[tri-med] Re: update on Annie

Fantastic!  I hope all goes well.  We appreciate you, being on the front
lines in the battle for good medical treatment for our kids.

God bless.
Jennifer Vanderbeek
Meridian, ID
Mom to Arwen, 10; Elanor (T18), 8; caregiver to Joe (CP), 29, and wife to
Andrew

Visity Elanor's Caringbridge site at:

http://www.caringbridge.org/visit/elanoranne 




-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] On
Behalf Of Barbara Farlow
Sent: Tuesday, May 27, 2008 8:31 PM
To: tri med lists
Subject: [tri-med] update on Annie

Hello friends,
I am telling Annie's story at the University of Toronto's Joint Centre for
Bioethics on June 11th.(announcement below) I will also be presenting a
poster at the Seattle Children's Ethics conference. The theme this year is
Ethics and Genetic Testing. The director of ethics, Dr. Ben Wilfond, is the
author of the paper "Lethal Language, Lethal Decisions" which addresses the
fact that tri 13/18 are not always lethal conditions but that the language
of lethality is used to define a quality of life decision. 

I hope that all of these endeavors ultimately lead to improvements in the
non-judgmental provision of care for our special children. 

Barb  
Annie's mom May 25, 2005- Aug 12, 2005. 




 



First Annual Sue MacRae Lecture

On Ethics and
Patient-Centred Care

 

(THIS SEMINAR WILL ALSO BE WEBCAST)

(http://epresence.ehealthinnovation.org/epresence)

 

 

"Making Tough Decisions Together:  A
Family's Perspective of the Vital Importance of Ethics and
Patient-Centred Care"

 

 

Barbara Farlow, BEngSci, MBA

Member,
Patients for Patient Safety Canada

 

Wednesday, 11 June 2008, 4:10 - 5:00 pm

 

University
 of Toronto
Joint Centre for Bioethics

88 College St.,
Great Hall

Abstract:   Following
the tragic death of a loved one, a family seeks healing by struggling to
define
ethics and patient centred care and by attempting to understand why there
seemed
to be an absence of both in their circumstance.  The lecture is an account
of a journey of trying to affect improvements in ethics and patient-centred
care, especially in situations pertaining to end-of-life and quality-of-life
valuations.  

Admission Free   -   No Registration
Required

 

 

*************************************************

Rhonda
L.F. Martin

Executive
Assistant to Dr. Ross E.G. Upshur,

  
Director, University
 of Toronto Joint Centre
for Bioethics

Administrative
Assistant to Dr. Jennifer L. Gibson,

  
Director, Partnerships & Strategy

University
 of Toronto Joint Centre
for Bioethics

88 College Street

Toronto,
 Ontario

M5G
1L4

CANADA

( Tel:  416-978-1906

9 Fax: 
416-978-1911

8 E-mail:  rhonda.martin@xxxxxxxxxxx

Website: 
www.utoronto.ca/jcb

*************************************************

 

This message is intended only for the use of the
intended recipients, and it may be privileged and confidential.  If you
are not the intended recipient, you are hereby notified that any review,
retransmission, conversion to hard copy, copying, circulation or other use
of
this message is strictly prohibited and may be illegal.  If you are not
the intended recipient, please notify me immediately by return e-mail, and
delete this message from your system.

 







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