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RE: Mention on Oprah

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Hi all. I was watching Oprah yesterday and they had the cast on from Grey's Anatomy. One of the cast members who plays a doctors mentioned his mother in real life sufferered from a lung disease called sarcoidosis for 6 years. He described how much she suffered with it and how he couldn't bear to watch her in the hospital. I know its rarely mentioned it all publicly and thought you would like to know how he brought it up. Debbie

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So, Debbie, how do we get Oprah to do a show on sarc, especially NS?

Ramblin' Rose

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Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: Mention on OprahDate: Sat, 27 May 2006 05:16:09 -0700 (PDT)Hi all. I was watching Oprah yesterday and they had the cast on from Grey's Anatomy. One of the cast members who plays a doctors mentioned his mother in real life sufferered from a lung disease called sarcoidosis for 6 years. He described how much she suffered with it and how he couldn't bear to watch her in the hospital. I know its rarely mentioned it all publicly and thought you would like to know how he brought it up. Debbie

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

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Would be awesome if we could get

this person to start talking more about Sarcoid on his mother’s behalf,

then maybe there could be some money raised for testing of drugs, etc..  

I will pray about it, do you remember

which actor it is?

Marla

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On Behalf Of Debbie

Sent: Saturday, May 27, 2006 6:16 AM

To: Neurosarcoidosis

Subject: RE: Mention on Oprah

Hi all. I was watching Oprah yesterday and

they had the cast on from Grey's Anatomy. One of the cast members who

plays a doctors mentioned his mother in real life sufferered from a lung

disease called sarcoidosis for 6 years. He described how much she

suffered with it and how he couldn't bear to watch her in the hospital. I

know its rarely mentioned it all publicly and thought you would like to know

how he brought it up.

Debbie

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1¢/min. Make PC-to-Phone

Calls using Yahoo! Messenger with Voice.

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

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Oh! Wouldn't that be cool? SO cool! And maybe that would be a way for some of us to meet in person! I like your thinking, Rose! :)Rose wrote: So, Debbie, how do we get Oprah to do a show on sarc, especially NS? Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: Mention on OprahDate: Sat, 27 May 2006 05:16:09 -0700 (PDT)Hi all. I was watching Oprah yesterday and they had the cast on from Grey's Anatomy. One of the cast members who plays a doctors mentioned his mother in real life sufferered from a lung disease called sarcoidosis for 6 years. He described how much she suffered with it and how he couldn't bear to watch her in the hospital. I know its rarely mentioned it all publicly and thought you would like to know how he brought it up.

Debbie Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone

numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

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Oh! Wouldn't that be cool? SO cool! And maybe that would be a way for some of us to meet in person! I like your thinking, Rose! :)Rose wrote: So, Debbie, how do we get Oprah to do a show on sarc, especially NS? Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: Mention on OprahDate: Sat, 27 May 2006 05:16:09 -0700 (PDT)Hi all. I was watching Oprah yesterday and they had the cast on from Grey's Anatomy. One of the cast members who plays a doctors mentioned his mother in real life sufferered from a lung disease called sarcoidosis for 6 years. He described how much she suffered with it and how he couldn't bear to watch her in the hospital. I know its rarely mentioned it all publicly and thought you would like to know how he brought it up.

Debbie Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone

numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

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That would be so great!! I am sure there is an address to write to

Oprah. My daughter is good at finding those kinds of things so I

will ask her. If we each wrote her a letter perhaps we get noticed

and the more we get in the news the better!!!! Maybe we can get

Oprah to get our Ologist(s) to listen to us!!!

TTFN

Ruth

> So, Debbie, how do we get Oprah to do a show on sarc,

especially NS?

>

> Ramblin' Rose

> Moderator

>

>

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

> From: Debbie

> Reply-To: Neurosarcoidosis

> To: Neurosarcoidosis

> Subject: RE: Mention on Oprah

> Date: Sat, 27 May 2006 05:16:09 -0700 (PDT)

>

> Hi all. I was watching Oprah yesterday and they had the cast on

from Grey's Anatomy. One of the cast members who plays a doctors

mentioned his mother in real life sufferered from a lung disease

called sarcoidosis for 6 years. He described how much she suffered

with it and how he couldn't bear to watch her in the hospital. I

know its rarely mentioned it all publicly and thought you would like

to know how he brought it up.

