May 17, 2009 – Congenital Diaphragmatic Hernia Day of Prayer & Education

May 17th is almost here! This day is set aside to say a prayer (or make a wish) for the end of Congenital Diaphragmatic Hernia. CDH is a devastating birth defect that has struck more than half a million babies since 2000. That’s a baby every 6 minutes diagnosed with CDH! 50% of these babies do not survive and the cause is not known. More awareness and research is desperately needed!!!!

On May 17th please take a moment to say a prayer (or make a wish) that the cause and prevention of CDH is found. There is power in prayer (and wishes)! And please tell at least 1 person about CDH to educate them about this birth defect. Just 1 person (or more!).

How else can you help?

Ask your church or other group to include info about CDH in their programs for that day. Attend an event. Wear a CDH ribbon, wear a shirt or other logo item. Hand out buttons. Release balloons. Send info to your family and friends. Post on your blogs and web sites. Post on your Facebook or Myspace account. Get more friends to join this event!

————————–————————–————

May, 2009 Events

March for Babies – May 16 in San Antonio, TX. Join CHERUBS member Karen Myers as she marches in memory of her children Kaleigh and William and raises awareness and funds for the March of Dimes.

Peyton’s Promise – May 16 in Sea Isle City, NJ to raise money for the Children’s Hospital of Philadelphia CDH Research fund. For more information you can visit http://peytonlaricks.blogspot.com

Michigan Member Bowl-a-Thon – May 17 in Flint, Michigan. You can reach Barb at bwagner@cherubs-cdh.org or 810-845-8480

Day of Prayer for CDH – May 17 around the world! You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-610-0129 or visit our blog at http://cdhsupport.blogspot.com for more information

North Carolina Get-Together for members of CHERUBS – May 17 at Pullen Park in Raleigh, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-610-0129. http://nccherubs.wordpress.com/

North Carolina Balloon Release – May 17 at Pullen Park in Raleigh, NC. You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-610-0129. http://nccherubs.wordpress.com/

————————–————————–———-

Official Congenital Diaphragmatic Hernia Awareness Ribbon buttons!

http://cdhsupport.blogspot.com/2009/04/congenital-diaphragmatic-hernia.html

100 for $10 – that’s a lot of CDH Awareness! Great project for May 17th – CDH Day of Prayer and Education!

This is the OFFICIAL Congenital Diaphragmatic Hernia Awareness Ribbon as voted on by CDH families themselves. It is not owned by anyone, there are no trademarks or copyrights to it and it is not used by any other cause. It is the CDH Awareness Ribbon recognized by 1000’s of families around the world, Wikipedia and the members of the Alliance of Congenital Diaphragmatic Hernia Organizations, which is a group of dozens of CDH organizations, sites and researchers.

CHERUBS does not make any money off of your orders for buttons, not 1 cent! We just want everyone to raise awareness!!!

You can order other CDH awareness items at http://www.cafepress.com/cherubs – a small percentage of the purchases at our cafepress store does go to CHERUBS.

It’s all about raising CDH Awareness and hoping for an end to this devastating birth defect!

Thank you, on behalf of all CDH families!

Dawn M. Williamson

CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

http://www.cdhsupport.org
http://www.cdhresearch.org
3650 Rogers Rd #290, Wake Forest, NC 27587
919-610-0129

CHERUBS Spring 2009 Silver Lining CDH Newsletter

CHERUBS latest newsletter issue is out!

Event information, 5 CDH funds, new stories of cherubs, Adopt A Hospital and much, much more!!!

http://www.cdhsupport.org/newsletter/Sp09SilverLining.pdf






CHERUBS New CDH Scholarship Fund

CDH Scholarship Fund – for CDH survivors and siblings. Families can raise money to give scholarships in honor / memory of their cherubs.

We hope to award our first scholarship in 2010.

An application form will be posted soon.

http://www.cdhsupport.org/donate/scholarshipfund.php

CHERUBS Wish List

CHERUBS subsists off of donations. Though we are trying, we currently are not receiving any grant funding and all donations go to help us continue our work in research and offering services and information to families and medical-care providers of children born with Congenital Diaphragmatic Hernia. We are run strictly by volunteers, no one gets paid for working for CHERUBS, so every penny of your donation will directly help families. CHERUBS is an IRS recognized 501(c) Non-Profit Organization and all donations are tax-deductible.

