Statement on Trademark Congenital Diaphragmatic Hernia Awareness

In light of the ruling regarding the trademark for Congenital Diaphragmatic Hernia Awareness, Breath of Hope has decided to cancel the registered mark. While we feel that the ruling was unfavorable, the Board of Directors at Breath of Hope has decided that we need to move forward in other areas concerning awareness, helping families with this truly horrible diagnosis, and raising money towards research.

Our intentions of trademarking Congenital Diaphragmatic Hernia Awareness were never to stop others from raising awareness, create lawsuits, or negatively impact the CDH community. Instead, we were attempting to protect what we perceive as our intellectual property. It also should be stated there are literally thousands of health conditions as registered trademarks in use today, including Prematurity Awareness Day®, which does not impede anyone from raising awareness or conducting research. 

We, the Board of Directors, are saddened by the misleading, incorrect, and negative information that has been advertised all over the internet by others. We have no intentions of slandering any individuals or other organizations, we feel strongly that this is immature behavior and it is a deterrent from what our goals really are.  We will continue to strive to support parents and families, the medical community and other CDH groups and nonprofits.

- Breath of Hope Board of Directors

Breath of Hope, Inc. © 2010

Part of being a winner is knowing when enough is enough. Sometimes you have to give up the fight and walk away, and move on to something that’s more productive. 
~ Donald Trump

Estimated Birth Rate of Congenital Diaphragmatic Hernia Worldwide

The world’s population low estimate is 6 billion. The world birth rate is about 20 per 1000 which would make the number of births every given year at 12,000,000. (You divide 6 billion by 1000 and multiply by 20.) So – with 12 million babies born every year in the world, if CDH has a rate of 1 in 3,000 – this would be 40,000 born with congenital diaphragmatic hernia in the world every day – again an estimate. (You take 12 million and you divide that by 3000 to get 40,000).


This means in ten years there are 400,000 infants born with congenital diaphragmatic hernia and the death rate for these children is 50% so 200,000 die in 10 years. (Multiply 40,000 by 10.)


Each day in this world approximately 109 babies are born with CDH. About 4 babies an hour are born with CDH in the world every day. (Divide 40,000 by 365 – days in a year you get 109.5… then you divide 109 by 24 – hours – and that is 4 rounded.)


Meanwhile, Muscular Dystrophy has a rate of 1 in 6,000 births for the congenital form of this disease. They have Jerry Lewis and a Telethon that earns 65 million dollars for research. MD deserves this funding and recognition.



So does congenital diaphragmatic hernia.

The First Congenital Diaphragmatic Hernia Awareness Ribbon

This was the first Awareness Ribbon created by Denise in May 2006. There was thought that the colors of black and yellow would infringe upon the Yellow Ribbon (Waiting for the return of a loved one - Military) and the Black Ribbon which is a symbol of mourning. Later, Breath of Hope adopted the color of Turquoise for our Logo and then for the ribbon for the Congenital Diaphragmatic Hernia Awareness Campaign.


A lie has speed, but truth has endurance. --Edgar J. Mohn

Amazing Quotes...

The truth is incontrovertible, malice may attack it, ignorance may deride it, but in the end; there it is. - Sir Winston Churchill

A fanatic is one who can't change his mind and won't change the subject. - Sir Winston Churchill

A lie gets halfway around the world before the truth has a chance to get its pants on. - Sir Winston Churchill

Trisomy 13 - My discovery and the Truth of the Matter

Until Melissa and Bennett-Chadlen I was so uninformed on Trisomy 13. You see I like many heard from the professionals that this was a fatal condition alone and with CDH - even more so. I never knew there were people living with Trisomy 13 into their 40's or that these children were not unlike children with Downs Syndrome (Trisomy 21) and many of these children thrive. I was told they didn't live long. They can learn, they can work, they can go to school - are they not "perfect" - is anyone really? Or are they in their own way?

If you want a child - truly want a child - it does not matter their imperfections and if it does perhaps that may be an imperfection within? No judgement here - some want the perfect life but those of us that have had children with a birth defect - we know this world is imperfect.

Yet sometimes it is the imperfect things in life that are truly the way things should be and should be appreciated, loved and embraced. In doing so you learn to love yourself and then can love others too.

Melissa and Bennett-Chadlen - Thank you!

Links for Living with Trisomy 13 are under the Support Links - and her wonderful letter is also in these links. I encourage everyone out there to read these and start spreading the word to those out there!

Nimkee, I will be sure to help raise the THUNDER for this! ;-)