Monday, June 15, 2009

Helpful Info + Form Letter

Hi all,

This is Sofia's Mommy making a guest post. Some of this stuff is repetitive here, since I am posting this same post on Sofie's blog. But there are some new things, including a form letter you can copy/paste to send to Ellen and Oprah, and some helpful links to make things easier.

The countdown is on for July 15th! It's time to get organized and get our letters ready. Not sure where to start? I've put together some helpful information to get everyone started...

If you're still looking for blue envelopes and/or paper, here are a few options:

  • Carter's mom, Kellie, got her blue envelopes from Staples. They are large, invitation size.

  • I ordered mine online from Action Envelope. I got the #10 Regular Envelopes (4 1/8 x 9 1/2) — in Bright Blue (Item #4260-18) $9.95 for 50. I also got the matching 8 1/2 x 11 Paper — in Bright Blue (Item #81211-P-13) $5.95 for 50. I bought 100 envelopes and 250 sheets of paper, and shipping for that was a little steep ($9.95), but I ordered a lot.

  • has these envelopes: A-9 Aqua Lagoon Metallic 5 3/4 x 8 3/4 (50 Envelopes)Product Code: 2524-06-050Qty: 1 @ $20.99 and this paper: Solid Aqua Text 60# (100 Sheets)Product Code: 3606-100Qty: 1 @ $6.99.

  • has these envelopes: Astrobright Colors 4-1/8 x 9-1/2", (No 10 Sq. Flap) Envelope 100 Pack AB 49 $8.95 and this paper: Astrobright Color Sheets 8-1/2 x 11", (60 lb. Text) 100 Pack AB11 for $9.95.

  • I haven't had time to check out Target or Walmart, because I'm an online shoppin' kinda girl, but if someone has found blue envelopes at either place or anywhere else for that matter, please comment and let everyone know where they can pick some up.

Once you have your blue envelopes you'll need to write one fact about CDH on the back of each one. Need a quick reference for CDH facts? Well, you've come to the right place!

  • Approximately 800 babies will die from CDH this year in the U.S. alone.

  • Worldwide, more than 53,000 babies will be born with CDH this year.

  • Half of all babies born with CDH will die.

  • Have YOU heard of CDH? Neither had I until [date of diagnosis].

  • Worldwide, nearly half a million babies have been born with CDH since 2000.

  • Over 1600 babies are diagnosed with CDH each year in the U.S. alone.

  • Every 10 minutes a baby with CDH is born somewhere in the world.

  • The cause of CDH is not known.

Next - addresses...

We're mailing all of our blue envelopes on July 15th to The Ellen DeGeneres Show. Here's her address:

  • The Ellen DeGeneres Show
    Attn: Fan Mail
    PO Box 7788
    Burbank, CA 91523 USA

That same day - July 15th - we will also be emailing The Oprah Winfrey Show (because they don't accept actual mail anymore).

So now that we have our letters and envelopes, our CDH facts, and the addresses to send the letters to Ellen and the emails to Oprah, what do we write? The easiest thing to do is just send your blue envelopes empty. Just seal it up, write your CDH fact on the back, and send it off. When you email Oprah, just email her a CDH fact using the link above. They'll know what it's for and that's the point. If you would like to write your own letter to include, please do so!!

If you'd like to write a letter, but aren't sure what to write, or just don't have the time to sit down and compose a letter, I've prepared a form letter you may use. You can just copy and paste it into an email or copy and paste it into a word processing program and print it off. Just remember to change or delete the personalized parts depending on who you're sending it to. Here it is:

To Oprah and the producers of the Oprah Winfrey Show [or To Ellen and the producers of The Ellen Degeneres Show],

I'm writing to you tell you about an extremely devastating birth defect known as Congenital Diaphragmatic Hernia, or CDH. To be born with CDH means your diaphragm didn't form correctly, or sometimes even at all, before birth. The diaphragm is the big muscle that separates your heart and lungs from your abdominal organs (stomach, intestines, liver, etc.).

Normally the diaphragm forms in healthy babies between 7-10 weeks gestation. When the diaphragm doesn't form, those abdominal organs are free to move into the chest of the developing baby, pressing on the heart and lungs and greatly inhibiting their growth and function. The effect of this is often fatal. Only 50-60% of babies born with CDH will survive. Yes, you read that right - a 50-60% survival rate, even with the best that medicine can offer!

Before this letter, had you ever heard of CDH before? You're not alone if you answered "no". Most people have never heard of CDH until their baby, or a friend or family member's baby is diagnosed. So you're thinking..."CDH must be rare if most people have never heard of it", right? Here's where you want to answer "no". CDH is NOT rare! Although, surviving it could be considered rare. CDH occurs just as often (1 in 2500 births or 1600 babies each year in the U.S.) as Spina Bifida and Cystic Fibrosis, but the outcome of CDH is frequently much worse. We HAVE to change that!

