Doctors, Families Rally for Cure for Deadly Birth Defect

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

Friday, December 26, 2008

Congenital Diaphragmatic Hernia Awareness Day 2009

Would you like to truly help with congenital diaphragmatic hernia? In 2008, there were thirty-one states out of fifty in the United States that issued Proclamations declaring Congenital Diaphragmatic Hernia Awareness Day on March 31, 2008. There were over a dozen towns and cities that also issued Proclamations.

In order to generate more research for Congenital Diaphragmatic Hernia there must be awareness. Where does one think all the funding for research is obtained? Our government funds research programs - all of them do across the world. We must make them aware that this birth defect occurs just as often as others they are funding. Before the Pink Ribbon Campaign for Breast Cancer, there wasn't much research or funding to help improve lives or help fight Breast Cancer. Today there is and there is a whole month of Breast Cancer Awareness.

All Proclamations issued are kept by those who receive them, Breath of Hope only asks for you to confirm you mailed it and where you mailed it or emailed your request and if you could send us a picture or a scan of the Proclamation.

In 2009 we hope to have all 50 States! In 2010 we want a Congressperson to sponsor a Bill to make a perpetual Awareness Day for Congenital Diaphragmatic Hernia! The more that write, obtain Proclamations, the more we make people aware of this devastating birth defect which still kills half of those affected.

Please feel free to contact us at to receive the Sample Letter, Sample Proclamation and other materials that you can send to your Mayor or Governor. If you are outside the US, you can write your equivalents in your country too. You can also contact me at

Grass roots campaigns like this work! Politics aside - we are witness to our election here this past year where it was a grass roots effort which proved victorious.

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