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