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Parent Activism from July 5, 2001

Ellen H. Ullman a Parent Activism chat.

Chat Room Administrator Thu Jul 5 2001 20:15:00 Eastern US
The 'Activism' chat room is now open.


Thu Jul 5 2001 20:41:27 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, ) from 152.163.194.177
Welcome everyone to the first CWD Parents Activism Chat for Diabetes Cure . I've often wondered what inspires some to put forth so much effort to advocate and/or raise funds for a cure, while others find the challenge of just raising a child with diabetes to be almost more than they can handle. I believe that we as parents must be the ones to fight for a cure for our children, as our children have enough of a burden to simply follow all of the instructions and do what they need to do to live as well as they can with this disease.

Assembled tonight is a group of parents who advocate for a cure through various channels. This is a discussion about being involved and doing the best each of us can do. This is not a place to discuss which group is better than the other. Together we can all collaborate and do what's best for all of our families. Finding the niche that feels right for you is the first step. I encourage everyone to ask questions.

I'd like everyone to introduce themselves and tell a bit about what keeps them involved, or what it is they are looking for in an organization. Perhaps we can get a message board going of "What our family did this week to advocate for a cure." It can be as simple as writing a letter to a government official or to a newspaper to raising millions of dollars. Each person has something marvelous to contribute.

Thanks for coming :-)

Thu Jul 5 2001 20:57:39 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
Barbara (FL). I have two children with diabetes. Debbie, 33, dx'd 1/71 and Jon, 35, dx'd 5/91. I helped co-found the Diabetes Research Institute Foundation in 1971 after Deb was diagnosed. Thanks Ellen for putting this together tonite.

Thu Jul 5 2001 20:58:48 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Hi Barbara. I think we're a bit early. Hopefully others will arrive soon. How are your children doing?

Thu Jul 5 2001 20:59:11 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
I have one child with diabetes, one without. I am incoming president of the Juvenile Diabetes Research Foundation in Massachusetts. I have found that activism has helped me and my child, and that we parents need to push for the cure. Barbara, I've read about YOU!!

Thu Jul 5 2001 20:59:23 Eastern US
NormaJean (FL) (Samantha, 7, dx'd 12/99, Pumping) from 205.188.199.42
Hi Ellen

Thu Jul 5 2001 21:00:19 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Welcome Norma Jean and Moira.

Thu Jul 5 2001 21:00:28 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
Deb will be finished,FINALLY, with all of her pre-transplant stuff in two weeks (after she finishes some dental work)and then she's ready to make a decision about her options. Jon is okay,although some early retinopathy was just discovered.

Thu Jul 5 2001 21:01:00 Eastern US
Caren (mom to Joshua 15, dx'd 98) from 24.187.41.191
Good evening everyone.

Thu Jul 5 2001 21:01:27 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
Hi Moira and NormaJean. Nice to "meet" both of you. I agree Moira...being involved really helped me cope over the years.

Thu Jul 5 2001 21:02:00 Eastern US
NormaJean (FL) (Samantha, 7, dx'd 12/99, Pumping) from 205.188.199.42
Congratulations Moira. Our area is having it's first meeting since Samantha was dx'd 1-1/2 yrs ago. Parents will meet to discuss school issues and we hope to continue with regular meetings.

Thu Jul 5 2001 21:02:04 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Hi Caren welcome.
Barbara and everyone how did you get started being an activist for cure research? Those of you who aren't involved, please jump in and ask questions and get inspired.

Thu Jul 5 2001 21:02:21 Eastern US
Moira (Lauren, 9, dx @ 6, pumping/ Incoming President, JDRF New England) from 24.48.181.11
I'm often amazed when JDRF thanks me. It's done so much for ME -- I have a huge network of support, friend who understand and care . . .

Thu Jul 5 2001 21:02:29 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
As a parent, I don't care where "the cure" comes from, as long as it comes. Our job is to make sure they keep looking

Thu Jul 5 2001 21:04:05 Eastern US
Moira (Lauren, 9, dx @ 6, pumping/ Incoming President, JDRF New England) from 24.48.181.11
One Year after Lauren's dx, I decided to "Check out" the Walk to Cure. I went with just my two girls and signed up to do giftwrap. haven't looked back. I find it very empowering in a sometimes helpless situation. And I LOVE the JDRF because their goal is simple: A CURE. 85 cents of every $$ raised goes to research. DRI Has a great reputation too

Thu Jul 5 2001 21:04:22 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
When Deb was diagnosed, 30 years ago, there was very little research going on. We were appalled. People thought diabetes was no big deal. Well we told them differently and we were criticized for scaring people. But, people aren't going to support a cause they don't think is serious. I was lucky enough to meet 4 other couples with children with diabetes, and the rest is history.

Thu Jul 5 2001 21:04:34 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
Hi everyone..barbara it's a pleasure to "meet" you..Ellen has spoken so highly of you...

Thu Jul 5 2001 21:04:41 Eastern US
Moira (Lauren, 9, dx @ 6, pumping/ Incoming President, JDRF New England) from 24.48.181.11
I also believe that, as a friend said, the Army, Navy and Marines may "Compete" in some ways, but they all fight the same enemy, Such is the case here, we are all fighting for the cure

Thu Jul 5 2001 21:05:10 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
In 1989 when my son was diagnosed and just out of PICU at Miami Children's Hospital, and we were finally in a regular room, I spoke over the phone with Barbara Diabetes Research Institute. Barbara is my role model - she works tirelessly to support DRI and thanks to Barbara, I am involved with the DRI. I've toured the DRI many times, met the wonderful researchers there and know that the researchers want to collaborate with researchers from all organizations and around the world to see diabetes cured.

I too don't care who finds the cure, lets just cure our children.

Thu Jul 5 2001 21:05:25 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
JDRF and DRI are both in business to put ourselves out of business. We know research is the only way.

Thu Jul 5 2001 21:05:30 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
I'm currently the president of the Phila JDRF, but too began simply by showing up at a WALK 2 wks after Melissa was dx'd almost 9 yrs ago

Thu Jul 5 2001 21:06:11 Eastern US
Melissa (mom of Kristina, 11, dx'd at 6 months, TX delegate of Children's Congress) from 209.48.244.49
Hi!

Thu Jul 5 2001 21:06:26 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
hey Melissa...who's running YOUR chat? LOL

Thu Jul 5 2001 21:06:27 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
I don't look at JDRF as a competitor. They fund many programs (DRI being one of them). We actually do the research. That's the basic difference.

Thu Jul 5 2001 21:06:36 Eastern US
Moira (Lauren, 9, dx @ 6, pumping/ Incoming President, JDRF New England) from 24.48.181.11
Melissa I have my CC guide right here I'm looking up your daughter's pic :-)

Thu Jul 5 2001 21:06:56 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Why is it that diabetes is still seen as just taking a few shots a day and don't eat sugar and you'll be ok?

Thu Jul 5 2001 21:07:22 Eastern US
Melissa (mom of Kristina, 11, dx'd at 6 months, TX delegate of Children's Congress) from 209.48.244.49
LOL Jerry is. I can't get into my site or anywhere on VN again! I've been so frustrated!

Thu Jul 5 2001 21:07:25 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
I think a lot of that has to do with its "invisibility" Ellen

Thu Jul 5 2001 21:07:43 Eastern US
Moira (Lauren, 9, dx @ 6, pumping/ Incoming President, JDRF New England) from 24.48.181.11
Melissa she is adorable!

Thu Jul 5 2001 21:07:46 Eastern US
Melissa (mom of Kristina, 11, dx'd at 6 months, TX delegate of Children's Congress) from 209.48.244.49
Oh cool Moira. Did I meet you there?

Thu Jul 5 2001 21:07:47 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
I'm sure everyone participating in this chat has been reading about the increase in diabetes...and not just Type II. We all need to make sure that these families see the hope that exists.

Thu Jul 5 2001 21:08:44 Eastern US
Moira (Lauren, 9, dx @ 6, pumping/ Incoming President, JDRF New England) from 24.48.181.11
I try to be kind of harsh in convincing people -- I tell them there is NO remission, there is NO getting better, there is NO light at the end of the tunnel YET, but with help there CAN be one. I think people think you can get "regulated" and you're fine.

Thu Jul 5 2001 21:08:51 Eastern US
Melissa (mom of Kristina, 11, dx'd at 6 months, TX delegate of Children's Congress) from 209.48.244.49
The Today Show this morning did a little piece on the increase in Type II diabetes.

Thu Jul 5 2001 21:08:57 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
You're right Ellen. Many people still think diabetes is no big deal. Just take your shots and eat right and you're home free. If they only knew.

Thu Jul 5 2001 21:09:00 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
So part of being an activist is to get the message out that diabetes is a debilitating disease, and not something to scoff at. I wish the word diabetes had the same impact as the words cancer and AIDS. All horrible diseases.

Thu Jul 5 2001 21:09:27 Eastern US
Moira (Lauren, 9, dx @ 6, pumping/ Incoming President, JDRF New England) from 24.48.181.11
Peole always say "Lauren looks GREAT!" and I say, "Well diabetes can only be seen on the inside"

Thu Jul 5 2001 21:09:57 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
Melissa,I missed The Today show, but there were a few articles in the current issue of Diabetes Interview that also had some alarming statistics about Type I

Thu Jul 5 2001 21:10:05 Eastern US
Moira (Lauren, 9, dx @ 6, pumping/ Incoming President, JDRF New England) from 24.48.181.11
I wish Type 2 had a different name all together. And now this incidences of type 2 in kids are making it look like all kids with D could have avoided it, Bothers me

Thu Jul 5 2001 21:10:22 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
and I also think people don't want to have to think about "unpleasantness"...head in the sand syndrome...when I was dx'd with breast cancer, one of my older daughter's classmates' mother actually said months later" oh I heard about your situation but I didn't want to bother you..but you're fine now - right?"....I think that's also how they think about Melissa, until our annual letter arives in August!!!

