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

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.

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

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

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


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

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

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


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.
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"

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

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!

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

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

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

Registered: 07/18/06
Posts: 5
Loc: marshall,NC,usa
i sent in my story!

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

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.

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


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][/img]


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


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.
Les Avakian

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