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

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.

“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

CDH Knowledge Tests on Facebook

Test your knowledge of Congenital Diaphragmatic Hernia Research and Awareness on Facebook!

How much do you know about Congenital Diaphragmatic Hernia Research?

http://apps.facebook.com/trv-cdh-resear-mwnd/

How much do you know about Congenital Diaphragmatic Hernia Awareness?

http://apps.facebook.com/trv-how-much-d-tvvj

Bought to you by CHERUBS!

Take A Stand Against Congenital Diaphragmatic Hernia

Legal Happenings At CHERUBS

Hi Everyone,

I wanted to update you on CHERUBS legal happenings….

CHERUBS had a pro bono attorney for the personal restraining order I had to take out against Elizabeth at Breath of Hope in 2006 I believe. Long story, not going into that as that’s not what this post is about.

CHERUBS had 3 pro bono lawyers from 2 law firms helping us on the trademark and a few additional tossing us advice here and there. HUGE help! But 1 law firm doesn’t have the manpower to give us anymore and the other is about to take over a much bigger project for us.

So that leaves me to deal with the trademark issue legal stuff alone. And to be honest, I have no clue what I’m doing. The stress of having 1000’s of people depend on me and CHERUBS to protect Congenital Diaphragmatic Hernia Awareness is enormous. I don’t want to mess this up. I need help. If you know of a trademark attorney who will help us, please let me know. They can be in any state as this is a federal issue. Please help if you can – these babies deserve to have the best representation to protect their rights. I am not that person to do that job, I am not qualified and I will not post that I am a legal expert or I am so intelligent that I don’t need a lawyer. I am bound to make some mistakes doing this alone (well, not alone – our Board is a huge help!), but we cannot afford to make mistakes. Taking on a trademark is not a small thing at all. This trademark is a huge ordeal, one that has to be stopped.

So that leads me to another notice. I will be taking down the timeline for a while. I will not be posting about any legal issues. I will no longer be keeping you updated on Elizabeth’s attacks or false allegations, slander, filings against CHERUBS with various agencies, etc. If you want updates on the trademark, you can go through the petition site to see the updates at the USPTO. Why, you ask?

For the first 3 years all this was going on, we kept quiet about it. Ignoring it did not help matters, it only enabled her and made her bolder. It got worse, so much worse that the restraining order was filed.

Then we went public, because other CDH parents were now being attacked and Elizabeth was filing accusations to try to have CHERUBS shut down. That was 2 years ago. You all have been pretty updated since.

But now, I am stepping back on the legal stuff and handing it all over to our new 2 pro bono lawyers to deal with. Whatever they deem necessary to do to stop the attacks, they have our blessing. Any court proceedings, filings, government intervention, criminal charges, etc – they have our blessing. 5 years of this is enough. It’s time to deal with this all once and for all and let the CDH community have some peace. We can’t thank our new lawyers enough, they are angels to help the CDH community this way!!!

And we can get back to supporting families dealing with Congenital Diaphragmatic Hernia and stop dealing with all Elizabeth’s drama and attacks. Too many CDH parents were put under the impression that CHERUBS is only about drama and stopping Elizabeth. That couldn’t be farther from the truth…. our site is drama free, we offer dozens of free services, the most CDH information on the net and with over 2700 families we offer the most support! 🙂 We’ve been here for 14 years with only one goal – helping families affected by CDH.

Now, we still have the trademark issue to deal with!!! I am still working on that video and we will release it this week. At the least, it will raise awareness! But we still need a lawyer! If you know a lawyer or you really want to help and just call lawyers and ask them to help us…. we would appreciate it so much!!!