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#6986 - 02/18/07 04:46 PM Oprah is planning a show about skin!!!!
thehodgees Offline
Member

Registered: 01/29/06
Posts: 130
Loc: Woodstock, ON, Canada
Hey, everyone!
I was just cruising through the Oprah site (www.oprah.com) and it looks like they are preparing for a show about skin.
Visit this link and fill out the form...let's see if we can't get a feature about Ichthyosis!!!!
https://www.oprah.com/plugger/templates/BeOnTheShow.jhtml?action=respond&plugId=250500001
(Make sure you list an age of at least 13 years old...for Ema, age 2, I listed myself and then told her story).

Cheers!
Sarah
_________________________
***********
Craig and Sarah Hodgkinson (aka Dad and Mom to Matt and Ema)
Ema has been diagnosed with Congenital Ichtyosiform Erythroderma (CIE)

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#6987 - 02/18/07 05:14 PM Re: Oprah is planning a show about skin!!!!
marcsmom_dup1 Offline

Member

Registered: 08/12/00
Posts: 107
Loc: Wantagh, NY USA
Les just gave me the heads up! I already submitted Marc's story. I think we should all send her our stories. I can't imagine that they would ignore ALL of us!

Denise [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

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#6988 - 02/18/07 05:46 PM Re: Oprah is planning a show about skin!!!!
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
We just submitted too! I gave a link to this site and FIRST as well.

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#6989 - 02/18/07 05:56 PM Re: Oprah is planning a show about skin!!!!
skittles71 Offline
Member

Registered: 01/16/06
Posts: 283
Loc: Catawba North carolina
I just submitted my story also about my 2 boys.Lets hope this works

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#6990 - 02/18/07 06:14 PM Re: Oprah is planning a show about skin!!!!
texlex99_dup1 Offline
Member

Registered: 09/28/06
Posts: 128
Loc: Brooklyn Park, MN USA
I just submitted my story as well. Let's cross our fingers!!

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#6991 - 02/18/07 08:55 PM Re: Oprah is planning a show about skin!!!!
thehodgees Offline
Member

Registered: 01/29/06
Posts: 130
Loc: Woodstock, ON, Canada
I just emailed Jean Pickford to give her the heads up too!
Think positive...even if you've sent in your story before...try again! Try with all of us! Let's flood their inbox for Monday morning! They won't know what hit them!!!!
_________________________
***********
Craig and Sarah Hodgkinson (aka Dad and Mom to Matt and Ema)
Ema has been diagnosed with Congenital Ichtyosiform Erythroderma (CIE)

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#6992 - 02/18/07 09:45 PM Re: Oprah is planning a show about skin!!!!
graciesmom Offline
Member

Registered: 02/10/06
Posts: 155
Loc: orange park, florida,usa
I just submitted our story....hope this works!!! I'm also telling all my family to write in about Ichthyosis, the more stories the better.

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#6993 - 02/19/07 12:46 AM Re: Oprah is planning a show about skin!!!!
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
https://www.oprah.com/plugger/templates/BeOnTheShow.jhtml?action=respond&plugId=250500001

To everyone else that did not receive the Oprah Email, cut and paste this link into the search bar.

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#6994 - 02/19/07 04:23 AM Re: Oprah is planning a show about skin!!!!
Chrissie Offline
Member

Registered: 07/20/06
Posts: 122
Loc: The Gap, Brisbane, Qld Austral...
What a brilliant find!!! Thank you!

I've sent on ours and let others know.

Cheers
Chrissie

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#6995 - 02/19/07 05:12 AM Re: Oprah is planning a show about skin!!!!
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
I'll send Julia's story in tomorrow...but that link sort of sounded like they were wanting to do a make-up show or something, ya know?
_________________________
Courtney
Mom to Julia

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#6996 - 02/19/07 05:42 AM Re: Oprah is planning a show about skin!!!!
thehodgees Offline
Member

Registered: 01/29/06
Posts: 130
Loc: Woodstock, ON, Canada
Hey CShell!

You're right; that's most probably what they have intended; however, our efforts will give them something to think about- maybe now they'll include an addition to the show or maybe do a separate show, specifically devoted to skin disorders. As well, with this opportunity, I think there is a greater chance that they'll (at least) read everyone's letters.

CH
_________________________
***********
Craig and Sarah Hodgkinson (aka Dad and Mom to Matt and Ema)
Ema has been diagnosed with Congenital Ichtyosiform Erythroderma (CIE)

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#6997 - 02/19/07 10:19 AM Re: Oprah is planning a show about skin!!!!
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
This is amazing news guys...wow, haven't sent a lettere yet,still thinking about it...

