The State of South Carolina - March 31, 2010 is Congenital Diaphragmatic Hernia Awareness Day

Just received word that March 31, 2010 is Congenital Diaphragmatic Hernia Awareness Day in South Carolina!  Thank you Stephanie, Mom of Caleb's Mommy!

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

Why is Awareness for Congenital Diaphragmatic Hernia So Important?

We have told you the facts, five families each and every day have their unborn or newly born child diagnosed in the United States alone.  That of those five families, most never heard of it before that day of diagnoses.  We researched and found that CDH has a rate of occurrence which equals the occurrence of Spina Bifida, Cystic Fibrosis and Congenital Muscular Dystrophy.  It also occurs more often than childhood cancers yet we still have parents contacting us who had never heard of it prior to their child’s diagnoses.

More perplexing is we recently had a parent take their surviving CDH child to a doctor and tell them of their child’s condition and the doctor never heard of it.  They thought CDH was a hospital (there is a hospital).  Now, how frustrating is this, these young children have chronic lung disease due to CDH and should be treated slightly differently than a ‘normal’ child.  The doctor has no idea what a diaphragmatic hernia is.  That the fact this child is surviving is a major miracle that does require their knowledge and experience to be sure they continue to do so.  We imagine this doctor knew of Cystic Fibrosis, Spina Bifida and Muscular Dystrophy.  Not to dispute this particular doctor or any that has not been made aware of this birth defect.  Many more children with CDH are being born today then ten years ago.  Many more are surviving due to the numbers of babies being born with CDH.  Many times during a NICU rotation a resident may not have firsthand knowledge of a diaphragmatic hernia case.  Parents of these babies and the NICUs that care for them will tell you they arrive in “clusters”.  It does not mean that this doctor or any others out there are not good at their work.  They, like many have not been made aware.

When even health professionals who are practicing medicine in this country and others are unaware, we still have work to do.  It isn’t just a day, a month or awareness – it is awareness every day.  The day or month to honor these children and families is a platform.  From that platform we continue to work hard each and every day to support families, educate the general public and inform others of this birth defect.  If a city or a state agrees that this condition deserves a day, it gives us more credibility when we are educating others.  That is the platform.   Why we continue to work to have this day to honor these families and the health professionals who work the front line to save these children and research to one day bring the survival rates to a higher level.  Why we wear Turquoise in unity to make an impactual statement to the world.  Why we continue to raise awareness.  Why we continue to write letters to our Mayors, Governors, Legislators to make this day Congenital Diaphragmatic Hernia Awareness Day.  From that platform we continue to launch awareness, education and support.

*impactual is not a word recognized in the dictionary - however one I use because I believe it should be!

Breath of Hope, Inc. © 2010

For Our Turquoise Warriors!

Available at the Carepress Store here - if you go to the store, it is less than going out to the Cafepress Marketplace! 

Update on Birth at Cardinal Glennon - Angel Ali

Many of you saw the news that a brave family underwent the tracheal occlusion surgery - what was more fascinating that they used a gel as the balloons for the trach that would absorb so a second surgery would not be needed for removal.

Ali did very well at birth, however, we were just made aware by his dear Aunt that he chose wings.  Such sad news.  We hope his family knows we all hold them in our hearts and prayers.  Many of us understand a bit of what it is like to have an angel touch our lives as Ali did. 

Please keep the Davis Family and their friends - and the amazing staff at those hospitals - in your thoughts and prayers.

http://www.cardinalglennon.com/News/Pages/FirstBirthatCardinalGlennonaSuccess.aspx

Quote about Courage...

Whatever you do, you need courage. Whatever course you decide upon, there is always someone to tell you that you are wrong. There are always difficulties arising that tempt you to believe your critics are right. - Ralph Waldo Emerson

Whole Foods Nickles for Nonprofits - Continued....

 

Breath of Hope was one of the nonprofits chosen to benefit from the Nickles for Nonprofits at the Charlottesville, Virginia Whole Foods for the month of January.  However, Whole Foods called us after the Earthquake in Haiti and asked if they could collect for the American Red Cross for Haiti Relief the remainder of the month of January.  Of course we agreed.  They then made Breath of Hope and Ronald McDonald House the nonprofits for the month of February! 

Medical Research Support Results

Another step forward in an effort to further the care of congenital diaphragmatic hernia infants has been accomplished!  Please read here.

This was an effort collaborated by a team from the Saint Louis Fetal Care Institute - Cardinal Glennon, SSM Saint Mary's Health Center and Saint Louis University.

Hope for Haiti

We are all deeply concerned with the efforts in Haiti to get help and essential needs to the people there.  As many know a magnitude 7.0 earthquake hit the city of Port-au-Prince on Tuesday, January 12th.  Many businesses and nonprofits are stepping in to raise funds for this effort.  The estimate for lives lost in this small country exceeds all other natural and man-made disasters of this century.  The Haitian people are a very resiliant group of amazing people.  We hope that they know the efforts of many out there, not just in the United States but world wide. 

Please consider sending a donation to the many charities out there that are working to help the people now and in the future. We have listed a few below:

American Red Cross

Doctors Without Borders

OXFAM-AMERICA INC

CARE

UNICEF

CDH in the News - Parker Reese's Legacy

Very proud that we refer families who have children diagnosed with congenital diaphragmatic hernia to Parker Reese Foundation in North Carolina. Please read this article.

Every action of our lives touches on some chord that will vibrate in eternity. ~Edwin Hubbel Chapin