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Down Syndrome NSW
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Saturday, 27 July 2013

Weekend reading and viewing: 27th - 28th July 2013

Brother's movie is act of love for sister with Down syndrome
Bill Stevens, Tampa Bay Times, 21st June 2013
Bobby Marinelli slipped into his sister's bedroom with a script and a yellow sticky note: "Let me know if there is a part you think you'd be good for.''

Temple Terrace dancer with Down syndrome delights audience
Joyce McKenzie, Tampa Tribune, 23rd July 2013
So you think you can dance? If so and you're contemplating a crack at being a contestant on the Fox Network TV show or some other dance competition, you may be inspired by 20-year-old Thalia Arbelaez, whose mindset since early childhood has been to "reach for the stars."

As you would expect, much of the media attention on Down syndrome this last week has been related to the research published last week, that demonstrated that the third copy of Chromosome 21 could be 'silenced' in trisomic cells in the lab. The possibilities have given both scientists and families much food for thought. The following links are only a small sample of the diversity of responses. The last one also considers the distressing story from the US, about the death of a man with Down syndrome in the US, in January:

Brendan O'Connor, Irish Independent, 21st July 2013
Brendan O'Connor nearly crashed the car when he heard that scientists were holding out the prospect of switching off the extra chromosome that leads to Down syndrome. As parents of a much-loved child with the condition, he and his wife discussed the issue and found it raised profound questions about what makes us who we are.

Three Reasons Why We Might Not Want to Cure Down Syndrome
Amy Julia Becker, Thin Places, 24th July 2013 
... on the whole, this research has me worried. I’ll try to explain why ...

A major discovery in Down syndrome
Emily Davidson, Vector (Boston Children's Hospital), 25th July, 2013
Last week, researchers at the University of Massachusetts published a fascinating and important study on Down syndrome in Nature. Lisa Hall, PhD, Jeanne Lawrence, PhD, and their colleagues were able to effectively “shut down” the gene activity of one of the three copies of the 21st chromosome in cells with trisomy 21. What exactly did they do? ... Does this pose an ethical dilemma? 

A Few Notes on the Invisible
George Estreich, Biopolitical Times (guest contributor), 23rd July, 2013
I’m just home from the annual National Down Syndrome Congress convention, and even given the fact that Down syndrome lands in the news with regularity, there were two big pieces of news during the week I was there.

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