Making People Aware

[Guest guest]

Hi,

I've been in this group for about 2 yrs. The idea of Oprah (or those

like her) comes up every few months and quite a few people have tried

to get her (or her staff) interested, without any succes. I have

heard of local news stations doing a story, but that is about it.

I do wish you luck with this, since I would love for more people to be

aware of the issues around plagio and treatment options.

-christine

sydney 2.5 yrs starband grad

>

> My daughter is now 8 months old. I noticed that she had a flat

> spot before she was even a month. Her doctor told me she would grow

> out of it. I'm sure you've all heard this before. She didn't and it

> got worse. Two doctors and 3 months later I finally found out what

> was happening on my own. She was diagnosed with severe brachy and a

> moderate case of plagio. Thanks to posts like this one I found out

> about repositional therapy and learned that my conserns were real. I

> found someone to make her a cranial band and after 2 months she's

> showing improvment. Her doctor thinks it's a torture device. I'm

> finding that there are far more children that suffer from this than

> the public is aware of. Since my daughter has been wearing her band

> people have approached me and asked me about it. Some have even told

> me that they wish they had known because they have children,

> grandchildren, nieces, nephews, the list goes on. All have the same

> problem and it was never treated.

>

> This brings me to the reason for my post. Maybe it's a long shot, but

> perhaps if all the parents got together and wrote letters and sent

> pictures to someone like Oprah then maybe it would open the publics

> eyes. People need to be aware of the fact that this is a growing

> problem and doctors aren't treating it. So far there are 2 other

> people from the Older Plagio group that are willing to write leters.

> Please consider it. I look forward to any feed back you may have.

>

[Guest guest]

I have to believe that if we keep trying someone will hear us. I don't give up easily. I'm a stay at home mom and every morning I wake up and see my beautiful daughter look up at me with love and trust in her eyes and all I want to do is cry. Somehow there is a way to be heard.

Tammy Merkel

From: christineashok <christineashok@...>Subject: Re: Making People AwarePlagiocephaly Date: Thursday, June 19, 2008, 4:12 PM

Hi,I've been in this group for about 2 yrs. The idea of Oprah (or thoselike her) comes up every few months and quite a few people have triedto get her (or her staff) interested, without any succes. I haveheard of local news stations doing a story, but that is about it.I do wish you luck with this, since I would love for more people to beaware of the issues around plagio and treatment options.-christinesydney 2.5 yrs starband grad>> My daughter is now 8 months old. I noticed that she had a flat > spot before she was even a month. Her doctor told me she would grow > out of it. I'm sure you've all heard this before. She didn't and it > got worse. Two doctors and 3 months later I finally found out what > was

happening on my own. She was diagnosed with severe brachy and a > moderate case of plagio. Thanks to posts like this one I found out > about repositional therapy and learned that my conserns were real. I > found someone to make her a cranial band and after 2 months she's > showing improvment. Her doctor thinks it's a torture device. I'm > finding that there are far more children that suffer from this than > the public is aware of. Since my daughter has been wearing her band > people have approached me and asked me about it. Some have even told > me that they wish they had known because they have children, > grandchildren, nieces, nephews, the list goes on. All have the same > problem and it was never treated. > > This brings me to the reason for my post. Maybe it's a long shot, but > perhaps if all the parents got together and wrote letters and sent >

pictures to someone like Oprah then maybe it would open the publics > eyes. People need to be aware of the fact that this is a growing > problem and doctors aren't treating it. So far there are 2 other > people from the Older Plagio group that are willing to write leters. > Please consider it. I look forward to any feed back you may have.>

[Guest guest]

I think the key to getting a producer at one of these television shows

to take notice is to present the story in their language. They aren't

interested in bleeding heart or " woe is me " stories as much as they

are interested in a story that has tension and controversy.

Fortunately, this story (our stories) DO have tension: it is the

medical establishment inadvertently causing a medical condition which

they then later say is unnecessary to treat; its parents vs insurance;

and perhaps parents being taken in by pseudo-medical companies with

dubious claims of success in their desperation to find a " cure " (not

my opinion, but it could be construed that way).

