Tracking Rare Incidence Syndromes

I had the honor to email interview Dr. Debbie Bruns who works for the TRIS project. I introduced myself but she had already found the blog.

It's interesting to me to talk to people who spend time talking and thinking through what is happening today. Here's an excerpt of our talk:

before my Ph.D., I was an Educational Therapist in a Skilled Nursing Facility in NYC. I had two girls with t18 in my class. They were three years old at the time and this was in the early 1990's. I looked for information to help me adapt materials and activities for them and found nothing. No, I did find something, literature telling me children with t18 don't survive to their first birthday.

Read her entire interview here.