From the news page: NHL, NPR, NIH, & Baby Gammy Update

Baby Gammy, Photograph: Apichart Weerawong/AP

Baby Gammy, Photograph: Apichart Weerawong/AP

From the News page, some good news, some incorrect news (reporting), and a new development for Baby Gammy:

  • NHL All-Star wins car for 10 y/o w/Down syndrome

Alex Ovechkin’s constant pleas for a new car at the fantasy draft. It was finally revealed Sunday that Ovie was trying to win the vehicle for the family of a 10-year-old girl with Down syndrome. Once Honda became aware of Ovechkin’s reasons, they donated a Honda Accord to the cause.

Ovechkin had met his young fan who asked him out on a date last Fall. Glad to see he’s continuing the relationship with her.

  • NPR repeatedly reports misinformation about new prenatal test for Down syndrome

Multiple times in a report on non-invasive prenatal screening, an NPR report incorrectly refers to what is tested:

This kind of test , called cell free fetal DNA testing, uses a simple blood sample from an expectant mother to analyze bits of fetal DNA that have leaked into her bloodstream.

What’s tested isn’t fetal DNA, and this isn’t news: it’s been known for years. Still, NPR’s report demonstrates the need for the NSGC’s recent fact sheet on NIPS.

  • NIH launches sub-site for researchers of Down syndrome 

The National Institutes of Health has launched a subsite of DS-Connect: The Down Syndrome Registry for researchers, clinicians, and other professionals with a scientific interest in Down syndrome to access de-identified data from the registry. This Web portal will help approved professionals to plan clinical studies, recruit participants for clinical trials, and generate new research ideas using information gathered from the registry participants.

  • Baby Gammy granted Australian citizenship

One of the biggest stories of 2014 has a new development:

Baby Gammy, an infant who was left behind in Thailand by his Australian parents in a major surrogacy scandal, has been granted Australian citizenship.

* * *

In a TV interview the Australian parents of Gammy had previously said they wanted a refund from the Thai surrogacy agency when they were told one of their twins would be born with Down’s syndrome, and would have requested the pregnancy be aborted.

“It was late into the pregnancy that we learned the boy had Down’s,” David Farnell said. “They sent us the reports but they didn’t do the checks early enough. If it would have been safe for that embryo to be terminated, we probably would have terminated it, because he has a handicap and this is a sad thing. And it would be difficult – not impossible, but difficult.”

Farnell has been previously convicted of 22 child sex offences and spent time in prison. The Department for Child Protection has initiated an investigation into the matter.

More items like these can be found at the News page. If you see an article that is newsworthy, feel free to share it with me via my Twitter feed, @MarkWLeach or e-mail me: mleach@downsyndromeprenataltesting.com.

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