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Response by Down syndrome advocates
Children with Down Syndrome are disproportionately affected by genetic pre-screening, as current statistics indicate that 50% of fetuses with Down syndrome are aborted. Down Syndrome activists have responded to this disparity by testifying to Congress and raising awareness regarding links between Down Syndrome and Alzheimer’s research.

Actor and Special Olympian Frank Stephens is one of the most prominent Down syndrome advocates. He has testified before Congress to argue for appropriating funds to support research that would benefit individuals diagnosed with the disease. The primary organization he promotes in his work is The Global Down Syndrome Foundation. Its work centers on addressing research on conditions that disproportionately affect people with Down Syndrome, including congenital heart conditions, sleep apnea, and Alzheimer’s disease. He also emphasizes research that indicates that people with Down syndrome and families with individuals that have Down syndrome tend to be happier than the average population. A Harvard-supported research study indicates that 99% of individuals with Down syndrome are happy with their lives, an indicator of a positive self-concept. In addition to research promoting livelihood for people living with Down syndrome, Stephens also highlights the opportunities the Down syndrome community presents for Alzheimer’s research.

Approximately 50% of the Down syndrome population will develop Alzheimer’s in their later years. Alzheimer’s disease is characterized by the buildup of amyloid precursor protein and subsequent beta-amyloid plaques in the brain. Although most individuals with Down syndrome have these plaques by age 40, not all people with Down syndrome develop disease. Therefore, the Down syndrome population offers a unique quality to researchers to investigate why some individuals with Down syndrome develop Alzheimer’s and others do not.

Above all, Down syndrome advocates want parents to make an informed choice before terminating a Down syndrome pregnancy. In other words, rather than promoting a “pro-life” or “pro-choice” stance, these advocates encourage people to adopt a “pro-information” stance. These proponents believe that a Down syndrome diagnosis should be the start of learning about life with Down syndrome and promote more balanced, positive education about Down syndrome in clinics.