I'm having the pleasure of reading Amy Julia Becker's newest book, small talk. I expect you will enjoy it as well. Continue Reading
October 23, 2014
Medical outreach as cosmic justice
This past weekend, I trained the Bloomington, Indiana-based parent support organization, the Down Syndrome Family Connection, on engaging in effective medical outreach. What I didn't share at the training was how it was a bit of cosmic justice for what happened in Bloomington years ago. Continue Reading
October 21, 2014
How to deliver a Down syndrome diagnosis … better
Too many parents have bad experiences from how their medical team delivered the diagnosis that their child has Down syndrome. Fortunately, research, guidelines, and online training exist on how best to deliver the diagnosis. Continue Reading
October 16, 2014
The ripple effect of medical outreach
As part of my work with the National Center, we exhibit at medical professional conferences. I look forward to hearing how our efforts effected positive change in serving patients. Continue Reading
October 13, 2014
Into our 2nd decade of Down syndrome awareness walks
My family attended our local Down syndrome walk for the 11th straight year. If you haven't already, I hope you'll make this year your first of many of attending your local organization's walk. Continue Reading
September 24, 2014
Consensus: 5 years later @NSGC2014
At this year's National Society of Genetic Counselors annual conference, an impressive panel was assembled that shared the developments of a historic meeting. The lessons shared will need to be applied even more as prenatal testing progresses. Continue Reading
August 7, 2014
What are national advocacy organizations doing about the high termination rate for Down syndrome?
Monday, Matthew Hennessy wrote about my posts covering the reasons a pamphlet was created when the identified resource had already been established. But his critique is off target. Continue Reading
July 30, 2014
How a pamphlet did not provide information to expectant mothers
The development and re-development of Global Down Syndrome Foundation's (GDSF) pamphlet for expectant mothers (which covers prenatal testing options and the basics about Down syndrome) has deprived women of professionally recommended information about Down syndrome for years. Continue Reading
July 24, 2014
A pamphlet supposed to be for post-diagnosis must discuss prenatal testing?
At least that's what it's creator says. Continue Reading
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