Monetary Donations
Printing Sponsors
Event Sponsors
Adopt A Hospital Sponsors
Volunteers
2-pocket folders
Postage Stamps
Printing Paper
CDH Awareness Ribbon Pins
Copies of “Stories of Cherubs”
CDH Education Posters
CDH Awareness Bracelets
Journals / Notepads*
Baby Booties*
Baby Blankets / Quilts*
Baby Caps / Hats*
White / Natural Cotton Tote Bags*
Chapsticks*
Small bottles of lotion*
Small bottles of hand sanitizer*
Travel Kleenex*
Disposable Cameras*
Pens*
Newborn Button up T-Shirts*
Restaurant Vouchers*
Gas Cards*
Kid’s Books*
Puzzle Books*

*for Gabe’s Gifts bags for new and expectant parents

If you can donate any of these items, please send them to:

CHERUBS
3650 Rogers Rd. #270.
Wake Forest, NC 27587
USA

Donations are tax-deductible and much appreciated to help us continue to help CDH families!

Caleb’s Birthday CDH Information Packets


To celebrate her son Caleb’s first birthday on November 5, 2008, Leah Koehn from Wyoming created 35 doctor and parent CHERUBS packets to give to hospitals and doctors in the Steamboat Springs, CO and Denver, CO area. Caleb was born at 39 weeks with an undiagnosed left congenital diaphragmatic hernia. Caleb had a successful hernia repair and is now healthy.

Resources for Families Dealing With Congenital Diaphragmatic Hernia

I’ve been told today in several ways that our resources are hard to find – since so many new and expectant families had no idea we offer so much! So I wanted to make a list of what we offer and a link to the services to make it easier:

Our Web Site – more information about CDH than anywhere on the net with 1000’s of pages! http://www.cdhsupport.org

All About CDH – information, diagrams, videos and more. http://www.cdhsupport.org/cdh/index.php

CDH Forums for Families – over 100 posts each day, 100’s of topics. Get advice, help, info and support 24/7 from parents who have been in your shoes. Membership is FREE and it is all confidential. http://www.cdhsupport.org/members

CDH Parent Reference Guide – simple, easy to understand information on CDH written for parents whose babies were newly diagnosed. http://cdhsupport.org/members/dload.php?action=file&file_id=32

CDH Brochure – in 4 different languages http://cdhsupport.org/members/dload.php?action=category&cat_id=10

CDH Research – research library, survey results and coming very, very soon an interactive CDH research survey for parents and researchers http://www.cdhresearch.org

Newsletters full of stories, news and much more –http://cdhsupport.org/newsletter/

International CDH Conference – members from several organizations and CDH researchers coming together http://www.cdhconference.org

Congenital Diaphragmatic Hernia Day – May 17, 2009 http://cdhsupport.org/members/portal.php?topic_id=3012

CDH Events – tons and tons of events and get-togethers and fundraisers around the world http://cdhsupport.org/members/viewforum.php?f=184

State & International Representatives – find local support. http://www.cdhsupport.org/volunteers/reps.php

On-Call Parents – need to talk to someone? They are on-call for you. http://www.cdhsupport.org/volunteers/oncall.php

Videos of Cherubs – dozens of videos of cherubs, events, and more. http://www.youtube.com/user/cdhsupport

CDH Photo Albums – 100’s of photos of children and adults born with CDH http://cdhsupport.org/members/album.php

CHERUBS Adopt A Hospital Program – help us to help families around the world by adopting a hospital to provide materials to for new CDH families http://cdhsupport.org/members/portal.php?topic_id=3013

Our Bloghttp://cdhsupport.blogspot.com

Free On-Line Albums for CDH Familieshttp://cdhsupport.org/members/album_personal_index.php

Free Blogs for CDH Families – keep your family and friends updated with these free blogs on our CDH informational site so they can also research! http://cdhsupport.org/members/weblogs.php

CDH Blog Ring – group of CDH blogs written by parents http://www.ringsworld.com/cdhblogsring/home.html#2

CDH Awareness Ticker – drop by and see how many babies have been born with CDH since 2000 as a new baby is diagnosed every 6 minutes somewhere in the world. http://cdhsupport.blogspot.com/2009/04/over-half-million-babies-born-with.html

Research Library – add your links or view the links of others to CDH research articles and sites. http://cdhsupport.org/members/links.php

