Lets get CDH on the Oprah Show.

[Tammy Pettus-Kopacz]

I've already emailed the Oprah Show about Bryston and CDH.

I think if more of us send in our stories then maybe they will do a show on it.

If you are interested heres the link to submit your story.

http://www.oprah.com/email/reach/email_showideas.jhtml

[KimberlySwitzer]

I will email them!! I hope that they will do a show on CDH and help get the word out there!!

[KimberlyRichards]

Great Idea!! That would definitely get CDH out there!

Kim Richards
Mom to Olivia 8/30/02-9/19/02 LCDH

[Dawn Torrence Ireland]

Awesome idea, Tammy! :D

[Corin Nava]

Great Idea Tammy! I just emailed them!

[Dawn Torrence Ireland]

I just e-mailed them again too. I'm going to make it a point to e-mail once a week. If at least 25 of us e-mail every week, then the odds will be higher that they will read one of our e-mails. :)

[Kristin Morrow]

I wrote my letter to the Oprah show tonight! I hope other mom's will send in their stories. lets spread the word about CHERUBS and CDH!!!

[georgiagebow]

Great idea! I will send in my story too! i actually used to send it in way back when but havent in a while!
Just a quick question for you guys who already did..did you sent in the "short " version of your childs story? or more lengthy? i have trouble shortening mine up..but i dont want them to just by pass it since its too long! thanks!!

gg

[Kristin Morrow]

I had to shorten my story from the one I wrote for the Today show. Oprah only allows 2000 characters...which isn't much at all. I found it so hard to try and fit everything in without leaving anything out, but I guess if they are interested then we can just tell our whole stories on the show. hope that helps

I as well emailed Oprah. I think that is a great idea :)

[LiseDill]

Just out of curiousity, wouldn't it be easier to contact smaller organizations like Ladies Home Journal?

[Dawn Torrence Ireland]

Yes, it would, Lise. They have done a story on a cherub, several years ago though. Redbook has done a story (even asked CHERUBS for information, quoted me directly without acknowledging CHERUBS. Ugh). I have some large newspapers editors' contact info too.

Any of you have some spare time to do a little bit of research and round up links to post to all the major magazines and newspapers? Then we can all go down the list and copy and paste our stories to each one.

[LiseDill]

Ok I get a few magazines. I tried to get them to do a story on Embryo adoption( like what we did w/ Reese) but noone writes back. I guess persistence is key. I'll gather them as I get the magazine in and post them here??? Or do you want them to you so you can put them somewhere???

[Dawn Torrence Ireland]

Here would be great, Lise! Thank you! :)

The boys were selling magazines for their school PTA so I got suckered into getting a bunch of subscriptions (actually really cheap so it was a good deal). I'll post those addresses here too. And someone on my desktop pc I have a list of contact info as well, just have to go find it.

Glamour Magazine - ok, not sure CDH is their type of article but here is there info:

Glamour
4 Times Square
NY, NY 10036-6593

letters@glamour.com

[LiseDill]

I get the old lady one...
LHJ, GoodHousekeeping,......now that I think of it one magazine that I haven't rec'd in ages is Woman's world. Their back page always has a human interest story.
The front page os magazines has a letter to the editor w/ her persoanl email listed. That's what I use.

[karahess]

Parents and Parenting magazine always seem to run stories. . . . . you know . . . . they were told their child wouldn't survive, but they overcame and beat the odds.

Oooo, what about Reader's Digest! Good one!

[LiseDill]

Don't you think going the magazine route is better then hitting the TV. We have been trying Oprah for years and nothing pans out.

[Dawn Torrence Ireland]

I say we try both. It can't hurt to keep trying Oprah - you never know what may happen.

[StephanieOlivarez]

Readers Digest would be a great one.
Does any have the address or email address?
I tried to email American Baby twice and have had NO RESPONSE!!!!!
You would think they would be interested????????

[LiseDill]

I got 2 emails ladies and I'll post them after we eat dinner.
I have LHJ and Womans day

[LiseDill]

Ok I'mback( pasta ...pretty good.):-)
1)lhj.deardiane@meredith.com
Diane is the Ed. in Chief
2)womansday@hfmus.com
Editor in chief is Jane Chesnutt

Good luck. I'm going write one more. We should all take a week.
Like Step, now
Dawn, next week..and so on....Maybe someone ( other then me) can set that up???:-) I'll write something any week

[LiseDill]

That should be Stephane.......not step

[StephanieOlivarez]

You tell me what you want me to do for CDH awareness and I am all over it.
I am confused about your post, Lise.....wait..just read it again...
you want me to do next week? Right???
ALL OVER IT! I mean that.
Anything to get CDH awareness out there and people to understand it.
It has become a passion to me.
CHERUBS has opened my eyes to whatever it takes and the ladies here, with their passion.....remarkable.
We need to come together and do whatever it takes to get the awareness out there.
Magazines, Television, local newspapers, address labels, stamps....GET THE AWARENESS OUT THERE! BOTTOM LINE!!!

[LiseDill]

No i'm just saying maybe if someone wants to start a chain thing we can all take a week. You and dawn were examples :-)
I think I ate too much :-D
I think we did the thing where everyone at once wrote in w/i a week period. There must have been 50 of us at one time. And nothing happened. I'm just thinking that maybe if 50 of us write once a week, maybe they wouldn't be overwhelmed ( Stuff like this sounds good in my head but once I write it , ( and I don't proof read)I'm thinking it is typed as it sounds in my head....( I need chocolate)
***BUT I have a great one here too
advocacy@parentsmag.com
you nominate an organization which a parent started to benefit the community. Parents donates 500 to the cause .
How great is that? I saw it in my Sept 07 issue of parents magazine.

( I'm off to Baskin Robbins ):-)

[StephanieOlivarez]

Baskin Robbins...Gosh I have not seen one of those sense I lived in Chicago. I LOVE Baskin Robbins.
I think the chain thing is a GREAT idea Lise. I am game for whatever it takes...and I think we can get SO MANY other ladies to do this to!!!!
Your ideas are greaaaat Lise. Please....Girl.
Ok, confused.............500 dollars or 500 posts?
Parents magazine would be a great awareness.

