Re: letter rewritten for Dr. Phil

[Guest guest]

To the Group--

I sent one of 's letters to the NIH Rare Diseases department and I got some really great information back. I am attaching the documents they sent to me about getting a study going. We all have to do this!! It might take some effort to get a physician to back us with a referral and letter, but the more people who send it the more they will realize how serious this is. Plus, they will have plenty of people to conduct the study which has to be enticing for them.

Let me know what you think.

Kathy

..

[Guest guest]

That is a facking good letter, . Brava! Send it away and let's all hope it kicks some ass.

I wouldn't want to go on Dr. Phil unless I was paid for the time away from work, though, and even then I'd hesitate. The man talks a lot, but he doesn't say much, and I'm not sure how well I'd keep my disrespect reined in. (And my mother thinks he's great, go figure.)

I wrote to Oprah instead.

= M-F.

----- Original Message ----- >>I have heard your requests, and though I was miffed with Dr. Phil for > the way he treated Joan, one of our own here, when she appeared on > his show, I decided to edit my letter and send it to his show as > well. Here it is again, with the changes toward the end (after the > line of asterisks ****).> > I hope I am right in that some of you might be interested/willing to > go on to his show and talk about 4S. I know I would do it, but it > would mean alot if more of us could go on together.> >

[Guest guest]

Welllll i would most definitely go on dr. phil. I dont watch that show, but if

they were willing to inform people about 4s, they should also show that it

effects ALL ages. At least from the young teens, me!, to older people. And that

it never goes away.

>

> Subject: Re: letter rewritten for Dr. Phil

> To: Soundsensitivity

> Date: Monday, July 7, 2008, 8:23 PM

> That is a facking go od letter, . Brava! Send it away

> and let's all hope it kicks some ass.

>

> I wouldn't want to go on Dr. Phil unless I was paid for

> the time away from work, though, and even then I'd

> hesitate. The man talks a lot, but he doesn't say much,

> and I'm not sure how well I'd keep my disrespect

> reined in. (And my mother thinks he's great, go

> figure.)

>

> I wrote to Oprah instead.

>

>

> = M-F.

>

>

> ----- Original Message -----

> >

>

> >I have heard your requests, and though I was miffed

> with Dr. Phil for

> > the way he treated Joan, one of our own here, when she

> appeared on

> > his show, I decided to edit my letter and send it to

> his show as

> > well. Here it is again, with the changes toward the

> end (after the

> > line of asterisks ****).

> >

> > I hope I am right in that some of you might be

> interested/willing to

> > go on to his show and talk about 4S. I know I would

> do it, but it

> > would mean alot if more of us could go on together.

> >

> >

[Guest guest]

Heck, i would go again in a heartbeat. Even though he did not help my 4s nor seemingly do his homework (because he was focused on the main topic which was etiquette) I stayed at the Renaissance Hollywood Hotel, had $100 to spend on room service and got some great filet mignon, got such a wonderful view of the hollywood hills from my room i did not even close the curtains to sleep, enjoyed the limo, all the people were really really and i mean really nice there. Dr. Phil was very kind and spoke to me after the show, letting me know i was not " weird " or even a " little whacked " so to please not think that. I think he got the " stress response " ideal from the fact that they ask tons of questions about your life and he knew I worked 60 hours a week, homeschooled 4 kids, etc etc etc..... and indeed the response is WORSE when I am stressed. So, if I could go again with 4S being the main topic of the day.... I would jump on it. Plus possibly get to meet some of you guys and go for a swim at the hotel... oh yeah... sounds super!

Welllll i would most definitely go on dr. phil. I dont watch that show, but if they were willing to inform people about 4s, they should also show that it effects ALL ages. At least from the young teens, me!, to older people. And that it never goes away.

>

> Subject: Re: letter rewritten for Dr. Phil

> To: Soundsensitivity

> Date: Monday, July 7, 2008, 8:23 PM

> That is a facking go od letter, . Brava! Send it away

> and let's all hope it kicks some ass.

>

> I wouldn't want to go on Dr. Phil unless I was paid for

> the time away from work, though, and even then I'd

> hesitate. The man talks a lot, but he doesn't say much,

> and I'm not sure how well I'd keep my disrespect

> reined in. (And my mother thinks he's great, go

> figure.)

>

> I wrote to Oprah instead.

>

>

> = M-F.

>

>

> ----- Original Message -----

> >

>

> >I have heard your requests, and though I was miffed

> with Dr. Phil for

> > the way he treated Joan, one of our own here, when she

> appeared on

> > his show, I decided to edit my letter and send it to

> his show as

> > well. Here it is again, with the changes toward the

> end (after the

> > line of asterisks ****).

