Global Down Syndrome Foundation (Global) was founded in 2009 by Anna and John J. Sie and their daughter, Michelle Sie Whitten. Michelle’s own daughter, Sophia, was born with Down syndrome in 2003. Since 2009, Global has taken remarkable steps to improve the lives of those living with Down syndrome through research, medical care, advocacy and education. Its primary focus is to support the Linda Crnic Institute for Down Syndrome, an institution dedicated to research and medical care for those with Down syndrome, and the accomplishments that Global has achieved in recent years alone have been notable and awe-inspiring.
Within the realm of research, Global has pioneered and helped fund studies on the correlation between Down syndrome and Alzheimer’s. A high percentage of people with Down syndrome contract Alzheimer’s in their 40s and 50s, and most will eventually get the disease at some point in older age. The high risk of those with Down syndrome in contracting Alzheimer’s is attributed to the extra copy of chromosome 21, chronic brain inflammation and the presence of a hyperactive immune system. This gives researchers the opportunity to study those with Down syndrome to potentially understand how Alzheimer’s progresses and the utilization of possible treatments with drugs like Leukine and JAK inhibitors. This research will not only benefit those with Down syndrome and Alzheimer’s but should benefit the entire world of cognitive medicine.
The non-stop drive for advocacy that Global has provided for those with Down syndrome has allowed government research funding to quadruple in the past ten years. Thanks to the relentless efforts of Global’s president and CEO Michelle Sie Whitten and her staff, the Down syndrome research budget at the NIH (National Institutes of Health) increased nearly $200M from a baseline of just $30M in the last five years.
The ways that Global has been able to educate the public on the topic of Down syndrome have been both instructive and vast. In 2020, Global’s Medical Care Guidelines for Adults with Down Syndrome was published in the Journal of American Medical Association (JAMA) after several years of compilation and research; the first evidence-based guideline to support medical providers in their care of people with Down syndrome. A family-friendly version of the guideline was published this past June, which was aimed at inclusion and accessibility and was contributed to by those with Down syndrome and their families. Spanish and Japanese versions were also published in 2022, and more translations are expected.
Global also raises critical funds for medical care and research through their yearly Be Beautiful Be Yourself Fashion Show, the largest fundraiser for Down syndrome in the world. In 2022, the 14th annual show marked the first return of an in-person event since the start of the pandemic, and it was a resounding success, raising $2.2 million. The red carpet event included 22 models with Down syndrome; celebrity actors Christina Ricci, Eric Dane, Brooklyn Decker, Amanda Booth, who served as event chair, and several members of the cast of Grey’s Anatomy; professional athletes Ryan Spilborghs and Gyasi Zardes; and featured Global Ambassador Micah Quinones. Emceed by award-winning local 9News anchors Kim Christiansen and Tom Green, the event culminated in a runway show featuring the beautiful and magnificent models with Down syndrome and their celebrity escorts.
Global’s commitment to its mission is evident by the actions they take to advocate for advancements in research and medical care. Its celebration of diversity and equality is truly remarkable, and the amount of progress that Global has made continues to elongate lives and improve the health of people with Down syndrome.