[Kristin Morrow]

So let me get this straight...are we ALL writing these places once a week? or are we taking turns each week? are we emailing? or snail mail? I have my story from the TODAY show that I wrote a few weeks ago...just let me know where I need to post/send it!

[Lisa and DanaThibeau]

I can't shorten Adam's story with out taking out what feels like huge chunks. I've stortened it enough as it is over 5 years. When I first wrote it I had a 16 page hand written book! Now it's 3 pages typed! But I'll try to shorten it further and send it in!

[LiseDill]

Dollars! You nominate an organization ...It's called Power Of Parents. I probably should have read the entire article 1st :-)

[LiseDill]

I think if we take turns every week we would have a better shot at getting a cherubs story out there. Like I said in an earlier post , sending in a bunch of letters/emails has never worked in the past. So lets try something different.
Does anyone want to be 1st to send off their story to the magazines??

[karahess]

How about a DVD story? We have one of Adam? It's 9 minutes long and leaves everyone crying!

[Dawn Torrence Ireland]

Parents magazine sounds awesome! I think if we all post as often as we can (maybe weekly - have someone here reminding us to do it!), then we have a better shot than 1 e-mail a week.

Kara, you have a DVD? And I don't have a copy? ;) How can we get that into uploadable format to post it on the site? If *any* of you have video that you can upload (like youtube type format), please let me know so we can start a video section! And maybe feature one on the homepage as well. :D How much better to raise awareness with actual sight and sound real life video?!

[karahess]

Yup! Back in June we had Adam dedicated at church and for the dedication service they wanted to come out to our house and do a taping of me and Chuck talking about Adam and all he/we have been through since his birth. The sermon was on "Courage" so we were to tie our story into Courage. It was shown at the beginning of the service to a congregation of 1300 people. There was not a dry eye in the church including the pastors. How's that for CDH Awareness! As soon as the video was over we were called to the stage for the dedication. It's so funny, cause I'll be out and about and perfect strangers come up to me and say "hey, you're Adam's mom . . . . . . "

I'll talk to Chuck and see if he knows how to convert it for us. If not, I'll at least pop a copy in the mail to you, Dawn.

[StephanieOlivarez]

That is very wonderful about your tape Kara.
I bet there wasn't a dry eye!!
Ok, what is the plan? Are we emailing everyday? I'm lost!!
To which magazine? If it is to a magazine....what is the address?

[karahess]

Too many cooks spoils the broth going on here. We have so many thoughts flying that we're all confused. Who's the organizer of the bunch; who wants to take charge? Lise . . . . . . . :c1

[karahess]

Dude, my smilies come out so huge! What gives!

[StephanieOlivarez]

I like your big smiles!!
Yeah- I agree----someone take charge and let us know!!!
That way we can have a game plan.

[LiseDill]

I am not good at organizational stuff. I can organize my kids and my home...but if you throw something at me , i'll mess it up :-)
I can be the reminder lady. Every week I can do that for y'all!

[LiseDill]

Kara just saw the post about the DVD. I think it would be awesome. I wonder how that would do. How did you do it ? Is it like pictures w/ words or you all talking ?
I think Parents and maybe Child magazine is a great idea.
How about every sunday/monday we send something out?
Kara do you want to start since you have the DVD?
If not who said they had 3 pages down from 15? If that's available maybe you can be 2nd. I think I have Grace's as well which is 3 pages also...

[StephanieOlivarez]

I got this magazine at the hospital today.
It's called Baby talk. Written by Parenting. That would be a good one.
I'm looking now to find the email address:
E-mail letters@babytalk.com or write to them at 2 Park Avenue, 10th Floor, New York, NY 10016.
I am going to email them now.

[LiseDill]

how about American Baby???
(Stephanie, do you homeschool your girls??)

[StephanieOlivarez]

American Baby---tried to email and had NO response. But maybe someone else should try.
I do not homeschool the girls. We thought about it when Shelby came home and our docs said it would be fine to leave them in public school.
Do you homeschool?

[StephanieOlivarez]

Ok, now you have me on this kick again!!!
I'm going to start a new post......
I was trying to go to bed!!!HAHA

[LiseDill]

I did Jason in 6th grade. He's 16 now. He had problems w/ kids bulling him. He's a bit shy. You can look at his picture on my blog at msn. He's in the JrROTC now
www.bearersofgrace1019.spaces.live.com
He adjusted well.
So far :-)

[karahess]

Lise, absolutely beautiful family! I love the fishing profile fishing pictures. Oh my gosh, that's great!!!

[LiseDill]

Yea, I swear Jason has become so 'grounded' since emmie was born. Like he's not so self involved, as far as 16 yr olds go.
That was our one and only vacation this summer. We had planne don going to New England and saved up so much money to fly 5 kids there. My inlaws have a cottage on Cape Cod and we loved it when we lived there. Hyannis is so wonderful in the summer, a bit crowded but lovely.
But my fil got ( and cured) prostrate cancer and they sent us their time share for a week at a resort called Silverleaf in Texas. We had a blast. That's where I fired that rifle in my Avatar pic. I had blown on the butt of the gun thinking I looked like that chick from the Terminator but Jason yelled that my gun was loaded :-)

Thanks for the compliment. ~
( my daughter Victoria wants to be a missionary and pedi surgeon( to cure cdh !)

[karahess]

That part about wanting to be a missionary sent chills through me. I commend you as a parent. That is something that you should be very very proud of! It is so wonderful to see that there are good kids out there that do have a love for God.

[karahess]

Ok, Dawn, Chuck is going to burn me a copy of the DVD to send to you.

Regarding sending it to magazines and posting the video to the site, we are going to check with our church. Technically, they are the originator and producers of the DVD. I doubt it would be a problem, but I don't want to violate any copyright issues or what have you. Once I have an ok from them, Chuck will get more copies made for me to send and I'll give you permission to put it on the site.

[LiseDill]

Victoria is sweet at 14. I have always hated when parents say, watch out for those teen yrs...I just think if you are around for them they will be ok. Jason at 16 has had a few moments but overall is very nice and compassionate.
Victoria has said that she wants to be a pedi surgeron since Grace died in 00. Actually her 3 best friends all want to be doctors so they have agreed to go into practice together.
She is really committed to her love of God. She is really outgoing. Our chruch has local misison trips Nick went on one to Arkansas w/ the heifer Project and loved it. Even w/o electricity and he was the only boy!!!