>

Debbie

>

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

> Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using

Yahoo! Messenger with Voice.

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- Has been cancelled for now.

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

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Oprah's website has a place to write if you are interested in being on the show. But I was thinking that Montel might be a better shot, since he has MS.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Mention on OprahDate: Sun, 28 May 2006 03:37:05 -0000That would be so great!! I am sure there is an address to write to Oprah. My daughter is good at finding those kinds of things so I will ask her. If we each wrote her a letter perhaps we get noticed and the more we get in the news the better!!!! Maybe we can get Oprah to get our Ologist(s) to listen to us!!!TTFNRuth> So, Debbie, how do we get Oprah to do a show on sarc, especially NS?> > Ramblin' Rose> Moderator> > > ---------------------------------> > Reply-To: Neurosarcoidosis > To: Neurosarcoidosis > Subject: RE: Mention on Oprah> Date: Sat, 27 May 2006 05:16:09 -0700 (PDT)> > Hi all. I was watching Oprah yesterday and they had the cast on from Grey's Anatomy. One of the cast members who plays a doctors mentioned his mother in real life sufferered from a lung disease called sarcoidosis for 6 years. He described how much she suffered with it and how he couldn't bear to watch her in the hospital. I know its rarely mentioned it all publicly and thought you would like to know how he brought it up. > Debbie> > ---------------------------------> Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > NS CHAT:- Has been cancelled for now.> > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

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Oprah's website has a place to write if you are interested in being on the show. But I was thinking that Montel might be a better shot, since he has MS.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Mention on OprahDate: Sun, 28 May 2006 03:37:05 -0000That would be so great!! I am sure there is an address to write to Oprah. My daughter is good at finding those kinds of things so I will ask her. If we each wrote her a letter perhaps we get noticed and the more we get in the news the better!!!! Maybe we can get Oprah to get our Ologist(s) to listen to us!!!TTFNRuth> So, Debbie, how do we get Oprah to do a show on sarc, especially NS?> > Ramblin' Rose> Moderator> > > ---------------------------------> > Reply-To: Neurosarcoidosis > To: Neurosarcoidosis > Subject: RE: Mention on Oprah> Date: Sat, 27 May 2006 05:16:09 -0700 (PDT)> > Hi all. I was watching Oprah yesterday and they had the cast on from Grey's Anatomy. One of the cast members who plays a doctors mentioned his mother in real life sufferered from a lung disease called sarcoidosis for 6 years. He described how much she suffered with it and how he couldn't bear to watch her in the hospital. I know its rarely mentioned it all publicly and thought you would like to know how he brought it up. > Debbie> > ---------------------------------> Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > NS CHAT:- Has been cancelled for now.> > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

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Why not try Montel. He is an MS sufferer and is always having people on

with illness. Go to his website and write to him. See what happens.

Just an idea.

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Why not try Montel. He is an MS sufferer and is always having people on

with illness. Go to his website and write to him. See what happens.

Just an idea.

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Well, thanks for trying, . I think one of the problems is that Montel, Dr. Phil, etc. don't read all of the requests because they get thousands of them. So staff people screen them & pass on the ones they think are interesting, whatever. Maybe they read neurosarcoidosis & go "Huh. Can't even pronounce this. Pitch it."

Anybody have ideas on how to get past the screeners (I think it's probably almost as difficult as getting past the receptionists in the doctors' offices!)

Ramblin' Rose

Moderator

From: anci3ntgoddess@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Mention on OprahDate: Mon, 29 May 2006 12:47:07 EDT

I have Emailed Montel 7 Times now to get me or someone on Regards to NS and never got any responce..

Trust me i have search my little heart out to find SOMEONE to help us..

in Pa~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

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Thank you for your efforts, I too have contacted Montel and Oprah in hte past without any response.anci3ntgoddess@... wrote: I have Emailed Montel 7 Times now to get me or someone on Regards to NS and never got any responce.. Trust me i have search my little heart out to find SOMEONE to help us.. in PaNOTICE: This electronic mail transmission is not intended for

transmission to, or receipt by, any unauthorized persons. If you have received this electronic mail transmission in error, please delete it from your system without copying it, and notify the sender by reply e-mail.