Pauline

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#6998 - 02/19/07 07:14 PM Re: Oprah is planning a show about skin!!!!
Pood Offline
Member

Registered: 01/29/07
Posts: 30
Loc: LaPorte, Tx
Hey guy i just wanted to say that my mom said we have been trieing to do that for a long time but she never but i still think that you should keep trieing no matter what my mom say's good luck
_________________________
I may be a rare breed, and mostlikely the cure

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#6999 - 02/19/07 10:03 PM Re: Oprah is planning a show about skin!!!!
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Courtney, that's sure what it sounded like to me, too. More of a general beauty makeover or how to treat acne type thing. But I posted my request anyway.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#7000 - 02/19/07 10:41 PM Re: Oprah is planning a show about skin!!!!
libby Offline
Member

Registered: 02/25/05
Posts: 356
Loc: USA
I sent in my daughters bio. Hopefully if enough of us send in our stories, she will consider doing a show just on ichthyosis. It's totally worth our efforts!

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#7001 - 02/20/07 08:37 PM Re: Oprah is planning a show about skin!!!!
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
Just sent in a very condensed version of Julia's story lol
_________________________
Courtney
Mom to Julia

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#7002 - 03/06/07 08:27 PM Re: Oprah is planning a show about skin!!!!
iadoreanimals130 Offline
Member

Registered: 07/18/06
Posts: 5
Loc: marshall,NC,usa
i sent in my story!
_________________________
<3maria8}

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#7003 - 03/07/07 01:47 AM Re: Oprah is planning a show about skin!!!!
R Offline
Member

Registered: 02/20/03
Posts: 226
Oprah's a fat disgusting idiot. I don't see why anyone would want to have their skin condition exploited for the benefit of her ego.

Sorry... had to say it.

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#7004 - 03/08/07 12:06 AM Re: Oprah is planning a show about skin!!!!
marcsmom_dup1 Offline

Member

Registered: 08/12/00
Posts: 107
Loc: Wantagh, NY USA
Regardless of how you feel about Oprah, or any other talk show host for that matter, it would be WONDERFUL to raise awareness about ichthyosis.

If Oprah talked about this rare condition on her show, can you imagine how the telephone at the Foundation's headquarters would be ringing off of the hook!?! We NEED a big name celebrity to "adopt" ichthyosis and put it out there in the public's eye.

I have joked about this before, but a big part of me is serious.....I have hoped-and I know you shouldn't wish this-that a celebrity would give birth to a child with ichthyosis. Why, do you ask? It is simple....celebrities have the "clout" to make things happen. Awareness would be raised and then perhaps these huge pharmaceutical companies would latch on and provide money/funding/grants for research, which could possibly lead to a cure.

So, no matter what your thoughts are about Oprah or any other "big name" for that matter, some sort of exposure would help us out in the long run.

Oh, yeah....Jean gave me an update....she wrote to Oprah and included some photos and she is having her letter hand delivered to the studios by a member who lives in Chicago. Keep your fingers crossed!! [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

Denise

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#7005 - 03/08/07 03:47 AM Re: Oprah is planning a show about skin!!!!
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Everyone
In my opinion, anyone doing a talk show about ichthyosis will benefit our foundation and our members by raising awareness for our cause.R,if you have a chance, check your television show listings for the show AM SAN FRANCISCO.Is it still on in the Bay area? In the spring of 1983, we were so fortunate to have Ted Shackleford,the star of Knots Landing and Dallas TV shows, be our national spokesman.He was on the stage with Jim Griffin, Mary and Penny Householder,and the moderator Terry Lowery.Jim also gave the opening speech at our 2006 Atlanta conference for those who were there.Jim and Penny talked about living with ichthyosis.The San Joaquin Valley and the Bay Area chapters of our foundation were in attendance and many spoke about their experiences.Sitting in the audience with our foundation members was a feeling of exhilaraton,unity, and excitement.The whole Bay area saw our members, and the phone calls flooded our foundation headquarters after the TV talk show aired.For our FIRST foundation to be on the Oprah Winfrey show would be such an awesome event.It would give our foundation exposure throughout the world and raise awareness for everyone.I wish total success to Jean, Maureen, our staff, and our members who are working so hard to help our cause.Take care everyone and keep the faith this wonderful event will be successful.
Sincerely,
Les
_________________________
Les Avakian

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#7006 - 03/08/07 05:06 AM Re: Oprah is planning a show about skin!!!!
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
Millions of people watch that show. Millions. It is great for raising awareness.
I CANNOT THINK OF A BETTER WAY.

