Doctors, Families Rally for Cure for Deadly Birth Defect

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

Monday, September 12, 2011

Will You Help - Raising a Little CDH Awareness!

Do you see a need in your community to help families who have a CDH child or are expecting a CDH child?  Do you see a need, not being met which we can help you with?  If you do, please contact us at

Here are examples of needs Breath of Hope helps to meet:

Emily, ^Baylee's^ Mommy, will be sending out Birthday Cards to all families of angels on our mailing list!  As many parents of angels know, not everyone remembers their birthdays - it is nice to know we do!

Each year, for the last four years, we have participated in the United Way's Day of Caring, we get volunteers to help us assemble 500 infant hand print kits, most which are donated to the University of Virginia Medical Center's NICU.  Every family who has a baby admitted will receive a hand print kit to capture that moment.  (Not just CDH families - but all families there!)

Nationwide and Internationally too - we send Expectant and New Parents a kit with our Medically Reviewed publications, hand print kit, receiving blankets and a NICU Baby Book and we add in ribbons and wristbands.  Vital information is given to an expectant or new parent of a CDH baby.  We also have volunteers all over who provide our publications to hospitals, so they can give them to families expecting or who have a newly born CDH baby.

We always need anyone to write their Governors, Mayors and Congresspeople to request March 31st be Congenital Diaphragmatic Hernia Awareness Day!  This is also a great opportunity to make those aware in your community!  We provide all materials as guidance and if your city, town or state issue Proclamations or Resolutions - you keep the document!  We also encourage you to have events - small are large in your area to bring attention to this often overlooked birth defect.

We will be having the Jazz for Peace Event in Charlottesville, Virginia on March 23, 2012.  This is their 10th Anniversary and will coincide with Breath of Hope's Congenital Diaphragmatic Hernia Awareness Day Campaign which will be into it's 5th year!  We hope to bring more awareness to congenital diaphragmatic hernia, Breath of Hope and Jazz for Peace in the Charlottesville, Virginia community!

SAVE THE DATE - Week of June 18th, 2012 - our 3rd Annual Congenital Diaphragmatic Hernia Summit will be in Denver, Colorado - this will be the first time on the West Coast!  We need volunteers to help if planning to attend!  Our goal is to have more families enroll in CDH Research Studies, learn about the amazing hospitals and their doctors and nurses in that area and also meet with others who share their journey with CDH.  Each year thus far, we have learned of astonishing information from those doing research on congenital diaphragmatic hernia - many times before it is even published to the public! 

Breath of Hope also helps with any Fundraiser to help raise funding for medical research for CDH or which would benefit CDH patients, support for CDH families and help off-set costs of medical expenses for CDH families.

Please contact us at if you would like to help or you have ideas to help your community!

As always - Thank you!

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