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Thank you for your efforts, I too have contacted Montel and Oprah in hte past without any response.anci3ntgoddess@... wrote: I have Emailed Montel 7 Times now to get me or someone on Regards to NS and never got any responce.. Trust me i have search my little heart out to find SOMEONE to help us.. in PaNOTICE: This electronic mail transmission is not intended for

transmission to, or receipt by, any unauthorized persons. If you have received this electronic mail transmission in error, please delete it from your system without copying it, and notify the sender by reply e-mail.

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You know, I can't help but wonder - since their emails are so full with requests such as ours, do you think it may be more effective if we each sent these talk show hosts videotapes of ourselves sharing our experiences? Oprah seems to be someone who is very moved by what she sees. Maybe she and Montel and all the others need to see us in the varous stages of NS - to learn how it has impacted our lives. Maybe even a group video - you know, each of us records a small amount of time to tell our story and let them see just how difficult this is, then we forward it on to the next person and so forth until we have a few really full tapes to send together. Not that they don't get tapes - I'm sure they get tons of those, too... I don't know. Unfortunately, again, Boy Wonder's words conveying that this is not a "cash cow" disease for the pharmaceutical companies keeps ringing true. But I think you're

all right - if we get more exposure, maybe someone will do something. We need to figure out how to really get their attention. A full page ad in their local newspapers directly addressing the talk show hosts asking them to pay attention, perhaps??? It would get people talking, that's for sure! :) Jeannie Claude Manzanares wrote: Thank you for your efforts, I too have contacted Montel and Oprah in hte past without any response.anci3ntgoddess@... wrote: I have Emailed Montel 7 Times now

to get me or someone on Regards to NS and never got any responce.. Trust me i have search my little heart out to find SOMEONE to help us.. in PaNOTICE: This electronic mail transmission is not intended for transmission to, or receipt by, any unauthorized persons. If you have received this electronic mail transmission in error, please delete it from your system without copying it, and notify the sender by reply e-mail. Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

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You know, I can't help but wonder - since their emails are so full with requests such as ours, do you think it may be more effective if we each sent these talk show hosts videotapes of ourselves sharing our experiences? Oprah seems to be someone who is very moved by what she sees. Maybe she and Montel and all the others need to see us in the varous stages of NS - to learn how it has impacted our lives. Maybe even a group video - you know, each of us records a small amount of time to tell our story and let them see just how difficult this is, then we forward it on to the next person and so forth until we have a few really full tapes to send together. Not that they don't get tapes - I'm sure they get tons of those, too... I don't know. Unfortunately, again, Boy Wonder's words conveying that this is not a "cash cow" disease for the pharmaceutical companies keeps ringing true. But I think you're

all right - if we get more exposure, maybe someone will do something. We need to figure out how to really get their attention. A full page ad in their local newspapers directly addressing the talk show hosts asking them to pay attention, perhaps??? It would get people talking, that's for sure! :) Jeannie Claude Manzanares wrote: Thank you for your efforts, I too have contacted Montel and Oprah in hte past without any response.anci3ntgoddess@... wrote: I have Emailed Montel 7 Times now

to get me or someone on Regards to NS and never got any responce.. Trust me i have search my little heart out to find SOMEONE to help us.. in PaNOTICE: This electronic mail transmission is not intended for transmission to, or receipt by, any unauthorized persons. If you have received this electronic mail transmission in error, please delete it from your system without copying it, and notify the sender by reply e-mail. Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

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All sounds like good ideas to me!! What if we all sent letter and

emails to them and mailed them on the same day. Granted they would

not arrive on exactly the same day but they'd get a few hundred

letters in the same time frame. I was just an idea I had....Ruth

I have Emailed Montel 7 Times now

to get me or someone on Regards to NS and never got any responce..

>

> Trust me i have search my little heart out to find SOMEONE to

help us..

>

> in Pa

>

>

>

> NOTICE: This electronic mail transmission is not intended for

transmission to, or receipt by, any unauthorized persons. If you

have received this electronic mail transmission in error, please

delete it from your system without copying it, and notify the sender

by reply e-mail.

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

> Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US

(and 30+ countries) for 2¢/min or less.

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- Has been cancelled for now.