[karahess]

Getting back to the DVD and answering your question, Lise. The church actually sent a film crew out to our house and while filming, Chuck and I talked and told our story. Then at the end they show a couple pictures of Adam.

[LiseDill]

I have one more for you dawn.It's Newsweek. You submit your story of you cdh baby, how he changed your life or whatever to
...It says, to submit your essay for the MY TURN column
www.myturn.Newsweek.com.

It's one of my favorite articles to read in such a 'heavy' magazine. There have been a few over the years about handicapped children and even infant death.

I have always said, Kara, and maybe you feel the same, that no matter what happens in our life( mark's and mine) we know this has 1st passed thru God's hands. It's all about Faith :-)
Also Dawn has, i think posted on here, a book( which I sent her) called The Room Of Marvels. I read it in 2 days. It's awesome. Amazon has used copies for 5$. It is by far the best book I have ever read! I think you would enjoy it also.

[Kristin Morrow]

Is there any way a complete list of emails/address' can be posted somewhere so that we can get crackin' on writing our stories and sending them in? I would love to have them all in one place so I don't have to search for them when I'm writing. should our stories be complete or short? I know with the Oprah show I had to cut it way down and it didn't seem like I could say much at all. I hope other places aren't like that too! To date I've only sent my story to he TODAY show and Oprah...I'm ready to get started on the rest!

[LiseDill]

I know Oprah lost a child but at times when i see her talking to grieving families it's like it's the last thing she wants to deal with

[StephanieOlivarez]

About the list...that's a great idea.
I have sent stories to Today, American Baby, Baby Talk, Parents.
Here is the email address for baby talk, letters@babytalk.com.

Lise- you may be on to something...maybe oprah doesn't want to deal with child issues. Let's try other avenues.

[LiseDill]

Hey, Stephanie you and kara were talking about getting people to post somewhere and I can't find that thread. Where is it???

[StephanieOlivarez]

It is in the Indiana forum.
I tried to have a contest for Indiana members and Kara and I were the only ones writing in the forum.
But, I still have faith. They will come around.
Take a look and if you have any suggestions.....let me know.

[LiseDill]

I drove thru indiana once when I was in college. Does that count???

[LiseDill]

i'm kidding, but what i wanted to say about the posting ( to get more peple to post) how about a Q&A thread?
Like once a week ask a new question..funny, weird, anything,
What coffee do you drink?
What male actor is cute?( I like Matthew Ma-HUNK- a-hey):-)
Something like that...or you can do all indiana trivia

[StephanieOlivarez]

That sounds perfect.
I am going to ask what the state bird of Indiana is. Maybe I will even say who gets it first-wins the ribbon.
Thanks Lise.

[LiseDill]

You are so welcome!!!

[Kristin Morrow]

I've compiled a list from other posts. here they are:

Oprah show: http://www.oprah.com/email/reach/email_showideas.jhtml

Ladies Home Journal; lhj.deardiane@meredith.com, Diane is the Ed. in Chief

Woman’s Day: womansday@hfmus.com, Editor in chief is Jane Chesnutt

Parents Magazine: advocacy@parentsmag.com

Baby Talk Magazine: letters@babytalk.com or write to them at 2 Park Avenue, 10th Floor, New York, NY 10016.

Lets get to writin' ladies!!
News Week: www.myturn.Newsweek.com.

TODAY SHOW: Noah Oppenheim, Supervising Producer, 30 Rockefeller Plaza, Rm. 374E, New York, NY 10112.

[Kristin Morrow]

Feel free to add more to the list! the more the merrier

[LiseDill]

You are incredible!!!
We can all take one a week.
WOW! Kristin...that's just awesome!!!
I'm going to do one right now!!!

[StephanieOlivarez]

This list is AWESOME.
I will be on the ones I haven't written to yet!
Thanks Kristin.

[Dawn Torrence Ireland]

Thank you, Kristin!!!!! :)

[Kristin Morrow]

Got my letters out the other day to all the contacts I listed!

Here's the response I got from Woman's Day:

Dear Writer,

Thank you so very much for your interest in writing for Woman’s Day. Unfortunately, you are not alone. In fact, you have so much company, and we have such a small cadre of editors, that we have had to develop what you will no doubt find a rather tough policy on unsolicited manuscripts. This is what you need to know:

Our editors work almost exclusively with experienced writers who have clips from major national magazines. As a result, we accept unsolicited manuscripts only from writers with such credentials. There are no exceptions.

If you do have significant national writing experience, and you have an idea or manuscript that you think might interest us, e-mail us at www.womansday <http> @hfmus.com, including some of your most recent clips. Please note that we cannot guarantee that your submission will be read or commented on; it is by far most likely that we will get in touch with you only if we are interested in pursuing the idea you propose. Please note as well that we said e-mail; hard-copy submissions will not be considered.

If you do not yet have the national experience we outlined above, we look forward to hearing from you when you do. We also extend our regret that, should you nevertheless decide to send us a manuscript, we will not have the time to read, comment on or return it.

With all best wishes,
Woman’s Day Editors

So I guess they are out!!

[StephanieOlivarez]

Well that is a shame.
You would think that CDH awareness would be just up their alley.
It's so great you tried, so now we can move on to the others on the list.
I guarantee we will get it in a magazine!!!!Mark my words.
Let's not get discouraged!!!! We can accomplish great things working together.

[Kristin Morrow]

Thanks for your support!

[karahess]

Well poopers doopers to Womens Day! I like that part about when you do have national writing credentials. What the heck!

[LiseDill]

Ok People I got my leter off to LJH. Who's next??
And Dawn...You mentioned Kara's video n a previous post
It was so easy to do the youtube video. If you give me something to write I can have, let's say Victoria say something about cherubs on youtube.
Do a Cherub's advocacy video and I can download it to youtube.
Like Victoria can say, "My baby sister was born w/ CDH. She died but my family is alive because of cherubs. the support research and advocacy we recived as a family ws honest straghtforward and helpful..."
Gimmie something to write and we can upload it to youtube....Just for you!!
:-)

[StephanieOlivarez]

Lise I think that rocks!!!!!
Please let us know when you get it on youtube. I can't wait to see it!!!!

