Letters for CDH: May 2009

Thursday, May 21, 2009

Sample Photo Collage

I used our images as the "Guinea Pig" to create a photo collage. These are 4x6 sized images and are 9 cents each. That's $9.00 for 100 if you are doing 100 letters. I'm printing links to this project (http://lettersforcdh.blogspot.com/) and my chosen websites on white address labels and putting them on the back of each collage. The collage will go in the envelope along with the letter that I've written about Carter's journey. Thanks for the great ideas. Keep them coming b/c the more of an impact we can make, the better chance we have of capturing someone's attention.

Tuesday, May 19, 2009

Photo Collage

Another genious contributor sent this idea to include in your letters:
You can order 4x6 photo collages from Snapfish. You can include up to 20 photos and a title & they start at 9 cents each. You can also search the internet for coupon codes for Snapfish for discounts and free shipping.

Monday, May 18, 2009

Videos

A fellow CDH mom sent me a suggestion this morning that I think is a fabulous idea. Many of us have video montages of our babies detailing their story through pictures. She suggested that we send these videos to Ellen (and whoever else you wish to mail to) along with our letters. I am sending 100 letters and will send a few copies of our video montage as well. I found recordable DVDs at Target (5 of them for $5) and this mom found blue DVD mailers online. If you are able to include a copy of your story this way, it's just another way to make a huge impact.

As a side note, I bought my blue paper and invitation-sized envelopes from Staples if you are looking for a supplier. Several people have emailed me that they have found online suppliers as well.

Please let me know if you have any questions or need any help. Less than 2 months to go!

Tuesday, May 5, 2009

Great Question!

We will be mailing on the 15th :)

Mail to Ellen & Email to Oprah

From what I'm hearing, the general idea is that we should send our snail mail to Ellen and emails to Oprah. A great idea was to mention in your email to Oprah that we're mass mailing Ellen.

So here's what we have so far:

Blue envelopes
Message written on the back + include a letter about your story if you wish
Mail to Ellen DeGeneres
Email same message to Oprah
Mailing and emailing occurring on July 15, 2009
Contact your local news outlets prior to July 15th to tell them about the project, if you want to

Monday, May 4, 2009

Planning

After discussions with many of you, I think it's best if we choose a single target right now (two at the most). It will make a bigger impact to send all of our letters to one person than sending a few letters to many people. I was originally thinking Oprah, but according to Oprah.com she no longer accepts unsolicited mail. So, we need to choose someone else. Another option would be on June 15, when we send out our envelopes, we ALL send a show idea on Oprah's website to this link: https://www.oprah.com/ord/plugform.jsp?plugId=216. I know many of us have written her before, but if we all do it on the same day, maybe someone will take notice.

So...who's the celeb target? The Associated Press has a mailing address, so that's an option. I looked into ABC News (Good Morning America; 20/20) and they do not accept unsolicited ideas and materials. I also have a mailing address for Ellen DeGeneres.

While you are at it, if you want to drop them off in your local community (churches, schools, OB offices, small hospitals, etc.) go ahead! Get the word out there!!

Also, someone suggested that we all contact our local news outlets now and inform them of the project. It would be great to get some coverage prior to the event. I am planning to send our local newspaper an email and include the link to this site plus the letter I'm writing for this project. If you have a personal website/blog or one you are vested in, include it so they can get a personal sense of the effect CDH has on families. Since I'm in NC, I have the information for the News & Observer if any NC families are interested:
The News & Observer
215 South McDowell StreetP.O. Box 191
Raleigh, NC 27602
Main: (919) 829-4500
Customer Service: (800) 522-4205

I would love for each of you participating in this project to take photos of you preparing/mailing your envelopes. Send them to me at heelsgirl2001@yahoo.com and I will post all of them here (with a link to the website you choose to highlight if you'd like).

Don't forget to vote on your favorite one-liners in the poll.

We Have A Date!