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

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Rose, I was thinking the same thing, and I've been kind of surprised that he has never done a show on sarc....Hey, might be worth a try///ConnieRose wrote: Oprah's website has a place to write if you are interested in being on the show. But I was thinking that Montel might be a better shot, since he has MS. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Mention on OprahDate: Sun, 28 May 2006 03:37:05 -0000That would be so great!! I am sure there is an address to write to Oprah. My daughter is good at finding those kinds of things so I will ask her. If we each wrote her a letter perhaps we get noticed and the more we get in the news the better!!!! Maybe we can get Oprah to get our Ologist(s) to listen to us!!!TTFNRuth> So, Debbie, how do we get Oprah to do a show on sarc, especially NS?> > Ramblin' Rose> Moderator> > > ---------------------------------> > Reply-To: Neurosarcoidosis > To: Neurosarcoidosis > Subject: RE: Mention on Oprah> Date: Sat, 27 May 2006 05:16:09 -0700 (PDT)> > Hi all. I was watching Oprah yesterday and they had the cast on from Grey's Anatomy. One of the cast members who plays a doctors mentioned his mother in real life sufferered from a lung disease called sarcoidosis for 6 years. He described how much she

suffered with it and how he couldn't bear to watch her in the hospital. I know its rarely mentioned it all publicly and thought you would like to know how he brought it up. > Debbie> > ---------------------------------> Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > NS CHAT:- Has been cancelled for now.> > Message

Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

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That's an excellent idea, Ruth! :)olehomepla wrote: All sounds like good ideas to me!! What if we all sent letter and emails to them and mailed them on the same day. Granted they would not arrive on exactly the same day but they'd get a few hundred letters in the same time frame. I was just an idea I had....Ruth I have Emailed Montel 7 Times now to get me or someone on Regards to NS and never got any responce.. > > Trust me i have search my little heart out to find SOMEONE to help us.. > > in Pa> > > > NOTICE: This electronic mail transmission is not intended for transmission to, or receipt by, any unauthorized persons. If you have received this electronic mail transmission in error, please delete it from your system without

copying it, and notify the sender by reply e-mail. > ---------------------------------> Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > NS CHAT:- Has been cancelled for now.> > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

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Hi Connie, Theresa had posted this earlier. I had forgot his name . She was lucky enough to get his picture and everything. This is the guy that said his mother had Sarcoidosis. World-class cardiothoracic surgeon Dr. Preston Burke, played by Isaiah Washington, is the star of cliffhanger number two. After undergoing a dangerous operation to remove a bullet lodged in his spine, Dr. Burke makes it out alive, but his fate as a surgeon is still unknown. His once steady hand is shaking, and it's unclear whether he will ever regain full use of his

arm.Connie Griffis wrote: Debbie, do you remember which cast member. I wish we had someone talking about sarc like J Foxx does parkinsons. It would certainly help///ConnieDebbie wrote: Hi all. I was watching Oprah yesterday and they had the cast on from Grey's Anatomy. One of the cast members who plays a doctors mentioned his mother in real life sufferered from a lung disease called sarcoidosis for 6 years. He described how much she suffered with it and how he couldn't bear to watch her in the hospital. I know its rarely mentioned it all publicly and thought you

would like to know how he brought it up. Debbie Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. Feel free to call! Free PC-to-PC calls. Low rates on PC-to-Phone. Get Yahoo! Messenger with Voice __________________________________________________

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Hi Connie, Theresa had posted this earlier. I had forgot his name . She was lucky enough to get his picture and everything. This is the guy that said his mother had Sarcoidosis. World-class cardiothoracic surgeon Dr. Preston Burke, played by Isaiah Washington, is the star of cliffhanger number two. After undergoing a dangerous operation to remove a bullet lodged in his spine, Dr. Burke makes it out alive, but his fate as a surgeon is still unknown. His once steady hand is shaking, and it's unclear whether he will ever regain full use of his

arm.Connie Griffis wrote: Debbie, do you remember which cast member. I wish we had someone talking about sarc like J Foxx does parkinsons. It would certainly help///ConnieDebbie wrote: Hi all. I was watching Oprah yesterday and they had the cast on from Grey's Anatomy. One of the cast members who plays a doctors mentioned his mother in real life sufferered from a lung disease called sarcoidosis for 6 years. He described how much she suffered with it and how he couldn't bear to watch her in the hospital. I know its rarely mentioned it all publicly and thought you

would like to know how he brought it up. Debbie Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. Feel free to call! Free PC-to-PC calls. Low rates on PC-to-Phone. Get Yahoo! Messenger with Voice __________________________________________________

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