Global Down Syndrome Foundation
The Global Down Syndrome Foundation (the “Foundation”) is a non-profit organization dedicated to significantly improving the lives of people with Down syndrome through government advocacy, education, awareness and fundraising for the Linda Crnic Institute for Down Syndrome.
Established in 2009, the Foundation’s primary focus is to support the Linda Crnic Institute for Down Syndrome (the “Institute”). The Institute is the first organization in the US with the mission to eradicate the medical and cognitive ill effects associated with Down syndrome through basic and clinical research and through clinical care. The Institute incorporates scientific partners both locally and globally, with headquarters at the Anschutz Medical Campus in Colorado.
BACKGROUND ON DOWN SYNDROME, HUMAN RIGHTS & CIVIL RIGHTS Historically, people with Down syndrome, like most people with an intellectual disability, were institutionalized in asylums that today would be considered inhumane. With the dismantling of the institutions by the end of the 1980s, and with improved medical care, the average life span of a person with Down syndrome went from 28 years old in the 1980s to 60 years old today. In the 1980s, the same decade that the last of the large institutions were dismantled, the Baby Doe case caused the governors of all 50 states to sign into legislation a bill that made it illegal to starve a baby with Down syndrome to death in a hospital under the guise of “withholding lifesaving procedures” from a child that would not have a “good quality of life.” People with Down syndrome enjoy more human rights now than historically, but these human rights are constantly threatened by government representatives and entities that see “earlier and better pre-natal detection” as the “solution” to any “Down syndrome problem”, meaning an increasing number of women will terminate their pregnancies upon receiving a Down syndrome diagnosis. Down syndrome is the most frequent chromosomal disorder with 1 in 691 live births resulting in the condition. An estimated 400,000 U.S. citizens and almost 6 million people worldwide have Down syndrome. Despite the large number of people with Down syndrome, in 2010 the U.S. National Institutes of Health allocated a mere 0.0007 of its $31 billion budget to research for people with Down syndrome. The Foundation believes that it is every US citizen’s human right, including people with Down syndrome, to know that their government (1) sees them as valued human beings and equals, (2) is not engaging (advertently or inadvertently) in eugenics against their population, (3) is investing in research that would help its citizens better attain their potential, and live healthier, more productive, and longer lives.