[tri-wings] Reply to Bess
- From: "Deaton Marianne D SSgt 28 MOS/MXOOA" <Marianne.Deaton@xxxxxxxxxxxxxxxx>
- To: <tri-wings@xxxxxxxxxxxxx>
- Date: Fri, 16 Mar 2007 14:10:16 -0600
Bess,
YOU GO!!!! :)=20
I know I would like to see more info on T13 and T18. I would like it to
be talked about as openly as T21 and T22. I think it is just as
important.=20
I think the more information that is out there the better care the
future babies will get.=20
Marianne
Mom to Anthony (5) Jun 4th 2001, Christian (T13) 9-29/10-1-05
" Those who can endure most are rewarded most" unknown
-----Original Message-----
From: tri-wings-bounce@xxxxxxxxxxxxx
[mailto:tri-wings-bounce@xxxxxxxxxxxxx] On Behalf Of Bess Raulerson
Sent: Friday, March 16, 2007 11:58 AM
To: tri-wings@xxxxxxxxxxxxx
Subject: [tri-wings] Re: was TRIS update, now censoring the right to
information is wrong
Hello Erin,
My outsider understanding is that the study used to be linked from the
site
but the owners of the support site removed the study link. I can guess
why,
but because I tend to try to be positive, don't want to say in such a
public
forum. I think that the removing of information about a study that
directly
benefits families and children with T13 and T18 practically borders on
criminal. In my opinion each and every person out there has the ability,
option and right to make their own decision as to what links they choose
to
visit, as well as what studies they choose to participate in. Because
they
removed the link, they our removing the rights of the parents to know
all
the information possible about their child and include their child in an
important and ground-breaking study, especially when that study goes far
in
helping to make a difference in the future, something everyone would
like to
accomplish. How many of us, if we had the power, would change the future
for
the children that are coming behind ours? This study is one way to do
just
that.=20
Building ___ooOOoo__ Rainbows
www.trisomyonline.org
Families Helping Families On-line
- References:
- [tri-wings] TRACKING RARE INCIDENCE SYNDROMES UPDATE
- From: Erin Maurer
- [tri-wings] Re: was TRIS update, now censoring the right to information is wrong
- From: Bess Raulerson
Other related posts:
- » [tri-wings] Reply to Bess
- [tri-wings] TRACKING RARE INCIDENCE SYNDROMES UPDATE
- From: Erin Maurer
- [tri-wings] Re: was TRIS update, now censoring the right to information is wrong
- From: Bess Raulerson