CHERUBS CDH Research Fund

CDH Research FundCDH 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.


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.

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!

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

2009 International Congenital Diaphragmatic Hernia Conference

Don’t forget to register!

It looks like we’ll have over 100 in attendance this year from at least 5 countries! Plus, amazing guest speakers including Meaghan Russell from Boston Children’s (who will be also be helping families to participate in CDH Research!) and Kevin Lally from the CDH Study Group to give us all the latest news on CDH research and treatments. Also, leaders from several CDH organizations and sites will be there as well!

There will be round-table discussions for parents of survivors and grieving parents, as well as CDH survivors. Entertainment for the kids, tons of Congenital Diaphragmatic Hernia awareness items and information, a pizza party on the first day and much more! It’s going to be an incredible CDH conference – make sure not to miss it!

http://www.cherubsconference.org/

“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