Thu Jul 5 2001 21:10:34 Eastern US
sharon (2 kids with D) from 165.247.49.27
hi :-)
did my last post get lost in cyber-space?

Thu Jul 5 2001 21:11:07 Eastern US
Melissa (mom of Kristina, 11, dx'd at 6 months, TX delegate of Children's Congress) from 209.48.244.49
Thanks Moira! You can see more current pictures though at http://diabetes.health-support.com/ChildrensCongress/

Although I can't get to my site, apparently everyone else in the world can! LOL So save that and have a look when you get a chance!

Thu Jul 5 2001 21:11:21 Eastern US
dee (Jesse 5 dxd 9-99) from 209.166.65.155
I too attend the walk in Seattle. The first time, I was new to diabetes and it felt wonderful to see all the people "at work" on this. Kudos to all of you for your tireless effort.

Thu Jul 5 2001 21:11:23 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
One of the things I've found the most difficult to balance is speaking in front of a group that might have newly diagnosed and those who have had diabetes for some time. Do you talk about complications and scare people (when they've just be traumatized by the diagnosis itself)

Thu Jul 5 2001 21:11:23 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
I think type 2 is also a terribly destructive disease..

Thu Jul 5 2001 21:11:48 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
I repeatedly told anyone who'd listen that at least my situation was FINITE (G-d willing) whereas Melissa's goes on ad nauseum...but they just looked at me blankly...Cancer unerved them..diabetes just made them think "poor kid - can't eat candy"..DUH

Thu Jul 5 2001 21:12:19 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Melissa, can you tell us what you did recently in Texas to get legislation to raise research dollars for curing diabetes?

Thu Jul 5 2001 21:12:26 Eastern US
Moira (Lauren, 9, dx @ 6, pumping/ Incoming President, JDRF New England) from 24.48.181.11
I was state walk chair this past year and made a speech to about 6,000 people. Days later Lauren said, "Mom, you know the best part of the walk? When you told EVERYONE 'I'm finding a cure for my daughter! We CAN do it!'" She really felt that I was doing it for her

Thu Jul 5 2001 21:12:29 Eastern US
sharon (2 kids with D) from 165.247.49.27
lets see if this works.
hello everyone

Thu Jul 5 2001 21:12:43 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
hi Sharon...we read you "loud & claer"

Thu Jul 5 2001 21:12:59 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
Absolutely Ellen, TYpe II has the same devastating complications.

Thu Jul 5 2001 21:13:04 Eastern US
Moira (Lauren, 9, dx @ 6, pumping/ Incoming President, JDRF New England) from 24.48.181.11
One of our biggest supporters has a child who is a cancer survivor. She often says she would not trade places. I DO want a cure for cancer too, don't get me wrong

Thu Jul 5 2001 21:13:31 Eastern US
Melissa (mom of Kristina, 11, dx'd at 6 months, TX delegate of Children's Congress) from 209.48.244.49
When we visited with our congressman last week with the Children's Congress, Kristina told him all about her diabetes, showed him her pump, put it in his hands while it did a self test and he was alittle afraid of the thing. I think it made quite an impact to see this little girl living with this pump 24/7. I then jumped in and told him that this is the BEST available tool for controling diabetes right now. I watch her like a hawk, getting up 1 or 2 times EVERY night and STILL she had a seizure just a month ago... her first one after 10 1/2 years of diabetes. The best treatment ISN'T good enough!!!! I think he got the message!!

Thu Jul 5 2001 21:13:31 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
Hi Sharon. How old are your kids

Thu Jul 5 2001 21:13:33 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Barbara, I appreciate your sensitivity. I also think that I was sheltered in the beginning and never thought that anything bad would happen to Zachary as long as I took care of him. Then one day I read Showdown with Diabetes and it pulled my head rapidly out of the sand.

Thu Jul 5 2001 21:13:59 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
that IS a problem Barbara...double-edged sword....if they don't grasp the seriousness of it then it's hard to get them passionate about wanting to see it cured

Thu Jul 5 2001 21:14:21 Eastern US
Moira (Lauren, 9, dx @ 6, pumping/ Incoming President, JDRF New England) from 24.48.181.11
I firmly believe no one should become highly active in fighting for a cure until one year after dx. The first year is too hard . . . need to focus on self and family first IMHO

Thu Jul 5 2001 21:14:55 Eastern US
dee (Jesse 5 dxd 9-99) from 209.166.65.155
I think with diabetes, our kids look fine, that contributes to the whats the big deal line of thinking. If they only knew......

Thu Jul 5 2001 21:15:03 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
Melissa...sounds like you and Kristina did your state proud!!

Thu Jul 5 2001 21:15:38 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
Moira, one of the tough things we all have to deal with is the perception of competition between diseases. We want them all cured. I guess it's all about resources. The thing is, diabetes probably affects the largest number of people and still doesn't get its fair share of allocations

Thu Jul 5 2001 21:16:42 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
one of the things we've found effective in Phila is being an available resource ASAP after a dx...then later when the family is ready to do more than simply BREATHE, they'll contact us, thanking us for having been there at a time when they couldn't absorb it all...

Thu Jul 5 2001 21:17:02 Eastern US
Moira (Lauren, 9, dx @ 6, pumping/ Incoming President, JDRF New England) from 24.48.181.11
Same at our chapter Renee

Thu Jul 5 2001 21:17:29 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
When I talk to or meet a newly diagnosed family, and tell them that I have two children, their first question always is "how are they". Well, my daughter, unfortunately, has lots of complications. And my instinct is NOT to tell them that (the newly diagnosed families)

Thu Jul 5 2001 21:17:55 Eastern US
Melissa (mom of Kristina, 11, dx'd at 6 months, TX delegate of Children's Congress) from 209.48.244.49
Well, Ellen, I didn't really do much. I wrote to the state congressman from our district and our senator and told them about our lives with diabetes and how it's effected the whole family. Then when they told me the bill would be on the senate floor, I arranged to take the kids to Austin to participate in the meeting. We didn't say anything but signed a card saying we were there but wouldn't testify. We put a FACE on diabetes in support of the bill. AFterwards, we met with our congressman and senator and Kristina told them about her life with diabetes and how we really needed a cure! I thought it was great preparation for Washington DC!

Thu Jul 5 2001 21:18:05 Eastern US
dee (Jesse 5 dxd 9-99) from 209.166.65.155
Probably good instincts Barbara....

Thu Jul 5 2001 21:18:17 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Barbara, Lauren was dx four years ago and hearing that from you jars me NOW -- imagine what it's like at beginning . . . . too shocking

Thu Jul 5 2001 21:18:17 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
I also think that as with any horrible disease, when people begin to get complications, they stop being out and about and visible and then it's even more hidden. How much should we put our children in the press and media and the limelight to bring a face to diabetes? Does it take its toll on our children?

Thu Jul 5 2001 21:18:35 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
Renee, we do the same down here in Miami. We're here for them, to whatever degree they chose. Just knowing someone else really knows what it's like, helps immensely.

Thu Jul 5 2001 21:19:23 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
Barbara..one of our most dedicated & passionate JDRF volunteers just lost her 31 yr old daughter to complications..she was the one Mary TYler Moore spoke about in the congressional hearings..the irony is that the mother had been with us at the conference 10 days before where a 32 yr old islet transplant patient spoke joyously about her life being insulin-Independent...the juxtaposition of those 2 young women was numbing..one represented our hope/ the other our deepest fears

Thu Jul 5 2001 21:19:43 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Lauren went through a tough phase recently and I told her to make a list of all the good and the bad of diabetes. On the good, one of the things she has was "Fun to be on TV"

Thu Jul 5 2001 21:20:11 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
Ellen I've often wondered about making our kids "poster kids"....does it take a toll?

Thu Jul 5 2001 21:20:29 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Melissa, that was wonderful advocacy. Kudos to you.

Thu Jul 5 2001 21:20:52 Eastern US
dee (Jesse 5 dxd 9-99) from 209.166.65.155
I live in a very small community and truthfully have issues with making Jess the local poster boy and unfortunately, that would happen here.Maybe im wrong in my thinking, but he isnt old enough to make the decision to be involved. Maybe I should ask him.

Thu Jul 5 2001 21:21:05 Eastern US
Melissa (mom of Kristina, 11, dx'd at 6 months, TX delegate of Children's Congress) from 209.48.244.49
When Kristina was first diagnosed, I remember being very surprised when I met other kids with diabetes. They were so.... "normal"!! That gave me ALOT of hope!

Thu Jul 5 2001 21:21:18 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
Moira, that's really interesting. My daughter Debbie has often thought about the good/bad things, and she says that the people she's met over the years has really been not only good, but GREAT.

Thu Jul 5 2001 21:21:27 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
What keeps some people fighting while others drop out and give up fighting for a cure?

Thu Jul 5 2001 21:21:55 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Well, Lauren has over 130 people from our town go into Boston to walk for her each year, so it does have its benefits. BUT, Lauren is a VERY outgoing child. We called her the "talkshow host" way before she was dx

Thu Jul 5 2001 21:22:32 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Do people drop out from the diabetes fight? I don't know that I ever will until it is done . . . I mean, I'm Laurens mom for life . . .