[LiseDill]

Someone( dawn) needs to give me something to give Victoria to say. Like a verbatium thing. I did ask Victoria and she said she'd do it for you
I think it's a wonderful idea.
I tried the jar thing and everyone I visited shot me down...even my own husbands store!!!! Legal mumbo jumbo!
So this is my 2nd idea..
( i hope no other group steals this idea!) :-) because i'm gonna TM(trademark) it as mine

[StephanieOlivarez]

Again Lise- you are cracking me up. You go girl and TM it!!!
This will be so wonderful to see when Victoria does it.

[Dawn Torrence Ireland]

LOVE that idea!!!!! If we can get families to talk for say 3 or 4 minutes each about their cherubs, we can put together an entire movie.

What to say... ok, let me work on that.

[LiseDill]

Just send it to my home email and Victoria can do it while she's off from school.
Make it as long as sweet, caring whatever...you and cherubs held me together...

[AlyxChavis]

I tired Oprah several times with no luck. I decided to write to Reader's Digest. The link is for writers but I told them my idea was for one of there writers. They really prefer stories by there staff writers.

Here's is the link. I said I was not alone and felt very confident they would hear from others. :-) I was very brief about my story, 1 small paragraph. I said the story could be health or inspirational but I put it under inspirational because each of our babies has inspired us in some way. I put in 2 paragraphs of information about CDH and the CHRUBS web site.

http://www.rd.com/articleproposal.do?wtGroup=RDCOM_FOOTER&wtID=ARTPROP_SITE&lid=31

Hugs,
Alyx

[LiseDill]

Thanks Alyx
That's my goal today!

[Cwyatt]

Hey Guys I just E-mailed the oprah show to maybe she can help get the word out.

[StephanieOlivarez]

Alyx-I am going to write Readers Digest today also. Thanks.
Dawn-love the idea of a movie. How will this all come together?
I am in for sure. I know my oldest girl, Lexi, would LOVE to do something for CHERUBS.
Please let us know what and how this will be done!!!! I'm excited about this one.

[Kristin Morrow]

Great idea Alyx. I just wrote to reader's digest. I hope others will follow along and maybe we can get one of their writers to put something in the magazine.

[StephanieOlivarez]

I think anyone that is interested should write to readers digest this week.
Readers Digest should be our magazine for the week.
The more we sent to them, the more they will get interested in our cause.

[LiseDill]

I did too.
Nothing long: cherubs, Grace , CDH....right to the point

[StephanieOlivarez]

I received this back from Readers Digest.
Dear Stephanie,
Thank you for sharing your submission with us.
We'll be in touch if we decide to publish your contribution.
Sincerely,
The RD.com Editors
1 Reader's Digest Road
Pleasantville, NY 10507
http://www.rd.com/

I did my letter the same, CHERUBS, Shelby, CDH.

Ok, more need to get on this to Readers Digest. More people writting- the more they will know how we want to spread CDH awareness.

[karahess]

I'm glad to see people diving into the Readers Digest route. I'm addicted to that magazine. I had kind of given up hope on them as they have a thing in their magazine in tiny, tiny print that says not to send in articles to them.

[LiseDill]

Ha!I got the same thing!!
That's probably what they send out to acknowledge they rec'd it.
Let's just hope they read it

[AlyxChavis]

Thanks to everyone that has written. They say not to send articles in the magazine but on the web site they do let you submit stories with the caveat that they usually only print there staff writers. It's not readily available, you have to search for the page. That's why I said right away that I was not a writer and was only submitting for them to consider one of there writers write about CDH. I also gave them 2 points of view for the story. We'll see.

Alyx

[karahess]

Ah ha! Good job digging around and finding out that little secret, Alyx. Lord willing, CDH will strike a cord with one of their writers.

[Dawn Torrence Ireland]

Great jobs, everyone! I've been working on some articles from a couple different perspectives too. Shane's story, CHERUBS story, running an on-line non-profit and one on the drama stuff going on (non-personal, abstract on the pitfalls of running an organization while dealing with the occasional issues). I figure any story we can get published that will allow us to type the words "Congenital Diaphragmatic Hernia" in the media is great. So please look at your stories from all different sides - how it affected your family, living in a different city while in the hospital, single parents, through the eyes of your other children, etc.

And contact a local reporter who wants to expand his/her career. I'm very fortunate to live in a area with a lot of writers, several very well known. I also have known the editor of one of the local papers for 20 years (I used to babysit her boys when we both lived in VA and we ran into each other again when she interviewed me about CHERUBS.... God certainly had a hand in that!). I'm going to send these stories into them, hoping that at least 1 will want to help me finally write that book about my story or one will have connections to the Associated Press.

I also am contacting all the local media (tv, radio, newspapers) about the Angel Ball and Golf Tournament. Those of you that are planning to attend - use that as a story too! How you are raising funds to attend or how your family is meeting other CDH families. After the events, write articles about how it was to meet other families.

There is always a story in everything... but in our cases, we each have about 100 stories. The trick isn't to try to fit it all in one article, but to focus on one thing, one event, one moment... and take the readers there with you.

[JodeW]

I emailed Oprah last night. Hopefully, the more people that do email her the more they will see just how common CDH really is in our world.
This is all still very new to me. It has taken me so long to get to this point. Thank you to all you for listening to me.

[LiseDill]

AND you still have to write something for Victoria on YouTube!!!!

[Dawn Torrence Ireland]

how about using what's in the PRG?

[LiseDill]

What's a PRG??
Show me where it is and I'll have Victoria say it...

[Dawn Torrence Ireland]

Parent Reference Guide. It's over in the downloads section.

Thank you Lise and Victoria! :)

Any of you who want to talk about your cherubs or have your cherub talk about CDH, etc... *anything* to do with CDH and your family.... if you can videotape it, we'd love to post it!

[LiseDill]

16 pages? OK I printed out what I needed. I'll get it done be4 the kids go back to school on the 7th.
I'll write it out and pass it by you 1st then send it to youtube :-)
CDH on Youtube(TM)
That's how i'm going to present it :-)

[StephanieOlivarez]

Lise- I can't wait to see Victoria!!!

