[tri-wings] Re: [tri-family] A simple site of links to family trisomy sites

Forwarding this from family list to wings for ThereseAnn.  Link to
a new centralized homepage launch site (see her note below mine):
http://www.livingwithtrisomy.org/

And Sharon could you please resubmit Sophie Elizabeth's website, there
was a glitch and the submission didn't take.

ThereseAnn has voluntarily sat this up for the Tracking Rare Incidence
Syndromes Project, and it couldn't have come at a better time.  It will
very simply fulfill one of the goals of TRIS, "to give families a feeling
of community", with very little effort needed by anyone.  When it's fully
"linked", simply click on your child's chromosome #, and get a list of
family homepages with only varieties of your particular number to have to
sort through for the closest match (full, partial, mosaic, living, ^i^,
etc).
This will be a family match up system that operates similarly to the
envisioned more technical medical/educational information TRIS database
site.
It however will by necessity be anonymous as to the identities of
participants,
and only analyzed end data, so won't fulfill that goal.

Fawna
---------------------------
Hello again,

It kept coming back to me that we have that URL of living with trisomy.org

(TRIS) is using it for now and in the future I will keep it on as a
primary link to TRIS.

It seems appropriate to have a simple site where families can just
post their own links  -  Nothing fancy, this is a now fuss site. Most
sites have the major Trisomy support sites, so there is no need to
duplicate them here...

As families find TRIS, they can add their link and in turn as TRIS
collects their data, they can send the families  over for contacts...

We'll see how it goes...If any of you have a link, site specific to a
chromosome, please submit it...It took us a few days to get it
working right, so if you already sent in some info, please do it
again...My mail box is jammed and it has been a busy week in our
home...

My two older kids do Theater Productions. They are doing "Big River"
--as production weeks go...it is hectic.

http://www.livingwithtrisomy.org

ThereseAnn mom to Natalia
http://www.livingwithtrisomy13.org
                  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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