Tuesday, September 2, 2008

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
















CHERUBS Angel Ball

Below is just a preview of the videos that we're working on from the Angel Ball. To see more photos and video check out the Angel Ball site at http://www.cherubsangelball.org It was an AMAZING night!!!! We're already planning our 2009 Angel Ball so stay tuned!

CHERUBS Golf Tournament

Our good friend, Bob the Blade, from 96 Rocks posted this on his blog "If I never do anything else in this life, in the end I will have this...I was put in a position on this earth to be able to get the word out...to get the word out for people trying to do good things like these crazy cats in Henderson, the Cherubs. The leader of this group lost her baby boy to CDH and she supports and fights every day for the people that have had this happen to them. There's just not much better than that. Except shooting even par. OMG I am so funny." He is an amazing guy and we adore him. Thank you Bob for putting together the great videos of the golf tournament and for M.C.'ing!




New Anatomy of Congenital Diaphragmatic Hernia Graphics

he following graphics are created by CHERUBS but free for public use!






Make sure to check out the 100's of Congenital Diaphragmatic Hernia Awareness items on our cafepress store at http://www.cafepress.com/cherubs !

Friday, August 15, 2008

Threats against the use of "Congenital Diaphragamtic Hernia Awareness" have already happened

Many (100's) of people have been forwarding msg's and e-mails about one organization filing to own the trademark of "Congenital Diaphragmatic Hernia Awareness". One such msg is below.

That organization's response is that they wouldn't police how Congenital Diaphragmatic Hernia Awareness is used. That does not make it ok for them to own the rights to awareness to a disease that hurts and kills 1000's of babies around the world every year. And it is a lie. This organization began threatening to sue over the use of Congenital Diaphragmatic Hernia last year, without grounds, without owning the trademark that was applied for on April 1st of this year. This organization still does *not* own the trademark of Congenital Diaphragmatic Hernia Awareness. Below are examples of how little this organization can be trusted with something this important and how no organization / individual / entity should have power over the awareness of a birth defect or disease. THIS harassment and types of threats will happen to every other CDH organization and families if this trademark is granted. Please help us to stop this from happening. 6 CDH organizations, the world's top CDH surgeons, and over 2000 people are standing together against this injustice. Please stand with us.

8/31/08 - An "anonymous" e-mail, the same account used to send the e-mail about the trademark that alerted us, was sent to CHERUBS President with threats of personal blackmail and lawsuits if CHERUBS did not remove this petition and any references to "Congenital Diaphragmatic Hernia Awareness" before September 16th.

8/12/08 - An "anonymous" e-mail was sent to CHERUBS to brag about the trademarking of "Congenital Diaphragmatic Hernia Awareness". 7 organizations immediately went into action to stop this trademark.

1/4/08 - Yahoo.com representative calls CHERUBS office about a trademark complaint made by Elizabeth Doyle-Propst, President / CEO of Breath of Hope, Inc., asking that CHERUBS be removed from Yahoo's search engine and CHERUBS yahoo groups be taken down. http://cdhsupport.org/elizabeth/KMM88030796V34444L0KM.txt

12/19/07 - Elizabeth Doyle-Propst, President / CEO of Breath of Hope, Inc. sends a formal complaint to Cafepress.com, where CHERUBS hosts an on-line store of fundraising and awareness items. http://cdhsupport.org/elizabeth/FW_LTK11805711847Xa.txt

10/23/07 - Stacy Dinay Everett Harding, Vice-President of Breath of Hope, Inc. sent a letter to CHERUBS lawyer accusing our children's charity of copyright infringement. http://cdhsupport.org/elizabeth/10-23-2007.htm

10/22/07 - Elizabeth Doyle-Propst, President / CEO of Breath of Hope, Inc. accuses CHERUBS of copyright and trademark infringement again and threatens more legal action.
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10/4/07 - Elizabeth Doyle-Propst, President / CEO of Breath of Hope, Inc. accuses CHERUBS of copyright and trademark infringement.
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These are only a very, very few of the threats, false charges and other attacks made by this organization to other organizations and CDH families.

The best indicator of future behavior is past behavior.