Tuesday, September 2, 2008

CDH Research Fund

A fund has been set up for raise money for CDH Awareness at

http://www.firstgiving.com/cdhresearch

You can donate there in honor / memory of a cherub or through PayPal at http://www.cdhresearch.org Or click the donate button below:













This fundraising page is to help raise 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 $500 per month. 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. $6000 per year is needed solely for the database design and secure hosting, which is needed to follow federal privacy and HIPPA laws.

http://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 treatment 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.

Looking for support dealing with Congenital Diaphragmatic Hernia? Make sure to visit CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

Like the CDH logo or want to purchase some CDH Awareness items? Make sure to visit CHERUBS Store where you can buy 100's of items with the Official Congenital Diaphragmatic Hernia Awareness Ribbon, the CDH logo, the CDH Anatomy shirt and much more.

Congenital Diaphragmatic Hernia Awareness Trademark

A fund has been set up to cover the fees for opposing the trademark of "Congenital Diaphragmatic Hernia Awareness"

http://www.firstgiving.com/cdhawarenesstrademark

This fundraising page has been started to pay for the USPTO trademark opposition fees of $300. This page has been started because general donations made to a charity should not be used to fight such legal battles that should not have to be fought in the first place. CHERUBS refuses to use donations made in good faith in honor or in memory of a child to combat a trademark application filed to prevent all CDH families from raising Congenital Diaphragmatic Hernia Awareness freely. Our lawyer is working against this trademark pro bono.



2008 Has Been A Busy Year At CHERUBS!

So far in 2008, we've done a lot at CHERUBS:

CDH Awareness Video

2008 International Member Conference was a huge success!

CDH Street Signs Awareness Program begun

CHERUBS On YouTube

CHERUBS Facebook CDH Cause

CHERUBS Facebook CDH Group

CHERUBS Facebook Goodsearch Group

CHERUBS on Change.org

Fight Against Congenital Diaphragmatic Hernia at Change.org

CHERUBS on firstgiving.com

CHERUBS is chosen out of 55,000 charities to be goodsearch.com charity of the day

Customizable CDH Awareness Ribbon is created

Let Me Tell You About CDH Logo is created

Ask Me About CDH Logo is created

CDH Awareness Keychains

Angel Ball was an amazing event

Golf Tournament was so much fun

ATV Rally

CHERUBS on Zazzle.com

CHERUBS Random Acts of Kindness Cards

New CDH Logo For Teenagers

Ohio Member Picnic once again successful!

Michigan Member Get-Together

Congenital Diaphragmatic Hernia Research Site

Congenital Diaphragmatic Hernia Educational Items added to cafepress

Anatomy of CDH graphics freely distrubted

"CDH Awareness Platform" for Beauty Pageants started

"Take A Stand Against CDH" campaign started

Oklahoma City, OK newspaper "The Oklahoman" article

Raleigh / Durham / Chapel Hill, NC News 14 television interview

Durham, NC "Herald-Sun" newspaper article

Rochester, IN newspaper article

National ATV Magazine article

Carolina News Wire press release

3 more Advisory Committee additions

1 more Volunteer Coordinator

New Volunteer Software Installed



Also coming in 2008:

Stopping Trademark on "Congenital Diaphragmatic Hernia Awareness"

2008 Conference Speech Videos

2008 CDH Research Survery Results

CHERUBS name changed to CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

CHERUBS becoming Incorporated

"Cooking with Cherubs" Cookbook Vol.III

"Stories of Cherubs" Vol. II

2009 Cherubs Calendar

Happy Birthday Jeremiah Car Show

Take A Stand Against CDH

Parents and Medical Professionals around the world taking a stand in the fight against Congenital Diaphragmatic Hernia

http://www.youtube.com/watch?v=JtOElZcUyVM

Please forward, post, add to your profile, site or blog.... feel free to use this video anywhere to raise awareness of CDH

Thank you!
Dawn

http://www.cdhsupport.org

Coming Soon - Congenital Diaphragmatic Hernia R

CDH Research Site coming soon!


