Doctors, Families Rally for Cure for Deadly Birth Defect

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

Saturday, January 10, 2009

How Can YOU Make A Difference?

When a parent tells someone their child has congenital diaphragmatic hernia and explains the condition – people say “I’m sorry”. (We don't want their sympathy.) When they explain that their state, city or area has issued a Proclamation and March 31 is Congenital Diaphragmatic Hernia Awareness Day – people take notice. After all, if the state thinks it is important enough to have a day – they need to be made aware.

In order to promote public awareness of congenital diaphragmatic hernia and encourage research efforts to one day successfully treat all those diagnosed with this birth defect we must make sure each state is aware. It starts, as it has with each and every state. If you would like to write your Governor we can provide you some sample documents as guidance for this task. Please email

You write your Governor or Mayor of your city and tell your story and request March 31 be proclaimed as Congenital Diaphragmatic Hernia Awareness Day. A day the residents learn more about congenital diaphragmatic hernias and support those who are affected.

We still have parents coming to us that have never heard about this birth defect, until they were diagnosed. This effort is to educate the public, our governments and the world.

Last year there were 31 states that issued Proclamations declaring March 31, 2008 as Congenital Diaphragmatic Hernia Awareness Day – we would like to see all 50 in this nation declare March 31, 2009 as Congenital Diaphragmatic Hernia Awareness Day.

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