Sounds interesting...is there much involvement after the blood drawing.
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Sounds interesting...is there much involvement after the blood drawing.
They let us know that they had received the blood samples and that was the last we heard from them except we do get a yearly newsletter.
I have been reading this thread and re-reading it.
Today I called Meaghan and is amazing.
She is going to send us information and a blood kit for when we have Shelby's blood drawn again and I hope it is no time soon.
I asked her if they were interested in other families having CDH babies and she was like YES.
Her number again-617-726-0828. If you are interested- DEFINETLY call her and she will explain everything.
They are doing AMAZING things and I am so happy this thread is here.
This can do so much for reasearch on CDH.
I can't spell when I get excited.
I meant to write---This can do so much research for CDH and the more families that are involved----the better.
I received a copy of CDH News from the CDH study Research Staff and it was wonderful.
They are all angels walking on this earth.
If anyone is interested-you should most definetly give Meaghan a call. It is so very much worth it!
You got what from who? How do we get this? Is this CHERUBS related?
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.
Do I call her to get this newsletter?
Yes- I would call Meaghan and tell her you are interested in the newsletter. She emailed it to me, so I would think she would be more than happy to do it for you.
DUH-
I don't know what I am thinking. If you want I can copy it for you Kate and send it in the mail.
I think there would be any harm in me sharing it with you.
Let me know either way.