Obamacare and Trisomy 18 Families — Some facts on the table.

Capture

A discussion broke out this last week on Facebook about the Affordable Care Act (aka Obamacare) among our parents,  sharing fears fueled by conservative media outlets that Obamacare will inevitably lead to rationing that will deny care for their disabled children or children they know.  I thought I'd share a series of posts this week about some details to keep in mind. My approach in representing families' needs in National Policy discussions starts from the fact that the ACA is the law of the land and regardless of our political leanings or … [Read more...]

How could Trisomy 18 possibly be preventable?

Karotype

Full Trisomy 18 happens when there is an error in cell division that makes eggs or sperm before conception called meiotic disjunction. But what causes that error to happen and to happen as frequently as it does in human reproduction is what is NOT known. However, the biomedical research community is working on many, many promising leads that could nail down what causes these errors to happen and that knowledge is the first step to developing a way to prevent those errors from happening. That way a baby would never develop Trisomy 18 syndrome in … [Read more...]

A Very Special Birthday for a Young Man with Trisomy 18 | DNA Science Blog

The Road Ahead_marsh bridge

THIS IS WHAT CHANGES LOOKS LIKE! Wonderful article by Ricki Lewis, Genetic Counselor/Author of many Genetics Educational Texts and other Books on Genetics, on how she "used" to think about Trisomy 18 before reading Donnie Heaton, nearly 21 years old, and his mother Karen Heaton in the Tampa-Bay Times article we shared widely about earlier! This is what the vast outreach causes to happen -- we get on the radar screen of major authors and influencers that also reach and educate vast numbers of their colleagues.  Read the entire article here.  … [Read more...]