Thu Jul 5 2001 21:22:35 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
I think Melissa would say the same thing...because of my advocacy, we've met wonderful people ( like Ellen) who my whole family is honored to know

Thu Jul 5 2001 21:23:18 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
Way back, it seems like a hundred years ago, when Deb was 4,she did a commercial with Gary Kleiman, who spoke about losing his sight from diabetes. She was sitting in the background on a stool while he spoke. After the shoot, going home in the car, she asked (at age 4) will I go blind like Gary? I was devastated. I said, "I don't know, but it's our job to do everything we can to prevent it from happening." I'll never forget that day.

Thu Jul 5 2001 21:23:19 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
I would say the same thing personally. The friends I have humble me -- they are all so smart and worthy and kind

Thu Jul 5 2001 21:23:41 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
but I also had a former chapter president (himself dx'd at age 12 & now 50 yrs old)tell me that it was his belief that those we see actively involved are only abotu 10% of those affected by diabetes....

Thu Jul 5 2001 21:24:06 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
Ellen is the BEST (an unpaid commercial!!)

Thu Jul 5 2001 21:24:23 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
But I never feel I've done enough. In fact the movie Lorenzo's oil makes me feel guilty that I'm not doing something around the clock like that kids parents did.

Barbara, that gave me chills. I read Gary's book - No Time To Lose.

Thu Jul 5 2001 21:24:39 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Renee that has got to be true BUT I have the oportunityh -- lucky to have a comfortable life, kids at right age, time to give, etc etc. years ago I might not have been able to do what I do

Thu Jul 5 2001 21:24:42 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
Moira, yes, over the years I've noticed people definitely do drop out. I, personally, could not understand it. I'm in it to the end (which I hope is sooner rather than later)

Thu Jul 5 2001 21:25:43 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Hello.....

Thu Jul 5 2001 21:25:59 Eastern US
Melissa (mom of Kristina, 11, dx'd at 6 months, TX delegate of Children's Congress) from 209.48.244.49
Dee, I live in a small town too and my ideas for stories about diabetes in our newspaper were rejected immediately. The editor was interested in the Children's Congress and SAID he'd do a follow up afterwards but it was a pretty small follow up he did... although he did put in a picture. But I had someone in the office there standing up for me too, insisting he be sure to put even just that in the paper! So you might be surprised in your town!

Thu Jul 5 2001 21:26:09 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Speaking of hardworking and worthy people, Hi Judith!

Thu Jul 5 2001 21:26:16 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
If someone came to any of you in your organizations and said they have no experience but just want to get started being involved, how would you direct them to find their niche?

Welcome Judith.

Thu Jul 5 2001 21:26:32 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
I know I sound like I'm a hundred years old (well I am practically) but since I've been doing this for a while, I really believe that activism also means balance. You can't devote your whole life to this. You need some down time. Especially if there are other chldren. It affects them, more than we know

Thu Jul 5 2001 21:26:47 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
me too Moira...people say to me "oh I could never do what you do"...and I tell them that I'm fortunate to have the time (imminently an empty nester & no longer teaching) to do this but that doesn't preclude them from doing SOMETHING little

Thu Jul 5 2001 21:26:49 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Oh our local paper NEVER gives us coverage. the big dailies and TV stations always do. Go figure

Thu Jul 5 2001 21:27:18 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Sorry to join late; just back from the boys' soccer practice. Don't know if you've covered this, but I think there is some risk to the kids when parents become "professional diabetes parents". Kids may not want to be poster kids, may rebel at some point in a big way. I've seen it happen......

Thu Jul 5 2001 21:27:35 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
I would talk to the person about what they are interested in learning about; what they like to do; figure it out from there

Thu Jul 5 2001 21:28:05 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
There is a role, small, big, behind scenes, up front, easy, hard, for EVERYONE

Thu Jul 5 2001 21:28:05 Eastern US
Melissa (mom of Kristina, 11, dx'd at 6 months, TX delegate of Children's Congress) from 209.48.244.49
Kristina was pretty surprised the first time she heard me tell someone that she could be blind by the time she was in college. I think after the first scare though, it made her want to talk about it even more!!

Thu Jul 5 2001 21:28:28 Eastern US
dee (Jesse 5 dxd 9-99) from 209.166.65.155
Melissa, we have the CWD bear coming to visit this fall, Jess will be starting Kindergarten and am thinking about doing something with that to get the ball rolling.

Thu Jul 5 2001 21:28:41 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
we succeeded in getting a 7 part series on life with diabetes from the emotional, physical, social,medical, etc aspects in a local weekly paper simply because one of the reporters is herself the mother of a young son with diabetes...she'd been reluctant to "go public" with it, but after attending a few JDRF events, that changed her mind...

Thu Jul 5 2001 21:28:48 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
Since the DRI doesn't have chapters, being involved in our special events requires them to live in South Florida or New York. However, everyone can help support an organization or cause by doing things wherever they live by doing their own events, soliciting friends, business aquaintenances, relatives, being advocates, etc

Thu Jul 5 2001 21:29:07 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
After all, I think our goals are to make life as normal as possible for our kids. Being a celebrity for having a disease runs counter to that. It's a fine line......

Thu Jul 5 2001 21:29:08 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Our local papers will give coverage - you just have to get to the right person - often a health reporter...or the editor. I have tried to get them to feature Z in a story, and once I get them into my living room I stress over and over that this disease needs to be cured, and it's not just about the one kid in the article who lives a seemingly ok life. I really want the coverage about the details about life with diabetes and it's complications etc..

Thu Jul 5 2001 21:29:54 Eastern US
Sue (mom to andrea dx 4/01) from 209.158.92.223
hi, I'm new at this, but I want to anything that I can to help my daughter

Thu Jul 5 2001 21:30:04 Eastern US
Lisa (La) (Taylor 14, dx'd 3/93, pumping) from 208.143.114.59
Hi Everyone!
How do you contribute when the "local" chapters are 250 miles away? What can I do long distance?

Thu Jul 5 2001 21:30:04 Eastern US
dee (Jesse 5 dxd 9-99) from 209.166.65.155
I agree Moira, there are anonymous and open ways to get involved.

Thu Jul 5 2001 21:30:11 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
But life isn't normal with diabetes.

Thu Jul 5 2001 21:30:17 Eastern US
Linda/UT from 208.186.108.4
HI

Thu Jul 5 2001 21:30:40 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Welcome one and all.

Thu Jul 5 2001 21:30:44 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
I have made numerous phone calls to reporters with the Louisville Courier-Journal about the Russia programs. Have not been able to get any response, even though I worked closely with one of the reporters when I was a CASA (Court Appointed Special Advocate)

Thu Jul 5 2001 21:30:49 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Lisa JDRF is looking into "walk in a box" for far off smaller walks; also you can have a fundraising party or dinner for any D organization

Thu Jul 5 2001 21:31:46 Eastern US
Melissa (mom of Kristina, 11, dx'd at 6 months, TX delegate of Children's Congress) from 209.48.244.49
That sounds great Dee! That will be really exciting. And he would probably love the attention! Kristina started in Kindergarten to talk about her diabetes in front of groups. She started with her kindergarten class! She's since spoken to every class she's been in, plus 2 Lions Club groups and to every politician we've met! She's coming along and I've only seen good come from it for her!

Thu Jul 5 2001 21:31:51 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
I also want to point out here that many D camps need fundraising too and they are VERY important in my opinion

Thu Jul 5 2001 21:31:55 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
As I say, it's a balancing act. Dave has at times been unhappy with my involvement. However, I remind him that it's something I'm doing professionally.....

Thu Jul 5 2001 21:32:06 Eastern US
dee (Jesse 5 dxd 9-99) from 209.166.65.155
Isnt it amazing how people listen up when its a celebrity talking?

Thu Jul 5 2001 21:32:31 Eastern US
Linda/UT (Kim 13, Alla 12) from 208.186.108.4
The reason that Cancer, AIDS, Heart disease have gotten so much press is because of activism

Thu Jul 5 2001 21:32:33 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
Lisa...depending on Taylor's willingness to speak about diabetes, even doing a small science or health class presentation can do wonders for "sensitizing" others to better understand diabetes...a sibling is yet another route..Deena did a health class presentation & afterwards kids came up to Melissa & said "wow I had no idea of all you have to do"

Thu Jul 5 2001 21:32:33 Eastern US
Lisa (La) (Taylor 14, dx'd 3/93, pumping) from 208.143.114.59
It would likely be a really small walk here Moira..only about 5 kids locally with D but an interesting concept

Thu Jul 5 2001 21:32:48 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
Whoops, I think there's a computer glitch. I've stopped getting messages. Anyone else having problems.

Thu Jul 5 2001 21:32:54 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
I'll second Moira's point about d camps and local organizations. They may not be cure-oriented, but service and education are of utmost importance UNTIL the cure.

Thu Jul 5 2001 21:33:13 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Lisa if you only had ONE kid you could do a walk. Or a day in the park party . . .. . . or a waterski-athon!

Thu Jul 5 2001 21:33:31 Eastern US
Melissa (mom of Kristina, 11, dx'd at 6 months, TX delegate of Children's Congress) from 209.48.244.49
Current plans are for her to speak in front of the school board about the Children's Congress and the fort worth JDRF chapter has asked her to speak at their kickoff luncheon! She's already writing her speaches! LOL It's good experience for her. Imagine what a great speaker she'll be when she's in high school or college!

