New booklet for parents whose children are diagnosed with Down syndrome
Posted May 06 2011 12:50am
If money talks and it does, that the National Institute of Health is telling us, "eliminating babies with Down syndrome is a priority to us". Listen to this: the NIH funds autism research to the tune of $181 milllion but has yet to fund ONE DOLLAR of research to treat Down syndrome. They didn't even have a research plan till a grassroots movement of parents and the newly formed Congressional Down Syndrome Caucus and forced their hand, and only recently they asked if IF they should fund research to help those with Down syndrome overcome some of the cognitive deficits.
Now I find out that the NIH has funded million in research for search-and-destroy pre-natal diagnosis.
Last week, Gene Security Network announced a 2 million dollar grant from the National Institutes of Health (NIH) to conduct a clinical trial for non-invasive prenatal diagnosis (NIPD); however, the Prenatally and Postnatally Diagnosed Awareness Act that passed unanimously in 2008 to provide information about conditions, like Down syndrome, has gone unfunded for the past three years. One testing company has already announced more advanced prenatal blood tests for Down syndrome to be released this fall, meaning more accurate testing will be available without the accompanying information needed to support the patients.
Thanks be to God the National Down Syndrome Society has funded an informational booklet to help parents whose unborn or newborn child has been diagnosed with Down syndrome. The CEO of Lettercase who produced the booklet describes it;
"Our booklets give patients the full scope of Down syndrome with information that has been vetted by both medical and disability experts. It is essential for both the federal government and testing companies who are putting funds toward testing to also invest in credible patient education. It is essential that we establish a model, not only in theory but in practice, for responsible testing as this technology continues to evolve for more and more genetic conditions."
So despite the failure to fund the Prenatally Diagnosed Conditions Awareness Act, this booklet will be doing what that bill has not been able to do, inform parents with the truth, not with outdated stereotypes.