Good Morning America

[Guest guest]

Hi Gang,

I read the article yesterday.It started after Mono when she was around 10,she missed most of the fifth and sixth grade due to it.She would get sick then the joint part but it would eventually just go away on its own.Finally after a few years of not knowing what was going on she was reffered to a ped rheumy who started her on treatment,the article said she had a mild disease and her mom says thanks to the meds she is rollerblading again.It did not say alot about her JRA but was interesting.

Becki and 4systemic

[Guest guest]

Hi ,

Thanks for the heads-up. It sounds like it'll be a good story to read. (And thanks to Becki, for those further interesting details!) , I also wanted to say thank you for updating us on your daughter's condition. This is such terrific news! I do wish you guys the very best and hope that the arthritis stays in remission, permanently ... or for a VERY long time : ) It is very encouraging for the rest of our parents to hear about outcomes like your daughter 's. Sometimes things can get so discouraging but there is hope : )

Take Care,

Georgina

----- Original Message -----

From: kuzco9

Hello Everybody, I dont write much, but I still read everyones posts when I can. My daughter , 10 yrs old with systemic is officially off all meds now. We stopped the Methotrexate a month ago. Her blood work has been great for over a year now.She still gets leg pains though, but nothing that Motrin cant help. I am writing because I was watching Good Morning America this morning and they were talking about the little girl , who fell in the well back in 1987. Well she is 16 now and they were talking about all the procedures she had to have done from her injuries.They said something about her missing part of her foot, I really didnt pay that much attention, put then I heard them say that she also has juvenile rheumatoid arthritis, they didnt anything else on the subject.They said that there is a big article this month on her in Ladies Home Journal magazine.Maybe that will say more about it. I just thought I would let every one know in case your interested in reading the story. I know I will look for it next time I go to the store. Have a good weekend,

[Guest guest]

Georgina: I am having trouble disconnecting from the jralist. It was quite helpful when my daughter was diagnosed, but find I do not need it at this time.

Thanks,

Cronk

cronk@...

Re: Good Morning America

Hi ,

Thanks for the heads-up. It sounds like it'll be a good story to read. (And thanks to Becki, for those further interesting details!) , I also wanted to say thank you for updating us on your daughter's condition. This is such terrific news! I do wish you guys the very best and hope that the arthritis stays in remission, permanently ... or for a VERY long time : ) It is very encouraging for the rest of our parents to hear about outcomes like your daughter 's. Sometimes things can get so discouraging but there is hope : )

Take Care,

Georgina

----- Original Message -----

From: kuzco9

Hello Everybody, I dont write much, but I still read everyones posts when I can. My daughter , 10 yrs old with systemic is officially off all meds now. We stopped the Methotrexate a month ago. Her blood work has been great for over a year now.She still gets leg pains though, but nothing that Motrin cant help. I am writing because I was watching Good Morning America this morning and they were talking about the little girl , who fell in the well back in 1987. Well she is 16 now and they were talking about all the procedures she had to have done from her injuries.They said something about her missing part of her foot, I really didnt pay that much attention, put then I heard them say that she also has juvenile rheumatoid arthritis, they didnt anything else on the subject.They said that there is a big article this month on her in Ladies Home Journal magazine.Maybe that will say more about it. I just thought I would let every one know in case your interested in reading the story. I know I will look for it next time I go to the store. Have a good weekend,

[Guest guest]

i watched the show and wanted to know more about her they didnt do much on her but would have liked more info was just a few months old when fell thanks for the info on the magazine i will look for it just for that story

Robbin

[Guest guest]

---Dear ,

I'm not sure if you will find this message...but I am the mother of a

3 year old with systemic JRA. I've been wanting to hear from anyone

with a sucess story about their child with systemic JRA. has

been batteling the disease for two years now and I am praying for a

remission. E-mail me at mwestfal@.... Sincerely, Marguerite In

@y..., " kuzco9 " <BUDDFAM4@H...> wrote:

> Hello Everybody,

> I dont write much, but I still read everyones posts when I

can.

> My daughter , 10 yrs old with systemic is officially off

all

> meds now. We stopped the Methotrexate a month ago. Her blood work

has

> been great for over a year now.She still gets leg pains though, but

> nothing that Motrin cant help.