Thu Jul 5 2001 21:33:43 Eastern US
Alan (father of 2 type 1's) from 64.0.99.137
Barbara Singer,

Hope you are well. As you know, I've supported DRI from Nashville. When you put my name in an even book, I want our location published too so that people will realize that DRI gets support from all over the country.

Thu Jul 5 2001 21:33:45 Eastern US
gary (...(visit the 'Diabetes Poetry Room' at) geocities.com/gmhco) from 63.17.219.47
hello everyone, I'm just watching and learning...:-)

Thu Jul 5 2001 21:34:00 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
it's just not "glamorous" to most people.....and just as with mental illnesses, people mistakenly think it's one's own "fault" for not getting better....sad...both views stem from ignorance

Thu Jul 5 2001 21:34:49 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
I've noticed that kids go thru stages about wanting to be in the limelight and talking about diabetes. You have to sort of feel them out, gently.

Thu Jul 5 2001 21:34:54 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Good point Renee and that is how we ALL can help no matter where we are. We need to EDUCATE the world about this. Even if it is one person at a time

Thu Jul 5 2001 21:35:25 Eastern US
dee (Jesse 5 dxd 9-99) from 209.166.65.155
The press isnt always doing us favors with the miracle cures, inhalers ect they are touting. So often I hear, "they just about have a handle on that diabetes now dont they". Anything for a story.

Thu Jul 5 2001 21:35:38 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 64.12.103.154
Renee, you're right on! I can't tell you how many people think if you can't "control" diabetes it's your own fault. Let them try.

Thu Jul 5 2001 21:35:53 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Hi Alan, how are your children doing? Yes you are supportive of many organizations.

Thu Jul 5 2001 21:36:11 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
I agree Dee. If I read one more time that diabetes is cured in mice I will SCREAM

Thu Jul 5 2001 21:36:16 Eastern US
Sue (mom to andrea dx 4/01) from 209.158.92.223
does anyone know of anything happening in Southern N.J.

Thu Jul 5 2001 21:36:32 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
Melissa has NO problems talking about diabetes with adults..but she has always had a diifcult time being open about it with her peers, even though they were very understanding & accomodating...it's just HARD to feel "different" with your friends...

Thu Jul 5 2001 21:36:57 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Sue you have an active jdrf chapter there. Go to www.jdrf.org and click on search for chapter, it will guide you to info

Thu Jul 5 2001 21:37:18 Eastern US
Linda/UT (Kim 13, Alla 12) from 208.186.108.4
Oh come on we all know the kids will just out grow D! And, that D is caused by over eating and no exercise!!! *sigh* I spend a lot of time educating people and nicely as I can

Thu Jul 5 2001 21:37:25 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
Hi Sue....how close are you to Cherry Hill...their WALK is 2 wks after the Phila walks...has anyone from that chapter contacted you?

Thu Jul 5 2001 21:37:50 Eastern US
dee (Jesse 5 dxd 9-99) from 209.166.65.155
Moira, maybe that would be a good place to get started with an editorial on that one. Our childre are not baboons or mice.

Thu Jul 5 2001 21:38:02 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
LOL Linda, and then you took in the nice Russian girl and made her catch it too!

Thu Jul 5 2001 21:38:09 Eastern US
Alan (father of 2 type 1's) from 64.0.99.137
Hey Ellen,

I try. Mostly I talk to other people about life with IDDM on a daily basis. That's the most important thing. Consciousness raising, as we called it in the sixties!

The kids are OK. I chase more sugar now than I did when I was in high school and college combined! Know what I mean!

Thu Jul 5 2001 21:38:29 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Moira, be prepared to read lots more about diabetes being cured in rodents. It's the first step in most research protocols...but hopefully the dollars will go to research that moves quickly to other models and sooner to humans when safe.

Thu Jul 5 2001 21:38:40 Eastern US
Linda/UT (Kim 13, Alla 12) from 208.186.108.4
My dil called the other day to say she had seen a TV report on the insulin pump, it had said that Pumps were the "new" way to treat D. (Kim's had hers for 3 years)

Thu Jul 5 2001 21:38:57 Eastern US
Melissa (mom of Kristina, 11, dx'd at 6 months, TX delegate of Children's Congress) from 209.48.244.49
Linda, that's EXACTLY what the Today Show seemed to be trying to tell us about Diabetes this morning! They were talking about type II but no one notices the difference between the 2 much. They just hear that it's an overeating problem, that you can avoid it if you just live a better lifestyle etc., etc!

Thu Jul 5 2001 21:39:04 Eastern US
Sue (mom to andrea dx 4/01) from 209.158.92.223
abouth an hour or so. I havn't been in touch with the chapter

Thu Jul 5 2001 21:39:29 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
I for one am thrilled about the baboon with the porcine islets. The immune system is very complex and brilliant researchers are trying to figure it out.

Thu Jul 5 2001 21:39:35 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 152.163.207.199
Is anyone else having occasional computer problems?

Thu Jul 5 2001 21:39:42 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Sue a very small walk team, or just walking as a family is a nice way to check things out. that's how I started

Thu Jul 5 2001 21:39:54 Eastern US
Alan (father of 2 type 1's) from 64.0.99.137
I recently responded to Maggie Gallagher's Op-Ed piece (syndicated) against stem cell research. I posted that response on the TIF board. People from all over the city say it and have given me positive feedback. I'm sure it had an impact.

Thu Jul 5 2001 21:40:05 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
A local mom actually asked my best friend if she was "giving any $$ to Melissa again since after all, she'd already given $5 the year before"...my friend just stared at her...when Melissa overheard, she said "well why shouldn't she STILL give...I STILL have diabetes ...."

Thu Jul 5 2001 21:40:10 Eastern US
Linda/UT (Kim 13, Alla 12) from 208.186.108.4
I think not being able to educate the public to the different types D is the most frustrating thing

Thu Jul 5 2001 21:40:43 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
great job Alan....you even motivated me to post at TIF! LOL

Thu Jul 5 2001 21:40:43 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
I'm thrilled about every advance BUT, and remember I'm in the media here -- the media reports it wrong, makes it sound like we're almost done

Thu Jul 5 2001 21:41:04 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
I don't think the public understands type 2 any more than they understand type 1. They just think they do.

Thu Jul 5 2001 21:41:13 Eastern US
Linda/UT (Kim 13, Alla 12) from 208.186.108.4
And, even then people don't point fingers and say, oops didn't eat right and exercise and had a heart attack! Seems to be much more finger pointing with D

Thu Jul 5 2001 21:41:29 Eastern US
Melissa (mom of Kristina, 11, dx'd at 6 months, TX delegate of Children's Congress) from 209.48.244.49
So... say we have a pet mouse and he developes diabetes. Can we go to the vet and ask him to cure our little pet? LOL

Thu Jul 5 2001 21:41:36 Eastern US
Susie (t-2) from 209.152.220.111
Ann, if you hit "update rooms" you will get "activism".

Thu Jul 5 2001 21:41:37 Eastern US
Linda/UT (Kim 13, Alla 12) from 208.186.108.4
(Am I just paranoid? LOL)

Thu Jul 5 2001 21:42:13 Eastern US
Alan (father of 2 type 1's) from 64.0.99.137
TIF gives me a daily update. I appreciate the fact that so many people stay on top of breaking news. I couldn't possibly get all of this information on a daily basis. Ellen, you have particularly been helpful.

Alan

Thu Jul 5 2001 21:42:19 Eastern US
Susie (t-2) from 209.152.220.111
Sorry, was trying to help someone in parents.

Thu Jul 5 2001 21:42:43 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 152.163.207.199
The most frustrating thing about D is the fact that NO MATTER WHAT YOU DO you can't control it all of the time (how about hardly ever??)

Thu Jul 5 2001 21:43:17 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 152.163.207.199
I agree with ALan, Ellen has been GREAT about keeping me informed!

Thu Jul 5 2001 21:43:56 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
I think it's also important for us to stop & pat ourselves on the back occasionally for all the coverage we HAVE achieved for diabetes of late...it's easy to focus on the frustrations ( the disease itself AND the ignorance)

Thu Jul 5 2001 21:44:17 Eastern US
Melissa (mom of Kristina, 11, dx'd at 6 months, TX delegate of Children's Congress) from 209.48.244.49
LOL Ohhh that's good REnee! Good for her!!

Thu Jul 5 2001 21:44:19 Eastern US
Linda/UT (Kim 13, Alla 12) from 208.186.108.4
Our middle school gave awards to kids who had good grades but had to overcome difficulties. Not one of the 7 kids with D (And I KNOW several of them had great grades) got an award. Guess I have a bunch of educating to do here

Thu Jul 5 2001 21:44:31 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
This is not a kudos to Ellen chat :-)! All of the friends I have made with children with diabetes have inspired me in so many immeasurable ways.

Thu Jul 5 2001 21:44:36 Eastern US
dee (Jesse 5 dxd 9-99) from 209.166.65.155
I have to run all, thanks for the burst of enthusiasm regarding support for our cause.

Thu Jul 5 2001 21:45:00 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 152.163.207.199
You're right Renee! But there's so much frustration.

Thu Jul 5 2001 21:45:42 Eastern US
Linda/UT (Kim 13, Alla 12) from 208.186.108.4
Well I think we have a local politician who won't be bad mouthing people with D for awhile! LOL

Thu Jul 5 2001 21:45:43 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
BTW did you know that the man who got the first artificial heart (big news here, since it was done at Jewish Hospital in Louisville) has d? He's in his 50s, had a life expectancy of less than 30 days....

