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"St. John's University Cerebral Palsy List" <[log in to unmask]>
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From:
Cynthia Crosby <[log in to unmask]>
Date:
Sun, 30 Jan 2005 16:05:25 -0500
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"St. John's University Cerebral Palsy List" <[log in to unmask]>
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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

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