To make it a randomly chosen date, I wrote the months July through December on paper and the numbers 1 through 31. I dipped Lucy's paw in blue paint (non-toxic, of course!), threw the papers in the air, and let her "choose" the date. She stepped on July and 15 first so that's the date for mailing out our letters.

I will make a post in the next few days with addresses to send them to. Until then, start working on your envelopes and letters (if you're going to include one). There are several sites online that offer blue envelopes in bulk--any shade of blue you can image.

To our watchers from Canada and Mexico~~please email me or leave comments here with the addresses of those we should target in your countries.

the project

I started this blog after I posted an angry rant over yet another child losing his fight against Congenital Diaphragmatic Hernia (CDH) and found out that many of you agree.

We started getting great ideas from lots of people and I thought this would be a place we can come to share our ideas and come up with a plan.

The basic idea is to send out as many letters in blue envelopes as you can with a message on the outside of the envelope about CDH. The letters will be mailed out on July 15, 2009 to the Ellen Degeneres Show and we will also email the Oprah Winfrey Show that day. You may send letters to anyone else you wish to, but please concentrate on these two goals so that we can make a BIG impact. The more blue envelopes one person recieves, the better.

I think it will be therapeutic for families to write about their children. For those who don't want to write a letter but want to participate, you can send lots of empty envelopes with a message across the back. The canned messages can be found in the poll below. Use any of the messages you wish, keeping in mind the most popular ones will likely get the most attention.

If 200 families send just 20 letters each, that's 4000! Think of the number you can send, your friends, your coworkers, doctors, families...it makes me giddy to think about our recipients getting thousands and thousands of blue envelopes dumped on their desks all on the same day! Strength in numbers.

If it doesn't work this year, we'll do it again next year, and the year after...until someone finally takes on CDH as their cause.

what is cdh?

Congenital Diaphragmatic Hernia or CDH

Congenital = born with
Diaphragmatic = involving the diaphragm
Hernia = condition where organs/muscles protrude through a hole they aren't supposed to

CDH occurs in approximately 1 in 2,500 live births (http://www.chop.edu/consumer/jsp/division/generic.jsp?id=81164). It is as common as Cystic Fibrosis and Spina Bifida. Yet, until they have a child diagnosed with it, most people have never heard of CDH.

HALF OF ALL BABIES DIAGNOSED WITH CDH WILL NOT SURVIVE.

The diaphragm is a muscle that facilitates breathing and separates the abdominal organs below it, from the lungs and heart above it. When the diaphragm does not fully close/develop, around two months in utero, the intestines, stomach, liver, and/or spleen develop into the chest cavity. This presents a life-threatening situation because the abdominal organs take up the space where the lungs and heart should be developing.

This underdevelopment of the lungs is called pulmonary hypoplasia. Healthy lungs have millions of small air sacs (alveoli), which resemble a balloon filled with air.With pulmonary hypoplasia, there are fewer air sacs than normal, the air sacs that are present are only able to partially fill with air, and the air sacs deflate easily due to a lack of a lubricating fluid called surfactant. When these conditions are present, the baby may be unable to take in enough oxygen to stay healthy [and live].(http://www.cincinnatichildrens.org/health/info/chest/diagnose/diaphragmatic-hernias.htm)

These babies are immediately intubated, allowing a ventilator to breathe for them. The very sick babies will require ECMO, which is a heart/lung bypass machine. They will undergo repair surgery only when they are stable, and if they are strong enough to survive it, will go on to have many years of doctor's appointments, hospitalizations, reherniations, surgeries, struggles to learn to eat, occupational therapy, physical therapy, and speech therapy. GERD (gastroesophageal reflux disease) is commonly diagnosed in CDH children and can cause them numerous long-lasting problems such as feeding aversions, pain, esophageal erosion, vomiting. They are oftentimes labeled as failure-to-thrive due to their inability to take in enough calories to properly grow.

Most parents of CDH children will not hold their baby for the first time until several weeks or months after birth. Many times, the first chance these parents will hold their child will be when the child is dying in their arms.CDH is a devastating diagnosis and the survival rate has not improved much in many years.