The median age of survival with Cystic Fibrosis has doubled in the last 25 years. The life expectancy with severe Spina Bifida (96% of all Spina Bifida cases are severe) used to end in childhood. Just in the last 20 years, individuals with Spina Bifida are living fuller, longer and more productives lives than ever thought possible and now have a near normal life expectancy. Why is this? Research, education, and medical advances make this kind of progress possible.

CDH first appeared in medical literature in the early 18th century. The first successful surgical treatment was in 1902. Now, more than 100 years later, even with all of our medical advances, the survival rate remains a dismal 50-60%.

Since current medical advances have failed to make much of an impact on the CDH survival rate, it's clear that more research is needed. It is my sincere hope that The Oprah Winfrey Show [or The Ellen DeGeneres Show] will advocate for families affected by CDH by helping to increase awareness of CDH in the public. CDH awareness leads to education about this horrible defect. Education leads to more research. More research leads to better treatments, even a cure, and ultimately to prevention.

The Oprah Winfrey Show [or The Ellen DeGeneres Show] is a phenomenal platform for bringing attention to CDH and the effects it has not only on the families of those affected, but also on the healthcare community as a whole, and in turn the entire country. CDH babies are million dollar babies, meaning treatment of babies born with CDH costs upwards of one million dollars or more. For those families in our country lucky enough to have insurance, most plans have a lifetime benefit cap of $1 million. After that, parents of a CDH baby must self-pay their baby's medical expenses, or they may apply for public assistance such as Social Security or Medicaid.

Often times, parents of a CDH baby must miss work for very extended periods. The average hospital stay for a baby born with CDH is 3 months, although some stay for a year or more. Missed work results in decreased productivity, loss of wages and/or benefits, or even the loss of their job entirely. The impact this has on the rest of the community and country is paramount.

No one knows what causes CDH to occur. It does not discriminate with regard to gender, race, or socioeconomics. It affects us all! Please join us in our fight to beat CDH by bringing it, and the stories of some of the thousands of families it has affected, into the homes of millions of Americans.


[Your Name
Mommy to Sofia, a CDH survivor]

One last thing...we'd also like to encourage you to notify your local news outlets of our project prior to July 15th. Anytime between now and the first week or so of July, contact your local media to let them know what we're doing. The more attention, the better! Here are a couple of national contacts:

450 W. 33rd St.
New York, NY 10001

1 Chase Manhattan Plaza
New York, NY 10005

All of the addresses in this post can be found in the sidebar on this blog. Hope it helps to make things easier! Kellie and I will each be sending 100 blue envelopes with letters to The Ellen DeGeneres Show on July 15th and many emails to The Oprah Winfrey Show. In all of our blue envelopes, we'll also be including a picture collage made at See mine below and Kellie's in an earlier post. The 4x6 collages are only 9 cents each! Here's the link:

Kellie and I are also sending DVDs with video footage of our little miracles to Ellen. If you would like to send DVDs as well, here are the bubble mailers we are using.

Well, I think that pretty much covers it. Happy mailing (and emailing)!


  1. Thanks for summing it up Jen! Great post :)

  2. :-) Sounds awesome... on the back of mine I put:

    Every 6 mintues a baby with CDH is born.
    my son did

    thought, that might grab some attention. I also litsted our website and this website at the bottom. :-)

    I planning to mail 300 between me and my family!!! WOOHOO!! I can't wait til they get them all.


  3. If the focus is on Oprah and Ellen, when you guys say you are sending out a lot, are you sending a lot of envelopes to Ellen and a lot of emails to Oprah or just one to Ellen and all the rest are going to other folks?
    Does that question make sense? I guess just wondering, for example, if you (Kellie or Jen) are sending out 200, are 150 going straight to Ellen to make an impact or just one going to Ellen and all the rest going to other people to raise awareness?

  4. Jen,

    Thank you for sharing your letter. I just started my letter and was feeling a little overwhelmed but excited to get on board. :-)


  5. WOW ! Thanks for all of the info. this ! I will definitely get going on it! Our son is 3 yrs. old and still having trouble gaining weight. He is back on the feeding tube, and we are researching new places to take him for help. Hopefully getting the word out will help! Thanks again....Stephanie Barbieri
    Mother of Anthony - CDH Survivor !

  6. Just wanted to encourage you to check at your local Hallmark store for (FREE or CHEAP) blue envelopes before you go out and buy some. At our store, we always have lots of extra envelopes left over for some reason and keep a drawer full at our cash register. We are more than happy to give them away for a good cause! It might be worth a try at your store!

  7. The time is near...I just wanted to ask a few questions.. Are u sending one email to Oprah or sending more than one? Also do think it is better to type the letter or hand write it? I am going to include Gabi's blog as well,maybe Ellen will take the time to look at different blogs and see what families go through. I hope this reaches them and they give CDH the attention it deserves.