I am only concerned that the complexity of dealing with different types of ich would be drowned out, especially the different needs of those who could sweat and those who have great difficulty sweating.

Come on, R, chill. No reason to beat up on Oprah if she is overweight. You yourself have mentioned you have been fat. Great to hear that you are working out and sweating. We may not all agree with her social / political agendas, but that's another story.
_________________________
Don't ever lose hope when
there is a promised land, and "sweat" dreams

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#7007 - 03/08/07 01:49 PM Re: Oprah is planning a show about skin!!!!
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
I agree, R, for the most part I hate Hollywood big-shots. I told my friends awhile ago that I'd e-mailed Dr. Phil to try and be on the show, and they all went WHY??! lol But imagine the exposure! Imagine the money that could be raised, the morale that could be boosted!
_________________________
Courtney
Mom to Julia

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#7008 - 03/08/07 07:55 PM Re: Oprah is planning a show about skin!!!!
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
Personally, I'm not a huge Oprah fan either, but I do love to watch her show at times because of certain topics, etc. And I think it would be FABULOUS if she did a show with Ich. included......Reality is, she is loved worldwide, and by golly, people listen to her.
I'm praying for something to happen!!
(AND, I'm praying that if it does happen, I get to be in the audience!!!!!!! I couldn't bear living in the same city and not being able to be there!!!!!)
Also, my mother in law ADORES Oprah, and mil could stand to learn quite a bit more than she's willing to ask about her 2 grandsons' condition!! [img]http://www.ichthyosis.com/ubb/wink.gif[/img]
_________________________
- - - - - - - - -
*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#7009 - 03/09/07 09:37 AM Re: Oprah is planning a show about skin!!!!
thehodgees Offline
Member

Registered: 01/29/06
Posts: 130
Loc: Woodstock, ON, Canada
"Oprah's a fat disgusting idiot."???? I thought, it was these same superficial and cruel remarks that the ich. community (including relatives of)detested and even feared. As well,the fact that someone "...just had to say it." shows that nobody is immune to such disrespectful and judgemental behaviour; I guess, by this example, it should be deemed perfectly expected to have strangers come up to us and make insulting comments about our appearances. I hope that none of Oprah's assistants stumble upon this thread during research for a show.

Sorry...HAD to say it.
CH
_________________________
***********
Craig and Sarah Hodgkinson (aka Dad and Mom to Matt and Ema)
Ema has been diagnosed with Congenital Ichtyosiform Erythroderma (CIE)

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#7010 - 03/09/07 01:55 PM Re: Oprah is planning a show about skin!!!!
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
Quote:
Originally posted by thehodgees:
"Oprah's a fat disgusting idiot."???? I thought, it was these same superficial and cruel remarks that the ich. community (including relatives of)detested and even feared. As well,the fact that someone "...just had to say it." shows that nobody is immune to such disrespectful and judgemental behaviour; I guess, by this example, it should be deemed perfectly expected to have strangers come up to us and make insulting comments about our appearances. I hope that none of Oprah's assistants stumble upon this thread during research for a show.

Sorry...HAD to say it.
CH


I'm so glad someone came up with a great way to address that comment. AGREE!
_________________________
- - - - - - - - -
*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#7011 - 03/09/07 03:44 PM Re: Oprah is planning a show about skin!!!!
libby Offline
Member

Registered: 02/25/05
Posts: 356
Loc: USA
We have been TV free for almost 8 years. The best thing I have ever done for my family!!! The creativity that has emerged, the reading, the amount of time being spent playing the piano, guitar, flute, clarinet and recorder is amazing.

But, I do miss the Oprah show!! I would love for her to shed light on what we as ichthyosis suffers or caregivers go through in a week, month, year, and YEARS. The attention that the disorder would receive would be incredible I am sure.

I agree....let's hope that Oprah's assistants don't find this thread. If I were half of the idiot Oprah was, I would have what, 1/2 a billion dollars right now!!!!

Lib

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#7012 - 03/09/07 04:16 PM Re: Oprah is planning a show about skin!!!!
kacy825 Offline
Member

Registered: 01/12/06
Posts: 89
Loc: Ellicott City, Maryland, USA
Quote:
Originally posted by thehodgees:
"Oprah's a fat disgusting idiot."???? I thought, it was these same superficial and cruel remarks that the ich. community (including relatives of)detested and even feared. As well,the fact that someone "...just had to say it." shows that nobody is immune to such disrespectful and judgemental behaviour; I guess, by this example, it should be deemed perfectly expected to have strangers come up to us and make insulting comments about our appearances. I hope that none of Oprah's assistants stumble upon this thread during research for a show.

