Down Syndrome Awareness

Oct 31, 2011

Guest Post by Dr. Karen Summar, Joseph P. Kennedy Foundaton Public Policy Fellow.

Down Syndrome Awareness has been a daily activity for me since September 2, 1990. That is the day my beautiful daughter, Rachel, was born. She, like every one in 700 American babies, was born with Down syndrome. October is Down Syndrome Awareness month, and this particular October brings another major development in the history of the condition. It was announced this month that there is a test that uses a sample of the mother’s blood to determine if a fetus has Down syndrome is ready for general use. Promotion of the test suggests that it is a a “game changer” in the field of prenatal diagnostics. In many ways, this statement is correct but we need to consider all the ramifications of this change. The unspoken presumption is that most positive results will result in recommending termination of the pregnancy. This reality needs to be faced openly when professionals and parents discuss this type of testing. I think of this test as a reason for each of us to pause and think of the implications of where this leads us as a society. These issues are complex, personal, and have broader implications beyond children with Down syndrome.

October 2011 will also be remembered as the month that we lost our beloved advocate, Dr. Allen Crocker. Dr. Crocker, the father of developmental pediatrics, spent his career working to improve societal perceptions of people with Down syndrome. Although he will be greatly missed, Dr. Crocker left his legacy by training many, many physicians. His legacy lives on through them and through the acceptance of individuals with Down syndrome that hasn’t always existed. I cannot help but be excited for the future for Rachel and members of the DS community.

Legislative Update: My boss, Congresswoman Cathy McMorris Rodgers, along with the other co-chairs of the Congressional Down Syndrome Caucus, hosted a briefing (October 25, 2011) about the current state of research in the field. We heard from researchers who are making new links from the clinical world of Down syndrome to the rest of medicine. DS is teaching us new ways to look at Alzheimer’s disease, aging, heart disease, and cancer. This research helps everyone and without a focus on DS from high-caliber scientific teams wouldn’t happen. It’s important that we continue to foster and support this type of work as we all benefit from it.

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