Everyday, I look around and see a commercial for Autism. Or for Cerebal Palsy. Or some Irritable Bowel Syndrome. Do you know the last time I saw an ad to bring awareness to the public regarding Down syndrome? Never. I am not saying they don't exist, but rather they are not at the forefront of our attention. Which, in my opinion, is an issue for our population who happen to have Down syndrome.
I believe a portion of the issue is that the Down syndrome population is so fragmented. There are currently ~400,000 individuals with Down syndrome living in the United States. There are three (or four) national organizations representing these individuals, and a host of local Down syndrome associations representing them in their communities. However, we do not have one voice when it comes time to approach the NIH for research funding, nor do we have one voice when it comes to fundraising for our own research objectives.
There is no central organization to lobby for funds. There is no central "mouthpiece" to coordinate public relations. There is no concerted effort to re-educate and re-arm clinicians with the proper tools to adequately prepare potential new parents on how to handle a child with Down syndrome. This is a major disservice to our own children, and the children for the forseeable future. We can continue to fight and struggle as a fragmented population, and we can bring change. But it will be small, and it will go unnoticed.
Clinicians will continue to recommend abortion, and misinformed potential parents will continue to take the advice of said clinicians. Individuals with Ds will continue to be excluded from clinical trials and mainstream medical research. And we will continue to battle for research on something other than prenatal diagnosis. In my opinion. to no avail.