kathy jo,
she has been an admin for years.

--- Kathy Jo Pink <[log in to unmask]> wrote:

> Since when, Kat,are you a list Administer and who
> did you
> replace??    Kathy Jo
>
>
>
>
>
>
>
>
>
> At 03:58 PM 1/30/2005, you wrote:
> >As a parent of a CP kid, you certainly are entitled
> to your opinion, but as
> >an CP adult who is entitled to make up her own
> mind, I can say I welcome
> >such studies if they will help us in any way.   We
> have had studies
> >presented to us and many of us have willingly
> particpated in them.
> >
> >We list admins welcome the studies if they are
> legitimate and add to the
> >knowledge of those with CP and how they live and
> function in our society.
> >Bobby emailed us with this request and we agreed it
> was a valid one and so
> >it was posted.
> >
> >Kat
> >CP Adult - Living and working fulltime in N.C.
> >C-PALSY List Admin
> >
> >On Sun, 30 Jan 2005 16:05:25 -0500, Cynthia Crosby
> <[log in to unmask]>
> >wrote:
> >
> > >Regarding research.
> > >
> > >As the parent of a child with cerebral palsy, it
> is
> > >significant to emphasize that I participate in
> list serves
> > >solely for the sharing of experience with other
> parents.
> > >Parents sharing with parents is a vital resource
> that should
> > >not be corrupted from well-meaning clinicians. It
> is critical
> > >that these list serves be available and
> comfortable sites for
> > >parents to openly discuss all topics related to a
> cerebral
> > >palsy without fear of further diagnosis,
> labelling, judgment,
> > >recrimination, or more unsolicited expertise from
> clinicians.
> > >For those of us families involved in the service
> system, we
> > >need a place of safety  from further questioning,
> more
> > >labels, predictions, prognosis, etc. I do not
> feel it is
> > >appropriate for a clinician to solicit research
> subjects from
> > >the list serve.  There are many places to do this
> > >solicitation.  It is important to  respect the
> integrity of
> > >the list serve.
> > >Cynthia Crosby
>




__________________________________
Do you Yahoo!?
The all-new My Yahoo! - What will yours do?
http://my.yahoo.com