Dawn-if we video tape it and send it to you- will you post it? I have no clue how to do that? Or, if someone can tell me how to do it, I know at least my two oldest would love to talk about CDH and their sister Shelby.

[Dawn Torrence Ireland]

You are too cute, Lise. lol.

No, not all 16 pages are necessary.

Stephanie, if you send it to me in a format ready to upload (I guess digitalized) then I'll figure it out.

[StephanieOlivarez]

That's too much for you Dawn. Thank you for offering.
I just talked to Shane and he is going to help me. We'll see if we can't figure this out.

How many people have written to Readers Digest? Let's get as many people as we can to write to them!!!!! :D

[LiseDill]

I scanned thru and copied 2 pages...
Tht's our goal for tomorrow.
I wrote to Readers Digest and I think Woman's day( whoever the editor Diane is...that's the one I wrote to) maybe one more but def. 2

[StephanieOlivarez]

Good luck tomorrow, Lise.
I can't wait to see what you come up with.
I think this is a grand idea!!!!
Have fun!!!! :D

[Kristin Morrow]

So far I've written the Today show, Oprah, Reader's Digest, Women's Day, Ladies Home Journal, parents magazine, Baby Talk and News week once. I'm going to get around to writing them all again here one of these days

[LiseDill]

Good Gosh, You ahev been so busy!!
Hey, Dawn, where is the letter you wrote for us that we can just copy and put our baby's story in there? Do you have the link?

[StephanieOlivarez]

Here is the link Lise:
cdhsupport.org/members/dload.php?action=file&file_id=51.
This is it. For some reason if it does not work- let me know!

[LiseDill]

Thanks...that is going to save me a boatload of time.

[Dawn Torrence Ireland]

You ladies are wonderful!!! Thank you for doing this and getting CDH Awareness out there.

[LiseDill]

I hate not being a woman of my word, but I ended up with 2 massive migraines today.
Ah, the joys of hereditary garbage! :-P
But I'm on it.....

[StephanieOlivarez]

Lise- you got to take care of yourself to be able to take on the world!!!!
I hope this finds you feeling better.
We know your on it and it will rock when you complete it.

[LiseDill]

I think the only wonderful thing that comes out of my mirgains is I can't raise my voice...so I whisper-yell. :-)
I started to take that Glucosamine pills for joint pain( i have a metal ball in my knee). Those pills, unbeknownest to me have something in them that gives me whoppers of a migrains..and my knee still hurt!
I love 40!

[StephanieOlivarez]

Ask your doctor if he can give you something else that does not give you the mirgrains, and gets rid of the knee pain.
40 is sporty girl!!!!!
50 is nifty.
Are you laughing yet?

[LiseDill]

Like Vodka???

[StephanieOlivarez]

Well, maybe :P
No really, there has to be something out there to get rid of these migrains and help with your knee pain.
WHy do you have a metal ball in your knee anyway? I am still waiting for your address!!!!!

[LiseDill]

Ran track.......tripped over a hurtle :-)
twice.
Then in college I pulled a 'superman' and jumped down a flight of steps. I was in so much pain I blacked out :-)
Tore my Patella. There's some kind of metal doohickie in there.........know what it looks like? Know that little 'table' that sometimes comes in the center of the pizza to keep it from smushing against the top of the box? That..but metal.
It's so stinkin' cold here and it hurts.
I got mark. he rubs me knee every night. I know, he has his moments:-)
What can I get for migrains?
( i don't drink ...)

[StephanieOlivarez]

The cold bothers Shane's ankle to.
That's good that Mark rubs your ankle. I could not imagine what it is like to have metal in your knee.
I have no clue what a doctor would give for a migrain? Ask you doctor? i know there must be something to help you.
How about an Alive? Have you tried one of those?

[Kristin Morrow]

Lise- have you tried Imitrex for migraines?

[LiseDill]

Imitrax. Maybe i'll try that one. I never did cus I was lawyas pg or ttc. But maybe a trip back to the doc is in my new yr plans.

OK back to the oprah show post!!! :-) We got a bit sidetracked huh???

[StephanieOlivarez]

That's ok to get side tracked.
Really, go see your doctor and see what you can do for you.
So are we working on Oprah or Readers Digest this week?

[karahess]

I was a migraine sufferer before pregnancy and I always took Imitrex. Good stuff!

[Kristin Morrow]

I thought we were working on Reader's digest? but we can go back and do Oprah again too!! Let's do them all again!!! do you ladies need the list again that I made? does anyone have any new ones to add?

[LiseDill]

I have to go back and find the list. Kristin you really did awesome!
I don't have anything new to add but I'm going to send off a letter today to someplace!!

[StephanieOlivarez]

Ok, I will also get the list and start re-sending them.
That is a great list Kristin- Thanks.
Maybe with persistence we will get somewhere.

[Kristin Morrow]

The list is located on page 4 of this forum for those who need to find it. I do want add that Woman's Day rejected my letter, so don't bother writing them again. the only one not on that list is reader's digest but their email is located somewhere on here...I believe Steph posted it somewhere.

[Kristin Morrow]

Got my second round of letters out today!!! I have to be productive this week cause next week I go back to work and I don't know how much time I will have. I'll try my best to keep on them though!!

[Dawn Torrence Ireland]

You ladies are just awesome!!!! :)

I e-mailed several reporters today, hopefully will bite onto a story about CDH.

[LiseDill]

I realy hope and pray Kristin that someone hears us....you are such an amazing advocate for cdh!
You are motivating all of us!!!

[KaraGleeson]

I emailed them also, that is a great idea...

[LiseDill]

Hi Kara.
Thank you so much for joining us. Every little bit helps.
How is candence? What a beautfiul name she has! Is tomorrow her 1st birthday????

[TaraEdwards]

I was doing some research on CDH one day while at the NICU and the Oprah show was on the tv in the parent room. I had the idea to submit my daughters story & some information on CDH. I asked that a show be done on CDH to bring more awareness & support for those born with it & their parents. Hopefully one day soon, something will come of it. I think its a great idea & totally agree that if everyone can submit their story, maybe the Oprah Show will respond! Great idea!!!

