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Shelley Ensz

Breaking News: Scleroderma on TV!

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Scleroderma will be covered as a topic within the following CNN news programs in the coming week.

 

The ISN participated in the program development by providing video and photography from Sclero Forums members! In particular, Sclero Forums member Doris Razo made several videos, and many forum members submitted symptom photos.

 

We have no idea how much ended up in the program, or on the cutting room floor, of course. The program coverage is not about the ISN or Sclero Forums -- but it IS about scleroderma and will thus help raise awareness for all of us. Here is the program schedule:

 

CNN USA

 

THURSDAY 9-10P/12-1A (10/23/08)

FRIDAY 8-9A, 11A-12P, 3-4P (10/24/08)

SATURDAY 11-12A, 3-4P, 5-6P, 10-11P/1-2A (10/25/08)

 

HEADLINE NEWS

FRIDAY 7:30-8A, 2:30-3P, 5-6P, 8-9P/10-11P/1-2A (10/24/08)

SATURDAY 8-8:30A, 2-2:30P (10/25/08)

 

CNN INTERNATIONAL

FRIDAY 2A, 7A, 12P, 8P (10/25/08)

 

CNN en ESPANOL (airs the week following the LKL premiere)

Monday (10/27/08)

- Premiere in Panorama Mundial 9pm EST

Tuesday (10/28/08)

- Al Dia 7am

- Nuestro Mundo 2pm

- Encuentro 6pm

- Directo 7pm

Sunday (11/02/08)

- Mirador Mundial 7pm


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Shelly - I am a little confused - are these programs on CNN all the same or is each one different? Same question applies to Headline news. This is very exciting!

Thanks. -Ann

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Shelley,

 

Thank you :) I'll be sure to tune in. Are the times central or eastern? Thank you. Take care!

 

Anne


Diffuse Systemic Sclerosis, (Scleroderma). Lung, skin and gastrointestinal involvement.

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Hi Ann and Anne,

 

I'm not certain how much different the programs will be. Nor do I know what time zones were listed. Please check your local TV listings for more information.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Doris, I saw you on CNN!

 

It is listed under "Heroes" on the Larry King website, where Dana Delany nominates Luke Evnin as her hero for his work in scleroderma.

 

You'll see Doris in a brief video clip of her face and hands. Here is the Heroes link:

 

http://www.cnn.com/video/#/video/living/2008/10/23/heroes.delany.evnin.cnn ://http://www.cnn.com/video/#/video/li...lany.evnin.cnn ://http://www.cnn.com/video/#/video/li...lany.evnin.cnn

 

And here is the link to Doris' ISN You Tube Video, too:

http://www.youtube.com/scleroforums


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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I just watched it -- the first time there was a problem with the buffering and it started and stopped, but once it played through, subsequent viewings had no problem. Very interesting.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Shelley!

 

I saw it too! It was a brief 2, maybe 3 sec. but at least my hands got in there. Wow can't beat that 3 seconds of fame! I was curious what the segment was about and how the tapes would get used. I'm glad we did the Youtube video. It was well worth it.

 

Hugs,

Razz


Live well, Laugh often, Love much

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Hi Razz,

 

So now are you going to get a t-shirt that says, "As seen on CNN?" Very few people get even 2-3 seconds on CNN. You did absolutely fabulous! And I'm very glad we have your ISN video, for people to get a more indepth view. This is just so cool...and such great awareness raising for scleroderma, on top of it. ;)


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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It's a great start...to help inform the public.

 

Thanks for posting the link, Shelley. I'm looking forward to watching CNN and what they'll have.

 

razz, I'm with Shelley on this... A t-shirt for you: As Seen On CNN...sounds like a great idea for you :)

 

Hugs,

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Shelley,

 

I think I will have a t-shirt made that says "As seen on CNN". You have a great idea here! I'm all for continuing to get the message out and bringing awareness to scleroderma. I also like how you posted the youtube link on the home page. Real cool!

 

Susie,

 

Thanks, I hope we get more future media publicity. I can wear my t-shirt at every scleroderma function. I know there's a health fair coming up in Chicago this winter where they have a scleroderma booth. I better get ready!

 

Hugs,

Razz

 

:D


Live well, Laugh often, Love much

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Hi Everyone

I've been watching CNN to see if I can catch the Scleroderma story and finally I saw something mentioned on the scroll beneath the news screen but didn't catch the time of the show, so.....I went online to see what I could find.

 

I was going to give the link, but I see Shelley has already posted it above. It's a great story.

 

Also still not able to eat much solid food - for someone like me who loves to eat, it's a bummer.

 

Have a good weekend ~

Annie N

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I haven't been able to catch the segment on CNN, but I will go to CNN's wesite. I'm glad that you sent video in Razz. I'll look at the You Tube footage as well!


I may have Scleroderma, but Scleroderma doesn't have me!

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