GLOBAL Self-Advocates Shine at International Down Syndrome Research Conference in Denver

More than 400 leading Down syndrome researchers, clinicians, self-advocates, and family members from over 20 countries gathered in Denver this month for the 6th Biennial Trisomy 21 Research Society (T21RS) International Conference, a week dedicated to advancing research and improving the lives of people with Down syndrome around the world.

The conference welcomed attendees from across the globe, including five representatives from the National Institutes of Health (NIH), and showcased groundbreaking discoveries, innovative collaborations, and emerging research focused on helping individuals with Down syndrome live longer, healthier lives.

As a proud founding member of T21RS, the Global Down Syndrome Foundation (GLOBAL) played a prominent role throughout the conference, with experts from GLOBAL and its affiliates—the Linda Crnic Institute for Down Syndrome, the Anna and John J. Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center—presenting to packed auditoriums.

But the true stars of the conference were the self-advocates and family members who took center stage. For the first time in conference history, individuals with Down syndrome and their parents helped open the international gathering by sharing their lived experiences and perspectives on research participation during a moving panel discussion and the conference’s Science & Society program. Their stories, hopes, and calls to action received standing ovations and served as a powerful reminder of why research matters.

Opening remarks featured T21RS leadership and special messages from honorary guests, Colorado Governor Jared Polis and Congresswoman Diana DeGette, sponsor of the DeOndra Dixon INCLUDE Project Act, both of whom emphasized the importance of continued investment in Down syndrome research and advocacy.

Adding to the celebration, internationally acclaimed musician and GLOBAL’s Quincy Jones Exceptional Advocacy Award recipient, Sujeet Desai, captivated attendees with inspiring performances on the clarinet and violin.

GLOBAL Affiliate Sessions Included:

  • Global Family/Self-Advocate Panel – Bryn Gelaro, Michelle Sie Whitten, Sam Levin, Megan Bomgaars, Terrance Daniels, Jeremiah Daniels, Grace Grubb, and Patrick McClellan
  • The Experimental Models of Down Syndrome Researcher Portal – Matthew Galbraith, Linda Crnic Institute
  • Feeding and Swallowing in Children with Down Syndrome: How Clinical Research is Shaping Care – Arwen Jackson, Anna and John J. Sie Center for Down Syndrome
  • DS-Connect Overview – Angela Rachubinski, Linda Crnic Institute
  • Altered Hepatic Metabolism in Down Syndrome – Lauren Dunn, Linda Crnic Institute
  • How Advocacy and Research Just Added a Decade of Life—And Our Roadmap to the Next 10-Year Jump – Michelle Sie Whitten, Global Down Syndrome Foundation
  • Pediatric and Adolescent Health Care Guidelines – Nicole Baumer, Anna and John J. Sie Center for Down Syndrome
  • The Interferonopathy of Down Syndrome: Mechanisms and Clinical Trials – Joaquin Espinosa, Linda Crnic Institute

The weeklong conference concluded with a spectacular gala dinner at the Denver Art Museum, sponsored by GLOBAL, where Denver Mayor Mike Johnston delivered closing remarks celebrating the city’s role as a hub for innovation and inclusion. The gala also created a unique opportunity for members of the local community to engage directly with the international Down syndrome research community. Guests enjoyed special performances by Nashville bluegrass trio The Ransom Notes, whose lead fiddle player has Down syndrome, followed by a lively dance party featuring the six-piece Diamond Empire Band.

Founded with the support of GLOBAL, T21RS is the first international nonprofit scientific organization dedicated exclusively to Down syndrome research. The organization promotes basic and applied research, stimulates translational science, and advances new scientific discoveries that improve the quality of life for people with Down syndrome around the world.

                                                                            

 

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