Our Story

Bill and Will HarmonAbout Global Down Syndrome Foundation

The Global Down Syndrome Foundation is a public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through Research, Medical care, Education and Advocacy. Formally established in 2009, the Foundation’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the United States committed solely to research and medical care for people with Down syndrome. Since Down syndrome is the least-funded genetic condition in the United States, fundraising and government advocacy to correct the alarming disparity of national funding for people with Down syndrome is a major goal.

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Our History

In 2006, John and Anna Sie organized a summit gathering some of the world’s best scientists, including Nobel Laureate Tom Cech, to explore the possibility of break-through research for people with Down syndrome. That same year, the idea of the first academic home for Down syndrome research was born.

Read more about the history of the Global Down Syndrome Foundation.


Meet the people behind the Global Down Syndrome Foundation, including our board of directors. Also get to know the leaders at the Linda Crnic Institute and Anna and John J. Sie Center for Down Syndrome.

Read more about the Leadership of the Global Down Syndrome Foundation.


A group of highly talented and motivated people manage the day-to-day business of the Global Down Syndrome Foundation.

Read more about them here.

Linda Crnic Institute for Down SyndromeThe Linda Crnic Institute

The Institute provides the world’s first fully integrated institute for Down syndrome with the highest quality basic, translational and clinical research, clinical trials, therapeutic development, medical care, education and advocacy in the pursuit of the mission.

Read more about the Linda Crnic Institute.

Anna and John Sie

John and Anna Sie

Anna and John J. Sie Center for Down Syndrome

The Sie Center at Children’s Hospital opened its doors to patients with Down syndrome from all over the world and the US in November of 2010. The Sie Center is comprised of a multi-disciplinary “Dream Team” of experts with more than 80 years of combined experience in caring for children with Down syndrome and developmental disabilities.

Read more about the Anna and John J. Sie Center for Down Syndrome.