> I am writing because I was watching Good Morning America this

> morning and they were talking about the little girl , who

fell

> in the well back in 1987. Well she is 16 now and they were talking

> about all the procedures she had to have done from her

injuries.They

> said something about her missing part of her foot, I really didnt

pay

> that much attention, put then I heard them say that she also has

> juvenile rheumatoid arthritis, they didnt anything else on the

> subject.They said that there is a big article this month on her in

> Ladies Home Journal magazine.Maybe that will say more about it. I

> just thought I would let every one know in case your interested in

> reading the story. I know I will look for it next time I go to the

> store. Have a good weekend,

[Guest guest]

---Dear ,

I'm not sure if you will find this message...but I am the mother of a

3 year old with systemic JRA. I've been wanting to hear from anyone

with a sucess story about their child with systemic JRA. has

been batteling the disease for two years now and I am praying for a

remission. E-mail me at mwestfal@.... Sincerely, Marguerite In

@y..., " kuzco9 " <BUDDFAM4@H...> wrote:

> Hello Everybody,

> I dont write much, but I still read everyones posts when I

can.

> My daughter , 10 yrs old with systemic is officially off

all

> meds now. We stopped the Methotrexate a month ago. Her blood work

has

> been great for over a year now.She still gets leg pains though, but

> nothing that Motrin cant help.

> I am writing because I was watching Good Morning America this

> morning and they were talking about the little girl , who

fell

> in the well back in 1987. Well she is 16 now and they were talking

> about all the procedures she had to have done from her

injuries.They

> said something about her missing part of her foot, I really didnt

pay

> that much attention, put then I heard them say that she also has

> juvenile rheumatoid arthritis, they didnt anything else on the

> subject.They said that there is a big article this month on her in

> Ladies Home Journal magazine.Maybe that will say more about it. I

> just thought I would let every one know in case your interested in

> reading the story. I know I will look for it next time I go to the

> store. Have a good weekend,

[Guest guest]

Did anyone see GMA today? Tom said he saw 2 women who were waiting for their

hubbys(Military) who had both had WLS and he though they were DS pts from the

SanDiego area....He might have been confused though...

in Bama

http://hometown.aol.com/mdl1031/myhomepage/profile.html

Surgery- RNY to DS revision on12/6 -377.5

12/17 - 346.5 ( minus 31lbs)

01/15- 338.1 (minus 39.1lbs)

02/12-330.0 (minus 47.5 lbs)

04/06- 324.3 (minus 53.2 lbs)

05/02- 311 (minus 66.5 lbs)

[Guest guest]

NOPE! I was disappointed I got my lazy butt outta bed just to see em ramble

about the Roloff's land.. blah!

Amy

In a message dated 3/23/2004 11:42:09 AM Central Standard Time,

elevatia@... writes:

Did they say anything about LPA in the segment? I don't think I heard

anything

mentioned about it this morning.

Irene

[Guest guest]

Yeah, but I think I recall him mentioning the fact he wanted to get LPA's

name out there.. Hence the reason why he was wanting to do the debate on FOX

about the show.. I believe he was saying he wanted to be able to use that as a

way

to get LPA's name out there.. so it surprised me he didn't take this chance

to do so as well.. *shrugs*

Amy (who's 1 msg away from her 3 per day limit.. grrr)

In a message dated 3/23/2004 12:16:28 PM Central Standard Time,

bfbmrb@... writes:

I don't remember LPA being mentioned, however the segments was about

" Amazing Families " and perhaps not the right forum to bring in LPA unless

the subject was introduced by the interviewer.

Certainly the Roloff Family qualifies as an " Amazing Family "

[Guest guest]

Did they say anything about LPA in the segment? I don't think I heard anything

mentioned about it this morning.

Irene

> I just watched Good Morning America. I thought it was very well done. We

> need to be on these kind of shows more, they do a good job. Mona in Houma,

La.

>

>

>

[Guest guest]

No they didnt mention the LPA.

They were talking about " Amazing Families " and they did talk about

how families often dont have dwarfism and happen to have a child

with dwarfism, and what the odds are if you do have dwarfism, etc.

It was very good. I was glad for once that I was late for work...

a

> > I just watched Good Morning America. I thought it was very well

done. We

> > need to be on these kind of shows more, they do a good job.

Mona in Houma,

> La.

> >

> >

> >

[Guest guest]

I do not believe the Roloff family was ever given the chance to speak

about LPA and I definitely did not get the feeling that the Roloff

family gloated about there land. The segment was to be about there

family and not LPA, so if anything they should have gloated about there

farm!

Amber ston

District 13 Director

Little People of America, Inc.

<http://www.lpadistrict13.org> www.lpadistrict13.org

Re: Re: Good Morning America

NOPE! I was disappointed I got my lazy butt outta bed just to see em

ramble

about the Roloff's land.. blah!

