A resource for information-seekers
Yesterday, Governor Steve Beshear signed into law Senate Bill 34, referred to already as “The Down Syndrome Information Bill.” The bill was patterned after a 2012 Massachusetts law. It requires that any health care professional or facility that delivers a Down syndrome diagnosis, prenatally or postnatally, also provide the family with up-to-date, evidence-based, written information […]
Continue reading...
Next week, I travel to Phoenix to give a poster presentation at the 2013 Annual Meeting for the American College of Medical Genetics (ACMG). I receive a daily invitations in my inbox to visit the booth for one of the manufacturers for the new Non-Invasive Prenatal Testing (NIPT). But what does each test test for, […]
Continue reading...
I had reason to refer to a column of mine, published a few years ago, called “My Daughter’s Paradoxical Genes.” It addresses the paradox of the ACOG recommendation that all women be offered prenatal testing for Down syndrome, but a separate ACOG ethics committee condemns the use of prenatal testing for sex selective abortion. The […]
Continue reading...
With the advances in prenatal testing and guidelines recommending prenatal testing be offered to all expectant mothers, more Down syndrome diagnoses are being delivered than ever before. But how should a Down syndrome diagnosis be delivered? Fortunately, there is a very helpful resource that is also a professional guideline by those who should know best.
Continue reading...
Today is the day to raise awareness about the R-word campaign, led by Special Olympics and Best Buddies. You can sign the pledge here to make “retard” and “retarded” go the way of the “N-word” and become the “r-word.” It is a significant campaign, even if some consider it mere semantics or political correctness.
Continue reading...
The United Kingdom’s Parliament is re-examining the Abortion Act of 1967, specifically Ground E which permits abortion at any time on the basis of disability. Comments are due tomorrow, March 6, 2013, by 12 pm, EST. Read on for the link and how to receive a template for your comment.
Continue reading...
While Daniel Day-Lewis did not deliver the message I hoped for, I learned of another connection one of the winners had with Down syndrome, and I had no idea it was so close.
Continue reading...
Today, at a column at Amy Julia Becker’s blog, I explain how the math works out to explain the headline and the graphic for this post. I hope you will visit her blog and my column at this link.
Continue reading...
Creating an ordinary life for an extraordinary person
Do you know about the TED talks? I discovered them several years ago and find them an endless source of inspiration and challenging ideas. The talk featured in this post (and at this link) is one of the best I’ve seen.
Continue reading...