I was interviewed yesterday evening by a representative for the National Center for Prevention of Birth Defects. She asked lots of questions about my pregnancy with Jack, the prognosis we were given and the obsticles he faced in his life. She asked if we (as a foundation) would be willing to spread the word about genetic testing to find a cause (and therefore a cure) for CDH. HECK YES WE WOULD!!! So, any CDH family out there, we HIGHLY encourage you to get as involved as you can in the study of birth defects. Your DNA is priceless for these studies!!!
The story on Jack will run in their national newsletter and will be available for viewing online. I will let you know when that will be.
Also, if you are interested in receiving the JRG Foundation's electronic newsletter, please send your email address to firstname.lastname@example.org.