So you say you just want to raise CDH Awareness? Here’s a challenge for you! ;)

Don’t care what group does what to who?

Don’t want to know the details or drama of what’s going on?

Don’t want to hear about other problems when you have enough of your own dealing with your CDH baby or grief?

Don’t care about lawsuits, threats, perjury, audits, blah, blah, blah….?

You just want to raise as much CDH Awareness as possible?!!!

That’s ok!!!!!!! 🙂 In fact, that’s GREAT!!!!!

That means that you will want to be a part of May 17th since it’s for ALL organizations and CDH families and you truly want to just raise awareness!!!!!! 😉

http://cdhsupport.org/awareness/cdhday.php

It’s not about one group, one person or even raising money. It’s about raising CDH awareness!!! It’s about saying a prayer (or making a wish) for the end of CDH. Because that’s the goal, isn’t it?

* You don’t have to go anywhere *
* You don’t have to spend any money *

Just say a prayer (or making a wish) for the end of CDH and tell at least 1 person about CDH. That’s it! How easy is that? (You can do more if you wish – visit the link for details!)

No drama. ALL organizations can participate! No trademarks. No one has to ask permission to join in. No one has to pay anyone for anything. Use the ribbon as much as you want. Sell it on anything you want for any group you want – we don’t care!!! Just raise CDH awareness!! 🙂

Too many babies are dying from CDH. Too many families are devastated. Drama and politics and money should not be stopping awareness if that’s what’s needed to help these children!

So how can you possibly say no? 😉

I hope to see everyone participating in this amazing day for these babies!!!!! 😀

Please join the event and invite your family and friends!!!!

http://cdhsupport.org/awareness/cdhday.php

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!

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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/

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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 New CDH Awareness Fund

CDH Awareness Fund – this fund will help raise awareness of Congenital Diaphragmatic Hernia through balloon releases, giving away free CDH ribbon buttons and brochures and other items. It will also cover advertising costs, billboards, video production and much more.

• A donation of $7 will sponsor 1 CDH Education Poster
  
• A donation of $20 will sponsor 100 CDH Awareness Ribbon Buttons
• A donation of $100 will sponsor a Balloon Release
• A donation of $400 will sponsor 5000 CDH Awareness Brochures
• A donation of $3000 will sponsor a billboard advertisement

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 Blog – http://cdhsupport.blogspot.com

Free On-Line Albums for CDH Families – http://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 Magnets – http://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 Stamps – http://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.

Cherubs Who Recently Received Their Wings

The following cherubs recently received their wings since our last newsletter. Please keep their families in your thoughts and prayers!

Virginia “Addison” Acord
Layla Mae Burket
Caleb Ray Cox
Grayton Karleigh Creekbaum
Hannah Alysabeth D.
Ava Rose Daher
Nicholas Robert Doades
Jack Arthur Dowling
Connie Katherine Evans
Kaden Michael Ferguson
Kaitlynn Rene Foret
Brandon Christian Frush
Gwendolynn Leigh Glover
Callie Grace Gould
Anika Faith Guertin
Celeste M Hall
Jessica Howell
Ryan Heustess Inman
Kaden Alex Kuehl
Kaylie Kathryn Marczak
Jacob Travis Meyerson
Maxwell Christopher Mocahbee
Audrey Aileen Monreal
Jacob Alexander Morrison
Jack Joseph Nelson
Emadeane Rose Owen
Corben Hudson Blake Paone
Jadyn Ryanne Paxton
Vito Robert Pensavecchia
Devin Scott Person
Brandon Daniel Peterson
Bryan Taylor Piazza
Kayla Nicole Rubio
Isaac James Santimaw
Anthony Bryce Smith
Dylan Joel Smith
Marley Jane Steingass
Nicholas Walter Treska

**this is only a list of those cherubs whose parents gave us permission to publish their names. It also includes cherubs whose parents just joined our organization in the last 4 months.

Please help us to raise Congenital Diaphragmatic Hernia Awareness and Research so that someday soon no more babies will be lost to CDH.

Right Now

Right now, as I sit here on this beautiful spring day enjoying a sandwich and working, I am so thankful for my blessings. But as I sit here, I know I take for granted that somewhere this moment is devastating to someone.

Right now, some one is hearing the words “Congenital Diaphragmatic Hernia” for the first time. And their life will never be the same.

Right now, a couple that went into an ultrasound appointment hoping to find out if their baby was a boy or girl now longer cares what gender their baby is. They just want their child to survive.

Right now, in a pediatric intensive care unit, somewhere a mom is sitting beside her newborn and trying to barter with God for her baby’s life.

Right now, a family is praying that their baby will fight off an infection and make it through the night, pacing the hospital waiting room and waiting for test results. And praying that the antibiotics don’t do more harm than good.

Right now, a family sits in the OR waiting room, waiting for news about their child’s CDH repair or chest tube placement or Nissen or G-tube placement. Hoping that their baby will be able to come off the ventilator easily after surgery.

Right now, a mom sits at home with child, crying because she is so frustrated that she can’t get her baby to eat by mouth. Again. And worried that the feeding tube she uses to make sure her child gets enough calories will always be there.