> >

> > I hope I am right in that some of you might be

> interested/willing to

> > go on to his show and talk about 4S. I know I would

> do it, but it

> > would mean alot if more of us could go on together.

> >

> >

-- Joan V.My Blog: http://www.xanga.com/hbasedmomof6Legitimate Jobs From Homehttp://wahparents.blogspot.com/

Read about My Parenting Paradigm Shifthttp://www.freewebs.com/suffer-the-little-children/

[Guest guest]

Joan I just wanted to say that when I saw you on the show that day, well, I cried...I can't really describe how I felt..it was, I guess, surreal...I felt like it was someone talking about me...I was relieved because I knew I wasn't the only one who had this "thing", I had such a rush of emotions...honestly for me it was you that made me feel like I wasn't alone in this battle I was fighting everyday...I thank you for that...

> From: Multi-Facets Wolfu-chan <wolfuchan@earthlink .net>> Subject: Re: letter rewritten for Dr. Phil> To: Soundsensitivity@ yahoogroups. com> Date: Monday, July 7, 2008, 8:23 PM> That is a facking go od letter, . Brava! Send it away

> and let's all hope it kicks some ass.> > I wouldn't want to go on Dr. Phil unless I was paid for> the time away from work, though, and even then I'd> hesitate. The man talks a lot, but he doesn't say much,> and I'm not sure how well I'd keep my disrespect> reined in. (And my mother thinks he's great, go> figure.)> > I wrote to Oprah instead.> > > = M-F.> > > ----- Original Message ----- > >From: "" <logotiqueyahoo (DOT) com>> > >I have heard your requests, and though I was miffed> with Dr. Phil for > > the way he treated Joan, one of our own here, when she> appeared on > > his show, I decided to edit my letter and send it to> his show as > > well. Here it is again, with

the changes toward the> end (after the > > line of asterisks ****).> > > > I hope I am right in that some of you might be> interested/willing to > > go on to his show and talk about 4S. I know I would> do it, but it > > would mean alot if more of us could go on together.> > > > -- Joan V.My Blog: http://www.xanga. com/hbasedmomof6Legitimate Jobs From Homehttp://wahparents. blogspot. com/Read about My Parenting Paradigm Shifthttp://www.freewebs .com/suffer- the-little-

children/

[Guest guest]

... you are so welcome. That is how I felt when I started reading the Dr Phil boards and then finding this list after the show and finding out how many people have this issue. There is strength in numbers and hopefully we will all be able to get answers.

Joan I just wanted to say that when I saw you on the show that day, well, I cried...I can't really describe how I felt..it was, I guess, surreal...I felt like it was someone talking about me...I was relieved because I knew I wasn't the only one who had this " thing " , I had such a rush of emotions...honestly for me it was you that made me feel like I wasn't alone in this battle I was fighting everyday...I thank you for that...

> From: Multi-Facets Wolfu-chan <wolfuchan@earthlink .net>

> Subject: Re: letter rewritten for Dr. Phil> To: Soundsensitivity@ yahoogroups. com> Date: Monday, July 7, 2008, 8:23 PM

> That is a facking go od letter, . Brava! Send it away

> and let's all hope it kicks some ass.> > I wouldn't want to go on Dr. Phil unless I was paid for> the time away from work, though, and even then I'd> hesitate. The man talks a lot, but he doesn't say much,

> and I'm not sure how well I'd keep my disrespect> reined in. (And my mother thinks he's great, go> figure.)> > I wrote to Oprah instead.> > > = M-F.>

> > ----- Original Message ----- > >From: " " <logotiqueyahoo (DOT) com>> > >I have heard your requests, and though I was miffed

> with Dr. Phil for > > the way he treated Joan, one of our own here, when she> appeared on > > his show, I decided to edit my letter and send it to> his show as > > well. Here it is again, with

the changes toward the> end (after the > > line of asterisks ****).> > > > I hope I am right in that some of you might be> interested/willing to > > go on to his show and talk about 4S. I know I would

> do it, but it > > would mean alot if more of us could go on together.> > > >

-- Joan V.My Blog: http://www.xanga. com/hbasedmomof6Legitimate Jobs From Homehttp://wahparents. blogspot. com/

Read about My Parenting Paradigm Shifthttp://www.freewebs .com/suffer- the-little-

children/

-- Joan V.My Blog: http://www.xanga.com/hbasedmomof6Legitimate Jobs From Homehttp://wahparents.blogspot.com/

Read about My Parenting Paradigm Shifthttp://www.freewebs.com/suffer-the-little-children/

[Guest guest]

Also, when you click on the attachments from the original posting, it might take a few seconds to appear as a Word Document, so be patient.

