Comments on: Firms vy for first-trimester blood test for Down syndrome http://www.patriciaebauer.com/2008/02/13/firms-vy-for-first-trimester-blood-test-for-down-syndrome/ Disability News | PatriciaEBauer.com Thu, 20 Nov 2008 20:36:40 +0000 http://wordpress.org/?v=2.6.2 By: Sandra McElwee http://www.patriciaebauer.com/2008/02/13/firms-vy-for-first-trimester-blood-test-for-down-syndrome/#comment-547 Sandra McElwee Sat, 16 Feb 2008 03:07:18 +0000 http://www.patriciaebauer.com/2008/02/13/firms-vy-for-first-trimester-blood-test-for-down-syndrome/#comment-547 Dear Patricia, Thank you for your eloquent writing in defense of our children who definitely do not suffer and do not create a horrible burden for our families ... as sadly many are told when they receive a prenatal diagnosis. I am one of the authors of the petition at http://www.thepetitionsite.com/1/DS-advocacy At the time I type this we now have 693 signatures and hundreds of testimonials from parents who had a prenatal diagnosis and incorrect biased information given to them. We have made the decision to expand the petition's recipients to include ACOG, the above mentioned companies developing the prenatal tests and encouraging, imploring them all to work in conjunction with the NDSS and NDSC to develop educational programs via the Internet: 1. For doctors to learn how to deliver the prenatal diagnosis. 2. For parents to view before they are tested; to explain what they test is looking for and what will be expected of them if they do have a positive prenatal diagnosis including parent testimonials of basically what it is like to parent a child with Down syndrome. 3. Another educational video to view after receiving a prenatal diagnosis with more balanced, accurate and up to date information, so the doctor is not the only person delivering the information to the expectant parents. We will be asking ACOG and these companies to fund the development and the marketing of these educational programs. The petition will also go to support SB1810, the Kennedy/Brownback bill (the Prenatally and Postnatally Diagnosed Conditions Awareness Act). Keep up the good fight Patricia! You are making a difference! Dear Patricia,
Thank you for your eloquent writing in defense of our children who definitely do not suffer and do not create a horrible burden for our families … as sadly many are told when they receive a prenatal diagnosis.

I am one of the authors of the petition at http://www.thepetitionsite.com/1/DS-advocacy

At the time I type this we now have 693 signatures and hundreds of testimonials from parents who had a prenatal diagnosis and incorrect biased information given to them. We have made the decision to expand the petition’s recipients to include ACOG, the above mentioned companies developing the prenatal tests and encouraging, imploring them all to work in conjunction with the NDSS and NDSC to develop educational programs via the Internet:

1. For doctors to learn how to deliver the prenatal diagnosis.

2. For parents to view before they are tested; to explain what they test is looking for and what will be expected of them if they do have a positive prenatal diagnosis including parent testimonials of basically what it is like to parent a child with Down syndrome.

3. Another educational video to view after receiving a prenatal diagnosis with more balanced, accurate and up to date information, so the doctor is not the only person delivering the information to the expectant parents.

We will be asking ACOG and these companies to fund the development and the marketing of these educational programs.

The petition will also go to support SB1810, the Kennedy/Brownback bill (the Prenatally and Postnatally Diagnosed Conditions Awareness Act).

Keep up the good fight Patricia! You are making a difference!

]]>