Thu Jul 5 2001 21:46:20 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
What can we each do next week to raise awareness about the truth about life with diabetes?

Thu Jul 5 2001 21:46:43 Eastern US
Alan (father of 2 type 1's) from 64.0.99.137
Barbara,

I wish DRI would send regular e mail updates about what's going on down there. I realize that it is harmful to release information prematurely, but it does give up hope. Even brief summaries of the various projects that are going on would be helpful. I like to tell others in my community about it.

Tuesday night I had a long talk with the new director of development at the Vanderbilt Diabetes Center. His job (of course) is to raise money. I was telling him about how DRI has inspired me and that I believe it exists for essentially one reason: to cure IDDM.

Thu Jul 5 2001 21:46:44 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
no - hadn't heard that Judith..type I?

Thu Jul 5 2001 21:46:52 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
There was no mention if he was type 1 or type 2.

Thu Jul 5 2001 21:46:53 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 152.163.207.199
I think the most important thing for everyone to remember that even though research moves much more slowly than we all would like, it is moving, thanks to many dedicated researchers and generous supporters. We can't give up. We need to keep talking about diabetes, the seriousness of it and, most importantly, the hope for a cure.

Thu Jul 5 2001 21:47:22 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
and why it MUST BE CURED?
I know that ultimately everything comes down to dollars and cents. But for the life of me I don't understand why the government doesn't see how much diabetes costs this country when a cure would be so much cheaper in the long run!

Thu Jul 5 2001 21:47:24 Eastern US
Ann (Philip,12, dx'd 8/90) from 4.54.143.75
Hello to all! I am going to scroll down for a minute.

Thu Jul 5 2001 21:47:52 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
Alan..I have that absolutely gorgeous little girl with the 2 ponytails and the "Just Cure it" sign under her face from a DRI flyer hanging up on my bulletin board over my computer!! It inspires me!

Thu Jul 5 2001 21:47:52 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Ellen:
1) Educate someone you know does not really understand type 1

2) sign on for a tiny part in an upcoming fundraiser (or a big part!)

3)Send a thank you note to a friend who is supportive, just for being understanding

Thu Jul 5 2001 21:48:20 Eastern US
Alan (father of 2 type 1's) from 64.0.99.137
give US hope. Not give "up" hope. Sorry!

Thu Jul 5 2001 21:48:31 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 152.163.207.199
I didn't know he had diabetes? Alan, e-mail news is tough,since small steps are just that, and premature publicity is unfair both to the researchers and to the families. It's a tough call.

Thu Jul 5 2001 21:48:38 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
And talk up stem cell EVERYWHERE you go, get the truth out that it is a must and it is good

Thu Jul 5 2001 21:49:11 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Zachary thinks I like diabetes because it gives me an excuse to stay on the internet. *sigh*

Thu Jul 5 2001 21:49:11 Eastern US
Linda/UT (Kim 13, Alla 12) from 208.186.108.4
I think most people don't have any idea how much D is being dx'd daily...

Thu Jul 5 2001 21:49:19 Eastern US
Steve (Allie - 15 - dx 6/97 pump 12/99) from 24.216.218.10
Evening all......just back from picking up Allie at D camp

Thu Jul 5 2001 21:49:31 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
LOL ellen

Thu Jul 5 2001 21:49:39 Eastern US
sue (mom of tina, 14) from 64.12.103.167
where can you find good information to read on the net about this stem cell research so i can educate myself ?? oh and hi everyone

Thu Jul 5 2001 21:49:54 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 152.163.207.199
George W. answered me. Doesn't look good (at least on his part)

Thu Jul 5 2001 21:50:03 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
And d is a growing problem all over the world. I've just had lots of contact with kids from Kazakhstan and Lithuania, as well as "my" Russians....

Thu Jul 5 2001 21:50:08 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Steve is our family teams walk chair this year

Thu Jul 5 2001 21:50:30 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
Ellen..we're contemplating having a Sunday brunch Open House in early August before we send out our letters asking friends to give for the 10th straight year to Melissa's WALK team!! Figured we'd thank them in advance this time!

Thu Jul 5 2001 21:50:54 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 152.163.207.199
I mean as far as government funding stem cell research.

Thu Jul 5 2001 21:51:03 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Sue there are various news searches - you can go to http://www.ft.com, or www.newsindex.com, or www.moreover.com and search under "stem cell" or "diabetes". The New York Times http://www.nytimes.com has had several articles.

Thu Jul 5 2001 21:51:24 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
the current issue of newsweek is pretty good

Thu Jul 5 2001 21:51:29 Eastern US
Alan (father of 2 type 1's) from 64.0.99.137
I remain hopeful that Bush will approve embryonic stem cell work. The polls are heavily in our favor.

It remains a huge embarrasment to me that Al Gore lost Tennessee, thereby losing the presidency.

Thu Jul 5 2001 21:52:05 Eastern US
Linda/UT (Kim 13, Alla 12) from 208.186.108.4
I enjoyed finding out that stem cells are prolific in fat...growing lots of stem cells for my girls!

Thu Jul 5 2001 21:52:13 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 152.163.207.199
You're right about Gore. I wish I could share your hope about Bush.

Thu Jul 5 2001 21:52:29 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
There should be an International Children's Congress where we can bring children from all nations to the forefront of the world showing the faces of diabetes..

Thu Jul 5 2001 21:52:35 Eastern US
sue (mom of tina, 14) from 64.12.103.167
ellen thanks , that should keep me busy for a while lol

Thu Jul 5 2001 21:52:51 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 152.163.207.199
Linda, I was excited about the fat cell thing too. It's a great excuse for eating. We have to do what we have to do.

Thu Jul 5 2001 21:53:01 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
I don't think dubya will ever vote for stem cell research. Even if he wanted to change his mind, he's dug his little hole.

Thu Jul 5 2001 21:53:16 Eastern US
Alan (father of 2 type 1's) from 64.0.99.137
I have to sign off. Goodnight everyone.

Thu Jul 5 2001 21:53:26 Eastern US
Linda/UT (Kim 13, Alla 12) from 208.186.108.4
And, stem cells are in Bone marrow.

Thu Jul 5 2001 21:53:29 Eastern US
sue (mom of tina, 14) from 64.12.103.167
what if we were to donate our own eggs!! could they do the same with those ??

Thu Jul 5 2001 21:53:33 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 152.163.207.199
Ellen is the guru of how to find things on the net.

Thu Jul 5 2001 21:53:40 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
did you know that a mom from Israel went home from a JDRF anual conference a year ago determined to recreate a CC in Israel..and she did!! Outcomes included a govt pledge to fund insulin pumps, to advocate in the schools & to fund an islet cell center in Israel! All that from one empowered, passionate mom!

Thu Jul 5 2001 21:53:49 Eastern US
Steve (Allie - 15 - dx 6/97 pump 12/99) from 24.216.218.10
We have to keep up the pressure on Bush - hopefully he'll listen to strom thurmond, connie mack and the other right to lifers who seem to be coming around

Thu Jul 5 2001 21:53:54 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
stem cells are in a lot of places, but they aren
't all like embryonic stem cells. . .

Thu Jul 5 2001 21:53:57 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Ellen is the undisputed "Queen of URLs"

Thu Jul 5 2001 21:54:09 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 152.163.207.199
I, unfortunately, agree with Ellen.

Thu Jul 5 2001 21:54:32 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
sue the issue is not getting the eggs as much as funding the research

Thu Jul 5 2001 21:54:41 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Think of what one dad has done for d: Jeff Hitchcock started this website as a hobby several years ago.

Thu Jul 5 2001 21:54:59 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 152.163.207.199
I know he's getting pressure from his own party, but he's a wee bit stubborn,and that hole is getting deeper.

Thu Jul 5 2001 21:55:34 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 152.163.207.199
Let's give a big cheer for Jeff Hitchcock. I look forward to Monday morning because of him.

Thu Jul 5 2001 21:55:51 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
cheer cheer Jeff

Thu Jul 5 2001 21:55:51 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
exactly Judith!!...the power of ONE..btw, I finally met Jeff at the ADA convention in Philly last week! He's the BEST!

Thu Jul 5 2001 21:55:57 Eastern US
Melissa (mom of Kristina, 11, dx'd at 6 months, TX delegate of Children's Congress) from 209.48.244.49
Sue, donating your eggs is exactly where everyone seems to be stagnated on the issue of stem cells! But you don't need to! They only need to get them from the invitro centers... and ONLY the ones that are to be thrown out!! So the whole issue of where life begins, donation, abortion, etc is a dead issue cause we're talking about the ones they're going to throw out ANYWAY!! Whether it's a living being yet or not, they're throwing them out! Why not use them for research instead and CURE someone!

Thu Jul 5 2001 21:56:06 Eastern US
Linda/UT (Kim 13, Alla 12) from 208.186.108.4
I think one of the keys (huge keys) is finding out how to keep the autoimmune system in check

Thu Jul 5 2001 21:56:37 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Oh do you get What's New on Monday Morning Barbara? Some of us more addicted to this website, can't go to sleep Sunday night without reading it LOL.

Thu Jul 5 2001 21:57:06 Eastern US
sue (mom of tina, 14) from 64.12.103.167
hey gary hall the swimmer has just won 125, 000 on who wants to be a millionare, and it is going to diabetes athelets

Thu Jul 5 2001 21:57:12 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Yes, he's the best. I've met him several times over the years.

