Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective News Report of Saint Louis Children's Hospital Press Conference

Sunday, August 14, 2011

The President of the United States: Pass a Resolution for March 31st to be CDH Awareness Day

For the last 5 years we have diligently promoted Congenital Diaphragmatic Hernia Awareness Day - March 31st.  In it's inception, we never expected the overwhelming response we received from parents, family and those who truly knew how devastating CDH is on the family who helped to support our endeavor.  Our ultimate goal has been to have one day dedicated to Congenital Diaphragmatic Hernia Awareness, to raise awareness, funds for support and to honor those who continue the fight and remember those brave souls who fought a great fight too.

We realize that each year, writing your Governor and your Mayors for your areas to Proclaim March 31st as Congenital Diaphragmatic Hernia Awareness Day is consistently a constant task.  We also know that sometimes in one state, another new family will step up and this gives them the opportunity to receive the Proclamation and the amazing feeling they have when they hold that amazing document!  There is a sense of empowerment and achievement!  All we ask for is a photo of the document - you keep it! 

We also are going to push forward, we want the President of the United States to sign a Perpetual Resolution, we want all of Congress both the US Senate and the House of Representatives to pass the resolution to make March 31st that day.  A day we reflect, remember, rejoice, celebrate and make all aware of the amazing families affected by CDH.

We have again created a new Petition which will send an email to your Representatives in Congress and to the President to make this day happen.  We are seeking at least 5,000 signatures.  We are asking anyone who would like to push this further and personally call their Representatives to contact us for the sample letter and sample Resolution.  We also ask anyone who would like to turn their State Turquoise for CDH Awareness Day 2012, to contact us for a Sample Letter and Sample Proclamation to contact us too.  Making it personal does help further this cause!

Please feel free to go to this link here at and sign and you can contact us at to get the sample documents.

Thank you for all you do everyday to help educate the public, further awareness of this birth defect.  We still have a long way to go but we are making progress!

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