Thoughtful, balanced article.

For those of you who don’t know, there is a blood test that will be available on the market in the next year or two in the U.S. (and probably shortly after in Canada) that will be able to determine the presence of Down Syndrome in a fetus at around 9-10 weeks gestation, with a very high level of accuracy.

Some people feel that this could lead to the ‘extinction’ of people with Down Syndrome, or certainly to a very great reduction in the number of babies born with the condition.

This could have huge implications when it comes to issues such as services available in the community, integration in schools, and acceptance of our children in broader society.

Just a few comments on my part:

The London Down Syndrome Association (just up the 401) has been attending Neo-Natal fairs in that city (basically a trade show for expecting parents) for a few years now, and armed with good information and great stories, they have seen a bit of a baby boom of kids with DS.

It seems that when parents have accurate information about what it’s like to have a kid with Down Syndrome, they are more likely to choose to carry the baby to term.

The CDSS is working hard on a policy on this issue, and will be working to build awareness in the very near future, specifically on the issue of pre-natal testing.

In the meantime, I thought the following article in the Toronto Star,

http://www.parentcentral.ca/parent/babiespregnancy/pregnancy/article/1007427–earlier-test-for-down-syndrome-is-close-means-tough-choice-for-parents

was extremely well-balanced and thoughtful.  It quotes Brian Skotko, who is a Harvard educated professor, and leading advocate for the rights of those with intellectual disabilities.  Those who were at the DSAO conference two years ago know exactly who I’m talking about.  You should also know that Brian has a sister with DS about whom he tells the most loving…and hilarious…stories.

Please take a moment to read the article, it’s worth your time.

Also, just a note that this month’s exec meeting will NOT be on the 23rd, as that’s the day after the Golf Tournament, and we’ll all be knackered.  Instead, we’re going to hold it on the 30th.  Location still TBD, but I will update here once we know.  Of course if you’d like to come and help with the golf tournament, many hands make light work, and we’d love to have you.  Just send us a note and we’ll fill you in on the details.

Jason

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