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