Amy

In a message dated 3/23/2004 11:42:09 AM Central Standard Time,

elevatia@... writes:

Did they say anything about LPA in the segment? I don't think I heard

anything

mentioned about it this morning.

Irene

[Guest guest]

I don't remember LPA being mentioned, however the segments was about

" Amazing Families " and perhaps not the right forum to bring in LPA unless

the subject was introduced by the interviewer.

Certainly the Roloff Family qualifies as an " Amazing Family "

Re: Good Morning America

> Did they say anything about LPA in the segment? I don't think I heard

anything

> mentioned about it this morning.

>

> Irene

>

>

>

>

> > I just watched Good Morning America. I thought it was very well done.

We

> > need to be on these kind of shows more, they do a good job. Mona in

Houma,

> La.

> >

> >

> >

[Guest guest]

My first impression was to say, " A nice segement but too soft. Not sure what I

wanted to see/hear, but that wasn't it. " Then I gave it a little more

thought. The segement wasn't difficulties in the dwarfism community and how

does society mis-behave -- it was Amazing Families, and in that respect they

were dead on!

BTW, I really like Mrs. R's hair style!

MONAP109@... wrote:

I just watched Good Morning America. I thought it was very well done. We

need to be on these kind of shows more, they do a good job. Mona in Houma, La.

[Guest guest]

ABC and GMA were doing a segment about the Roloff family, not LPA. Hopefully,

our officers can have the freedom to carry out their private lives (even if it

is on public TV) without having to worry about LPA business.

In fact, I would hope everyone, members and officers alike, make family and

careers their top priority, not LPA.

Bill Bradford

[Guest guest]

Well said, Bill.

Barbara Spiegel

Re: Good Morning America

> ABC and GMA were doing a segment about the Roloff family, not LPA.

Hopefully, our officers can have the freedom to carry out their private

lives (even if it is on public TV) without having to worry about LPA

business.

>

> In fact, I would hope everyone, members and officers alike, make family

and careers their top priority, not LPA.

>

> Bill Bradford

>

>

>

> ===

>

[Guest guest]

Bill and Barbara are absolutely right. But the flip side is, why wouldn't

ABC at least briefly mention that Matt is president of LPA? I know Matt

wanted that, because he and I spoke about it the day before the broadcast.

Dan

On 3/23/04 9:49 PM, " bspiegel@... " <bspiegel@...> wrote:

> Well said, Bill.

>

>

> Barbara Spiegel

> Re: Good Morning America

>

>

>> ABC and GMA were doing a segment about the Roloff family, not LPA.

> Hopefully, our officers can have the freedom to carry out their private

> lives (even if it is on public TV) without having to worry about LPA

> business.

>>

>> In fact, I would hope everyone, members and officers alike, make family

> and careers their top priority, not LPA.

>>

>> Bill Bradford

[Guest guest]

Exactly. Great opportunity for Charlie Gibson to have said something... but oh

well.

But in hindsight, didn't realize it was a segment on " Amazing Families " - so it

was

very appropriate for that subject.

Irene

>

> > Well said, Bill.

> >

> >

> > Barbara Spiegel

> > Re: Good Morning America

> >

> >

> >> ABC and GMA were doing a segment about the Roloff family, not LPA.

> > Hopefully, our officers can have the freedom to carry out their private

> > lives (even if it is on public TV) without having to worry about LPA

> > business.

> >>

> >> In fact, I would hope everyone, members and officers alike, make family

> > and careers their top priority, not LPA.

> >>

> >> Bill Bradford

[Guest guest]

Mindy, Does your friend understand the importance that we

are dealing with a disease, an epidemic NOT a developmental

disorder?

[Guest guest]

I guess we've got two Lori's here. I did happen to catch the Good Morning America piece yesterday and expecting the worst, I found the piece pretty fair. I thought JB and , their adorable son , and their doctor did a terrific job. They presented both sides, of course, but it seemed like they gave JB & Co. more time to speak and I didn't spot any editorial tricks. Lori E.

Good Morning America

I noticed there were NOT a lot of comments about the show. I felt outrage at the lies being told by ABC doctors to many many more people than WE have a voice for. Why can't they have fair journalism and at least say "maybe" there is some truth "maybe" there isn't. They keep on crucifieing us! Does freedom of speach include lying? They made us look like idiots latching on to anything, even snake oil, to help our kids. The ones they say have no mercury poisoning, just a "Genetic Epidemic"

[Guest guest]

I shared the same opinion as LoriE--I saw it and thought that it

was " fair " to both sides of the issue. Yes, I didn't appreciate that

woman doctor talking about how it is unproven, etc. because of

exactly what and others have written about lately--if it's so

gosh darned unproven then fund the science to study it! It's not

like chelation is something " new " some flash in the pan fad... it's

been going on for a long time now. I thought it was good that they

distinguished between IV chelation and the transdermal chelation that

and JB are doing with their son, and so overall I was not

impressed by the coverage (other than to see and JB and their

darling boy--*that* was impressive!) but you know, I don't think the

piece was damaging or condescending. If anything, I think it

illustrated the need for more answers.