[LiseDill]

I hope so Tara. I saw an Oprah show where a woman had twins: one lived, one died. Oprah looked so uncomfortable. I also wrote to Oprah, Ladies Home journal twice, Womans day and one other one.
We were kinda batting around the idea that maybe Oprah feels uncomforatble w/ infant death because her baby died when she was a teen. What do you think? I don't know.....

[Dawn Torrence Ireland]

Welcome to CHERUBS, Tara! We'll get CDH on there - there is power in numbers and CDH moms are notorious for never giving up. :)

[karahess]

Ok ladies, so I was sitting in the bathtub last night reading my Chicken Soup for the Mother's Soul book and I decided to scroll through the back and read about the authors. Hot dog! There is a big list of freelance writers for magazines or magazine article publishers. They list their addresses and/or phone numbers. One in particular struck me that we need to write to.

It said "Liane Kupferberg Carter is a freelance writer whose work has appeared in the New York Times, McCall's Child, Glamour, Cosmopolitan and Newsday. She lives with her family in Westchester, New York, and is a community activist on behalf of children with special needs. She can be reached at lcarter@cloud9.net."

My book was published in 2006 so it's not too old, but you know how people change email addresses often. I don't know if it's still a working email or not, but I bet if we google her name, we could dig up info on her and contact her somehow.

[LiseDill]

I have her email in a email right now. I'll send something off asap.
I love Chicken Soup...my teens have them too

[Dawn Torrence Ireland]

Gray's Anatomy message board - just posted about this about that thread. Let's start posting and let's get family and friends to post too!

http://abc.go.com/primetime/greysanatomy/index?pn=mb&cat=30931&tid=181433

[karahess]

Very interesting to read the posts on the ABC site. Thanks Dawn for posting to it, too!

[Dawn Torrence Ireland]

Don't thank me, Lise was the one who found the message board this morning and posted it on our Gray's Anatomy thread. I only wish I had read her post sooner! :)

[StephanieOlivarez]

I am going to get on the ABC site now.
Going to email the lady from Chicken Soup-Thanks Kara and i would like to share some news......received this today...

Stephanie,
I received your letter on my desk and I would like to do a web story on this event in Indiana. I think it could turn into a touching article for people not aware of CDH. So if you would like, send me an email back confirming this story and we can take it to the next step.
Thanks for your time-
Dan Guetter
Quad Magazine

My response:
Dan,
Thank you so much for having interest in this Atv ride for CDH awareness.
Your response has brightened my day.
If I can answer any questions- please do not hesitate to ask.
Will you be so kind to let me know how I will be able to access this web story? CHERUBS members will want to read it and allowing Quad readers to view it will bring CDH awareness to a new level.

Stephanie Olivarez

Does that sound ok to your guys?

[Dawn Torrence Ireland]

Sounds great, Stephanie!!!!!!!!!!!!

YEAHHHHHHH!!!!!!!

Now, stupid question... what is Quad magazine? :)

[StephanieOlivarez]

Quad magazine is all about Atv riders....Atv clubs and their rides, different location of trails to ride on, companies that make Atv's, advertisements,etc........They will write this article and talk about the CHERUBS ride in April.

Dawn I read your post on ABC and it is fantastic.
Can you help me and tell me how I can post there? I have just become a member and could not figure it out???

[Dawn Torrence Ireland]

I had a hard time figuring it out too. You just hit the Reply button under someone else's post.

[karahess]

What happened to Dawn's posting on the ABC Grey's Anatomy site. It's GONE!!!!!!!!!!!!!!!!!!!!!!!!!!!

[StephanieOlivarez]

What do you mean it's gone?


I got another letter from an ATV magazine:

Hi Stephanie-
I wanted to let you know that I received yur package in the mail and have read it over. I am going to talk to the publisher and request that we help yo out in any way that we can. I will do my best to get your event date location and time in our news section of the magazine. I will also forward your info to our web guys and have them post this online for you, can you provide me with an e-mail you would like posted online or a website that would have more info, possibly a telephone number? I can use this one but I want to be sure that would be ok with you first.
The next few weeks are really busy for our snowmobile publications and most of the editors/publishers will be out of the country including myself but I will be sure to get back to you, it may be a couple weeks but I will also talk to the appropriate people in that time.

Thanks for taking the time to send your letter,
God Bless,
AJ

My response:
Hello AJ,
Thank you so much for having interest in the ATV ride for CDH awareness.
Your response has brightened my day.
If I can answer any questions- please do not hesitate to ask.
The email address: olivarez@rtcol.com/ solivarez@cherubs-cdh.org
The phone number: 574-224-2223
The website for more CDh information is: cdhsupport.org

Will you be so kind to let me know how I will be able to access the web story and what issue the information about the ride will be in? CHERUBS members will want to read it and allowing ATV magazine readers to view it will bring CDH awareness to a new level.

I appreciate you efforts in helping us with this ATV ride for CHERUBS.

Have a safe and fun trip.
I look forward to talking with you when you return.
Thank You-
Stephanie
CHERUBS Indiana State Representative


I am so happy with two responses in one day. This is a sign that we are going to get CDH awareness out there and get people to know what CHERUBS is all about.

Now I am very courious to see why Dawn's post is gone?
Are the other posts from CHERUBS members gone to?

[TaraEdwards]

Ok tonight I was watching Nancy Grace, I happen to love her. For those that don't know she just gave birth to twins that were 2 & 5 lbs., spent time in the NICU & then she became very ill and was hospitilized. She is looking for "extraordinary parents"! I found it interesting but the web site is www.cnn.com/nancygrace....maybe she would be interested in the strength it takes for CDH parents?!?! Worth a shot???

[StephanieOlivarez]

I am on writing to Nancy Grace. It might be a go!!!!!Thanks Tara.

Lise-I just was looking at your bearersofgrace1019.spaces.live.com.
It was wonderful to be able to look at all your pictures. Christmas06,Soakin in God's Love, Grace naked, You are my sunshine.
Thanks for allowing me to view it. I enjoyed it so.

I'm off to write Nancy Grace.

[karahess]

No joking! Go to the Grey's Anatomy link and you'll notice that entry number 9 which is Dawn's is gone. And I wonder who had a hand in that?

