Thursday, July 8, 2010

Article Regarding Ds Research

This article is interesting- it highlights some of the advances in Down syndrome research and treatment, and also some of the reasons for it.

It is strange, because yes, Down syndrome is part of who Chase is, and he obviously wouldn't be the same without his little something extra...but it doesn't define him.  I've heard some people say that if they could take Ds away from their child- if there was a magic pill that 'cured' it- that they wouldn't do it.  I don't know.  I don't know what I think about that.

I do agree with the article, however, that being able to improve cognition, even 10 IQ points, would allow so many people to be more independent, to lead even more fulfilling live with less frustration.  This quote addresses the social justice argument:  “People with Down syndrome add a lot to our lives; we feel good about them. But how do we show respect for them? Do we show respect for them by saying, ‘You’re very nice people, and I’ll be kind to you?’ Or do we really address them as fellow humans and say, ‘What is it you would like?’ And what they would like is just what we would like. They would like to be working, they would like to have the option of independent living, they’d like to participate fully in the educational system, they’d like to have friends — and their learning abilities do impede their abilities to do these things.”

Also, I think an interesting point was brought up regarding fundraising:
“A great deal of the funding that has been raised for cognitive research for Down syndrome is from parents and close friends of people with Down syndrome,” says Schoen. “It’s our goal to reach out beyond.
“Unlike cancer and diabetes, I don’t have to worry about contracting Down syndrome. People don’t contract it, so unless they have a connection they wouldn’t be all that concerned about it. But we need to be concerned about everybody.
“We’ve come up with drugs to help people fight cancer. We’ve come up with therapies to help people breathe more freely. Why don’t we, as a caring society, from a fairness and social justice standpoint, why don’t we support a cause that helps a good size of the population of this country think better, learn more readily and so forth?”
Anyway.  Good points, interesting reading.  Makes me wonder where we might see this research in the future and how it will affect Chase and his little buddies.

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