern US
Maureen from 24.31.183.150
LOL, but at the same time I can talk about diabetes in here, I can also come in here with the other "important" questions in life... one that come to mind is "Is there a way to get wrinkles out of your clothes without ironing them?"

Tue Mar 28 2000 21:56:34 Eastern US
Lisa (Chapman 6, diagnosed 2) from 152.163.197.46
Tom - thank you for your interest in doing a story about this. Many of us would not be where we are in the coping process had we not had the Internet. We may not hear about the various products available to us either. And lastly, where research is going and the success of it as it relates to our needs.

Tue Mar 28 2000 21:56:38 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
thank you all very much for talking to me. please send me your phone nubmers or email addresses and i may bug you again. you have all been wonderful.

Tue Mar 28 2000 21:57:20 Eastern US
Mary from Ma. (Chris, 10, dx'd @ 4 and pumping since 8, and Angela 11 dx'd @9) from 152.163.213.51
tom..it was nice meeting you!

Tue Mar 28 2000 21:57:36 Eastern US
Moira (Lauren, 8, dx'ed @ 6) from 63.252.20.212
Thanks Tom. This site deserves the PR

Tue Mar 28 2000 21:57:38 Eastern US
Jeff Hitchcock from 206.112.197.133
Tom, thanks for taking the time to chat with us. I hope you've gained a sense for the power of the Internet.

Tue Mar 28 2000 21:57:44 Eastern US
Lisa (LManlyCSH@aol.com) from 152.163.197.46
you are welcome Tom!!!

Tue Mar 28 2000 21:57:53 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
jeff, thanks for setting this up. i am giving you a round of applause, tho i doubt you can hear it.

Tue Mar 28 2000 21:58:01 Eastern US
Lisa (LManlyCSH@aol.com (Chapman's mom)) from 152.163.197.46
good night!

Tue Mar 28 2000 21:58:04 Eastern US
Judith jrenwick@otherside.com (David, 14, diagnosed at age 2 months) from 63.162.254.33
Tom, the net is also an excellent way for health professionals to connect and share information.

Tue Mar 28 2000 21:58:08 Eastern US
Jeff Hitchcock from 206.112.197.133
I can ... thanks.

Tue Mar 28 2000 21:58:09 Eastern US
Laura (billetdeaux@msn.com) from 63.31.8.243
G'night!

Tue Mar 28 2000 21:58:24 Eastern US
Steve (Allie - 14 - dx 6/97 - pump 12/99) from 24.189.234.134
maybe in closing - a quick geographic roll call....

Long Island New York

Tue Mar 28 2000 21:58:48 Eastern US
Jeff Hitchcock from 206.112.197.133
Cincinnati, Ohio

Tue Mar 28 2000 21:58:51 Eastern US
Cindy from 152.163.197.67
Atlanta, Georgia

Tue Mar 28 2000 21:58:51 Eastern US
caren from 12.79.160.64
Me too Steve.

Tue Mar 28 2000 21:58:59 Eastern US
Moira (Lauren, 8, dx'ed @ 6) from 63.252.20.212
Plymouth, Mass

Tue Mar 28 2000 21:59:05 Eastern US
Judith jrenwick@otherside.com (David, 14, diagnosed at age 2 months) from 63.162.254.33
southern Indiana....

Tue Mar 28 2000 21:59:05 Eastern US
Lisa (LManlyCSH@aol.com (Chapman's mom)) from 152.163.197.46
Alabama

Tue Mar 28 2000 21:59:05 Eastern US
Steph Schwartz (ssq@swq.com) from 24.131.12.238
Ann Arbor, MI

Tue Mar 28 2000 21:59:11 Eastern US
Steve (Allie - 14 - dx 6/97 - pump 12/99) from 24.189.234.134
caren, where?

Tue Mar 28 2000 21:59:20 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
good idea.... a geographic roll call. where you all from?

Tue Mar 28 2000 21:59:24 Eastern US
Lisa (LManlyCSH@aol.com (Chapman's mom)) from 152.163.197.46
Birmingham, Alabama

Tue Mar 28 2000 21:59:38 Eastern US
judy (Marc 13 dx'd 8-99) from 208.15.106.70
BEnton, Arkansas

Tue Mar 28 2000 21:59:42 Eastern US
Mary from Ma. (Chris, 10, dx'd @ 4 and pumping since 8, and Angela 11 dx'd @9) from 152.163.213.51
Acushnet, Mass.

Tue Mar 28 2000 21:59:46 Eastern US
Maureen from 24.31.183.150
Columbus Ohio

Tue Mar 28 2000 21:59:51 Eastern US
caren from 12.79.160.64
Long Island near Smithtown.