[TaraEdwards]

I wrote to Nancy Grace & attached the Cherubs website address!!! Keep your fingers crossed ladies!!!! I'm off now to check out the Grey's Anatomy link! I say we keep plugging away & I want to thank you for welcoming me aboard!!! Thanks to all our Cherubs!!!

[StephanieOlivarez]

I also went to Nancy Grace and attached the CHERUBS website. Come on ladies....we need more to get on Nancy Grace. We keep getting CDH awareness out there....someone will jump at the story and it will spread.

[StephanieOlivarez]

Yeah, Kara your right number nine is gone.
I went ahead and posted a little note...very plain and mentioned CHERUBS.
I think ALL of us should go there and Thank ABC for doing a show. Explain about CDH and let them know CHERUBS is a CDH suport group.
Make sure to give them CHERUBS website address.
Maybe this will get them to do another show on a baby with CDH.

[Dawn Torrence Ireland]

Tara, I can't get the link to work. Can you repost it? I love that photo!!!! :)

Kara, I see that and just reposted. Childishness strikes again.

[StephanieOlivarez]

Well, I say that if it gets erased again-keep reposting it.
How can someone erase what you wrote?
I don't get it.

[Dawn Torrence Ireland]

Falsely saying that we infringed upon their trademark, no doubt. I just posted on the Breath of Hope thread about it.

[LiseDill]

Tara, I had no idea about your babies....2 and 5 lbs wow. Josephine and what is your other childs name? What a beautiful name. I had 2 aunts, great aunts, named Josephine. It's beautiful.

Tara, I hope and pray that NG takes a look at cdh. I know she herself had twins so let's hope that is important to her in considering her choices...Fingers crossed for you tara!!!!

dawn, sorry about the whole CDH thread at ABC.once again it could have helped more parents...that's the goal, but you get the vengeful hands on it and poof once again, it's gone.

[ErikaR]

Hey there,

I'm new on here, though I have been on the listserve since we lost Bennett. And then I have been missing for awhile off of that since I had my daughter Ella in April. But I just wanted to say hello and ask what I can do from here - I am all for writing people and pestering them!:-) I had a bit of a rough time, especially as there is barely any knowledge of CDH in the Bahamas, so I am all for campaigning to make people more aware of CDH.

And I can't quite comprehend what has been going on with BOH. The fact of the matter is that CDH affects our babies and our children - all of whom are innocent. For someone to take that innocence and be malicious, well, it's just very sad.

[LiseDill]

Erika.welcome.
I'm a boh-er transplant. :-)
I started boh w/ Elizabeth but ....I didn't agree and now ..hello again :-)
I'm very happy you are here. The Bahamas...wow. I bet it's beautiful.

Ella,Bennett and drew, what beautiful names. Your pictures and website are really pretty.
We are doing a letter writing campaign at "let's get on the oprah show" or something like that...
Welcome welcome!!!

[StephanieOlivarez]

Erika Welcome.
Yes we are trying to get CDH awareness out there.
I believe that on page 4 or 5-Kristin put together a list of all the people who we are writting to get CDH awarenedd out there in the public.
We would love it if you wrote letters. The more letters we send out-the better.
Thanks for helping us to get CDH awareness out there.
We are happy you are here. If you have any questions-please don't hesitate to ask.

[LiseDill]

Well, 20 minutes later I see that the thread we are on is the oprah show one....duh~goin' to take a nap :-)

[StephanieOlivarez]

Got this email from AJ (ATV Magazine). I am TOTALLY EXCITED!!!!!

Hi Stephanie-
I talked with the Editor this afternoon and he was very happy to help out.(I was able to talk before we both left the country).
I will get the information posted foy you @www.ATVMAG.com. We have one of the largest ATV wedsites in the world so you should see a good response from that. I will need a little time to set that up as I'm going away but I will get it done as soon as possible.
As for the magazine coverage I am going to check our production schudule and see when our next issue gets printed and mailed, the editor seems to think it may be very close to your event date so I will have to do some research and ask the production department is we would be in time for that issue. I have approval to get you into that magazine though as long as the magazine isn't mailed after the event. I will look into this and get you a firm answer as soon as I can.
If I am lazy with a response over the next couple weeks please forgive me as I will have limited access to e-mail.
Thanks, AJ

My response to him:
AJ-
I cannot express to you how Thankful I am to you for helping us out with this ATV ride for CHERUBS. It is wonderful that you are doing all of this extra work. It touches my heart and I appreciate it so.
I look forward to hearing from you when you have the chance.
Again, please have a safe and fun trip.
Stephanie

So I hope the magazine doesn't come out before the ride. I am thinking that if it does-he will put an article in after the event. He seems like a very considerate man.

I am very pleased.

[ErikaR]

Thanks for the welcome - it makes such a difference to know I am not in this alone - I just deal with all of this a little differently than my darling husband!:-)

I did write to the Oprah show awhile back when someone on the listserve posted that they were going to do a show about losing a child. I never heard back but I will write again! :-)

And yes, it is beautiful here - just can get rock fever sometimes - small island. Just the other day I overheard my husband's aunt being asked if Ella was our only child and she said yes. I have been kicking myself ever since that I didn't speak up - but my Mother pointed out (when I moaned to her about it!) that sometimes you just can't change ignorant people!

And I am way overdue a trip to Target!!

Hey how do you put a picture in your profile, so that I'm "no avatar"!

[Dawn Torrence Ireland]

Hi Erika, so great to have you here!!! :)

Avatar - click on Profile on the yellow line under the photos of the kids up top. All your Profile info is there, and that's where you add a photo as your avatar. :)

Stephanie, that is so great, YEAHHHH!!!!!

Ok, everyone, since this thread is now 11 pages and talking about all sorts of media stuff, I'm going to start a new thread...

http://cdhsupport.org/members/viewtopic.php?p=5697#5697

[BeverlyCawvey]

Sounds like a good idea trying to see if Oprah would do a show on CH.
my son is in chicago childrens memorial. we live a hour from there.