I think the story is complex enough and controversial enough to be of

more interest to 60 Minutes than Oprah or Maury. The format of the

talk shows might make it difficult to represent all sides of the issue

to the audience.

>

[portion of post deleted]

> This brings me to the reason for my post. Maybe it's a long shot, but

> perhaps if all the parents got together and wrote letters and sent

> pictures to someone like Oprah then maybe it would open the publics

> eyes. People need to be aware of the fact that this is a growing

> problem and doctors aren't treating it. So far there are 2 other

> people from the Older Plagio group that are willing to write leters.

> Please consider it. I look forward to any feed back you may have.

>

[Guest guest]

This is why I wanted to do it as a group effort. I hadn't thought of something like 60 mins or Parents magazine. We need all the imput we can get.

Tammy Merkel

From: denasiegel <denasiegel@...>Subject: Re: Making People AwarePlagiocephaly Date: Wednesday, June 25, 2008, 12:37 AM

I think the key to getting a producer at one of these television showsto take notice is to present the story in their language. They aren'tinterested in bleeding heart or "woe is me" stories as much as theyare interested in a story that has tension and controversy.Fortunately, this story (our stories) DO have tension: it is themedical establishment inadvertently causing a medical condition whichthey then later say is unnecessary to treat; its parents vs insurance;and perhaps parents being taken in by pseudo-medical companies withdubious claims of success in their desperation to find a "cure" (notmy opinion, but it could be construed that way).I think the story is complex enough and controversial enough to be ofmore interest to 60 Minutes than Oprah or Maury. The format of thetalk shows might make it difficult to represent all sides of the issueto the audience.>[portion of post deleted]> This brings me to the reason for my post. Maybe it's a long shot, but > perhaps if all the parents got together and wrote letters and sent > pictures to someone like Oprah then maybe it would open the publics > eyes. People need to be aware of the fact that this is a growing > problem and doctors aren't treating it. So far there are 2 other > people from the Older Plagio group that are willing to write leters. > Please consider it. I look forward to any feed back you may have.>

[Guest guest]

I have a friend who is a contributing writer to Parents, Wondertime and a couple of other parenting magazines. I'll contact her! Re: Making People AwarePlagiocephalyDate: Wednesday, June 25, 2008, 12:37 AM

I think the key to getting a producer at one of these television showsto take notice is to present the story in their language. They aren'tinterested in bleeding heart or "woe is me" stories as much as theyare interested in a story that has tension and controversy.Fortunately, this story (our stories) DO have tension: it is themedical establishment inadvertently causing a medical condition whichthey then later say is unnecessary to treat; its parents vs insurance;and perhaps parents being taken in by pseudo-medical companies withdubious claims of success in their desperation to find a "cure" (notmy opinion, but it could be construed that way).I think the story is complex enough and controversial enough to be ofmore interest to 60 Minutes than Oprah or Maury. The format of thetalk shows might make it difficult to represent all sides of the issueto the audience.>[portion of post deleted]> This brings me to the reason for my post. Maybe it's a long shot, but > perhaps if all the parents got together and wrote letters and sent > pictures to someone like Oprah then maybe it would open the publics > eyes. People need to be aware of the fact that this is a growing > problem and doctors aren't treating it. So far there are 2 other > people from the Older Plagio group that are willing to write leters. > Please consider it. I look forward to any feed back you may have.>

[Guest guest]

That is wonderful!! If you could that would let us know what it takes to get someones attention. Thank you!

Tammy Merkel

From: denasiegel <denasiegel (DOT) com>Subject: Re: Making People AwarePlagiocephalyDate: Wednesday, June 25, 2008, 12:37 AM