Thanks,

Kathy

-----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of Kathy HoweSent: Monday, July 07, 2008 6:34 PMTo: Soundsensitivity Subject: RE: letter rewritten for Dr. Phil

To the Group--

I sent one of 's letters to the NIH Rare Diseases department and I got some really great information back. I am attaching the documents they sent to me about getting a study going. We all have to do this!! It might take some effort to get a physician to back us with a referral and letter, but the more people who send it the more they will realize how serious this is. Plus, they will have plenty of people to conduct the study which has to be enticing for them.

Let me know what you think.

Kathy

..

[Guest guest]

Sounds great to me too!!! I would volunteer for that!joanrenae wrote: Heck, i would go again in a heartbeat. Even though he did not help my 4s nor seemingly do his homework (because he was focused on the main topic which was etiquette) I stayed at the Renaissance Hollywood Hotel, had $100 to spend on room service and got some great filet mignon, got such a wonderful view of the hollywood hills from my room i did not even close the curtains to sleep, enjoyed the limo, all the people were really really and

i mean really nice there. Dr. Phil was very kind and spoke to me after the show, letting me know i was not "weird" or even a "little whacked" so to please not think that. I think he got the "stress response" ideal from the fact that they ask tons of questions about your life and he knew I worked 60 hours a week, homeschooled 4 kids, etc etc etc..... and indeed the response is WORSE when I am stressed. So, if I could go again with 4S being the main topic of the day.... I would jump on it. Plus possibly get to meet some of you guys and go for a swim at the hotel... oh yeah... sounds super! On Mon, Jul 7, 2008 at 10:45 PM, Tatum Vecchio <veggietater89> wrote: Welllll i would most definitely go

on dr. phil. I dont watch that show, but if they were willing to inform people about 4s, they should also show that it effects ALL ages. At least from the young teens, me!, to older people. And that it never goes away. > From: Multi-Facets Wolfu-chan <wolfuchanearthlink (DOT) net>> Subject: Re: letter rewritten for Dr. Phil> To: Soundsensitivity > Date: Monday, July 7, 2008, 8:23 PM> That is a facking go od letter, . Brava! Send it away > and let's all hope it kicks some ass.> > I wouldn't want to go on Dr. Phil unless I was paid

for> the time away from work, though, and even then I'd> hesitate. The man talks a lot, but he doesn't say much,> and I'm not sure how well I'd keep my disrespect> reined in. (And my mother thinks he's great, go> figure.)> > I wrote to Oprah instead.> > > = M-F.> > > ----- Original Message ----- > >From: "" <logotique>> > >I have heard your requests, and though I was miffed> with Dr. Phil for > > the way he treated Joan, one of our own here, when she> appeared on > > his show, I decided to edit my letter and send it to> his show as > > well. Here it is again, with the changes toward the> end (after the > > line of asterisks ****).> > > > I hope I am right in that some of you might

be> interested/willing to > > go on to his show and talk about 4S. I know I would> do it, but it > > would mean alot if more of us could go on together.> > > > -- Joan V.My Blog: http://www.xanga.com/hbasedmomof6Legitimate Jobs From Homehttp://wahparents.blogspot.com/Read about My Parenting Paradigm Shifthttp://www.freewebs.com/suffer-the-little-children/

[Guest guest]

Kathy can you re post the attachmentns from the NIH? I cannot go back

and open them!!

>

> To the Group--

>

> I sent one of 's letters to the NIH Rare Diseases department

and I got

> some really great information back. I am attaching the documents

they sent

> to me about getting a study going. We all have to do this!! It

might take

> some effort to get a physician to back us with a referral and

letter, but

> the more people who send it the more they will realize how serious

this is.

> Plus, they will have plenty of people to conduct the study which

has to be

> enticing for them.

>

> Let me know what you think.

>

> Kathy

>

>

>

> Recent Activity

> a.. 11New Members

> Visit Your Group

> Meditation and

> Lovingkindness

>

> A Yahoo! Group

>

> to share and learn.

>

> Yahoo! Health

> Early Detection

>

> Know the symptoms

>

> of breast cancer.

>

> New web site?

> Drive traffic now.

>

> Get your business

>

> on Yahoo! search.

> .

>