Thu Jul 5 2001 21:57:16 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Four things need to happen for cure:
1) source of islet cells
2)reverse autoimmunity
3)replace islet cells
4) what is four? Oh, figure out trigger for start

Thu Jul 5 2001 21:57:27 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 152.163.207.199
I think some of the current research is scaring people...they think that taking the first step with stem cells will lead to creating a super race or something. BTW, there's an interesting article in this week's New York Times magazine about two famiies who became pregnant to be able to transplant their seriously ill children.I would do it in a minute (and I'm OLD)

Thu Jul 5 2001 21:57:42 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
that's me Ellen...a Sunday Night What's New nut!!

Thu Jul 5 2001 21:57:45 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
I love what's new

Thu Jul 5 2001 21:57:59 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 152.163.207.199
No I wait until Monday morning! Balance Ellen, Balance.

Thu Jul 5 2001 21:58:52 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 152.163.207.199
Moira, a non-toxic immunosuppressant therapy is also key.

Thu Jul 5 2001 21:59:21 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Barbara I thought we were hoping for islet replacement without immmunosup.

Thu Jul 5 2001 21:59:21 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
There are lots of sides to all those issues. I know a family who conceived a child hoping to get a tissue match for a sibling with Fanconi's anemia. The baby was not a suitable match. So they tried again. What is the role of that child who "didn't work out"????

Thu Jul 5 2001 21:59:21 Eastern US
Sharon (mom to Steve, 15, dx'd 7/91) from 64.252.202.75
I wrote a letter to the editor tonight about stem cell research. That's my contribution for the week. Thank you to Ellen for editing it for me!

Thu Jul 5 2001 21:59:39 Eastern US
Barbara Singer (Mom, 2 children with diabetes, Administrative Director of DRI Foundation) from 152.163.207.199
Hey everyone, I've got to go. I enjoyed "meeting" everyone and hope to see you in person later this month. Good night

Thu Jul 5 2001 21:59:41 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Thank you Sharon for writing it!

Thu Jul 5 2001 22:00:11 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Thank you Barbara, my brightest light , for all you do!

Thu Jul 5 2001 22:00:14 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
the 32 yr old islet transplant patient who spoke at the JDRF conference had her transplant at Univ of Minesota & did NOT receive the same "protocol" as those in Edmonton...she also had islets from only ONE pancreas & is now 10 months out from her procedure & doing great..she was AMAZINg..has us all in tears

Thu Jul 5 2001 22:00:15 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
I think "non-toxic immunosuppressant" is an oxymoron.

Thu Jul 5 2001 22:00:17 Eastern US
sue (mom of tina, 14) from 64.12.103.167
later in person where??

Thu Jul 5 2001 22:01:27 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
AT the Children With Diabetes conference in Disney July 18-22, 2001.

Thu Jul 5 2001 22:01:34 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
at your house Sue. No one told you?

Thu Jul 5 2001 22:01:41 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
I'd like to see encapsulation prove successful.

Thu Jul 5 2001 22:01:59 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
ditto Ellen

Thu Jul 5 2001 22:02:01 Eastern US
Ann (Philip,12, dx'd 8/90) from 4.54.143.75
Many of us moms from Children's Congress wrote to Today@NBC.com to ask them to continue bringing awareness about stem cell research to the American public and educating those who do not know what hope it brings. They had a segment this morning.

Thu Jul 5 2001 22:02:15 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
bye barbara..thank you for STILL being as devoted to our mutual cause & hope!

Thu Jul 5 2001 22:02:43 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
honor to meet you barbara. ellen has promised me a tour

Thu Jul 5 2001 22:02:49 Eastern US
Sharon (mom to Steve, 15, dx'd 7/91) from 64.252.202.75
My latest thing is writing emails and letters and sending faxes to Congress members reminding them that I support stem cell research. Our entire delegation from CT (supposedly) supports it.

Thu Jul 5 2001 22:03:02 Eastern US
sue (mom of tina, 14) from 64.12.103.167
would love you all to come here lol , tina only been d for one year you could all educate me, our endo sure does not , this computor is my educator

Thu Jul 5 2001 22:03:16 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Encapsulation has been tried before, about 20 yrs ago. The body encapsulated the capsules! Stem cell work is about the only new thing that is being tried.

Thu Jul 5 2001 22:03:47 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Excellent Sharon. I'll write some tomorrow.

Thu Jul 5 2001 22:04:19 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
I hate to be such a pessimist, but I've been caring for kids with d on and off for 40 yrs. Home bg monitoring, A1cs, new insulins are all improvements.....but not much else is new.

Thu Jul 5 2001 22:04:21 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
The encapsulation polymers are getting better than those of 20 years ago

Thu Jul 5 2001 22:04:26 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
good job Sharon....I need to do faxes tomorrow

Thu Jul 5 2001 22:05:19 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Judith 20 years ago there weren't patients off insulin for 1 or more years from islet transplantation. Granted those who currently are in the protocol were gravely ill or had serious complications already, but it is a quantum leap in the research.

Thu Jul 5 2001 22:06:22 Eastern US
Ann (Philip,12, dx'd 8/90) from 4.54.143.75
All the work JDRF and families do to get dollars for research will eventually bring us a cure. Be hopeful, and stay educated and educate others!

Thu Jul 5 2001 22:07:24 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
absolutely Ellen...ask any researcher what's different & they'll all say.."it's not longer a matter of IF, but when..."..they now have "proof of principle" which was not the case prior to Edmonton...the tiny # of pts. who had the procedure is less significant than the fact that they COULD do it at all

Thu Jul 5 2001 22:07:40 Eastern US
Sharon (mom to Steve, 15, dx'd 7/91) from 64.252.202.75
I have a JDRF Washington Report that I can fwd to anyone who wants it..email me at thomas.tarca@snet.net

Thu Jul 5 2001 22:08:38 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Does anyone think we should do this type of chat monthly?

Thu Jul 5 2001 22:09:03 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Edmonton patients are nearly all back on insulin and/or have had refills of islets.

Thu Jul 5 2001 22:09:16 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
count me in Ellen!!.....

Thu Jul 5 2001 22:09:26 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
me too

Thu Jul 5 2001 22:09:48 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
not so Judith...5 of 15 have had SOME insulin needs..and they're scheduled for a 3rd infusion of islets....

Thu Jul 5 2001 22:10:18 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Not nearly all Judith.

Thu Jul 5 2001 22:11:00 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
I need others to keep me inspired to do more.

Thu Jul 5 2001 22:11:04 Eastern US
Ann (Philip,12, dx'd 8/90) from 4.54.143.75
Ellen - this was great! Need to motivate those in parents more, weekly would be good!

Thu Jul 5 2001 22:11:06 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
and even if they needed more insulin (less than 10 units per day) their ability to have glycemic control is VASTLY improved over pre-transplant conditions

Thu Jul 5 2001 22:12:16 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
I liken Edmonton to the glucowatch...it's nowhere near "ready for prime time" but it's one helluva "prototype" for something that wasn't even an option before

Thu Jul 5 2001 22:12:32 Eastern US
Sharon (mom to Steve, 15, dx'd 7/91) from 64.252.202.75
I don't understand parents of kids with D who never get involved. I have to feel as if somehow I'm making a small difference.

Thu Jul 5 2001 22:12:37 Eastern US
Richard (Type One (35 years)) from 64.12.103.184
How do you all feel about the transplanted pig islets Think there is hope in that direction?

Thu Jul 5 2001 22:13:04 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
I guess my problem is that I'm from Missouri - have to "show me". I think there's still a long way to go....

Thu Jul 5 2001 22:13:46 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
But Judith, as long as we are stepping even a tiny bit forward, it's good. sure I want it faster, but we're trying

Thu Jul 5 2001 22:13:47 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Richard, I feel if they can tranplant encapsulated porcine islets and restore normal glycemia, I'm all for it.

Thu Jul 5 2001 22:15:16 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
we joke that we cannot call Lauren's room a "pigstye" anymore

Thu Jul 5 2001 22:15:19 Eastern US
Richard (Type One (35 years)) from 64.12.103.184
As long as it works Ellen At this point and with this many years I'd go for just about anything that sounds feasible

Thu Jul 5 2001 22:15:41 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Just being devil's advocate, but implanting stem cells can also lead to proliferation of islets and uncontrollable hypoglycemia....similar to an insulin-secreting tumor. It's very complicated.

Thu Jul 5 2001 22:16:22 Eastern US
Richard (Type One (35 years)) from 64.12.103.184
It seems like some diseases have more going into them with research atleast more results

Thu Jul 5 2001 22:16:32 Eastern US
Ann (Philip,12, dx'd 8/90) from 4.54.143.75
Judith - I will take on diabetes one more decade, but then Philip will probably leave home, and I would like him to leave home cured/without diabetes.

Thu Jul 5 2001 22:16:43 Eastern US
Richard (Type One (35 years)) from 64.12.103.184
That doesn't sound too good Judith Yuck

Thu Jul 5 2001 22:16:44 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
I sat across from Lee Ducat - the founder of JDF - at the conference & watched tears stream down her face when Nicki (the islet recipient) was speaking...3 yrs earlier when we met Lee, she was so disappointed at how little had changed...now she was actually watching someone who had been CURED

Thu Jul 5 2001 22:16:54 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
They don't intend to implant islets that are uncontrolled in proliferating or insulin production.

Thu Jul 5 2001 22:17:03 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
well the Red Sox just won. see miracles can happen

Thu Jul 5 2001 22:17:41 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
LOL Moira. I'll stop my gloom and doom. I want a cure just as much as the rest of you! I have several hundred kids I want cured sooner rather than later!

