[tri-med] Re: Unique Newsletter

I was interested in the t8 story from the magazine so
i joined unique and Beverley (who runs Unique) emailed
it to me the the same day. 
She did mention about not copying the info to anyone.
I have told my sons paediatrician to contact Unique if
they ever get any more rare genetic cases because i
now how completely helpless i felt when my son was
diagnosed and none of the doctors could give me any
info or understanding. 

Katy. son with t8 mosiac.





--- Kim Ihlenfeldt <kimihlenfeldt@xxxxxxxxxxx> wrote:

> As long as the person e-mailing the person in the
> newsletter is part of 
> Unique, I don't think that would be a problem.  But
> it still may be simpler 
> for the person to just join Unique, because what
> they will do is do a search 
> for anyone having the same or close to the same
> genetic makeup, if you want, 
> and then give you their contact info.  I did that
> for a person locally as 
> the UIHC said for her daughters genetic makeup, they
> only knew of about five 
> to ten.  She joined Unique and they had about 300. 
> Made her feel a bit 
> better.  On the flip side, there is no one even
> close to Candaces' genetic 
> makeup.  Just some food for thought.   :-)
> 
> 
> >From: TRIER9@xxxxxxx
> >Reply-To: tri-med@xxxxxxxxxxxxx
> >To: tri-med@xxxxxxxxxxxxx
> >Subject: [tri-med] Re: Unique Newsletter
> >Date: Wed, 8 Aug 2007 22:46:26 EDT
> >
> >Or, one of us could email the person in the
> newsletter and ask her if she'd
> >mind corresponding with you? Most people put their
> email addy w/their 
> >letter.
> >Laurie
> >Mom to Bri wt 9p
> >
> >
> >
> >**************************************
> >  Get a sneak peek of the all-new AOL at
> >http://discover.aol.com/memed/aolcom30tour
> >
> >
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> >                   Families Helping Families
> On-line
> >
> 
>
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> 



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