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.

Customized CDH Awareness Ribbon Items at Cafepress!




We are taking our customized Official Congenital Diaphragmatic Hernia Awareness Ribbon graphics and putting them on cafepress so families can raise awareness in honor / memory of their cherubs! If you would like a free personalized CDH Awareness Ribbon, please send your child's photo, name and date(s) to membership@cherubs-cdh.org with "CDH Awareness Ribbon" in the subject line.

We have over 75 more ribbons to add with requests coming in daily but here are a few already up on our store at http://www.cafepress.com/cherubs/5842791

Click on the thumbnails below to view sharper images.


New Congenital Diaphragmatic Hernia Education Items!

New CDH anatomy / education items in our cafepress store! Below are just a few of the over 100 new items. These are great tools to help explain to family and friends about Congenital Diaphragmatic Hernia, as well as great awareness items!

http://www.cafepress.com/cherubs/4814131





CDH & Cherubs in the Media!

LOTS of CDH Awareness going on this summer!

Oklahoma City, OK newspaper "The Oklahoman" with Dawn, LaneyKate Daniels & family and the CDH Study Group (September, 2008) - http://newsok.com/parents-of-children-with-congenital-diaphragmatic-hernia-cdh-warn-world/article/3290587

Raleigh / Durham / Chapel Hill, NC News 14 television interview with Dawn (July, 2008)- http://news14.com/content/local_news/triangle/597536/group-brings-attention-to-disease/Default.aspx

Children's Hospital, Alabama with Caden Parker (July, 2008) - Radio Telephone for Children's Hospital

Durham, NC "Herald-Sun" newspaper article on CHERUBS Angel Ball (July, 2008) - http://heraldsun.southernheadlines.com/features/columns/ray/104-976419.cfm

Middleton, OH "Middleton Journal" newspaper articles on Henry English (June, 2008) - http://www.middletownjournal.com/news/content/oh/story/news/local/2008/06/01/mj060108mccrabbhenry_a1.html
and http://www.middletownjournal.com/n/content/oh/story/news/local/2008/06/01/mj060108mccrabbhenry_inside.html

Arkansas, Jack Ryan Gillham Foundation in the local paper and TV (July, 2008) - http://www.4029tv.com/video/16851917/index.html and http://www.nwarktimes.com/adg/News/230536/

Carolina News Wire press release (July, 2008) - http://carolinanewswire.com/news/News.cgi?database=001news.db&command=viewone&id=262&op=t

Plus several more articles and interviews that will be out soon!

Stories of Cherubs Vol. II



"Stories of Cherubs Vol. II" coming out in time for the holidays! To submit your child's story you must be a member of CHERUBS & give publishing permission on your membership form. Then just e-mail your story and photo to membership@cherubs-cdh.org with your cherub's name and date(s) in the subject line. Submission deadline is October 15th!

You can still purchase "Stories of Cherubs" on our cafepress store at: http://www.cafepress.com/cherubs.91971767



Over 500 pages and 300 stories and photos of children born with Congenital Diaphragmatic Hernia. Families tell tales of what life is like to have a child with CDH and to sometimes lose those children. Heartfelt and honest, these stories are a wonderful tribute to cherubs and their families. This book is must have for family members and friends who struggle to understand CDH as well as wonderful guidebook for new and expectant CDH parents.

Monday, September 1, 2008

CHERUBS 2008 International CDH Conference

Our 2008 conference for families affected by Congenital Diaphragmatic Hernia was a huge success! We had amazing guest speakers from Boston Children's and Toronto Children's. Our families learned so much - talked, cried, laughed and it was just an incredible experience. Videos will posted soon, including video and slideshows from the doctors! For more information, check out our web site at http://www.cherubsconference.org