I think the key to getting a producer at one of these television showsto take notice is to present the story in their language. They aren'tinterested in bleeding heart or "woe is me" stories as much as theyare interested in a story that has tension and controversy.Fortunately, this story (our stories) DO have tension: it is themedical establishment inadvertently causing a medical condition whichthey then later say is unnecessary to treat; its parents vs insurance;and perhaps parents being taken in by pseudo-medical companies withdubious claims of success in their desperation to find a "cure" (notmy opinion, but it could be construed that way).I think the story is complex enough and controversial enough to be ofmore interest to 60 Minutes than Oprah or Maury. The format of thetalk shows might make it difficult to represent all sides of the issueto the audience.>[portion of post deleted]> This brings me to the reason for my post. Maybe it's a long shot, but > perhaps if all the parents got together and wrote letters and sent > pictures to someone like Oprah then maybe it would open the publics > eyes. People need to be aware of the fact that this is a growing > problem and doctors aren't treating it. So far there are 2 other > people from the Older Plagio group that are willing to write leters. > Please consider it. I look forward to any feed back you may have.>

[Guest guest]

I am also in. This has been the most stressful thing and I don't want others to endure this if it can be avoided. My pedi dropped the ball and i did not know any better. I live in San Diego. Just let me know what I can do to help!!!

mom to Bryce, 6 and a half months old, 6 weeks in Starband

Re: Making People Aware

I am in! I will try my best to help yall get the information out. Let me know how I can help. Mom to Jersey (4 months old awaiting the fitting of her DOC band)> >> [portion of post deleted]> > This brings me to the reason for my post. Maybe it's a long shot, but > > perhaps if all the parents got together and wrote letters

and sent > > pictures to someone like Oprah then maybe it would open the publics > > eyes. People need to be aware of the fact that this is a growing > > problem and doctors aren't treating it. So far there are 2 other > > people from the Older Plagio group that are willing to write leters. > > Please consider it. I look forward to any feed back you may have.> >>

[Guest guest]

I wrote to Oprah. We'll see what happens!

[Guest guest]

I would like to be included in this! Please let me know what happens.

Toni

Re: Making People Aware

I wrote to Oprah. We'll see what happens!

[Guest guest]

I also wrote to Oprah and NBC5 in Chicago. If, by some crazy chance, I receive a response, I'll let you all know!Sandymom to Lyla - 7 months - almost 4 weeks in DocBandand Owen 4 Re: Making People Aware

I wrote to Oprah. We'll see what happens!

[Guest guest]

i think this idea is awsome and i would love to be included. i was also wondering maybe Ellen Degenrese would be willing to do on show on this. i have a number to a guy at her show so if you all think its sounds good i will try to get a hold of him.

Bradley 14 months ( starbamd for 5 months)

Madison 3 yrs

7yrs

Re: Making People Aware

I wrote to Oprah. We'll see what happens!

[Guest guest]

I have been reading all of these posts on ideas for making people

aware and I am all for it... I just wanted to make sure that whenever

it is decided to go forward that everyone has the opportunity to

participate if desired...not sure in what format, but I would like to

be in the loop for this thing... besides, the message is louder in

numbers...you guys rock

Shenelle

Katy, TX

>

> From: Gardner <tinkmommyof3>

> Subject: Re: Re: Making People Aware

> Plagiocephaly

> Date: Sunday, June 29, 2008, 2:48 PM

>

>

>

>

>

>

> i think this idea is awsome and i would love to be included. i was

also wondering maybe Ellen Degenrese would be willing to do on show

on this. i have a number to a guy at her show so if you all think its

sounds good i will try to get a hold of him.

>  

>

> Bradley 14 months ( starbamd for 5 months)

> Madison 3 yrs

> 7yrs

>

>

>

> Re: Making People Aware

>

>

>

> I wrote to Oprah. We'll see what happens!

>

[Guest guest]

Certainly everyone will have a chance. I'm hoping that when it comes time that everyone will get involved. There are parents in the Older Plagio group that also want to be involved. The more the better.

