I replaced you last year, Kathy Jo.
Kat
On Monday 31 January 2005 5:54 pm, Kathy Jo Pink 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
|