To everyone who participated today, whether you sent 1 or 200 Letters, we thank you. We hope that this project catches the attention of someone who is passionate about saving the lives of CDH babies and we could not have done any of this without you. All of your suggestions, research, pictures, comments, letters, envelopes, stamps, writers' cramps...it's going to pay off in a big way for CDH.
Also, several people asked if had any idea how many letters were mailed today. I don't. But, I added a non-scientific poll over to the right. I know it won't include all of the participants, but it may give us some idea of how many blue letters are circulating through the Postal Service.
Wednesday, July 15, 2009
Monday, July 13, 2009
Note About Oprah
While preparing your letters/emails for the Producers of The Oprah Winfrey Show, keep in mind that there is a 2,000 character limit to their online form.
Here's the link:
https://www.oprah.com/ord/plugform.jsp?plugId=216
Here's the link:
https://www.oprah.com/ord/plugform.jsp?plugId=216
Wednesday, July 8, 2009
Q & A
We've had a few questions and I'm sure more will come up this week, so we'll try to keep up with them and update them here.
Q: Are we sending 1 or more than 1 email to Oprah?
A: I had only planned on sending 1, but I hadn't actually considered sending more than 1. Send as many as you have time for and maybe if we flood their inbox they might take notice!
Q: What color are we using?
A: Any shade of BLUE you wish to use. For example, I have light blue paper + envelopes and metallic blue DVD mailers.
Q: How many are you sending to Ellen?
A: I am sending 100 Letters to Ellen and 20 to the Associated Press + my emails to Oprah. The idea is to flood their mailboxes with blue, blue, blue plus the CDH facts.
Q: What is going on the back of the envelopes?
A: A fact about CDH (in Jen's post below) plus the web address to the project (http://lettersforcdh.blogspot.com). You can also include the web address to your personal website/blog.
Q: Are you typing or handwriting?
A: It's completely up to you and what you have time for. I will be typing my letter, but handwriting my envelopes.
Q: If I am mailing from outside the US, what day should I mail?
A: July 15, 2009. That way they are all post-marked on the same day.
Q: Are we sending 1 or more than 1 email to Oprah?
A: I had only planned on sending 1, but I hadn't actually considered sending more than 1. Send as many as you have time for and maybe if we flood their inbox they might take notice!
Q: What color are we using?
A: Any shade of BLUE you wish to use. For example, I have light blue paper + envelopes and metallic blue DVD mailers.
Q: How many are you sending to Ellen?
A: I am sending 100 Letters to Ellen and 20 to the Associated Press + my emails to Oprah. The idea is to flood their mailboxes with blue, blue, blue plus the CDH facts.
Q: What is going on the back of the envelopes?
A: A fact about CDH (in Jen's post below) plus the web address to the project (http://lettersforcdh.blogspot.com). You can also include the web address to your personal website/blog.
Q: Are you typing or handwriting?
A: It's completely up to you and what you have time for. I will be typing my letter, but handwriting my envelopes.
Q: If I am mailing from outside the US, what day should I mail?
A: July 15, 2009. That way they are all post-marked on the same day.
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:
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!
Next - addresses...
We're mailing all of our blue envelopes on July 15th to The Ellen DeGeneres Show. Here's her address:
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.
Sincerely,
[Your Name
Mommy to Sofia, a CDH survivor
www.sofiascdhstory.com]
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:
THE ASSOCIATED PRESS
Headquarters
450 W. 33rd St.
New York, NY 10001
CNN NY
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 Snapfish.com. See mine below and Kellie's in an earlier post. The 4x6 collages are only 9 cents each! Here's the link: http://www2.snapfish.com/collageit/prd=prints
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.
- Paperandmore.com 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.
- Envelopemall.com 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).
- To contact the Oprah Show, copy and paste the letter you have composed (or just a fact about CDH if you prefer not to write a letter) here: https://www.oprah.com/ord/plugform.jsp?plugId=216
- Please be sure to include the link to the Letters for CDH project blog. http://www.lettersforcdh.blogspot.com/
- And a link to your chosen CDH blog or website.
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.
Sincerely,
[Your Name
Mommy to Sofia, a CDH survivor
www.sofiascdhstory.com]
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:
THE ASSOCIATED PRESS
Headquarters
450 W. 33rd St.
New York, NY 10001
CNN NY
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 Snapfish.com. See mine below and Kellie's in an earlier post. The 4x6 collages are only 9 cents each! Here's the link: http://www2.snapfish.com/collageit/prd=prints
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. http://www.fastpack.net/Bubble-Mailers---Envelopes-Metallic-Bubble-Mailers/Pack_of_25_CD2_7x5.75_Metallic_Bubble_Mailers
Well, I think that pretty much covers it. Happy mailing (and emailing)!
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?
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.
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!
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
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:
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.
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. 
Friday, April 24, 2009
Voting Open
I posted the one-liners I received over to the right. You can vote for as many as you like. The top 3 will be posted for us to use. Of course, if there's one you love and it's not the top 3 you are welcome to use it. This is just to get an idea of the ones that make the most impact. I suggest when writing it on your envelope or post card to actually spell out Congenital Diaphragmatic Hernia and not use CDH.
If you have more suggestions for one-liners, please continue to submit them and I will add them to the poll.
Thanks to everyone for your suggestions! I'm getting very excited about this actually happening :)
If you have more suggestions for one-liners, please continue to submit them and I will add them to the poll.
