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 bethany@jrgfoundation.org.
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3 comments:
Hello I too am a cdh mommy. My daughter is once again struggling with the effects of this "cdh monster" as I call it! WE nearly lost her just three short months ago and she is 2.
I just think it is so heroic of your family to help so many others. God has really used your son in an outstanding way! I'm truly sorry you can't physically hold your son but he is in so many people's hearts!
Please let me know if I can help your foundation. Feel free to drop by and read about our little Ava.
~Terri L. Helmick
http://avaslifewithcdh.blogspot.com
http://cdhawarenessvideos.blogspot.com
Carepage: avahelmick
Hey Bethany,
This is great! My husband, Owen and I have sent our blood off for the Mass General research study (we did it last March I think). I would be happy to do any others if you know of others. You guys are doing such a great job!
darcy
http://ittybittyblog.wordpress.com
Hi Again Bethany,
I tried to email you to get your e-newsletter and to see if I could use the JRG Foundation button on my blog but the email bounced back...
Do you have my email? If not just leave a comment on my blog and I'll email you back.
darcy
http://ittybittyblog.wordpress.com
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