We are so happy that Gan Gan introduced a CDH Research Bill on the floor of the Senate. You can watch it HERE. We think he did a good job, if only he could pronounce "diaphragmatic" correctly! :)
The Bill creates a national campaign to increase awareness of CDH and requests that NIH evaluate funding for CDH research to determine whether it is adequate or not. (We think it is not!) You can learn more about the Bill HERE.
The best way to support the legislation is to write to your Senators. If you would like to write a letter, please email me at maryareinhardt@gmail.com and I will hook you up with a letter to sign and send.
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Welcome!
Our son Jim Beau was born with a birth defect called Congenital Diaphragmatic Hernia (CDH), in which the diaphragm fails to fully form, allowing abdominal organs to migrate to the chest. Although 50% of the babies born with CDH do not survive, we found HOPE for Jim Beau at Shands Hospital in Gainesville, FL, with a surgeon named Dr. David Kays. Their survival rate for CDH babies is unprecedented.
Jim Beau was also born with a congenital heart defect called Tetralogy of Fallot. He had open heart surgery on March 9, 2010, also at Shands.
If you have any questions, please email me at maryareinhardt@gmail.com
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