RE: Faces of Sarc video link

[Guest guest]

I made the second picture does that mean I'm a runner up for Mrs. Sarcoid of America:) just kidding, it was good, but your right it was too fast, hard to read. I really  didn't know any other faces.

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

FSR (Foundation for Sarcoidosis Research) has published the Faces of Sarcoidosis video.  They didn't use my photo } but maybe or Marla is in it.  I don't know if anyone else sent in their photo.  I like the video a lot, although I wish they would have allowed a little more time to read the statements.  Anyway, check it out on YouTube at: 

Ramblin' RoseModerator

 COLTS STILL ROCK!   (But Packers rule the world.  Sigh. . . .) 

[Guest guest]

Marla, cool! I didn't recognize you! You are a YouTube star now!

Ramblin' RoseModerator COLTS STILL ROCK! (But Packers rule the world. Sigh. . . .)

To: Neurosarcoidosis From: mebramer@...Date: Thu, 10 Feb 2011 10:06:10 -0700Subject: Re: Faces of Sarc video link

I made the second picture does that mean I'm a runner up for Mrs. Sarcoid of America:) just kidding, it was good, but your right it was too fast, hard to read. I really didn't know any other faces. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

[Guest guest]

I know my face is fuller/wide now, I didn't realize they were going to put it on You Tube, but they did ask for permission to post it publicly, so I guess that's it, I just hope it can raise some money for research, we do need that, and ending it with Bernie Mac, great idea. I know his wife has been really trying to get the word out there too.

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

Marla, cool!  I didn't recognize you!  You are a YouTube star now!

Ramblin' RoseModerator

 COLTS STILL ROCK!   (But Packers rule the world.  Sigh. . . .) 

 

To: Neurosarcoidosis From: mebramer@...Date: Thu, 10 Feb 2011 10:06:10 -0700

Subject: Re: Faces of Sarc video link

I made the second picture does that mean I'm a runner up for Mrs. Sarcoid of America:) just kidding, it was good, but your right it was too fast, hard to read. I really  didn't know any other faces.

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

[Guest guest]

Nope they didn't use jenny's either, but I think the video was done well. It needs to go out to more & more people and maybe even as a national campaign. Way too many people don't even know it exists. Matt

[Guest guest]

Hey cool. I just looked at the video and i am on there as well. That was a nice video.

To: Neurosarcoidosis Sent: Thu, February 10, 2011 12:06:10 PMSubject: Re: Faces of Sarc video link

I made the second picture does that mean I'm a runner up for Mrs. Sarcoid of America:) just kidding, it was good, but your right it was too fast, hard to read. I really didn't know any other faces. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

FSR (Foundation for Sarcoidosis Research) has published the Faces of Sarcoidosis video. They didn't use my photo } but maybe or Marla is in it. I don't know if anyone else sent in their photo. I like the video a lot, although I wish they would have allowed a little more time to read the statements. Anyway, check it out on YouTube at:

Ramblin' RoseModerator COLTS STILL ROCK! (But Packers rule the world. Sigh. . . .)

[Guest guest]

I sent a message to one of the staffers at FSR that I met in Chicago; mentioned the difficulty reading the script and she said she would pass it along to someone in that department for future reference. Other than that, I thought it was beautifully done.

Ramblin' RoseModerator COLTS STILL ROCK! (But Packers rule the world. Sigh. . . .)

To: Neurosarcoidosis From: mebramer@...Date: Thu, 10 Feb 2011 16:48:29 -0700Subject: Re: Faces of Sarc video link

I know my face is fuller/wide now, I didn't realize they were going to put it on You Tube, but they did ask for permission to post it publicly, so I guess that's it, I just hope it can raise some money for research, we do need that, and ending it with Bernie Mac, great idea. I know his wife has been really trying to get the word out there too. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

Marla, cool! I didn't recognize you! You are a YouTube star now!

Ramblin' RoseModerator COLTS STILL ROCK! (But Packers rule the world. Sigh. . . .)

To: Neurosarcoidosis From: mebramer@...Date: Thu, 10 Feb 2011 10:06:10 -0700Subject: Re: Faces of Sarc video linkI made the second picture does that mean I'm a runner up for Mrs. Sarcoid of America:) just kidding, it was good, but your right it was too fast, hard to read. I really didn't know any other faces. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

[Guest guest]

Hey, La, where are you in the video? I guess we did pretty good--2 for 4. As far as I know, you, Marla, & I were the only ones from the group to submit photos. They said they received many more than they anticipated. I recognized Robbie Darden on there also; she heads the Central Indiana Sarc Support Group & organizes the retreat/conference in the fall. Those are now going to be every other year; it was just too hard to put it on every year. They do a fantastic job. For the newbies, check out the CISSG album in our Photos section.

Ramblin' RoseModerator COLTS STILL ROCK! (But Packers rule the world. Sigh. . . .)

