Note to NEPR

New England Public radio ran a story today about birth defect testing. The full story is here.

I sent them a note in response, which I’ve included here:

To whom it may concern,

After listening to your story, the problem with almost any discussion of prenatal genetic testing with Down syndrome is that society presupposes that people with Down syndrome offer nothing to society. This is certainly not the case, as I have seen in my own daughter, or perhaps you have if you have seen her in PVB ballet productions in the past 4 years.

I believe that the issue is that expectant parents who are ignorant of Down syndrome are taught to fear the possible outcomes because it might be hard or challenging by doctors/genetic counselors who have also bought into this story.

I’m glad to have heard many voices that I know in the area in covering this contentious topic. I would have also hoped that you would have contacted the Massachusetts Down Syndrome Congress for comment as they have been instrumental in support and advocacy for families with a member with Down syndrome in Massachusetts.

Feel free to contact me if you have questions. I also maintain a blog about parenting a child with Down syndrome here:

I guess I’m an advocate.

Good news on training for the Falmouth Road Race – I’m making good progress and my knees haven’t been bothering me nearly so much, but I’ve been icing them regularly. Also, I’m approaching my goal for the MDSC, but of course I’d like to exceed it.  Care to help?  The link is here: (which redirects here). Donate or share the link too!

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