Thu Jul 5 2001 22:17:57 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
Did you all come up with a cure yet tonight? I've been working on a fundraiser all day!

Thu Jul 5 2001 22:18:07 Eastern US
Sharon (mom to Steve, 15, dx'd 7/91) from 64.252.202.75
Good night everyone, and keep up the good fight! Become a JDRF advocate - check out www.stemcellfunding.org - just do something!!!

Thu Jul 5 2001 22:18:17 Eastern US
Steve (Allie - 15 - dx 6/97 pump 12/99) from 24.216.218.10
GO SOX!!! Interesting seeing some of the work being done in the labs - my son's working in the Harvard JDRF lab this summer on a mouse project....

Thu Jul 5 2001 22:18:50 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Hi Julie. So wonderful to see you. How's Grant doing? Tell us about your fundraiser.

Thu Jul 5 2001 22:18:52 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
night Sharon...and thanks

Thu Jul 5 2001 22:19:34 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
and my daughter's working in a gene therapy lab doing diabetes research...so is her boyfriend..Melissa asks them if they've cured diabetes yet! LOL

Thu Jul 5 2001 22:19:34 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
We have created an artistic design here that we are gnerating $125 for from each sale! 8 sold in one week. So far, we are giving the proceeds to JDRF

Thu Jul 5 2001 22:19:48 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Don't say mouse Steve, Moira threatened to scream LOL

Thu Jul 5 2001 22:20:05 Eastern US
Steve (Allie - 15 - dx 6/97 pump 12/99) from 24.216.218.10
wouldn't it be great if one of our kids found the cure for all our kids?

Thu Jul 5 2001 22:20:12 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Julie, is it on the web? Can we see it?

Thu Jul 5 2001 22:20:21 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Well, he's in Doug Meltons lab so I can see no wrong!

Thu Jul 5 2001 22:20:31 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
Not yet...very soon!

Thu Jul 5 2001 22:20:37 Eastern US
Ann (Philip,12, dx'd 8/90) from 4.54.143.75
Julie are you Grant's mom from Diabetestown??

Thu Jul 5 2001 22:20:44 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
AMEN Steve.

Thu Jul 5 2001 22:21:07 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Lauren claims she will be the one

Thu Jul 5 2001 22:21:08 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
How old is little Grant now?

Thu Jul 5 2001 22:21:09 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
We are setting up a prototype marketing program this week and then I'll tell you eerything.

Thu Jul 5 2001 22:21:34 Eastern US
Richard (Type One (35 years)) from 64.12.103.184
Catch you all later :-)

Thu Jul 5 2001 22:21:47 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
I spoke with the doctors on the pig islet cell program and they took Grant's name for a list of potential particpants in human trials!

Thu Jul 5 2001 22:21:49 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Hi Julie. Maribeth S, the MM rep, wondered if we'd ever met. Told her we had not.

Thu Jul 5 2001 22:22:06 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
wonderful Julie!!...always looking for new ideas

Thu Jul 5 2001 22:22:07 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Sounds exciting Julie

Thu Jul 5 2001 22:22:24 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
I'm probably way behind on this chat, I'm sorry/

Thu Jul 5 2001 22:22:53 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
Are you in Indiana Judith?

Thu Jul 5 2001 22:23:05 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, Diabetes Research Institute http://www.drinet.org) from 152.163.194.177
Julie, you've brought fresh air into the chat :-)

Thu Jul 5 2001 22:23:44 Eastern US
Steve (Allie - 15 - dx 6/97 pump 12/99) from 24.216.218.10
Julie - give us some quick details on what you are doing?

Thu Jul 5 2001 22:23:45 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
Who is pumping in your family Judith?

Thu Jul 5 2001 22:24:06 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Yes, near Louisville. Just back from 2 weeks as pump coordinator at DYF of Indiana's camp at Happy Hollow

Thu Jul 5 2001 22:24:42 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Dave and Vanya are pumping, though today Dave asked me to talk to his endo about coming off the pump for a while.

Thu Jul 5 2001 22:24:56 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
are you implying we old-timers are STALE, Ellen?

Thu Jul 5 2001 22:25:11 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Vanya will be coming off involuntarily if/when he goes back to Russia in a month or two

Thu Jul 5 2001 22:25:20 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
I have a friend who is an artisit, and a designer. her work is beautiful, so I asked her to design a piece to raise funds to cure diabets. Her father died from diabetes, and her mom has Type 2. She designed an incredible peice, and sales are taking off before we are ready. If JDRF doesn't embrace it more strongly, I'm looking for another recipient!

Thu Jul 5 2001 22:25:44 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, ) from 152.163.194.177
No Renee, I was about to head off to sleep, and suddenly woke up :-)!!!

Thu Jul 5 2001 22:25:47 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Julie is it a pin?

Thu Jul 5 2001 22:26:00 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
See how tired I am with the poor spelling. Youi'd never know I am a copy writer having written for 14 hours straight!

Thu Jul 5 2001 22:26:53 Eastern US
Renee (Melissa, 18, dx'd at 9, pump 5 yrs ) from 205.188.198.167
ok..time for me to go....we've overstayed our invitation! Thanks for a great session Ellen...

Thu Jul 5 2001 22:26:53 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
No, not a pin. Top secret :-) until she reveals it next month in a magazine article.

Thu Jul 5 2001 22:27:10 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
what magazine?

Thu Jul 5 2001 22:27:20 Eastern US
Steve (Allie - 15 - dx 6/97 pump 12/99) from 24.216.218.10
Julie - I am on the national JDRF web fundraising committee - we are meeting next week. Please send me details via email (sjwin@li.net) - and I will make sure it gets proper review.....

Thu Jul 5 2001 22:27:51 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
Judith, did I meet you in Von Maur? I met a woman whose son was going to Russia who has Type1.

Thu Jul 5 2001 22:28:15 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
WOW Steve! This was meant to be. I will forward you all the details.

Thu Jul 5 2001 22:28:47 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
That was probably Becky B, from Elkhart. Her son Spencer went to winter camp in Russia. He and my boys are good friends.

Thu Jul 5 2001 22:29:35 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
Judith I am going to the Ukraine in September on a mission trip. Closest I've been to Russia. Asky Becky if she bought a necklae at Von Maur from a woman whose son has Type 1 diabetes (hint, hint).

Thu Jul 5 2001 22:29:52 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Julie, if JDRF doesn't want it, PLEASE think of D Youth Foundation of Indiana, esp our Russia program, which is no longer getting funding from Lilly.

Thu Jul 5 2001 22:30:51 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
You and Grant could benefit from our family camp programs, and summer camps. Next family camp is Sept 8-9. Guess I'll miss it, as my youngest daughter is getting married that day.

Thu Jul 5 2001 22:31:07 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
Actaully, I think this woman was from south of Greenwood, Indiana. So many families with children who have diabetes......everywhere I go, everywhere I turn. I would be happy to learn more about the D Youth Foundation, Judith.

Thu Jul 5 2001 22:31:31 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
I think a family camp is for us, with Grant being only 4.

Thu Jul 5 2001 22:31:32 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Some of our exchange campers are from Ukraine.

Thu Jul 5 2001 22:31:54 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
Ellen, what's the BEST way to be active these days? Where do we put our time and efforts?

Thu Jul 5 2001 22:32:14 Eastern US
Steve (Allie - 15 - dx 6/97 pump 12/99) from 24.216.218.10
Judith - I met Shelley Yeager tonight - impressive woman

Thu Jul 5 2001 22:32:42 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
The website of the organization is not very professionally done, I'm afraid. There are numerous spelling and grammatical errors, which drive me crazy. The man who set it up has good intentions..... Read about it at www.dyfofindiana.org

Thu Jul 5 2001 22:32:54 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Shelley's a go-getter

Thu Jul 5 2001 22:33:09 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, ) from 152.163.194.177
Julie, I think everyone has their niche to find. For me it's raising awareness because I never felt good at raising lots of money.

Thu Jul 5 2001 22:33:43 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Julie, email me at jrenwick@otherside.com for more info about the history of our Russia programs.

Thu Jul 5 2001 22:34:36 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, ) from 152.163.194.177
Julie, I continue to support Diabetes Research Institute in Miami, because they supported me when Z was first diagnosed and I've toured the facility and met the researchers there so many times. Are you going to the Children With Diabetes Disney Conference July 18-22? And HOW IS GRANT DOING?

Thu Jul 5 2001 22:35:45 Eastern US
Steve (Allie - 15 - dx 6/97 pump 12/99) from 24.216.218.10
And Julie - while Lori and I fully support JDRF by helping with fundraising - we've always felt our niche was support - getting families involved and networking - which helps the fundraising eeffort

Thu Jul 5 2001 22:36:04 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, ) from 152.163.194.177
Whatever oganization one picks, it just feels great to be involved.

Thu Jul 5 2001 22:36:32 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Julie which is why I made Steve and Lori be family teams chair this year for the walk! We are so lucky

Thu Jul 5 2001 22:36:50 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
Since 1999, I've raised into the hundreds of thousands for JDRF, and I have felt good about those donations. But I can't wait to take three suitcases of diabetes supplies to Zhitomir, Ukraine. That will be a big day for me to help people one on one. Grant is growing. He is the joy of our lives. He is thriving on the pump with an HbA1c range of 6.7 - 7.3

Thu Jul 5 2001 22:37:36 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Julie, you are now my idol!!!

