The Time For Action – Race & Down syndrome 

“Action expresses priorities.”

What we know :
Life expectancy by race

Center for Disease Control: June 08, 2001 / 50(22);463-5 http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5022a3.htm
ABC News reported this in 2001:  “The National Down Syndrome Society said the study indicates a “serious disparity that really needs to be addressed.””

A position statement from NDSS says: “It is clear that more needs to be done that is specifically targeted to those who are black and of other races.”

In 2012, another study found:

  • Non-Hispanic black children with Down syndrome were twice as likely to die during childhood and adolescence compared to Non-Hispanic white children with Down syndrome.


In October, 2014, super model and spokesperson for Global Down Syndrome Foundation is quoted in She Knows

  • “There’s a remarkable disparity between children of color who get Down syndrome — life expectancy is age 23 — and non-black children with Down syndrome — life expectancy is 63 years old,”

  • “The median age at death for whites with DS increased from 2 years in 1968 to 50 years in 1997…
  • For blacks during the same period, the median age at death increased from 0 in 1968 to 25 years in 1997…
  • For persons with DS of other racial groups, the median age at death was 0 years in 1968 and 11 years in 1997.”

How do we Express Priorities?

There is very little awareness about this issue within the Ds community.

Action is needed.

Ask all of our national organizations

  • 1) What has been done in the past 10+ years?
  • 2) What can we, as parents, do to help?

Help us make this issue a priority.

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