[tri-med] Re: update on Annie

Good luck Barb.  I hope all goes well.  Personally, I think that you and Dr. 
Ben Wilfond should go on a joint tour and help some of these doctors get a 
brain.  Just an opinion.
 
Kim Ihlenfeldt, wife to Kerry (complex balanced translocation between the 9, 
15, and 18 chromosomes), mom to Cameron, 9 (same chromosomes as Kerry), Cayden 
T18 (12-16-02 to 01-16-03), and Candace, 2 (Partial Trisomy 15 and Partial 
Trisomy 18)


> From: b_farlow@xxxxxxxxxxx> To: tri-med@xxxxxxxxxxxxx> Subject: [tri-med] 
> update on Annie> Date: Wed, 28 May 2008 02:30:40 +0000> > 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> > *************************************************> > > 
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> recipient, you are hereby notified that any review,> retransmission, 
> conversion to hard copy, copying, circulation or other use of> this message 
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