Tammy Merkel, AZ ( 8 months old - StarBand little over 2 months)

From: keejaylove <keejaylove@...>Subject: Re: Making People AwarePlagiocephaly Date: Monday, June 30, 2008, 8:16 AM

I have been reading all of these posts on ideas for making people aware and I am all for it... I just wanted to make sure that whenever it is decided to go forward that everyone has the opportunity to participate if desired...not sure in what format, but I would like to be in the loop for this thing... besides, the message is louder in numbers...you guys rockShenelleKaty, TX> > From: Gardner <tinkmommyof3>> Subject: Re: Re: Making People Aware> Plagiocephaly> Date: Sunday, June 29, 2008, 2:48 PM> > > > > > > i think this idea is awsome and i would love to be included. i was also wondering maybe Ellen Degenrese would be willing to do on show on this. i have a number to a guy at her show so if you all think its sounds good i will try to get a hold of him.> > > Bradley 14 months ( starbamd for 5 months)> Madison 3 yrs> 7yrs> > > > Re: Making People Aware> > > > I wrote to Oprah. We'll

see what happens!>

[Guest guest]

it would be a great if this really goes through with oprah or ellen because they could have the whole audience of mothers and fathers with babies who have either graduated or are going throuth the process. that would be a great way for everyone to be involved just to show that there are several families that are going thouth this and whos children have this

Re: Making People Aware> > > > I wrote to Oprah. We'll see what happens!>

[Guest guest]

I bet that we could get various Cranial Tech facilities to help us out as well. Maybe with a letter as well, or something to that effect.

From: keejaylove <keejaylove (DOT) com>Subject: Re: Making People AwarePlagiocephalyDate: Monday, June 30, 2008, 8:16 AM

I have been reading all of these posts on ideas for making people aware and I am all for it... I just wanted to make sure that whenever it is decided to go forward that everyone has the opportunity to participate if desired...not sure in what format, but I would like to be in the loop for this thing... besides, the message is louder in numbers...you guys rockShenelleKaty, TX> > From: Gardner <tinkmommyof3>> Subject: Re: Re: Making People Aware> Plagiocephaly> Date: Sunday, June 29, 2008, 2:48 PM> > > > > > > i think this idea is awsome and i would love to be included. i was also wondering maybe Ellen Degenrese would be willing to do on show on this. i have a number to a guy at her show so if you all think its sounds good i will try to get a hold of him.> > > Bradley 14 months ( starbamd for 5 months)> Madison 3 yrs> 7yrs> > > > Re: Making People Aware> > > > I wrote to Oprah. We'll see what happens!>

[Guest guest]

Ok, had a friend give me an idea. She suggested the March of Dimes. While on their website I noticed a link to a fund raiser that was being done by Regis and for the March of Dimes. What do you think? Would Regis and be interested?

Do you want to start with one show, or do several shows at once? I'm think Regis and , Oprah, Ellen and Parents Magazine. Suggestions? Comments? I'm open to anything.

I also think that we shold not only e-mail them but send letters along with pictures. You can't really get as detailed in an e-mail because they only give you a little space to write. Also with the letters we can send pictures.

If we're going to do this then we need to band together. It will have more effect if they see that we come from not only different states, but also different countries.

What do you think? If you're ready then I will post the links and addresses. All you have to do is create one e-mail and just copy and past to all of them. Same with the letters. Print the same letter for all of them. I would suggest that you sign the letters personally rather than printed signature. Include a before, during and (if your litttle one has graduated) after pic.

I'm ready to start are you?

Tammy Merkel mother of 8 1/2 months starband 2 1/2 months

[Guest guest]

Count me in! has only had his DOC band a week and I feel like

I've gone through this explanation so much. It would be so nice to

bring awareness to the issue. I have to admit, before this happened

with , I knew nothing about plagio - not even the name. We need

to spread the word.

I would be happy to send out letters. Let me know what else I can do.

Roderick, mom of , 6 months old, 5 days in DOC band!

On Sat, Jul 5, 2008 at 11:42 PM, Tammy Merkel <merk_woman@...> wrote:

>

> Ok, had a friend give me an idea. She suggested the March of Dimes. While

> on their website I noticed a link to a fund raiser that was being done by

> Regis and for the March of Dimes. What do you think? Would Regis and

> be interested?

>

>

>

> Do you want to start with one show, or do several shows at once? I'm think

> Regis and , Oprah, Ellen and Parents Magazine. Suggestions? Comments?

> I'm open to anything.