Tue Mar 28 2000 21:59:56 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
my wife is from mt. brook, lisa

Tue Mar 28 2000 22:00:15 Eastern US
Lisa (LManlyCSH@aol.com (Chapman's mom)) from 152.163.197.46
Cool Tom - My husband is from there!!!

Tue Mar 28 2000 22:00:26 Eastern US
Judith jrenwick@otherside.com (David, 14, diagnosed at age 2 months) from 63.162.254.33
We regularly have chatters from Australia, Wales, Italy, Cyprus, Israel, etc etc etc!!

Tue Mar 28 2000 22:00:35 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
and judy, i am from texarkana originally.

Tue Mar 28 2000 22:00:46 Eastern US
Steve (sjwiner@verio.net) from 24.189.234.134
email me - live in plainview - work in hauppauge

Tue Mar 28 2000 22:00:51 Eastern US
judy (Marc 13 dx'd 8-99) from 208.15.106.70
I am sorry I missed alot of the chat but saw enough that I think it great that someone wants to do a story

Tue Mar 28 2000 22:01:07 Eastern US
Marina (rosaalba@wans.net) from 209.19.220.180
I once spoke with a producer for the Oprah show about suggesting they interview Jeff H. about the "angel" network. They only wanted kids in that segment though. :-( Anyway, thanks for taking an interest. I hope you will do a story on Type I diabetes in the future. Bye.

Tue Mar 28 2000 22:01:32 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
thanks you all very much. good night all.

Tue Mar 28 2000 22:01:43 Eastern US
Brenda H. from 10.0.1.3
Ellen is in Boca Raton; Sonia is in Boulder

Tue Mar 28 2000 22:01:44 Eastern US
judy (Marc 13 dx'd 8-99) from 208.15.106.70
Tom how long did you live in Texarkana

Tue Mar 28 2000 22:02:30 Eastern US
Jeff Hitchcock from 206.112.197.133
I'll keep the room open for a few more minutes, and then post the transcript right away.

Tue Mar 28 2000 22:02:35 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
jeff, you still here?

Tue Mar 28 2000 22:02:37 Eastern US
Sonia (sonia08@ibm.net) from 32.100.144.29
Tom, I am fortunate to be able to be on a Lay Review Committee which reviews grants for a large Foundation. I'll have to let you interview some of my peers abou how I use the internet to help with our research funding decisions; this site and the way it is used should be shared with activists trying. We are able to focus research dollars and eliminate redundancies and find and attract the best researchers because of sites like this. Thanks so much for letting us speak with you tonight. Let's hope your story is the next "Lorenzo's Oil".
Sonia Cooper

Tue Mar 28 2000 22:03:00 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
born there judy. til i was 18, then off to college.

Tue Mar 28 2000 22:03:12 Eastern US
Jeff Hitchcock from 206.112.197.133
Tom, I'm here.

Tue Mar 28 2000 22:04:16 Eastern US
Ellen ((CamelsRFun@aol.com) Zachary 12, dx 2/89, pump 7/95) from 152.163.197.192
I'm from Boca Raton, Florida.
Jeff, as always, thanks for providing a way for us to share and vent.

Tue Mar 28 2000 22:04:24 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
i did not realize that the messages would not all appear. you going to post this whole thing? i would like to copy it and go back and read all the stuff i was too busy to pay attention to.

Tue Mar 28 2000 22:05:01 Eastern US
Jeff Hitchcock from 206.112.197.133
Tom: A complete transcript, from the beginning, will be on the web site 10 minutes after I close the room. Call me if you need to discuss it.

Tue Mar 28 2000 22:05:37 Eastern US
Jeff Hitchcock from 206.112.197.133
I'll be closing this room in two minutes. I suggest we all move to the Parents room to continue.

Tue Mar 28 2000 22:05:42 Eastern US
Ellen ((CamelsRFun@aol.com) Zachary 12, dx 2/89, pump 7/95) from 152.163.197.192
Are there websites that are as comprehensive as CWD out there for families dealing with other illnesses?

Tue Mar 28 2000 22:05:43 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
thanks a lot, jeff. will it be there tomorrow?

Tue Mar 28 2000 22:06:04 Eastern US
Jeff Hitchcock from 206.112.197.133
Yes, there will be a link on the main chat page.

Tue Mar 28 2000 22:06:39 Eastern US
Judith from 63.162.254.33
None, Ellen. This is the best!

Tue Mar 28 2000 22:07:56 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
ellen, i have found at least one good site for every one i could think of... (tho i am not very creative, so may not be very comprehensive)... there are literally dozens of people that work like jeff to organize communities around their interests. but jeffs is terrific. i can testify.

Tue Mar 28 2000 22:08:00 Eastern US
Jeff Hitchcock from 206.112.197.133
Going, going, gone.

Tue Mar 28 2000 22:08:11 Eastern US
tom dawson (tom.dawson@nbc.com) from 152.163.195.176
good night all



                 
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