I received the newsletter from the CDH Study Research Staff from The MassGeneral Hospital for Children and Children's Hospital Boston. It is called CDH News. They are conducting CDH research.
The newletter is wonderful.
CHERUBS web site is listed in the newsletter as a support group. VERY COOL!!!!!!CHERUBS is the first support group listed.
They are sending a blood draw kit for us to give our blood samples. We will wait until Shelby needs blood to be drawn and then send in ours and Shelby's.
I cannot tell you if they are taking parents blood of non-survivors.
That would be a question for Meaghan and she is amazing, as are the doctors involved in this research.
Her number is listed in this thread.
Hope this helped.