Thu Jul 5 2001 22:38:08 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
We still fight infusion sets coming out frequently in the summer. Now that my mutliple sclerosis is worse, I'm having a hard time inserting the infusion set needle. My right hand is shaky like parkinson's disease symptoms.

Thu Jul 5 2001 22:38:32 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Julie Mastitol has helped us with that

Thu Jul 5 2001 22:38:38 Eastern US
sue (mom of tina, 14) from 64.12.103.167
julie , where are you from ??

Thu Jul 5 2001 22:38:42 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
Moira, where are you Steve and Lori? What state?

Thu Jul 5 2001 22:39:03 Eastern US
Steve (Allie - 15 - dx 6/97 pump 12/99) from 24.216.218.10
Massachusetts, Julie

Thu Jul 5 2001 22:39:10 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
Masschusetts.

Thu Jul 5 2001 22:39:25 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
I'm from Carmel, Indiana (For 40 long years.... with the exception of world traveling and four years at Purdue University)

Thu Jul 5 2001 22:39:35 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Wow, Julie. LOTS of challenges......

Thu Jul 5 2001 22:39:39 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, ) from 152.163.194.177
Julie I had no idea about the MS. Any experimental protocol for you out there? (((HUGS))) Which infusion sets are you using?

Thu Jul 5 2001 22:40:02 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
Tom and I are coming to Boston on July 27 for three days! Our diabetes nurse educator is coming to live with Grant for us!!! Second trip away since his birth.

Thu Jul 5 2001 22:40:12 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Julie, have you tried the Quicksets? They worked well at camp.

Thu Jul 5 2001 22:40:21 Eastern US
Steve (Allie - 15 - dx 6/97 pump 12/99) from 24.216.218.10
How old is grant, by the way?

Thu Jul 5 2001 22:40:58 Eastern US
Steve (Allie - 15 - dx 6/97 pump 12/99) from 24.216.218.10
Judith - ditto that on the quicksets - Allie loves them - some of the other girls in her cabin borrowed them and seemed to like them as well

Thu Jul 5 2001 22:41:39 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Can't get them, I understand. They are back-ordered. I think they may have a problem with the needle covers, which tend to fly off as soon as the package is opened.

Thu Jul 5 2001 22:42:15 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Perhaps Maribeth could get some for you, Julie.

Thu Jul 5 2001 22:42:24 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
Avonex is on my horizon, but my holistic doctor is trying to destory my candida (worse he's ever seen) first. Then he has new ideas for MS as he was wheelchair bound before he went to a clinic in England. He now practices the protocol he learned!!!! I am excited to find out about it. Grant is almost FIVE!! he was diagnosed at 11 months of age on August 26, 1997. We are stuck on Silhouettes but about to switch to quicksets

Thu Jul 5 2001 22:42:37 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, ) from 152.163.194.177
How's life with celiac, Julie? Do you find lots of foods Grant likes?

Thu Jul 5 2001 22:43:20 Eastern US
Steve (Allie - 15 - dx 6/97 pump 12/99) from 24.216.218.10
Judith - from what I understand it's the 23" tubing sets on back order....

Thu Jul 5 2001 22:43:25 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
they do fly off!

Thu Jul 5 2001 22:44:01 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
julie what willy ou be doing in Boston? Great city

Thu Jul 5 2001 22:44:16 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, ) from 152.163.194.177
Are those the same as the UltraFlex from Disetronic?

Thu Jul 5 2001 22:44:34 Eastern US
Steve (Allie - 15 - dx 6/97 pump 12/99) from 24.216.218.10
yes, ellen

Thu Jul 5 2001 22:45:01 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
I actually have one box of quicksets I will have to use as Tomis leaving me for the weekend and I just can't do the Sil again. Celiac is more painful than the "diabetes diet." There is very little melding with the rest of society eating wheat and gluten!!!! I am on a yeast-free, sugar-free, dairy-free, gluten and wheat-free diet, so the celiac disease was training for my future. There aren't really any good foods that are gluten free except 'Cause Your Special items on gluten free mall.com

Thu Jul 5 2001 22:45:09 Eastern US
Kurt(MI) (Type I) from 207.140.225.215
Hello again!

Thu Jul 5 2001 22:46:12 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
Our nurse just called and said she had three days so would we like to go -- and we picked Boston for fun!! We are staying at the Lenox Hotel, is it nice?

Thu Jul 5 2001 22:46:18 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, ) from 152.163.194.177
Julie, do you know Sonia Cooper?

Thu Jul 5 2001 22:46:47 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
We hear Boston is being DUG UP???? Where is this digging going on and how can we avoid it?

Thu Jul 5 2001 22:46:50 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
well my teen needs the computer. Thanks all for the info, night!

Thu Jul 5 2001 22:47:04 Eastern US
Moira (Lauren, 9, dx @ 6, pumping) from 24.48.181.11
YOU CAN"T JULIE!!!!

Thu Jul 5 2001 22:47:10 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, ) from 152.163.194.177
Good night Moira.

Thu Jul 5 2001 22:47:31 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
No, Sonia's name doesn't sound familiar. Who is she?

Thu Jul 5 2001 22:47:39 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
She can't??? Can't what?

Thu Jul 5 2001 22:48:01 Eastern US
Steve (Allie - 15 - dx 6/97 pump 12/99) from 24.216.218.10
Julie - no way to avoid the digging - but it doesn't really have much of an impact on visitors - just on us poor commuters who get stuck daily. When you email me about the pin, give me your itinerary and I can suggest restaurants and places to go

Thu Jul 5 2001 22:48:10 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
So, we just come in combat boots?

Thu Jul 5 2001 22:48:15 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Don't think those sets are the same, Ellen. Read about the Quicksets at www.minimed.com

Thu Jul 5 2001 22:48:36 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, ) from 152.163.194.177
I'll send you Sonia's email addy. Are you still at TJ email addy?

Thu Jul 5 2001 22:48:39 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Ah..can't avoid the digging.

Thu Jul 5 2001 22:48:57 Eastern US
Steve (Allie - 15 - dx 6/97 pump 12/99) from 24.216.218.10
naaahhh.....

Thu Jul 5 2001 22:49:21 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
Yes, that's good Ellen!

Thu Jul 5 2001 22:50:23 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
Thanks, Steve. We tried to get to nantucket, but then just decided to see Boston. Anywhere alone will be fine, digging or no digging. Okay, sorry to get us off track of activism.

Thu Jul 5 2001 22:51:40 Eastern US
Steve (Allie - 15 - dx 6/97 pump 12/99) from 24.216.218.10
email me - it is time to call it a night

Thu Jul 5 2001 22:52:31 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
Ellen, as always, thanks for all you do. You have made a WORLD of difference to me and we all have YOU in common!

Thu Jul 5 2001 22:52:40 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
Bye Steve

Thu Jul 5 2001 22:53:59 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
We did satrt a support group on the northside of Indianapolis, and it is touchng to see newly diagnosed families coming in, bleary-eyed and needing to hear stories of hope. My heart breaks over and over with the increasing number of cases diagnosed.

Thu Jul 5 2001 22:54:00 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, ) from 152.163.194.177
We're all in this together, for all of our children. My son is whining about wanting the computer. I think we should have different people pick up this chat at various times, 9 eastern, 9 central, 9 mountain, 9 pacific.....:-). Good night all. Julie, you have my deepest admiration.

Thu Jul 5 2001 22:54:23 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Julie, I'd be very interested in hearing about the new MS treatment options. My brother was dx'd with transverse myelitis in January, is still having symptoms and figures it's MS. Had a single lesion in the cord at his intial MRI, has not had a repeat.

Thu Jul 5 2001 22:54:56 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, ) from 152.163.194.177
Oh Judith/Julie, do you ever look at the www.myelin.org?

Thu Jul 5 2001 22:55:25 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
I've met lots of incredible people via this site.

Thu Jul 5 2001 22:55:53 Eastern US
Ellen (FL) (Mom of Zachary 13, dx'd 2/89, ) from 152.163.194.177
Good night, until the next Activism chat.

Thu Jul 5 2001 22:55:55 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Haven't, Ellen. Will now. Thanks.

Thu Jul 5 2001 22:56:10 Eastern US
LaUrA from 152.163.207.57
Judith and Weird Ppl like me LOL

Thu Jul 5 2001 22:57:04 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
I have multiple lesions and increasing all the time. They have ruled out mercury poisoning, but not nutrasweet poisoning. I feel it is MS, having developed it from an immune system destroyed by years of undiagnosed, untreated candidaisis. But MANY MANY conditions are misdiagnosed as MS. I will forward info to you, Judith and yes I will get on myelin.com

Thu Jul 5 2001 22:58:19 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Thanks, Julie, and best of luck to you. Hope you have a wonderful time in Boston!

Thu Jul 5 2001 22:58:30 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
Well, I have an early appointment with a doctor about this very issue (restoring my immune system), so I'll say good-bye. Thanks Ellen for emailing me about this. Now I can connect with some new people, and as always, have you to thank! Goodnight from Indy!

Thu Jul 5 2001 22:59:00 Eastern US
Judith (David, 15; Misha, 16; Vanya, 17) from 63.162.254.71
Night, all
jrenwick@otherside.com

Thu Jul 5 2001 22:59:58 Eastern US
Julie (Grant's mom in Indy) from 152.163.206.181
Thant's one last thing -- parents of children with diabetes need to watch their health carefully. No sleep for three solid years can deplete the immune system, and now what good am I to Grant!!!??? Health and hope to all, goodnight!

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