Letters for CDH: Form letter & Envelopes

Friday, June 12, 2009

Form letter & Envelopes

To answer a few questions:

*UPDATE* Read the comments for several suggestions on envelope suppliers. I got my envelopes from Staples. They are large, invitation-size. So I will only have to fold my letter in half and slip the photo collage in the middle. I know several people have ordered theirs online and I'll see if I can get that info for you
One super mom is working on a canned/form letter for those who don't have a personal story or just don't know what to say. She'll post it soon and you may copy/paste it in emails to Oprah and/or letters to Ellen (I'm going to look into an email addy for Ellen, too)
Canada: I don't know where to send them in Canada. Any suggestions?

6 comments:

MarionJune 12, 2009 at 4:46 AM
I ordered mine from Paperandmore.com.

A-9 Aqua Lagoon Metallic 5 3/4 x 8 3/4 (50 Envelopes)Product Code: 2524-06-050Qty: 1 @ $20.99

Solid Aqua Text 60# (100 Sheets)Product Code: 3606-100Qty: 1 @ $6.99
ReplyDelete
Replies
Maxton's MommyJune 12, 2009 at 7:09 AM
I ordered mine from envelopemall.com. They were about $10 for 100 envelopes. Shipping is a little pricey but I couldn't find any in any stores around here. :-) They offer all different sizes on there ranging from about 8.95-11.95ish.
Ashley
ReplyDelete
Replies
MarionJune 12, 2009 at 1:31 PM
I found several more address if you are interested:

1. Washington Post
1150 15th Street, N.W.
Washington, D.C. 20071

2. Letters Editor
Chronicle Magazine
901 Mission St.
San Francisco, CA 94103
forum@sfchronicle.com

3. New York Times
Letters to the Editor
The New York Times
620 Eighth Avenue
New York, NY 10018

4. President Barak Obama
The White House
1600 Pennsylvania Ave NW
Washington, DC 20500

5. First Lady Michelle Obama
The White House
1600 Pennsylvania Ave NW
Washington, DC 20500
ReplyDelete
Replies
MarionJune 12, 2009 at 1:32 PM
I almost forgot this one.

Congresswoman Nancy Pelosi
450 Golden Gate Ave. –
14th Floor –
San Francisco, CA 94102

Congresswoman Nancy Pelosi
235 Cannon HOB
Washington, DC 20515
ReplyDelete
Replies
Kathryn OlmsteadJune 13, 2009 at 6:52 PM
are we sending blue envelopes with our story to CNN?
ReplyDelete
Replies
KarenJune 14, 2009 at 9:34 PM
As a fellow Canadian, I will be mailing and emailing to Ellen and Oprah too. I know we live in a different country, but I feel we watch the same televisions shows, except for our news channels.
ReplyDelete
Replies

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.