>

>

>

> I also think that we shold not only e-mail them but send letters along with

> pictures. You can't really get as detailed in an e-mail because they only

> give you a little space to write. Also with the letters we can send

> pictures.

>

>

>

> If we're going to do this then we need to band together. It will have more

> effect if they see that we come from not only different states, but also

> different countries.

>

>

>

> What do you think? If you're ready then I will post the links and

> addresses. All you have to do is create one e-mail and just copy and past

> to all of them. Same with the letters. Print the same letter for all of

> them. I would suggest that you sign the letters personally rather than

> printed signature. Include a before, during and (if your litttle one has

> graduated) after pic.

>

>

>

> I'm ready to start are you?

>

>

>

> Tammy Merkel mother of 8 1/2 months starband 2 1/2 months

>

>

[Guest guest]

It's funny that you mentioned the helmets being for babies that banged their heads. I thought the same thing. I figured that it was for mentally challenged children that were accident prone.

Your suggestions about the Today Show and the View are excellent ones. So far these are the main contenders:

Today Show

View

Oprah

Ellen

Parents Magazine

Regis and

Personally I would like to get the at least the e-mails out by Monday. If everyones on board let me know and I'll post the links.

Tammy Merkel ( 8 1/2months starband 2 1/2months)

[Guest guest]

I'm in!!

Making People Aware

It's funny that you mentioned the helmets being for babies that banged their heads. I thought the same thing. I figured that it was for mentally challenged children that were accident prone.

Your suggestions about the Today Show and the View are excellent ones. So far these are the main contenders:

Today Show

View

Oprah

Ellen

Parents Magazine

Regis and

Personally I would like to get the at least the e-mails out by Monday. If everyones on board let me know and I'll post the links.

Tammy Merkel ( 8 1/2months starband 2 1/2months)

[Guest guest]

Hi,

I am interested in participating. I emailed Oprah and Dr. Phil about two months ago with no response. However, if several of us get together, perhaps the producers would take notice.

Candace

From: merk_woman@...Date: Tue, 8 Jul 2008 09:04:51 -0700Subject: Making People Aware

It's funny that you mentioned the helmets being for babies that banged their heads. I thought the same thing. I figured that it was for mentally challenged children that were accident prone.

Your suggestions about the Today Show and the View are excellent ones. So far these are the main contenders:

Today Show

View

Oprah

Ellen

Parents Magazine

Regis and

Personally I would like to get the at least the e-mails out by Monday. If everyones on board let me know and I'll post the links.

Tammy Merkel ( 8 1/2months starband 2 1/2months) Need to know now? Get instant answers with Windows Live Messenger. IM on your terms.

[Guest guest]

I AM IN TOO!!!!!!!!!!!

Making People Aware

It's funny that you mentioned the helmets being for babies that banged their heads. I thought the same thing. I figured that it was for mentally challenged children that were accident prone.

Your suggestions about the Today Show and the View are excellent ones. So far these are the main contenders:

Today Show

View

Oprah

Ellen

Parents Magazine

Regis and

Personally I would like to get the at least the e-mails out by Monday. If everyones on board let me know and I'll post the links.

Tammy Merkel ( 8 1/2months starband 2 1/2months)

[Guest guest]

Please count me (plus family and friends) in!

>

> I am also in!  I actually have had 2 parents come up to me and ask

me where they can get a helmet for their kids that have been fallling

a lot lately.  In addition, I have had at least 6 or 7 people say " he

wears that because he bumps/bangs his head alot...right? "   WE MUST

INFORM THE PUBLIC! 

> Let me kow what I can do.

>

>   Making People Aware

>

>

> It's funny that you mentioned the helmets being for babies that

banged their heads.  I thought the same thing.  I figured that it was

for mentally challenged children that were accident prone. 

>  

> Your suggestions about the Today Show and the View are excellent

ones.  So far these are the main contenders:

>  

> Today Show

> View

> Oprah

> Ellen

> Parents Magazine

> Regis and

>  

> Personally I would like to get the at least the e-mails out by

Monday.  If everyones on board let me know and I'll post the links. 

>  

> Tammy Merkel ( 8 1/2months starband 2 1/2months)

>