[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. 

I agree with you, the rules are definitely something I disagree with. A
community, which is what that particular site states it is, should be
governed by its members and above everything else, always do what will be
the best for everyone in the community. Removing that link and not shouting
it from the rafters is irresponsible and childish and I hope that someone
calls them to the carpet soon. 

As you can see I am pretty passionate about this particular thing and
believe strongly in each individuals right to all the information there is
out there in order to make their best decision. So, I will get off my soap
box now and keep my fingers crossed that the support site will come to its
senses. 

Thankfully most families dealing with a diagnosis of T13 or T18 do visit
other sites and hopefully will find that information themselves. 

Bess
Mom to Ben, Jake, Zack, Chloe, Zack, Emma Grace 12-2-03 to 12-15-03 and Will
(almost 6 months old)
www.hopefortrisomy13and18.org (where you will see a prominently displayed
link to TRIS)

-----Original Message-----
From: tri-wings-bounce@xxxxxxxxxxxxx [mailto:tri-wings-bounce@xxxxxxxxxxxxx]
On Behalf Of Erin Maurer
Sent: Friday, March 16, 2007 1:36 PM
To: tri-wings@xxxxxxxxxxxxx
Subject: [tri-wings] TRACKING RARE INCIDENCE SYNDROMES UPDATE


Fawna,
Can you get in touch with the ladies on the trisomy 18 foundation.  They
would probably post something for you there and then you can get more peole
with t-18.  I would post it, but they have strict rules about posting
websites and stuff like this.  So, it has to go through the correct channels
to get posted.

I really dont like the rules personally.  O'well.


Erin
mom to TYler t-18

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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