Presidents’ Day: who did the most for individuals with intellectual and developmental disabilites?

TaylorTylerWashingtonIt’s Presidents’ Day: which President did the most for individuals with intellectual and developmental disabilities?Continue Reading

Our Story: A tale of two disability support programs

LN Stairs

Dickens wrote “it was the best of times, it was the worst of times”. In the past 48 hours, I’ve experienced when a system designed to support individuals with disabilities functions optimally and when it functions absurdly. 

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Experimental embryonic stem cell “treatment” for Down syndrome–any ethical issues here?

guinea-pig-1

In New Delhi, India a baby received multiple injections of human embryonic stem cells as an experimental treatment for Down syndrome. Any ethical issues here? 

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Our Story: The Long Arc of History Bending Towards Justice

MLK NHS

For Martin Luther King, Jr.’s national holiday, my kids and I toured seven National Park Service sites. They illustrated the truth of Dr. King’s wisdom that the arc of the moral universe is long, but it bends towards justice.

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Labs Band Together To Increase Coverage for Their Prenatal Tests

CAPS

I have a post at the Prenatal Information Research Consortium about a coalition of prenatal testing laboratories seeking increased insurance coverage for their cell free DNA screening tests. It addresses the possible issues raised by this coalition representing in its mission to provide useful information to providers and insurers, while also working to increase reimbursement […]

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Top Posts of 2016: Down Syndrome Prenatal Testing

Juliet & her winning photograph of her brother in the school's art contest

Here are the top 5 posts (based on views) from 2016: 

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Down syndrome: not a costly burden to be prevented

Money

Research now shows that a child with Down syndrome costs less than $3 a day more in health expenses than a child without Down syndrome. This research should cause obstetricians, genetic counselors, expectant parents, and policymakers to revise their view of how costly a life with Down syndrome really is (or isn’t). 

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GONE: estimate reduced by 20% of people with Down syndrome in United States

dsabortions

In 2013, researchers estimated that the total number of people living in the United States was 40% less than the historically cited number. Three years later, that estimate has been revised down further by 20%.

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Abortion: hard to talk about when no one will say the word

shh-shhh-and-shhh-shhh

The American College of Medical Genetics & Genomics (ACMG) issued an updated statement on how cell free DNA screening should be done. It’s not clear, though, why cfDNA screening should be done.

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