W

> I guess we've got two Lori's here. I did happen to catch the Good

Morning America piece yesterday and expecting the worst, I found the

piece pretty fair. I thought JB and , their adorable son ,

and their doctor did a terrific job. They presented both sides, of

course, but it seemed like they gave JB & Co. more time to speak and

I didn't spot any editorial tricks. Lori E.

>

[Guest guest]

Is there any link to a clip of JB & on GMA?

> > I guess we've got two Lori's here. I did happen to catch the Good

> Morning America piece yesterday and expecting the worst, I found the

> piece pretty fair. I thought JB and , their adorable son ,

> and their doctor did a terrific job. They presented both sides, of

> course, but it seemed like they gave JB & Co. more time to speak and

> I didn't spot any editorial tricks. Lori E.

> >

[Guest guest]

I missed it -someone please recap.

>

> I noticed there were NOT a lot of comments about the show. I felt

> outrage at the lies being told by ABC doctors to many many more

people

> than WE have a voice for. Why can't they have fair journalism and at

> least say " maybe " there is some truth " maybe " there isn't. They keep

> on crucifieing us! Does freedom of speach include lying? They made

us

> look like idiots latching on to anything, even snake oil, to help our

> kids. The ones they say have no mercury poisoning, just a " Genetic

> Epidemic "

>

[Guest guest]

I missed the first 5 minutes of it, but tuned in for the last 10 minutes or so. As usual did a great job considering she probably had limitations on the show. They discussed vaccines near the end and said again she is not opposed to vaccines, but does not believe 1 size fits all-and of course Diane S said---we know vaccines have saved so many lives-etc etc and all that crap. jenny did again discuss her son's amazing change from being on GF/Cf diet and peds need to learn all this and inform their patients--kind of "Come on, pediatricians-get with the program and help children." and she said "there are so many chi8ldren out there that need their doctor's help and they are not getting it. MaurineHolly <inticci@...> wrote: I missed it -someone please recap.>> I noticed there were NOT a lot of comments about the show. I felt > outrage at the lies being told by ABC doctors to many many more people > than WE have a voice for. Why can't they have fair journalism and at > least say "maybe" there is some truth "maybe" there isn't. They keep > on crucifieing us! Does freedom of speach include lying? They made us > look like idiots latching on to anything, even snake oil, to help our > kids. The ones they say have no mercury poisoning, just a "Genetic >

Epidemic">

Take the Internet to Go: Go puts the Internet in your pocket: mail, news, photos more.

[Guest guest]

Some of the replies on the GMA story this morning about , are

good and some pure hate. I guess we all need to get on there and

post. I know its not a one size fits all but I am thrilled the word

is out and its been out all week!! Its like autism awarness week,

Thank goodness for spreading the word.

In EOHarm , Maurine Meleck <maurine_meleck@...> wrote:

>

> I missed the first 5 minutes of it, but tuned in for the last 10

minutes or so. As usual did a great job considering she

probably had limitations on the show. They discussed vaccines near

the end and said again she is not opposed to vaccines, but does

not believe 1 size fits all-and of course Diane S said---we know

vaccines have saved so many lives-etc etc and all that crap. jenny

did again discuss her son's amazing change from being on GF/Cf diet

and peds need to learn all this and inform their patients--kind

of " Come on, pediatricians-get with the program and help children. "

and she said " there are so many chi8ldren out there that need their

doctor's help and they are not getting it.

> Maurine

>

> Holly <inticci@...> wrote:

> I missed it -someone please recap.

>

>

> >

> > I noticed there were NOT a lot of comments about the show. I felt

> > outrage at the lies being told by ABC doctors to many many more

> people

> > than WE have a voice for. Why can't they have fair journalism and

at

> > least say " maybe " there is some truth " maybe " there isn't. They

keep

> > on crucifieing us! Does freedom of speach include lying? They

made

> us

> > look like idiots latching on to anything, even snake oil, to help

our

> > kids. The ones they say have no mercury poisoning, just

a " Genetic

> > Epidemic "

> >

>

>

>

>

>

>

> ---------------------------------

> Take the Internet to Go: Go puts the Internet in your pocket:

mail, news, photos & more.

>