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 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 Family Assistance Fund

CDH Family Assistance Fund – A majority of this fund will go to help families with travel expenses such as airline tickets and gas. It will not go to lodging because CHERUBS highly recommends the *free* lodging available at Ronald McDonald Houses. Families will submit confidential applications to assistance and a committee will consider each request.

Our goal is to make sure that all CDH families can afford to get to their cherub’s medical center and have a place to stay so that they can concentrate on their children instead of travel worries. We hope to assist a family through this fund by this fall.

The remaining small percentage of this fund will go to Gabe’s Gifts, a new program that helps new and expectant families by supplying them with items needed. This project will start by September, 2009!

• $20 can cover 1 gift bag for a CDH family from Gabe’s Gifts
  
• $20 can cover 1 family’s gas for a day
  
• $50 will cover a gas card for a family going back and forth to the hospital
  
• $500 can cover a plane ticket for 1 family member

Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs’ ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth.

Every patient diagnosed with CDH is different. Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available. There are many surgical procedures and complications that may or may not occur with each individual, including in utero surgery.

Roughly 50% of babies born with CDH do not survive. Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems. A few of the survivors suffer from severe long-term medical issues.

CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.

http://www.firstgiving.com/cdhfamilyassistancefund

CHERUBS CDH Research Fund

CDH Research Fund – to pay for the $1000 a year cost of research database hosting and to raise money for research organizations such as the International CDH Study Group – unless a request is made to go a specific hospital. The CDH Study Group is a collective group of over 30 hospitals around the world specializing in CDH research. We chose to support groups like this one because we know that every cent will go directly to research on Congenital Diaphragmatic Hernia and research will be brooder and more advanced when collaborating with dozens of hospitals and researchers together.

CDH Research Site – funds for the software needed to create and maintain secure database hosting for our CDH research database. This database includes information on over 2400 CDH patients and medical care providers – offering a very unique opportunity to research the cause, prevention and best medical treatments for Congenital Diaphragmatic Hernia. Such software and off-site security that is needed for an undertaking this large costs approximately $1000 per year (thanks to a grant from QuestionPro). Rather than take funds out of our very small operating cost budget, we are appealing to members and the public to help fund this research venture. Site maintence, design and statistics is being done for free by volunteers. $1000 per year is needed solely for the database design and secure hosting, which is needed to follow federal privacy and HIPPA laws.

www.cdhresearch.org

This web site is a project of CHERUBS – The Association of Congenital DIaphragmatic Hernia Research, Awareness and Support. It is supported by volunteers and funding through CHERUBS, a 501(c)III Non-Profit Organization. Donations and sponsorships are greatly encouraged and appreciated to help keep this CDH Reseach site continuing, growing and leading the search for the cause and prevention of CDH. CHERUBS Congenital Diaphragmatic Hernia Research Survey is the combined efforts of over 2000 CDH families and medical professionals. It takes information on the medical, family and exposure histories of CDH patients and compares data to look for the cause, prevention and better treatement of Congenital Diaphragmatic Hernia. Participation is voluntary, anonymous and free to all CDH families and medical staff. Data can be tabulated live for research and reference purposes.

Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when the diaphragm does not fully form, allowing organs to enter the chest cavity preventing lung growth. CDH strikes 1 in every 2500 babies, of all races, religious backgrounds, and financial status – no matter how well the prenatal care.

Nearly 4 million babies are born in the United States each year. This means that approximately 1600 babies are born with CDH each year – in the U.S. alone! There are more babies born with CDH than with Cystic Fibrosis (1 in 3900) and it’s almost as common as Spina Bifida (7 in 10,000) – yet, you probably have never heard of it until it affected someone that you love. CHERUBS is working hard to raise Congenital Diaphragmatic Hernia Awareness!

The cause of Congenital Diaphragmatic Hernia is not yet known.

50% of babies born with CDH do not survive and sometimes the remaining 50% have to overcome very difficult medical complications. Many CDH babies have minor lasting health problems such as feeding aversions, asthma, scoliosis, or short-term oxygen dependency. A small number have major lasting health problems such as ventilator dependency, brain damage, or hearing problems. Many patients have no long-lasting medical problems at all other than a scar from the CDH repair. CDH can occur alone or with other birth defects, and rarely, it occurs as part of a syndrome.

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 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

CHERUBS New CDH Family Support Fund

CDH Family Support Fund – this fund covers all support services, including our web sites, newsletters, conferences, New Member Packets, get-togethers and other general operating costs. CHERUBS does a lot for CDH families and the CDH community and we incur quite a few costs during so. Just 1 newsletter mailing is now over $3000 for printing and posting with so many members. Our conferences are also expensive. Our monthly expenses are several hundred dollars for ink, postage, web site hosting fees, fax number, etc. It takes a lot to fund an organization with almost 3000 members. Remember, no one at CHERUBS gets paid and we have no office so every penny directly helps CDH families. And all of our services are FREE so we do charge membership fees. Only 2% of our members donate annually so we depend on public donations quite a bit. And the occasional grant as well.

• $1 will cover 1 2-pocket folder
• $1 will cover 1 copy of our Parent Reference Guide
• $5 will cover 1 newsletter printing and US postage
• $10 will cover 1 New Member Packet
• $50 will cover our annual non-profit state registration fee
• $50 will cover envelope costs for 1 year
• $50 will cover our volunteer software for 1 month
• $100 will cover staples, paper clips, glue, etc for 1 year
• $100 will sponsor 1 hospital with CDH info for 1 year
• $125 will cover web site hosting fees for 1 month
• $300 will cover 1 local get-together
• $400 will cover printing 5000 brochures
• $500 will cover outside programming fees
• $2000 will cover non-newsletter postage fees for 1 year
• $3000 will cover 1 newsletter printing and mailing
• $5000 will cover 1 international member conference

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!

CHERUBS Celebrity Spokesperson – Meet Rene Couret

Rene Couret is a plus-size model, actress, entrepreneur and student, currently residing in Southern California. She is studying Musical Theatre and American Sign Language. In her spare time, Rene runs several websites including a CDH birthing options activism site. She also loves giving advice on vegetarian healing diets, whole food nutrition, and self-image issues. Rene has appeared in the movie “Phat Girlz”, appeared in many stage productions and is very involved in Hollywood’s “Love Your Body Day”.

Rene’s son ,Gregory Zion Couret ,was born August 3, 2004 with a Morgagni (or right-sided) Congenital Diaphragmatic Hernia. When Gregory died at six months of age, it was a bittersweet experience. Rene felt it was her greatest source of pain but he was also her greatest source of inspiration.

When Gregory was born he was rushed right away to the NICU. He had a right-sided hernia, which causes more trouble due to the liver piercing into the right lung and pushing over the heart. He was only breathing about 30% on his own and he needed the assistance of a Ventilator in order to keep him alive. He was placed on ECMO for one week and had emergency surgery to fix his diaphragm after a small brain bleed. He had six surgeries and was taken off and on breathing support more than ten times. In the end his lungs just could not handle anymore and his heart gave up on him. My son was supposed to come home right around Thanksgiving in 2004, but he got an infection and had to heal all over again. My family and I prayed hard, stayed up nights visiting him, and had as much faith as we possibly could. He went through ups and downs and fought his best, but by the time he was six months old he passed away. After my Gregory passed away, I felt as if something was wrong with me and I thought I did something wrong. Maybe I could have done more, or maybe it was karma sneaking up to bite me. I went through many ups and downs in my mind before I could just accept what happened and move on. It is still a process and two years later I have days when the thoughts cripple me and there are times where I feel that it never even happened.