Denver! Part one the Round Table
“WoW” is still where I am about the convention and it has been a week.
The Denver Convention Center
We have never been to the National Down Syndrome Congress convention before. We have chugged along in our own world and I think we have done pretty well. Dev knows she has DS, but we don’t really ever talk about it. It has not been a pro or a con, just “is” in our lives.
Being at the conference Dev (and I) had a lot of fun, but she (and I) also had a bit of a reality check.
We started at the Medical Round Table hosted by the Global Down Syndrome Foundation.
What an amazing amount of work they have done in a relatively short amount of time. They started with 2 labs and now have 16 working on the basic science of DS. Lots of cool stuff coming out in genetics and biochemistry.
I was amazed at the notes Dev took, 5 pages of tiny writing (I need to take a picture of them). My favorite is from the Alzheimer’s panel, the parting words were that environment still made a huge difference in the presentation of the disease. It was a picture of 2 mouse houses, one with toys, exercise equipment and good food, the other with just the mouse. Dev made quick sketches of each and captioned each with the sentiment: happy, active= no Alzheimer’s, board, lonely=Alzheimer’s.
I think we all fear AD, so adding it to the DS world is overwhelming, but I have hope that the science with help all of us as time goes on.
Science is also working hard figuring out the brain chemistry of learning, memory and the like. If there was a pill that would improve Dev’s cognition would I give it to her? If it made reading/math and life skills easier, why not…. Would it change her personality… make her less positive, or empathetic or hard working… I would hope not…
There are so many questions and lots of different answers. For Science to help answer some of the questions we need more research…. We need to be active in getting a registrar so we can have the information. We need to fund the labs. We need to be a voice for what we want… We need to go to more conventions, move out of our comfort zones and work together to find some answers before the “other” science removes DS from the human population…
Tell me what you think…