Personalized CDH Awareness Ribbon – Order a personalized ribbon with your cherub’s name, date(s) and photo – send them to ribbons@cherubs-cdh.org

“Stories of Cherubs” Vol. I & II – full of stories of 100’s of families who have dealt with CDH http://www.cafepress.com/cherubs/6191951

CDH Calender – featuring 100’s of faces of children born with CDH http://www.cafepress.com/cherubs.337095355

Congenital Diaphragmatic Hernia Awareness Items – including Clothes, Bibs, Maternity Shirts, Totes, Journals, Posters, Hats, and much, much, much more – http://www.cafepress.com/cherubs

CDH Awareness Ribbon Car Magnetshttp://www.supportourribbons.com/m/160153 Also available in a larger size

CDH Awareness Ribbon Buttons – just 18 cents each!!!! http://cdhsupport.org/members/viewtopic.php?t=3001

CDH Awareness Bracelets – pink, blue and yellow silicone bracelets that say “CDH Awareness” http://cdhsupport.org/members/viewtopic.php?t=2436&start=165

CDH Awareness Postage Stampshttp://www.zazzle.com/cherubs

CDH Awareness Mailing Labels – download and print for free! http://cdhsupport.org/members/dload.php?action=category&cat_id=17

Random Acts of Kindness CDH Awareness Cards – there is no nicer way to raise awareness! http://cdhsupport.org/members/dload.php?action=file&file_id=85

CHERUBS Facebook Group – talk to other CDH parents on Facebook http://apps.facebook.com/causes/44070/11273893?m=6d54c0aa

CHERUBS Myspace Page – talk to other CDH parents on Myspace http://www.myspace.com/diaphragmatichernia

More Downloadable Info – info on where donations go, our non-profit paperwork, older newsletters, event brochures and more! http://cdhsupport.org/members/dload.php

This is just a small list of what we offer and doesn’t even include most of our awareness activities and projects. Drop on by our site and take a look at how CHERUBS has been helping families deal with Congenital Diaphragmatic Hernia for 14 years.

Over a half Million Babies born with Congenital Diaphragmatic Hernia Since 2000


This is a still capture of the counter. Pick up the actual functioning counter on our blog at http://cdhsupport.blogspot.com


If you like the CDH stat counter on our blog, you can pick up the blogger / blogspot code at http://www.cdhsupport.org/graphics/cdhstatcounter-blogger.txt

HTML code can be downloaded at http://www.cdhsupport.org/graphics/cdhstatcounter-html.txt

We’re still working on coding for Facebook, Myspace, Live pages and WordPress. If you want to help on that code, please let us know!

In the United States:

There are approximately 6 million pregnancies every year throughout the United States:

* 4,058,000 live births
* 1,995,840 pregnancy losses

1 in 2500 babies is diagnosed with CDH. That means over 1600 babies are born with Congenital Diaphragmatic Hernia EVERY YEAR in the United States Alone.

With a 50% survival rate, 800 of those babies will die.

Today, and every day, at least 4 families will be devastated with the news of CDH.

Worldwide:

The World Census Bureau estimates that in 2008 over 350,000 babies are born in the world every day = 147 babies will be born with CDH every day.

According to the IDB (International Database) from the U.S. Census site, 257 people are born every minute globally. That means that somewhere in the world, every 10 minutes a baby is born with Congenital Diaphragmatic Hernia. Every 10 minutes.

1 CDH baby every 10 minutes.

These numbers add up to over a half million CDH babies since January 1, 2000!

No one knows the cause of CDH.

No one knows how to prevent CDH.

Hardly anyone knows what CDH is unless someone you love has been affected by it.

CHERUBS and the CDH Study Group are the only 2 organizations actively researching Congenital Diaphragmatic Hernia on a global platform. CHERUBS is the only organization offering global support to families of children born with CDH, with members in 38 countries.

What can you do to help?

Raise awareness. http://www.cdhsupport.org/awareness, http://www.cafepress.com/cherubs, http://www.zazzle.com/cherubs

Donate to research. http://www.cdhresearch.org

Participate in events. http://www.cdhsupport.org/members/viewforum.php?f=184

Help support CDH families. http://www.cdhsupport.org

References:

http://www.americanpregnancy.org/main/statistics.html
http://www.worldpopulationbalance.org/pop/metronome.php
http://www.census.gov/ipc/www/idb/