To: Neurosarcoidosis From: ladyt19119@...Date: Thu, 10 Feb 2011 19:51:35 -0800Subject: Re: Faces of Sarc video link

Hey cool. I just looked at the video and i am on there as well. That was a nice video.

To: Neurosarcoidosis Sent: Thu, February 10, 2011 12:06:10 PMSubject: Re: Faces of Sarc video link

I made the second picture does that mean I'm a runner up for Mrs. Sarcoid of America:) just kidding, it was good, but your right it was too fast, hard to read. I really didn't know any other faces. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

FSR (Foundation for Sarcoidosis Research) has published the Faces of Sarcoidosis video. They didn't use my photo } but maybe or Marla is in it. I don't know if anyone else sent in their photo. I like the video a lot, although I wish they would have allowed a little more time to read the statements. Anyway, check it out on YouTube at:

Ramblin' RoseModerator COLTS STILL ROCK! (But Packers rule the world. Sigh. . . .)

[Guest guest]

I've put it on my Facebook profile & asked everyone I know to check it out. If they aren't on FB, I tell them to just go to YouTube & search Faces of Sarcoidosis.

Ramblin' RoseModerator COLTS STILL ROCK! (But Packers rule the world. Sigh. . . .)

To: Neurosarcoidosis From: dmatt1960@...Date: Thu, 10 Feb 2011 15:55:47 -0800Subject: Re: Faces of Sarc video link

Nope they didn't use jenny's either, but I think the video was done well. It needs to go out to more & more people and maybe even as a national campaign. Way too many people don't even know it exists. Matt

[Guest guest]

I did the same thing. Received some positive feedback.

It's here! Your new message!Get

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[Guest guest]

Hey there Rose. I am in the part where they mention the eyes and the brain. I am one of four pics ont he page. Its a black and white photo on the bottom left.

FSR (Foundation for Sarcoidosis Research) has published the Faces of Sarcoidosis video. They didn't use my photo } but maybe or Marla is in it. I don't know if anyone else sent in their photo. I like the video a lot, although I wish they would have allowed a little more time to read the statements. Anyway, check it out on YouTube at:

Ramblin' RoseModerator COLTS STILL ROCK! (But Packers rule the world. Sigh. . . .)

[Guest guest]

This is tru Matt. I hope is doing okay. I put the video on m,y facebook page and received some responses.

[Guest guest]

Me too, also got some positive feed back, My brother even wrote back and said I had no idea Sarcoid hit so many people and so many body systems. I think it's good to educate people on what we do go through. 

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

I did the same thing. Received some positive feedback.

It's here! Your new message!Get

new email alerts with the free Yahoo! Toolbar.

[Guest guest]

I agree. There are a few of my facebook friends that have it or have a relative that has it. I was shocked. I did not realize how many people suffer with this.

To: Neurosarcoidosis Sent: Fri, February 11, 2011 3:45:53 PMSubject: Re: Faces of Sarc video link

Me too, also got some positive feed back, My brother even wrote back and said I had no idea Sarcoid hit so many people and so many body systems. I think it's good to educate people on what we do go through. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

I did the same thing. Received some positive feedback.

It's here! Your new message!Get new email alerts with the free Yahoo! Toolbar.

[Guest guest]

La, I didn't see any slides with 4 pics. There was a sepia-colored pic on a brain slide (that doesn't sound quite right, does it?!?); do you have braids?

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: ladyt19119@...Date: Fri, 11 Feb 2011 11:52:09 -0800Subject: RE: Faces of Sarc video link

Hey there Rose. I am in the part where they mention the eyes and the brain. I am one of four pics ont he page. Its a black and white photo on the bottom left.

[Guest guest]

Yes that was me. Before my brain surgery I had locs down my back. Of course they are all gone now.

To: neurosarcoidosis Sent: Fri, February 11, 2011 10:59:25 PMSubject: RE: Faces of Sarc video link

La, I didn't see any slides with 4 pics. There was a sepia-colored pic on a brain slide (that doesn't sound quite right, does it?!?); do you have braids?

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: ladyt19119@...Date: Fri, 11 Feb 2011 11:52:09 -0800Subject: RE: Faces of Sarc video link

Hey there Rose. I am in the part where they mention the eyes and the brain. I am one of four pics ont he page. Its a black and white photo on the bottom left.

The fish are biting.

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[Guest guest]

You should be proud. I think the video was awesome. It said things that I never had the words for and gives me a link to refer people to when they ask What is Sarcoidosis or say "Your looking great". That last one always bothered me so much and I thought I was being silly or sound like I was complaining about how I was feeling (which I try not to do except on this board to people who know). It made me cry to watch it and see all those people who "KNOW" and are helping explain.

Great job to all those involved and to whoever put it up here first,

Mitch

RE: Faces of Sarc video link

Hey there Rose. I am in the part where they mention the eyes and the brain. I am one of four pics ont he page. Its a black and white photo on the bottom left.

The fish are biting.

Get more visitors on your site using Yahoo! Search Marketing.