I own a website competition called the Fantasy Fights. http://www.webcompetition.net/
I have info posted on the Index page, The FF get's a lot of hits =)
I sent a email to everyone in my address boook also asking them to spread the word.
Hugs
Dakota's Mom Beverly
http://dakota-cody.com/

[Dawn Torrence Ireland]

Thank you, Beverly! :)

[BeverlyCawvey]

Your welcome =) i wont be back on till later this evening, we are going to go see Dakota, I am getting so sick of this hour drive everyday!!
and the gas we go though!!! But, once we are there by him. Its all worth it. Hugs

[Tammy Pettus-Kopacz]

WOW this topic really took off. You ladies rock. I'm still sending Bryston's story in where ever I can.

Anyone got the Grey's anatomy link handy? I'll keep looking for it too.

[sarah.deskins]

Wow, im suprised no one's heard back. I figured that this would be somehting the Oprah show would jump on. I'll join you and write something up. Maybe if enough of us bombard them we'll get some attention :)

[Cristin Russell]

I submitted Graham's story when he was an infant... thought the name 'Graham' might get someone's attention... I never heard anything... I'll try again though!!

[Dawn Torrence Ireland]

Oprah, local news, national news, locals papers, magazines.... please, any free time you have that you can write to anyone - please do! The more media attention to CDH, the better.

[Dawn Torrence Ireland]

A mom told me that the Today show had a interview this morning with a group called that Now I Lay Me Down To Sleep, which are photographers who take photos of cherubs for families at the hospital. Awesome organization, wish I would've seen the show today! I'll look at the video on-line later.

Here is their contact info:

Today Show
30 Rockefeller Plaza
New York, NY 10112

today@nbcuni.com

Ok, let's add them to the list!!!! :)

[Cristin Russell]

I saw the Today Show piece.... and cried my eyes out...

[Dawn Torrence Ireland]

I got a response from my e-mail to the Today show and they sent a phone number that they give out to anyone who e-mails a story. (212) 664-4249 - please call this number everyone - at least one of us will get through if we all call! :)

[BeverlyCawvey]

oh..... what about the morning show
with mike and juliet
http://mandjshow.com/

they are always doing great shows and topics!

[Dawn Torrence Ireland]

Great idea, Beverly!

[Kristin Morrow]

Dawn,

I just emailed the Today show using the email you posted. Now I have never emailed them before.. I had always snail mailed the letters because I didn't have an email address for them. Am I supposed to call them after I email them? I'm confused as to what the number is for?

[StephanieOlivarez]

I was on the phone with the number you gave Dawn and I got an answer...she transferred me and than some women came on the phone and "said please hold..." phone was disconnected!!!
Will try again Monday.

[Dawn Torrence Ireland]

If you e-mail them, they send you a phone number to call to talk to someone about your story. You can skip the e-mail and just call.

Tell your stories and remember to point out that over 2000 babies are born with CDH every year and half of them do not survive and there is little media and research for CDH. That CDH occurs as often as Spina Bifida and Cystic Fribrosis. That we're a group of over 2200 families and we're asking for their help to bring awareness to this disease. Awareness = Research. If you throw numbers at them it will make them listen a bit more. Especially shocking statistics. How many people died in 9/11? (Not belittling that at all!) - isn't that roughly the same number of babies that are born with CDH every year? Every year! And we have no media attention to help these babies.

[Dawn Torrence Ireland]

Did anyone get through on that number for the Today Show?

[BeverlyCawvey]

i got this link sent to me today from one of my friends and really thought you need to see this..
http://www.youtube.com/watch?v=zSPGVmYrjmQ

I so can understand how this mother feels....
This is my way of helping her spread this word of DMD
Hugs Beverly

[PennyCampsey]

I would love to see this get out & on TV, what's the latest with the TODAY show?
I couldnt watch the above clip b/c i'm on diaL uP :(
yall need help, let me know , i'll bug them LOL

[Dawn Torrence Ireland]

I got no response from the Today show but I will try again this week!

Our Golf Tournament Event Organizer (she's amazing!) has some connections at a broadcast company (not a show, the whole channel) that she's trying to hook up for the events and hopefully all of CHERUBS and CDH Awareness! Say prayers that something comes of this connection!

[PennyCampsey]

WOW! That would be great , I wish I had a connection, i'll have to ask around

[Megan Smith-Weedon]

I have just recently emailed Oprah about Feeding Issues and mentioned CDH in there as well. Keeping my fingers crossed for an answer. I was also thinking about getting in touch with the Today Show or Good Morning America

[PennyCampsey]

ya know, MOntel Williams seems to have a "soft spot" for kids with health issues and I think he has a good reputation, may want to keep him in mind too .

[KatieValasek]

I recently e-mailed the Oprah show with Jayden's story, but no response...I may sent it again since it was a few months ago...keep on sending them and someone should get their attention.

[PennyCampsey]

i did too a while ago with no response :(

[Damon andSharonknott]

Jenni McCarthy is on the OPRAH show tomorrow! Parents can send in questions etc.
Do we have any members who's child has CDH and Autism??????
She is also talking about Mum Warriors!

I sent in an email, said I'm a CDH Warrior Mum. Gave a brief history of Liam, talked alot about CHERUBS and CDH Awareness.

I guess Oprah's staff keep turning a blind eye to all our emails / letters but we gotta keep trying!

C'mon all you Warriors - check out Oprah's site and send in a email!!!

xx

[Chris and TracyMeats]

I sent an email too Shaz--great idea! One of theses days, CDH will get picked up by Oprah, the Today Show, ect.. I also gave a brief history of Ian, talked about Cherubs and CDH awareness. Like Shaz said, "C'Mon all you Warriers-check out Oprah's site and send in an email!!!" We all our CDH Warrior Moms and have a story to tell about our Cherubs!!

[TracyLanders]

OK..I'm behind on this one too..then again, Ericka's only two months old.

I was thinking about emailing Oprah. I think the smaller outlets, the magazines, newspapers, etc, are also great ideas and would help. Oprah, however, is the BIG TIME. She has soooo many viewers. I think trying all options would be great. I was also thinking of writing to People Magazine. They have a like a healthwatch article in every issue.

[NicolleColvin]

http://lettersforcdh.blogspot.com/ They are planning on sending letters on July 15.

[Chris and TracyMeats]

The big target for the letters for CDH is the Ellen Show and they (letter mailers) plan on mass emailing Oprah.

[NicolleColvin]

The address and email address are on the blog. I have sent this to all my family, friends and my old work. I hope there is a big response!