Sorry...HAD to say it.
CH


Thank you for saying it!!!

Bottom line is Oprah is a person that evokes people to gather around and take notice. We as the Ichthyosis community need people to understand us. What a better way to do that then through someone who I believe has a good heart. There are so many people right here in the US that still feel alone. I talk to people through our support network that don't have computers or ways to search for better care. Fortunately, most people in the US have at least one TV, lets use it to our benefit if the opportunity should arise. Imagine the possibilities, she reaches so many people WORLD WIDE!!!!!!
_________________________
Kacy - 41
Happily married mom of 3 sons.(unaffected)
EHK-KRT1 palmorplantor, spontaneous mutation
Younger brother also affected.

" I have EHK, it doesn't have me!"

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#7013 - 03/10/07 12:06 PM Re: Oprah is planning a show about skin!!!!
JodiMeador1 Offline
Member

Registered: 06/21/06
Posts: 34
Loc: Roanoke, VA USA
I just wrote to the "Oprah Winfrey Show". Maybe if enough of us put a plug in, they will do a show about "Ichthyosis" Thanks for the tip!

Jodi

Quote:
Originally posted by thehodgees:
Hey, everyone!
I was just cruising through the Oprah site (www.oprah.com) and it looks like they are preparing for a show about skin.
Visit this link and fill out the form...let's see if we can't get a feature about Ichthyosis!!!!
https://www.oprah.com/plugger/templates/BeOnTheShow.jhtml?action=respond&plugId=250500001
(Make sure you list an age of at least 13 years old...for Ema, age 2, I listed myself and then told her story).

Cheers!
Sarah
_________________________
JODI MEADOR
GO WAHOOS!!!

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#7014 - 03/10/07 08:32 PM Re: Oprah is planning a show about skin!!!!
Nana-1 Offline
Member

Registered: 07/10/06
Posts: 66
Loc: Cleveland, Ohio, USA
I just sent in our story --- I wonder what is our present count?? Keeping fingers crossed.

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#7015 - 03/10/07 11:07 PM Re: Oprah is planning a show about skin!!!!
Julia's Grandma Offline
Member

Registered: 07/25/06
Posts: 35
Loc: Cranford, NJ - USA
I also posted to the Oprah show the other day. Who will do this if not us?

Also, just wanted to take a minute to remind everyone to use www.goodsearch.com when they search the internet if they are not already doing so. If we choose FIRST as our charity, each time someone does a search using this site, one penny will be donated to FIRST. This couldn't be easier. I'm sure we all do several searches each day. When you go to the search site, type in Foundation for Ichthyosis and Related Skin Types and click the button to verify the charity. From then on, every time you go to the www.goodsearch.com, FIRST will already be in there as your charity of choice.

------------------
Stephanie
_________________________
Stephanie

I GoodSearch for the Foundation for Ichthyosis and Related Skin Types.



Raise money for the Foundation just by searching the internet with GoodSearch - www.goodsearch.com- powered by Yahoo!

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#7016 - 03/11/07 12:50 AM Re: Oprah is planning a show about skin!!!!
Nikkster Offline
Member

Registered: 08/14/00
Posts: 83
Loc: Philadelphia
Thank you CH,

I second what you said. This forum is not the place for name calling.

I too am an Oprah fan and admire her for all of the charity work that she does. If anyone can do a show on ichthyosis, that's informative, though provoking, inspiring, and shows the human spirit, it is Oprah. I can name 10-20 shows hands down that are exploitive of people and in my opinion, Oprah's is not one of them.
I will cross my fingers that our campaign works. As much as I love the ich community and think that we are special, I am sure that there are other skin disease communities (psoriasis, eb, exczema, etc) that have organized in the same way for this show topic.
I'll be sending out lots of positive vibes and energy that our stories have touched the hearts of Oprah and her staff enough to provide us with a show, or at least a segment.

Nikkster

[This message has been edited by Nikkster (edited March 10, 2007).]

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#7017 - 03/13/07 12:57 PM Re: Oprah is planning a show about skin!!!!
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
Ah yes, I do rememeber when Ted Shackleford was our spokesperson as well and I remember him being on Merv and lots of other shows.

For those of you who have been around long enough, I was recruited off this board and flown to New York to do a talk show about Ichthyosis.

Compared to the other people on the show, skin wasn't glamorous enough and my segment got cut, but it was a very interesting experience!

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