Right now, a couple tries to decide if it’s wise to take their child to a playground because they are terrified he / she will pick up a virus that could devastate their already fragile lungs. So they sit at home in isolation. Again.

Right now, a couple sits in a Ronald McDonald House, waiting for visiting hours to go see their child. And so thankful that they have a place to stay and other families to talk to. But it’s not home and it’s not a situation they ever wanted to be in.

Right now, a mom is lovingly taking care of her child’s scar; cleaning and re bandaging it. But it’s not from falling off of a bike or stumbling playing hop-scotch. It’s from a major surgery and it will be scar is that is always there, even after it’s healed.

Right now a dad is waiting for x-ray results, hoping against hope that his child hasn’t reherniated.

Right now, a family is sitting in a funeral parlor choosing a casket and trying to decide where to bury their baby that they never got to bring home.

Every 6 minutes a child is diagnosed with CDH.

The time to find the cause and prevention of CDH is right now.

ACDHO – groups / organizations that truly help and support CDH families and the CDH Community

ACDHO – The Alliance of Congenital Diaphragmatic Hernia Organizations
http://health.groups.yahoo.com/group/acdho/

Alliance of many CDH Organizations supporting families and research of Congenital Diaphragmatic Hernia. This listserv is for organization founders, presidents and CEO’s to keep each other abreast of research studies, new procedures, and organization problems. By working together as a team we can support each other, and the babies and families, in the fight against CDH.

These are the CDH organizations that truly support these babies and work together. We are a large Global CDH community working to increase research, make sure that all families have information and support and protect CDH awareness so that it belongs to all.

Each organization in ACDHO is equal, there are no leaders. Organizations / groups / sites invited into ACHO have shown high integrity in helping CDH families, offer research or support for CDH and a clear desire to work with the entire CDH community. Invitations are by a majority vote to secure that ACDHO goals remain positive, that the group works well together and that ACDHO is a safe environment to work together to help CDH families.

This listserv / alliance is *not* for individual CDH parents, survivors, etc. Please join the various groups and organizations for CDH information, support, research and awareness that offer services at the member level for CDH families.

Organizations / sites / groups that are members or who have been invited and that show a high degree of integrity in helping the CDH community and that we support are:

CHERUBS
CHERUBS Australia
CHERUBS UK
CHERUBS Mexico
A Rainbow of Hope
Jack Ryan Gillham Foundation
Olivia Raine Foundation
Cody’s Foundation
Kays Kids / Real Hope For CDH
Johns Hopkins Unnamed CDH Group
Little Lambs
The J.C. Nicholson II Research Foundation
En Stitching Hernia Diafragmatica (The Netherlands)
Ernia Diaframmatica Congenita gruppo di supporto (Italy)
Association Hernie Daphragmatique (France)
International CDH Study Group
Toronto Children’s Hospital CDH Clinic
UCSF Fetal Treatment Center
Boston Children’s Hospital / Harvard University CDH Clinic
CHOP CDH Clinic
Wisconsin Children’s Hospital
Vanderbilt Children’s Hospital
St. Louis Children’s Hospital / Washington University CDH Research
University of Florida, Shands, CDH Clinic

Please show your support to these groups and organizations who support CDH families!

Congenital Diaphragmatic Hernia Blog Ring

CDH families all over the internet are joining in on the Congenital Diaphragmatic Hernia Blog Webring. A webring connects sites or blogs with a similar interest so that readers can turn from site to site (or blog to blog) throughout the ring. Over 50 CDH blogs are currently in this ring.

To join, you can go here: http://www.ringsworld.com/cdhblogsring/join.html#2

To flip through the blogs, just click on Next or Previous under the blogs ring logo to the right of our blog.

Peyton’s Promise 5K Run/2K Family Fun Walk for CDH Research

Held by Peyton’s family for CDH Research at CHOP www.PeytonLaricks.blogspot.com

5K Run/2 K Walk for CDH Research
Held in Conjunction with Sea Isle’s Spring Fling Weekend

Saturday, May 16, 2009
Registration Time: 9:30am
Race Time: 11:00am

Adults: $25 (Pre-register by May 6th for $20)
Kids 6-12: $10
Kids 5 and Under: FREE!!!

All net profits will be donated directly to Children’s Hospital of Philadelphia (CHOP) for CDH Research

This is a certified 5K course
Awards will be provided
Shirts will be provided to the first 200 registrants

Please join us after the run/walk at The Carousel for food and family fun!

Visit http://www.PeytonLaricks.blogspot.com to download a registration form and to read about Peyton’s journey

If you are unable to make the run/walk and would still like to donate, please send checks payable to
“Peyton’s Promise”
P.O. Box 122
Sea Isle City, NJ 08243

“I Own Congenital Diaphragmatic Hernia Awareness” Video

Starring over 300 CDH families in the fight against the trademark on “Congenital Diaphragmatic Hernia Awareness” filed by Breath of Hope, Incorporated.

http://www.ipetitions.com/petition/cdhawareness/
http://ttabvue.uspto.gov/ttabvue/v?pno=92050284&pty=CAN&eno=2
http://www.cdhsupport.org
http://www.cdhresearch.org