Thanks to everyone for your suggestions! I'm getting very excited about this actually happening :)
Thursday, April 23, 2009
Phrases for the postcard/envelope
We need suggestions for what to put on the postcard/envelope. It should be a short, one-liner fact about CDH. What I'm invisioning is have the phrase, then below it something like "For more information about CDH, please vist [insert your blog/website/website of choice]" If you represent a child you could also add a short line something like "In honor of Carter" I'll also need help finding the sources for true facts to include.
Some suggested phrases:
Some suggested phrases:
- Every year 800 babies will DIE from Congenital Diaphragmatic Hernia
- X number of babies will DIE today from Congenital Diaphragmatic Hernia. What have you done today? [I don't know that statistic, so I'll have to find it]
- What is Congenital Diaphragmatic Hernia?
- HALF of all babies diagnosed with Congenital Diaphragmatic Hernia will DIE
Let me know what you think and what your suggestions are. We can pick the top few and offer those up for everyone to put on their mailing.
Someone also suggested not only mailing these in bulk to a chosen few, but also make enough for your local community. They can be distributed to churches, OB/GYN offices, hospitals, etc.
Wednesday, April 22, 2009
Back by popular demand
I tried to scrap this project but recieved mass objections :)
I put it back up, but with a few changes. Comments will be moderated and approved before posting and anonymous comments will not be accepted. If you want to add a comment and can't figure it out, email me at the address above and I'll add it for you. I also removed all supporters so that this is not affiliated with anyone. Just a website with an idea.
So here's the plan. If you don't want to participate, don't. I don't want to hear why, just move on.
I put it back up, but with a few changes. Comments will be moderated and approved before posting and anonymous comments will not be accepted. If you want to add a comment and can't figure it out, email me at the address above and I'll add it for you. I also removed all supporters so that this is not affiliated with anyone. Just a website with an idea.
So here's the plan. If you don't want to participate, don't. I don't want to hear why, just move on.
- We will send BLUE envelopes or postcards--you decide on the shade of blue you would like to use
- We will randomly pick a date and I will let you know how that date is chosen
- You can decide if you want to write a letter to include or just send empty envelopes
Jen had a great idea to come up with 5 facts about CDH and post them here. You can chose the fact(s) you like and write one on the back of each envelope/postcard. If you have a blog or Carepage or CaringBridge site, you can also include a link to it.
Feel free to link to this blog on your own sites, emails, etc.
Tuesday, April 21, 2009
The Beginning...
If you are here, you have probably been redirected from our personal blog.
Here's the original post:
Apparently a lot of people agree with the "Angry" post and we got lots of ideas. I was thinking, you know how the Pro-life supporters recently began "Life/Red Envelope Project" where they send empty red envelopes to President Obama?? Why can't everyone in the CDH community pick a celebrity or someone who can help us get the word out and bring attention to the cause and pick a day to send them turquoise envelopes. We can have a standard message on the back like "half of all babies diagnosed with Congenital Diaphragmatic Hernia die" or include a letter about your story, your support, etc. Maybe even include a photo of the child you represent. Include a listing of blogs and ask for their support. We can send them to all the national newspapers, the AP, CNN, Fox News, etc. You don't need to be affiliated with one single CDH group to do this. It would be a way for EVERYONE to come together and do something TOGETHER for the single cause. You can participate even if you're not a parent or family member--if someone's story has touched you, just send an empty turquoise envelope with a message written on the back.If we come to an agreement on a single date to send these, we can inundate our targets with turquoise mail and maybe catch someone's attention.Let me know what you think. heelsgirl2001@yahoo.comI started a separate blog to keep up with the details and suggestions where we can all have a central place to go. It's still a work in progress. If you want your blog or Carepage or webpage or cause added to the list, please email me at the above email and I'll gladly add it. If you don't contact me, I won't add it only because I don't want to assume your participation. I hope this will be a project we can all collaborate on together.
Here's the original post:
Apparently a lot of people agree with the "Angry" post and we got lots of ideas. I was thinking, you know how the Pro-life supporters recently began "Life/Red Envelope Project" where they send empty red envelopes to President Obama?? Why can't everyone in the CDH community pick a celebrity or someone who can help us get the word out and bring attention to the cause and pick a day to send them turquoise envelopes. We can have a standard message on the back like "half of all babies diagnosed with Congenital Diaphragmatic Hernia die" or include a letter about your story, your support, etc. Maybe even include a photo of the child you represent. Include a listing of blogs and ask for their support. We can send them to all the national newspapers, the AP, CNN, Fox News, etc. You don't need to be affiliated with one single CDH group to do this. It would be a way for EVERYONE to come together and do something TOGETHER for the single cause. You can participate even if you're not a parent or family member--if someone's story has touched you, just send an empty turquoise envelope with a message written on the back.If we come to an agreement on a single date to send these, we can inundate our targets with turquoise mail and maybe catch someone's attention.Let me know what you think. heelsgirl2001@yahoo.comI started a separate blog to keep up with the details and suggestions where we can all have a central place to go. It's still a work in progress. If you want your blog or Carepage or webpage or cause added to the list, please email me at the above email and I'll gladly add it. If you don't contact me, I won't add it only because I don't want to assume your participation. I hope this will be a project we can all collaborate on together.
Thursday, January 1, 2009
FORM LETTER
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.
Sincerely,
[Your Name and Blog Address]
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.
Sincerely,
[Your Name and Blog Address]
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