A new state law will improve the understanding of Down syndrome
July 22, 2014 12:00 AM
On behalf of the members of the National Down Syndrome Congress (NDSC), and the people with Down syndrome all across the country that we represent, I want to personally congratulate and thank Gov. Tom Corbett and the Commonwealth of Pennsylvania for enacting the Down Syndrome Prenatal Education Act (“Act Ensures Moms-to-Be Get Details on Disorder,” July 18). We also commend advocate Kurt Kondrich for his great work on behalf of the Down syndrome community. For more than 40 years, the NDSC has worked tirelessly to advocate for people with Down syndrome and their families.
With rapidly advancing technology in prenatal testing, an important piece of our advocacy is in ensuring that expectant mothers are provided the most current information about Down syndrome at the time of diagnosis. Dr. Kishore Vellody, medical director of the Down Syndrome Center at UPMC Children’s Hospital of Pittsburgh, is also a member of our professional advisory council and our board of directors. As he stated in the article, “Published data shows that less than half of people felt like their training was accurate in communicating prenatal diagnosis.” This legislation will go a long way in changing this in Pennsylvania.
It is imperative that we give medical professionals the tools they need to communicate effectively with their patients. A pamphlet we created in partnership with Global Down Syndrome Foundation can be found at www.downsyndrometest.org, and free copies can be ordered by contacting the NDSC at firstname.lastname@example.org.
As we like to say, individuals with Down syndrome are more alike than different and contribute to our society in ways often not imagined by people who do not have someone with Down syndrome in their lives. We applaud the state of Pennsylvania for taking this important step in educating expectant parents, with a full range of factual and supportive information about Down syndrome.
David Tolleson Executive Director National Down Syndrome Congress Roswell, GA
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